Our Baby Thomas

Right Where I Am: Three years Two months and Twenty Seven days

2011-05-27T22:29:00.002+10:00

still life with circles: Right Where I Am Project: Two Years, Five Months.

I am taking part in the Right Where I Am project that Angie is hosting. Click on the link above to see the stories that others have written.

This is right where I am.

In a moment I can tap into the feelings that bring a prickling sensation to the back of my eyes, and the knowledge that I am about to lose control. I am feeling the pain and helplessness and disconnectedness to my world because I can see myself standing beside an infant crib in the neonatal intensive care unit of a very large hospital for children. My child lies there.

In the second moment I am holding my breath, with tears welling in my eyes I am trying to blink away the confusion of how that happened.

I draw a breath and blow off the disconnectedness and confusion and I feel as though those months of his life were fleeting and so brief. I am disappointed that I didn't do something differently. And I cry tears that make my cheeks wet and my nose run. Who knew that 135 days can flash past so quickly. I approached each day fairly patiently believing that the day was just one of the days that it took for him to get better, so he could come home. I didn't know each day was a day that it took to get to the point where his illness took his life. I was holding onto hope. Why would anyone want to do anything different to that?

And then he died. I am resigned to that part of the experience. It's the one solid place I can stand. He did definitely die and it was definitely 1,183 days ago. He was ready and so were we.

A few minutes later I am focussed on my life today and where I am now. Grief feels like this to me. Sudden and strong with anxiety and then back to calm and rational seeing how far away I am from those moments.

At some stage of this grieving process I feel like I passed from being a girl or woman, to being a person, I feel like I left stuff behind and that makes me feel like there is a possibility that I can be simple and free. I just don't care for superficial small talk. I don't like to talk on the phone anymore. I am much more likely to say no now that I am three years + out. At the beginning I was so desperate to have contact with people who could make me feel better, or feel nothing, or feel something else, that I said yes to stuff that was clearly unhealthy for me. Doing stuff that made me feel stressed was a way of avoiding how I really felt.

My life today is a series of reinventions. After the crisis of Thomas' death I began a search and rescue mission, looking for the pieces I left behind beneath the rocks I hid them under. Now I have collected the pieces that were most resilient and I am working with them. some might say that I am starting with the hardest ones first but I am in am in recovery mode, so I am doing the most important ones.

I am reinventing my career, studying and working with kids with disabilities. Going really well, it has taken some real courage to be able to honestly tell people (who matter) why I am doing it.

I am reinventing my body, losing weight. Going really well, I am down 31kg. And its scaring the shit out of me, I have moments of wanting to be fat all the time and its a battle I sometimes lose.

I am reinventing my relationships and marriage. Well I haven't actually got very far with this one, but my marriage has survived at least.

I didn't even know that I could work in the disability sector, I felt drawn to study so I applied, the whole time I just couldn't imagine how I would behave when I met someone who had Down syndrome. And what if they were called Thomas. How would I do a job in the disability sector if I had to avoid all Thomas' with Down syndrome? And what if they were a child? How could I cope with that?

I am starting to think that its the unfulfilled parent in me that wants to work with kids with disabilities. I never ever had the desire to work with kids before. At first I thought that the unfulfilled parent reason is a bad and unhealthy reason to want to work in this field. But now I think it makes me passionate and committed. I just want to see that anything is possible when it comes to a kid with a disability and workers that will step up to a challenge. In a placement that I am doing at a kindergarten I work with one boy with Autism, the rest of his kinder friends are kids headed towards the mainstream system. It has been my test case scenario, somewhere that I can dip my toe in the water to see if I can do it. It seems I can.

Today I had some amazing feedback. We had a meeting, a Psychologist, Speech Pathologist, the kinder teacher, me the Aide and his Mum. We had an hour of going over all the things that could be done to help this young man move towards school readyness. They acknowledged the things I am doing with this young man and all said that he has progressed because of it, they said it over and over. It's a wonderful place to work, I am loving it. Kids are great people. It's not like being a mum when you work with them.

One of my weightloss goals was to be able to ride a motorbike. This picture shows me having a go. I have had two lessons so far and I haven't damaged any property or fallen off. I look like I am doing it right, don't you think. I don't know if I will go and get my motorbike licence but I am now in a space that I can do that if I choose to. And we have a spare motorbike (now that my husband has bought a bigger one), and I have the gear (so I can go places on the back of his motorbike), I just need the confidence (it is building).

I need to see the big picture not the small scary one that sneaks up to me and tells me that I will never be skinny for any amount of time, I will never be successful, or loved, or whole. I need to see the big picture that tells me that this is just a hump that I will defeat on my way to victory. I can be a healthy body weight and I can be active and I can be successful and I can defeat that sneak who whispers to me "you can't".

That is where I am now, getting more confident, taking charge in some areas of my life, moving toward a career that I have chosen because of Thomas. And grief is still there just as strong, but for shorter periods of time, and I now accept it's arrival because its a familiar feeling now, it is a part of me that I would never wish away. It's proof that I love.

RIP SM

2011-04-12T20:58:00.000+10:00

I went to a funeral yesterday. This post is about my reflections on the funeral and about my friend SM.

For my job I work with people who have an Acquired Brain Injury. I do support work. I help people to achieve as close to an ordinary life as possible after a devastating injury caused by a transport accident. I work with a number of adults each week. One of the people I work with is SM, and he died on the 8th April, last Friday, in the morning at 8.55 am. I painted this portrait of him in August 2009.

I write about SM in my other blog, I have reflected on his situation for the purposes of my homework and assessments for the course I am doing. I am not telling you his name on purpose, and on my other blog I don't use his correct name either. I have worked with him for 2 years, we went out mostly. We have been to the zoo, imax theatre, many beaches, a farm, wildlife sanctuary, the movies (lots of them), shopping, live theatre shows, the library, art galleries, appointments, and on the Friday before he died, we walked the recently completed labyrinth at a local gallery (has significant outdoor sculpture).

That's the background. He wasn't always the easiest person to work with. He didn't say much, didn't eat or drink (he was peg fed), he hated watching me eat or drink (because he loved food). He was often grumpy or downright angry, and even more often he was anxious. But he smiled every time I pointed the camera at him though, he loved having his picture taken. He liked having nice hair, I was planning to take him for a haircut last Friday but all shifts were cancelled because he was sick in hospital. Instead he took his long swept back fringe to the grave.

It was an open casket funeral, and because his family are from India, it was entirely different (culturally) to any funeral I have previously attended. They are christians, so Bible passages were read, songs sung. There was a song sung in Tamil (his first language) which tells of God's comfort being so complete that He is like a mother. The singing was unaccompanied, the singers simply singing, no trills or frills or even eye contact with the mourners. They were simply singing their heart to the Lord. SM lay in his casket in front of the lectern, uncovered, eyes closed and dressed in a very smart blue suit with a fresh white shirt and silk tie. His mother was crying that she wanted to see him like this on his wedding day, looking handsome. He was very handsome. All the mourners were touching him and crying over him and kissing him, his mother was whispering in his ear in a language I don't know, she was devastated, they had to lead her away from him so they could close his casket. She was sobbing, along with many of the men, loudly.

There were about four young children there. One little girl (his niece) who is about three kept asking why he was sleeping and why he was so cold, why didn't he talk. She kissed him and said goodbye. Then asked to say goodbye again. They expressed their grief so openly, unashamedly. It was so sad, and very beautiful too. The funeral was all about how he has run his race and he has gone to the Lord with all his requirements fulfilled, he can now rest peacefully. As he was the eldest son of the family, his parents were recognised for bearing the loss of their first fruit, the position of eldest son is very important in his culture.

I really wanted to take his picture lying in his casket, but I didn't have the courage to ask. He looked very peaceful and lovely, which is unlike his usual look. I don't want anyone to think I am strange, so I didn't ask. He was so still and straight, an unusual posture for me to see, but for the family he was handsome and smart.

I just keep looking at this photo because of his eye. It's almost the last picture I took of him. In life he was confronting to look at, usually dribbling, one side of his body relaxed and unresponsive and one side constantly in motion, tense and experiencing tremors and rigors. He was often muttering strange things, or calling out "please help me" or "I am the King". In this picture (which I have seriously cropped for effect) he is drooling and his head is at an unnatural angle (exactly how he liked it), and the seatbelt was obscuring his face. I didn't even ask him to smile because I was taking the photo for documentation reasons (we had been having a discussion about the safety of the fittings in his car and wheelchair).

He was buried, after a few graveside words we were invited to sprinkle dirt over his casket. The casket was very deep in the ground. I am sure it must be a family plot where others can use the same resting place. Similar to the one we will share with Thomas. It's kind of strange to know your post life address. The family left the graveside and people just dispersed. There was no gathering afterward, people just left to continue their grief privately.

I went home and had a crappy day. Nothing could cheer me up, I tried chocolate, shopping, movies, walks, a workout, shower, comfortable clothes. I was just sad and p'd off with the world. I feel better today, I have processed. I suppose I had to write this, have my own little send off for you Mr Marini.

RIP SM

I took the plunge today

2011-04-08T20:56:00.001+10:00

Today when I was asked the ages of my children, I took the plunge.

I took a breath and said "well", then I said "I have two that are older" (it makes them sound geriatric). "They are 27 and 24 years old". "Oh" said the asker. "Then" said I, "I have a teenager who is 15. And I have another child who unfortunately died"

I messed that up didn't I! He unfortunately died.

The asker didn't say anything about me looking too young to have children in their mid twenties. That is usually the next thing that is said. Instead she went for the I'm sorry response. Her unexpected response blew me off my train of thought because it's not what people normally say. Unless they are a bereaved parent too. I looked at her sideways and said "thank you".

I told her that his death was fairly recent so then she wanted to know how old he was and when he died, so I explained his story, adding the details of the extra chromosome, and about his birth defects, and his struggle to live, and the complications of an extended stay in a germ laden environment, and how that complicated things further. She seemed sympathetic, and commented that it sounded like he really fought to stay. She also said that it must have been so very hard on our whole family.

I took another plunge and asked her if she had also lost a child and she said "yes". She told me about her son who was diagnosed with a fatal condition at 20 weeks, she said that she delivered him at 22 weeks, and that he was stillborn. I asked more about him and asked his name, because I now know that everyone has a name for their child. People who haven't been there will probably ask "did you name him?" It made me want to cry when she said his name, who knows how often she would get to say his name. I told her Thomas' name too.

I told her about the support that I get from all over the world in blogland. She told me that her mother in law was the person she talked to most (her mil had experienced significant grief and knew the value of an open chat)

Sometimes when you take the plunge it pays off, in that you don't go crashing straight the bottom. Even when you fill your pockets with rocks of statements like "Unfortunately he died"

Goodnight Thomas, if you see Ryan anywhere up there, tell him that I met his mum, and we talked about you both.

Hope

2011-03-07T10:30:00.001+11:00

What a beautiful day it was on Saturday. You can't help but have hope when the water is as sparkly as this. There was nowhere else I would have rather been at that moment.

The water was so clear and blue, the seagulls were just checking me out as I walked. The tiny fish were just centimetre's from my toes at the edge of the water. I got a little bit sunburnt, but I had my hat on. It was the perfect temperature, warm but not hot. There was hardly any wind on the sand, just a little balmy breeze, when at home (which is only 4km from the beach) it was really windy.

I have had some not so good news with my health. I lost quite a lot of weight last year, using C.K the website. But then I was away for about 8 months and I have put some weight back on (about 7kg's). On Friday my BP was 159 on 52, its a weird reading. Because I have Diabetes and because a blood test shows some small signs that my kidneys are not happy, this BP reading means that I am a candidate for Hypertension medication. Which I naturally want to try and avoid.

The possibility of having to take Hypertension medication when you are still in your 40's is enough to make me think about my life, my whole life. Do I want to be sick until I die, or do I want to be healthy and active and happy. What sort of quality of life do I want? Of course I want a future with lots of experiences and love, happiness and relationships, and freedom from health issues seems to be the key.

I know that BP medication does not signal that I am about to become infirm and climb into a wheelchair. It does make me think about my expectations for my future, and I expect to be here for quite a lot longer. How much longer I wonder? It's not something that I have ever thought about or even attempted to visualise what I would look like in old age. I am not quite at the point where I can see myself as an old woman. I joke about being old when I get out of a comfortable chair and my joints are all stiff and sore. And I blame old age when I limp in the mornings before my feet get warmed up, and I try not to look Granny like now my eyes are losing the ability to easily focus and I have to get my glasses to thread a needle.

The Doctor said to me, "I'll give you 3 months to lose some weight and get your blood pressure under control. If it's still high, I will put you on some medication."

So now I am back to weight loss mode and loving it. I love C.K, it's so into details, and I know it's the details that count when I lose weight. Details like minutes and grams. I love it when my calories consumed and exercise calories burned, add up to the right number at the end of the day. I have been back for 2 days and I feel good, I feel like I have been un-puffed. My puffy fingers and face are looking and feeling more normal. I am on the toilet a million times a day. Flushing all that fluid away.

I have lugged this weight around for the last 30 years. It's time to get it out of my life.

It's also time to have some hope for the future. I am going to embrace the idea that I will get old and probably be a granny, but I have hope that I will be as active and healthy as possible.

I Have Nothing

2011-02-28T09:00:00.000+11:00

I have Nothing

Nothing new to feel

Grief mows me down

I dodge it sometimes

Today I didn't try

The Anniversary day

Nothing new to say or blog
It has been said, written
Fading now to forgotteness
Greeting card genuine
Trauma obscured

Nothing new to show
Photographs, movies
No birthday cakes
First steps, smiles, teeth
Baby onesies never outgrown

Nothing new to hear
No laughter no cries,
Nor the sound of his name
His running feet
All quiet in his grave

Valentines Day ATC

2011-02-09T08:35:00.001+11:00

Its Valentines day soon, it is next week actually, and I thought I would participate in the art trading card (ATC) swap that Angie is hosting over at still life 365.

I posted it Monday morning which is a bit late I think to get it all the way to the US, but I was just too slow to send it on Friday afternoon. It probably wouldn't have travelled very far over the weekend anyway. I hope it gets to Angie on time for this year or I suppose I will be early for next years swap.

Here is my card. It's the first one I have ever made.

It is really surprisingly very small. I made it with paper, sewing thread and a needle and glass seed beads. It is 3 layers, blue card on the back with a message written in pen, heavy sketch paper, and a fancy paper. The back of the sewing is hidden by the layers.

I enjoyed doing it, I took too long, I was learning as I went which is how I like to do stuff.

Did you receive a valentine card this year, or have you ever done an ATC swap?

A Thousand Things

2011-01-19T08:17:00.001+11:00

Christa Wells A Thousand Things

Wow, I found the words on Genevieve's amazing post "The wound that blinds" over at Turquoise Gates. She has tagged her post with words like "soul audit" and "God's deeps", she is an amazing writer.

I am blown away at how she has described the wound, without condemnation, just describing as normal and "just is" it's all OK. This wound is not some new dysfunction that I have dreamed up to prove to the world that I am in need of attention.

It. just. is. fact.

These words come from the song

You're gonna cry yourself to sleep.

'Cause for the moment all that you can see is what is lost, lost

Why me?

But in the midst of the most exquisite pain

You're drawn into a peace that you cannot explain.

And the praises you sing of a sovereign God

reach the girl whose last hope is gone

She never thought there was purpose in anything here.

Now the seed has been planted and it's taking root

You didn't know.

You're gonna cry yourself to sleep.

A thousand miracles you'll have to wait to see.

Exit; A Decade, Tonight

2010-12-31T18:59:00.005+11:00

So much stuff happened in this decade, for me. A lot of it was bad stuff. The sort of stuff that makes me want to say, I don't want to remember why I decided,(or didn't) did, chose, refused, hated or loved it kind of stuff.

Hindsight
is
a wonderful
thing

Especially if you like to beat yourself up and second guess your life decisions.

And sometimes I do, and, I would like to categorically state that I do not like that about myself.

The Y2K bug, it had nothing to do with me but hindsight tells me it was probably the biggest hoax the world has seen.

I celebrated a few New Years Eves, too many alone, I had some birthdays including a "40", bought cars (only 2) and changed jobs heaps of times. I got married, my eldest sons had their 18th and 21st birthdays and moved out of home. And one came back twice. My 3rd son lives with us at home still (because he is a teenager), he has grown so much in this decade and has had so many life experiences which are all his stories to tell, not mine. He knows too much about death.

I had many many house guests, some for one or two nights and others for weeks and months. I discovered Jesus and developed my faith. I spent a lot of money on cigarettes and clothes, my weight went up and down so consequently I don't fit into very many items in my current wardrobe.

I was pregnant and gave birth to Thomas, my 4th son at the age of 43 and buried him at the age of 44. I used to think that 44 was my lucky number, now I think its one of pain. I have grieved heavily, I have battled sickness and depression, I spent quite a bit of time in court for family law.

My income fluctuated from around 12 thousand one year to over 40 for another one, and I think they were back to back.

It's been a crazy roller coaster kind of ~~year~~, ~~decade,~~ life.

I don't know whether to love it or hate it, but I am glad it's over and I can have a fresh start.

The highest point was getting married in 2006, the lowest point was Thomas' death in 2008 or it was a point somewhere in mourning his loss. Actually I think it was the morning after he died, the minute I woke up and remembered he was dead, I just felt so lost at that point, so wracked with grief, it was the lowest point.

So now, a new year comes and the chance for a fresh start. I am going to choose to learn about me this year. I am going to study me and find out why I do stupid things. Well that's the plan.

First I am going on a research assignment, and write down my timeline, look at the places and spaces I have occupied and see if I can find patterns and things. Then I am going to think about the things that have motivated me to behave in certain ways. I am going to see if there is a trigger that I can neutralise and a grown up behavior that I can substitute for behaving badly. I will try and understand what motivates me to manipulate others and learn about my capacity, and in doing that I believe I can recognise the signs that I am overwhelmed and ask for help.

I hope I am successful, because it sounds like a good plan. A step by step plan, which will not go step by step I am sure.

Goodbye 2010 and the 200th decade

Hello 2011, we are at the start of decade number 201 and I hope its going to be an improvement on the last one.

Are you planning an overhaul for our 201st decade?

Happy Birthday Thomas

2010-10-17T10:21:00.008+11:00

It's Thomas' 3rd Birthday today

I would like to have a little boy at home, who just turned three right now. It is an age that I enjoy, three year old's are chatty and they have excitement for the world, they love to be busy and they have independent moments. I love that their imaginations are are on overdrive, even if that causes them to be just a little bit naughty.

I know that Thomas wouldn't have been the usual 3 year old. He had challenges, I know that. He may have just mastered the art of sitting up by now, he would have had significant developmental delay.

We may have spent most of his short 3 years in the hospital. We would have spent many thousands of dollars on medications, equipment and aids.

We would have held our breath whenever he de-saturated because of a hypertensive event and was dangerously close to death, we would have sighed with relief every time he pulled through. And we would have thanked God that he lived every single day, thanked God for one of the best Children's Hospitals in the world being almost on our doorstep, and prayed that He would get us out of there as fast as he could.

But that didn't happen. It doesn't matter how much we wanted him to live. His little body stopped working and that's just what happened. Nothing changes that.

So, we went to the Queen Victoria Market in Melbourne to "do" something on his birthday. It's a place that we went to quite often during the season of Thomas' life. There are lots of memories there. It was handy (sort of) to the hospital, we only had to get on one tram and it went from out the front of Ronald McDonald house to the west side of the market. The food stalls and delicatessens are all on the east side so it was still a bit of a walk from the tram, an easy walk if you didn't have anything to carry or if it wasn't a very hot day.

Today, on Thomas' third birthday this is what we did at the Market, we found hard rock lollies that had Happy Birthday written inside them. I managed to save 2 little pieces so I could take a photo of them.

And at 2 small cafes side by side we bought Pizza slices, Chicken Burrito and Omelet for lunch.

We bought the Omelet because it was called Omellet a Lo Thomas, and because we like omelet.

We had cake from the cake shop. We bought some Turkish delight too. Lucky we are all big people or we might have had a sugar rush tantrum brewing up by now.

We bought some little wooden toys from the stall that Thomas' other wooden toys came from, and we bought a bone carving from a Tongan man. There were buskers and even an art installation (made from vegetable boxes and chalk writing on the footpath) made by some university students to highlight sustainability. Then we came home.

It was a good day. It was good to do something different, to use Thomas' birthday as a reason to go and do something together and to speak his name.

Angie at stilllife365 posted my poem today in memory of Thomas. Thanks Angie. It would be great if you went over there and read it.

Thanks to everyone for your messages today.

Treasures from a Golden Box

2010-10-10T19:08:00.006+11:00

There is a sparkly golden box in the corner of my bedroom. It carries inside a few small keepsakes. Never to be used again and still almost brand new, these little wooden toys with happy faces, and brightly colored rattles that make a hushed sound have a very important job. To keep my memories in place, so they don't get lost.

I like the randomness and foggyness of how this picture turned out. I made it with the scanner. These are finger puppets that we bought to amuse Thomas on his good days. There is the King and Queen and Prince and Princess and Jester. There is also some of the ladybirds and bees from a little mobile that he loved looking at. A couple of springy bungee critters and a castinet that we hushed with a piece of sticking plaster, a christmas bear that turned up on his cot one night and some quiet rattles are in my collection.

The other treasures include a copy of the poem that Dean wrote and photo that we gave to the people who came to Thomas' funeral. Also one of the nurses (Laura Taylor) took an ink footprint without us knowing and she made it into a beautiful keepsake so she could give us a secret Christmas present from Thomas.

Nurses don't get enough recognition so I will say thank-you for thinking of us Laura. It's one of my treasures now.

Wedding Anniversary

2010-10-06T17:53:00.008+11:00

It's our wedding anniversary tomorrow

We have been married 4 years

Our first wedding anniversary was 10 days before Thomas was born. We went to a friends place for a meal but we weren't really up for celebrating. The Doctors had already found worrying signs of Thomas' condition. The scans had shown up a high S/D ratio (blood pressure) in the umbilical cord of 5, it was supposed to be around 2 or 3. Also I had a very large amount of amniotic fluid, its a condition called Polyhydramnios, we were being monitored with the fetal heart monitor every couple of days and they were trying to get Thomas to 38 weeks before delivering. We got him to 37 weeks and 5 days. I wondered (after) if the high S/D ratio was an indicator of his extreme pulmonary hypertension, but I am told that it probably wasn't. The over abundance of amniotic fluid is an indicator of his unconventional digestive arrangement, but it can indicate other things too. No one informed me about this, I did a very long internet research shift to find some information that gave me a whisper of things to come. Then I was too scared to ask.

The second year I don't even remember, except, I know we were trying to coordinate a bathroom renovation that dragged on for 12 weeks. I have thought about it and I don't have any recollection of any kind of event to mark the day. We were so sad. And the house was such a huge disaster. Everyone kept on saying to us, "you must be so happy/pleased to finally get it done", "is the bathroom great/are you enjoying picking out the fittings?", "it will be great when it's done". I felt like screaming at them, " I would rather have my son living here with me, a renovated bathroom does not fix my grief, no I don't love my new bathroom, its a big pain in the ass to not shower in your own home for 12 weeks, I hate everyone who wants to force the good side or bright side of any situation out of me" I didn't understand why people couldn't allow me to grieve, I think that they made it worse by trying to be bright and not allowing me to talk about things. My family has a history of not talking about things.

Last year was a different kind of sad with a fair bit of angry mixed in, we survived last year by prayer and a fairly big measure of stubbornness. A wedding anniversary was more of a joke than a celebration. I was very angry last year.

This year is year 4, it has been our best year yet and we are actually going to celebrate. My Husband has bought Theatre tickets, so we are going out. He has taken a day off work. And he has sourced the tickets from the internet, we are going to see Milkwood. We have the Melbourne Fringe Festival on at the moment, Milkwood is part of that festival. I better find something nice to wear, and put on some makeup.

This is a nice picture of us taken last week when we visited Marysville Vic to see how the town has recovered after the devastating Black Saturday fires. This is what 4 years of weathering devastation looks like on our faces, older with a little bit of hope for the future.

Ten Questions on the theme of trees - still life 365

2010-09-25T10:39:00.001+10:00

still life 365 is a unique art project for, about and by mothers, fathers, siblings, grandparents, aunts and uncles and friends who have experienced miscarriage, stillbirth or infant death. still life 365 posts a piece of art every day by a poet, artist, photographer, crafter, musician, collagist, paper artist, filmmaker, painter, sculptor, fabric artist and ordinary person exploring grief through creativity. each piece is an expression of grief, survival, sadness, love and hope. still life 365 is intended to be a safe space for creative expression. still life 365 is open to anyone affected by pregnancy loss not simply parents.

1. When you saw the theme of trees for the month of September, what immediately came to your mind?
Barren, dead trees, we are coming out of winter here and the deciduous trees didn't have leaves yet. They looked barren and everything was so cold. Now only 4 weeks later, my Elm trees have flowered, we can see the new life. I know that barren doesn't mean dead. It is just such a long time since they seemed alive.
2. What kinds of words do you associate with trees?
Dark, strong, heavy, shade, wind, shelter, growing, silent, shadows, support, cradling,
3. Of these words, do you associate any with yourself?
Strong, heavy and supporting are word that I associate with myself. I am quite physically strong, I am not a delicate build, hence I relate the word heavy. I have always been overweight. Recently I have lost over 25kg but I still have an obese BMI. Supporting, I will help anyone who needs help, I am better at actions than words. Silent as I grow older I am better at holding my thoughts close. Shadows, there are shadows of pain left inside me that most people would not know exist.
4. Have you been an outdoorsy person throughout your life?
Yes, one of my favourite places to be out doors is located just 2 hours drive away. It is Wilsons Promontory National Park. Our family would camp there when we were kids for the whole summer holiday, there was no power (except for the amenities blocks). We ran wild, walked all over, swan and surfed went fishing and ate fish for 6 weeks. Our family has always had pets and for a while we kept farm animals and horses on a small property we had. I particularly love horses and dogs. I don't have any horses now but I walk my dogs most days in any weather, we have 3 dogs, 2 are Irish Terriers, and we have 1 very small Tenterfield terrier mix. The video shows Doug and Bella, it was before Erin came to live with us.
5. How has your relationship with nature changed since your loss(es)?
Walks at the beach became a favourite thing to do with my Husband after Thomas died. Its so peaceful there, everything is so big, the sky the water, it makes me feel small and my problems feel small. Photographing sunsets and the water is something I have never really done before he died, now I have many many sunset photos. I suppose I am trying to capture the moment. I am not a good enough photographer to really capture the beauty of my amazing environment on the Mornington Peninsula but that doesn't stop me trying.
6. Did you plant a tree or bush in honor of your child?
No I haven't. I have actually left my garden to die. We have been in the grip of a terrible 10 year long drought. There has been strict restrictions for watering gardens, people were having to resort to saving the water from their showers and washing machines to put on their gardens. Some managed to keep their gardens alive, most have simply pulled theirs up and replanted drought tolerant species. There has been too much death in my garden lately to plant a rememberance tree.
7. If you have planted a tree for your child, in what ways do you incorporate the tree into your life? If you haven't, what natural images do you associate with your loss? (Do you tend to it? Do you meditate or reflect under it? Do you places flowers by it?)
I prefer to reflect in the water and air (that sounds too airy-fairy) but we always think of Thomas as having flown away (like the hymn I'll Fly away). So birds cause us to reflect sometimes, not always, airplanes with double wings always make me think of him. On Thomas' second birthday when I was picking up his portrait from a local portrait artist, a magnificent Heron came to rest on the edge of the creek at the bottom of the garden. He waited a while and I took his picture before he flew away. The lady artist, Meredith said that it was an extremely rare sighting, and she had lived there for more than 40 years. We are having Thomas' memorial plaque made with Australian Native birds on it.
8. Trees have also been used to represent families. Talk a bit about your own family tree.
I have researched my family free. Its pretty straight forward, our family originates from Worksop, Nottinghamshire UK. Then "our branch" travelled to New Zealand, and then generations later, to Australia. When the family tree gets to me, the branches get into a big tangled mess. There is a break (divorce) unwed parents, and death, and that just relates to myself and my 4 children.
9. What are your feelings now about family trees and exploring your own lineage?
I found out a few things about my predecessors when researching my family tree. There were a couple of births to women in their 40's and in 1880 or thereabouts giving birth in your 40's would have been very hard. Giving birth would have been a highly risky event during those times. There were some children whose births were recorded by the church but they did not appear on the census, I believe that means that they would have died. One family had a marriage recorded, with a birth just 6 months later, then the death of the mother a couple of days after the birth and a couple of weeks later the death of the baby. I was researching this information while I was pregnant with Thomas and it knocked me around a bit, I now know a little of the pain that they would have felt. I am thankful that it wasn't me living in those times, I am also thankful that I come from from people who were strong and healthy. My predecessors were Bricklayers and Bakers. I wonder if thats why I love bread, I don't love laying bricks though.
10. The rings of trees fascinate me. I remember learning that in hard years, the rings were smaller, or darker than in years of good water. Describe the rings of your tree.
I think that the rings of my tree are mostly all small and dark, I have been weathering a storm of some kind most of my life. This storm has been the hardest. I am coming up for my 4 year anniversary of my marriage. The first year I was pregnant, the second was the year Thomas was born and died, and from then there has been grief. They have all been really tough years. Every year I have felt like bailing out at some point. Every year I have hung on through my fight or flight times. I have chosen to fight to stay married. It has been one of the hardest things I have chosen to do.

Carrying and delivering Thomas and watching him struggle for life and then losing him has been the most defining experience, I am forever altered by it. It was such an expectant time, full of grief and hope. Grief for the things that were wrong and hope for the promise of the future. I find I am humbled, saddened, shattered, exhausted, shocked, angry, thankful, scared, in awe, dazed, and determined that Thomas' life will not become an event that I will find a way to harden up and get over. His life and death will be something that I will hold dear to me, keeping him alive in my heart. I want to remain vulnerable to my grief, to others grief for this reason.

Memorial Plaque

2010-09-15T20:18:00.007+10:00

We went and placed our order for Thomas' memorial plaque today.

We decided on the Native Birds design. The Cherry Blossom stone and a grey finish to the plaque. We made a 20% payment and we will pay it off over the next 4 months. We just need to decide on the inscription.

I took some pictures at the cemetery while we were there. It is a very peaceful and pretty place.

Computer Grief

2010-09-13T20:07:00.003+10:00

I was just reading this amazing poem on Still Life 365 and grief hits me.

I try and make a comment that does some justice to the effort of the writer, the depth of my feelings and the unfairness of writing a poem about a baby who died. And I cry.

My computer ends up being the witness to my grief most times. It is when I connect with blogs on my reading list that I allow my feelings to surface. Face to face with my computer its safe to grieve. My Hubby and son are used to it and they don't comment when I am crying and reading or if I sit here all night long, they have stopped asking why.

Most of the blogs I read are written by women. Most of their readers are women gauging by the comments. Most of the authors and I have the death of their baby or significant loss in common. We mostly have grief in common. Everybody expresses their grief differently and we are often in different places based on our family's needs and our own needs. But I find that there are these fundamental places that grief takes all of us. Heartbroken and inconsolable the feelings of loneliness and forever altered, permanent differentness is stamped on each of us. We all struggle to jump back into the human race, and we do so as it is required, with varying levels of success but we are all changed by grief. The blogging community is a lifeline for many of us. I wouldn't say its a lifeline for me, I have met one lovely babylost mum (Hi, how are you going today?) but I haven't got any face to face, email or phone friendships from this community. I feel quite lonely.

I am used to being lonely, I haven't written that so that people will behave differently either. I have always felt lonely or alone, my first memory of feeling lonely is in the middle of Primary School. I was probably 10 or 11. Grief is a different kind of lonely. People don't understand why I am still so deep in grief when they have already moved on to the next thing in their lives. So I hide it. I separate myself. I don't know any other way to behave like I am normal. Their kind of normal. Hiding it doesn't work though, because nobody wants to bring it up in case it upsets me (as if I have forgotten all about it, like loosing $20 at the beach last summer), I end up grieving all alone, except for the blogging community. I am validated by them, I feel what they feel, therefore I am not mad, and the normal that I have to pretend to be is the real madness, and the blogging community validates that too (thank you everyone). I don't really have to make personal relationships to get that validation.

My family have all done so many things since my little Thomas came along. There have been overseas holidays, deaths of significant pets, children maturing and leaving home, first jobs, new jobs, qualifications earned, holiday celebrations, major health issues, family businesses sold, relationships ended, divorce, home renovations, new governments, relationships started, babies born, family breakdown, absent fathers, changing churches, money trouble, to name a few. People move on to these new places, but I don't. I don't move on, I cant move on, I am tethered to the place and time of Thomas' birth and death. I can experience those other things and reluctantly I have been present for many of them but I will always affected by the dates 17th October 2007 and 29th February 2008 and the days in between. I will never drive past one of the major hospitals in Melbourne with any other thought in my mind. I understand now that there are people who will never ever get this. I am very happy for them because they will never know this pain, they are spared.

I sit at my computer and catch up on Blog posts and comments in the mornings usually and also some evenings. Some bloggers take professional photos and post heaps of them, so I as the reader get a visual experience along with a story. The art blogs are inspiring and the artists make it look so simple, I am inspired to spend some cash on art materials, then I get stuck. Some write from their vast storehouse of experience of grief plus their infertility, or their parenting journey, disability and homeschooling, home makeovers, craft and food, weight loss, the list goes on. I want to know about people and I really enjoy reading. Blogs affect me, I like it that way. Each blog is like a never ending interactive book, until it ends or goes private. I wonder if there are any blogs in my reader that will still be there in the years in the future. I hope so. I wonder if mine will still be there.

I am not obsessed. Well, not as much as I used to be. I spend a minimum of 4 to 5 hours a week reading blogs, usually more, hence I rarely post on my own blog. Time is not the only reason I don't post very often. I find it very difficult to be actually honest about myself in a way that tells my story and shows my personality in a positive light. Also I think I have something to say then I second guess myself and I stay silent because I don't think anyone will want to read what I have posted. Blogging is such a one sided conversation, and when it's about stuff that is in the vulnerable places of my spirit and my soul I want it to appear as acceptable so I don't have to carry more pain. I am so tired of pain, it is a well worn feeling that has shaped my core. I don't want people to feel sorry for me and to be put into the too hard basket, I want people to know who I am without having to add more pain. I want to be liked.

I sometimes wonder if I just let all my stuff out onto my blog if anyone would even notice or care. I don't think I have any non-following family members who reads. But I can't write a personal grievance here, just in case I upset someone.

There are some amazing writers out there and their stories lead us into cultures that I will never get to experience first hand. I am very happy to experience them second hand via a story. I really love stories. I believe grief is important work and I want to be part of the validation process too. For my own sake as well as yours (the reader). I write this post because it means that I have to feel bold to feel OK about writing my opinion and feelings. Even though my writing is nothing special and I don't make many typos, and my photography is average, (because I usually haven't charged the camera and use my mobile phone instead) I continue to post bits and pieces. Sometimes I feel like my voice is not adding anything to the mix. Today I am putting my opinion forward and trying to honestly reveal some of me.

Maybe its because I read Rachel Simon's Angry Day and I related to it, and I cried.

Its a small world

2010-08-14T19:22:00.007+10:00

.......even when you are interred

When I was at the cemetary today I had a good walk around looking at the plaques nearby our little Thomas.

I was surprised when I saw that a young man that I have known for most of my life is resting just up the street from Thomas and on the other side.

Also,

My neighbor from over the road (from my actual house), her grandson lies only 1 space away from Thomas and behind him (facing the other way).

Its been a long time since I have been to visit the cemetary.

I am ready to have a memorial plaque placed for Thomas, he lies in a lawn cemetary so there are only flat plaques in his area.

It costs about $2,200 and it takes about 10-12 weeks.

I have to get my husbands permission because he owns the plot. I hope he is ready too.

What do you think of these possibilities?

Cards for Donya

2010-08-11T22:31:00.006+10:00

I sent a birthday card to Donya today.

Donya has Down syndrome and she is turning 50 on August 18th, and she loves to receive mail.

I read about Donya on the blog My Blessed Life where Myra blogs about her hearts journey.

So it you want to write a happy birthday message and post it to Alabama USA, leave a comment on the blog post where Myra writes on behalf of Donya and her Mother, and Myra will email the postal address to you

Myra is also babylost.

Happy Birthday Donya, congratulations on turning 50 years old.

Lessons - Walking with You

2010-02-28T13:47:00.004+11:00

I have taken part in the bible study on the Walking With You blog by Sufficient Grace Ministries. The book that we are working through is called "Threads of Hope, Pieces of Joy, A Bible Study". I have posted lesson 2 today.

See the page titled "Lessons". The page tab is just up the top of my blog under Thomas' picture. There is no way to leave a comment on that page so I have made this little post so you can leave any comments.

If you have done the same lesson, how did you find the questions? I think it took me about 2 hours to work my way through it. Did it take you that long too?

Its a little bit different

2010-02-24T21:54:00.003+11:00

I have been "shopping" for new page elements and there are a couple of different things on my blog now.

There are the buttons along the top which will lead you to different parts of my blog. Also, I now have some pet fish, they want to play with your mouse pointer. I hope you like them.

Why I feel So Rotten

2010-02-23T22:24:00.004+11:00

I have been feeling unwell for a while so I eventually went to the doctor and asked him to tell me why. He ordered some blood tests and listened to my symptoms, he also looked carefully at a lump I have growing on the knuckle of my index finger.

Lately I have been feeling really flat, I have been having palpitations, I can't seem to wake up in the morning, I can't seem to get going either. I have been feeling sluggish and sad, resentful of working, and powerfully sleepy in the afternoon. I haven't been interested in being intimate, I have had yuckky and long menstration, symptoms of PMS at the wrong times with an aching belly and tender breasts. I have been gaining weight steadily, with sore and stiff feet, and fluid collecting under the skin on my shins. And I had a lump on my finger that was sore.

Even I feel sorry for me after reading what I just wrote.

Anyway the upshot of the blood test is that I have Hypothyroidism. All of the things described above can be symptoms of it. Except the lump. Add the above symptoms with depression and anxiety, low heart rate, sensitivity to heat and cold, and one I don't have, high cholesterol, and you have an almost complete picture of my unhealthy grieving mind and body. I was just going along with this poor state of health, I was waiting for the day I would start to feel better. Apparently I had to do something about it. I have become used to feeling unhealthy, I wonder if I will feel, dare I say, good, soon. I hope so, I hope feeling good doesn't mean that I will stop being sad about Thomas dying.

Since I received that diagnosis I have been reading about Thyroid testing. I know that Hypothyroidism can run in the family because Thomas had it too. After Thomas was diagnosed with it, one of the first things that the doctors asked me about was the family history. My Grandmother had Hashimotos Disease which happens with untreated Hypothyroidism. For me, I need to take a thyroxine tablet everyday for the rest of my life, I need to have some more blood tests to determine the level of medication required but I need to take the medication for a few weeks first.

There were other things that they checked with varying degrees of good and bad, but the thing about the Hypothyroidism is that I have it and Thomas had it too. Maybe I gave it to him, genetically speaking, although apparently if you have Down Syndrome there is a higher likelihood of having a Thyroid issue. I am not happy about giving it to him, but I feel sort of closer to him because of it.

I have been reading as I said earlier, one of the reasons for secondary infertility is thyroid disfunction. It also can cause birth defects and cause problems in pregnancy. I wonder how many people out there who are ttc have checked their thyroid function. I can't remember when mine was last checked. I would think that mine has been bad for a while. Maybe it was the reason I lost a pregnancy at 5 weeks in April of last year. I had no idea that it could affect pregnancy, the doctor didn't suggest testing back then either.

I don't feel better yet but I have started taking the Thyroxine, and Vitamin D tablets because I have a deficiency, It is good to know that I don't have to feel so bad. Feeling bad is so tiring. Have you had a check up or a blood test lately?

Here is a picture of my finger and the reported Lump. It's not very big, it's below my fingernail on the left side. It doesn't show up on the x-ray so the doctor says not to worry about it.

Happy Blogging Birthday to Me

2010-02-17T21:12:00.006+11:00

Today marks one year of blogging on this blog, more importantly it has been one year since I found this community. I can't imagine how I would have survived this previous year without you all to "talk to". Thanks everyone for sharing your babies and your lives.

I am sharing a video of Thomas that I took when he was only a week old. It is titled Thomas the Mouse because that is the nickname we gave him before he was born. He was so very quiet when I was carrying him, he hardly ever kicked, when he moved it felt more like wiggles and he never let my husband feel any kicks, as soon as he put his hand on my belly Thomas would stop wiggling around. Quiet as a mouse.

Just to let you know I took it with my mobile phone, I wanted to send something to my Husband who had to be at work and away from his newborn son. Its a huge no-no to use your mobile phone in the NICU but the nurse knew I was doing it and let me break the rules, anyway, its low quality and goes for 20 secs. It is my voice that you can hear. The last sentence I am saying and gets cut off is "He's had a little bit of Morphine, so he is having a bit of a cruise-ey sleep".

My Valentine

2010-02-14T13:45:00.002+11:00

My Valentine to baby Thomas, click here to go to Still Life 365 where a slideshow of Valentines made by grieving parents including me will play.

My Postcard from Heaven

2010-02-11T22:39:00.001+11:00

Where have I been? And, where I am now

2010-02-03T22:25:00.013+11:00

I haven't been blogging very much thats for sure. The date on my last post tells that story. I cant even say that I have a heap of "almost posts " with draft stamped on them in my list of posts. I simply have not been writing. I have been reading though, I read blogs most days and I have been reading novels, and I have been reading about Aspergers Syndrome too, this is because a pediatrician told me that my 3rd son has AS, but I think he is wrong, we are currently having that investigated further.

Reading blogs helps me. I know that everyone has a story and I am not going to find someone else with the same story as me but I read blogs of people who are writing the chapters that come after grief. That is what helps me, knowing that there are going to be more chapters.

I have been thinking about the similarities between Grief and Love.

Love comes when you least expect it and when you are not looking for it. It explodes into your life, love day dreams consume your day and your thoughts, touching or coloring every part of your life and making it difficult to carry out more than routine tasks. I have experienced this "Falling in Love" kind of love. I have declared to myself that this is the one, declare that I will never take this perfect relationship for granted, my love will always be fresh for my wonderful amazing man who will always strive to please me and succeed. I have thankfully moved out of the falling stage.

Grief has a similarly devouring affect, it also arrives without warning, completely bowls me over and leaves me gasping for breath. It is so powerful, it illuminates this single relationship to the point that I am blind to the many other relationships in my life. I am driven to gather things that have a smell or a date or any memory attached, things that bring a moment in time back to my mind. I am very emotional, I write poetry, I draw, photograph, scrapbook, treasure jewelry, plant seeds, I file and store faithfully.

Its a lot like falling in love, except it feels so bloody crappy.

I used to have grief dripping off me, all over the place. I was an automatic walking grief machine, I had buttons all over me and it was very easy to push any of them (or all of them at once). I dispensed anger, pain and sadness when I was gasping for breath at the shopping centre because of a panic attack, or when I was bawling my eyes out because someone else got their baby, and when I was very angry and self righteous because someone else didn't take notice of the danger that threatened their child, and sadly when the stony unfriendly silence that I presented to someone with a happy attitude. I alienated a lot of people and lost a lot of relationships.

Grief is not the same for me anymore. In the beginning it was on the surface of my skin, dripping off onto everything I came into contact with. It's now almost 2 years since Thomas died and I have found that it is easier to tell my story, I am more comfortable, less shocked. I feel like grief has grown into me, its deeper now. I feel like it has reached under my skin and blended with my muscles. Like a slow growing creeper I imagine it moving toward my core where it can live, sheltered privately. I like the thought of it becoming part of who I am. I do not have get over it, move on, and heal, leave that experience behind me as I move forward without the baggage. Feeling sad sometimes will always be part of who I am, and writing that makes me feel a bit happy, less pressured.

I think that grief might follow the trend that Love follows. Love kind of grows comfortable. It's still love, but it becomes comfortable. It grows deeper and stronger. Deeper than the love I had at the "Falling In" stage but maybe not so gasping for breath. I have seen older lovers grow into each other. They become like a matched pair. They start looking like each other and talking like each other too. Its like they have blended a bit of the other person into themselves.

I imagine that one day people will not be able to see my grief anymore. They won't see it on my face, they will just see me. Over the years it will have altered and I will have accommodated it to the point that it is no longer recognised. It will become a treasured and guarded resource, a place where great strength lives. I am not in that place just yet (of course) and I often go back to the dripping stage. At the moment I am in the place where I can catch glimpses of the future and want to step into it.

That is where I am now. On the doorstep of Thomas' 2nd Angelversary.

I love you Thomas
Wish you were here

Your Mum.

My Candle is Lit

2009-10-15T18:59:00.005+11:00

Today is Pregnancy and Infant Loss Awareness day.

On this day, Families and Friends are lighting candles at 7pm. We are creating a wave of light around the world in rememberance of our babies and pregnancies that are no longer with us. Remembering the dreams that we once held for them and the love that we continue to hold close. Please if you know someone who has lost a baby or a pregnancy, please tell them that you thought of their baby and use the babys name if possible. You might see a tear, but don't be afraid, it will mean so much to hear that someone remembers.

My candle burns, it will stay burning here in Melbourne until 8.30pm when the wave of light reaches the next time zone in Adelaide.

Remembering baby Thomas
And all the babies from The Royal Childrens Hospital Neonatal Intensive Care Unit, including Mia, Jacob, Tyler, Samuel, Amelia and Josh

Trying to catch the Moon

2009-09-24T19:22:00.003+10:00

My Husband called me outside this evening to show me the pretty cloud.

So I took this picture.

Behind the scenes, the tree in my front yard was trying to catch the moon.

Such a Little Cutie

2009-09-18T23:42:00.002+10:00

He was so cute, he had the sweetest little nose, and a little tuft of long hair right on his fontinelle. He had chubby cheeks and an earnest look in his eye. Some people could see it, some only saw the tubes, which I understand because the tubes looked really scary, there were so many of them.

But not in this picture.

I have just picked up this beautiful sketch of my super cute baby Thomas. I am thrilled with it, it looks just like him, and there are no tubes or tape stuck to his face.

An old friend of my family is a portrait artist. I went and saw her recently and this is the outcome. I am so happy with it. I want everyone to get a portrait done. The artist is Meredith Forster, she will do sketches by mail to anywhere in the world. Her email address is merrimart (at) dodo (dot) com (dot) au. Meredith was telling me she does all kinds of portraits but she feels her calling is to do portraits of babies who have died, she has a whole album of the ones she has done over the years, babies that have been born too early and some that were born sleeping, some babies and children that have been older too.

Thanks Meredith, thanks for putting so much love and care into his portrait.

Jet

2009-09-02T18:47:00.004+10:00

From Mirne and Craigs blog:

"This morning I woke to the sun's light coming through the curtains in the hospital room. I immediately knew that something was wrong. Jet had not woken me for his feed. I rushed to his hospital cot and felt his face. I saw his lips. I knew we had lost another one."

Mirne and Craig who live in the Netherlands broke the news that their third child Jet passed away on Monday. He was born on Saturday morning and lived for 3 days with his elated parents. Jet is their third child born and their third child to pass away, in the last 3 years 1 month and 1 week Mirne and Craig have lost 3 babies, firstly they lost Freja, then they lost Kees and now they have lost Jet. Losing 3 babies is totally off the scale of unfair and completely off the scale of tragedy and sadness, so far off the scale I just can't comprehend it.

I want to say to Mirne and Craig that I am so very sorry.

I am here and I will remember, I will tell people about your beautiful baby Jet, I will tell them about Kees and Freja too. I am shattered, floored and speechless. I can't begin to know what you are feeling. I can't begin to imagine how you are going to pick up your lives without any of your three beautiful children living. Its a tragic situation beyond all of my worst nightmares. I offer my condolences to you for your loss.

In my memory I go back to the morning after Thomas died, when I woke moaning and crying with a hole in my heart, I didn't want to consider going forward, I just wanted to go back. The pain is the worst I ever felt. Pain is an inadequate word. I just wanted to hold onto my Husband and be lost too. I can't imagine having to feel that raw grief again and again.

I don't think that anyone ever thought that Mirne and Craig would have to bury another baby. I know Mirne said on her blog that she wasn't taking anything for granted, just because she was pregnant didn't mean that she was going to bring a baby home to grow up and be their living family until they were old. To be pregnant is to be hopeful of a happy outcome and to have those hopes and dreams and love shredded one more time is too much. Too much to give, too many times.

I lit a candle in the window tonight and spoke Jets name. I am remembering Jet tonight, along with Freja and Kees, and keeping Mirne and Craig in my thoughts and prayers too.

Is there anybody out there?

2009-08-28T09:01:00.006+10:00

I told everyone off last night.

My whole family.

All of them, all at once (together).

I told them that I need to talk about my baby. My dead baby.

I told them that they are ignoring my grief and stepping around talking about him. I told them I feel unsupported and alone in my grief.

I told them I know they are too upset to reveal their true feelings. That they are anxious about distressing me and they don't want to be emotional. My family are all about not being vulnerable.

I got my point across, they agreed that they have been scared of their feelings and they all said that they would try to see it from my point of view.

They agreed that Thomas is an important member of our family and he deserves to be remembered. They agreed that dates like his birthday are important and that they would write his birthday on their calendars every year, just like the rest of us living people.

That sorted that out.

It felt good to get that off my chest.

I know my relationships will be better for it.

Then I woke up.

Which one is the real me?

2009-08-14T23:03:00.002+10:00

I went to the Melbourne Zoo today and I took this picture of a Meerkat.

But it looks like two. Its not hard to work out which one is real, but it makes you think for a second.

One is not really there, its just her reflection on the glass, an illusion due to the late afternoon winter sunshine.

One is real, one is not.

Just like me, I wonder if the person I am today is the new real me. Or not.

Love, broken heart, amputation scar

2009-07-21T15:15:00.001+10:00

Red Nose Day - Remembering Day

2009-06-26T22:26:00.018+10:00

It was a very emotional day today, Remembering day. Sids and kids hold a service every year for babies and children who have passed away.

Here are some of my memories of today.

This picture shows our Choir, unfortunately I am hidden in this picture. Our t-shirts say "Sids and kids" "healing in song"

Our song was recorded so I hope to post the video when I receive it. We sang "Yesterday" with an acoustic guitarist.

The Harpist is Megan Reeves from the Melbourne Symphony Orchestra. The old church is beautiful, its St Michaels Uniting Church in Melbourne.

In the courtyard after the service we all took a balloon, there was a sea of red balloons

We wrote our baby's names and messages on the balloons before we let them go

They looked so pretty in the sky. My Mother in Law said "where do you think they will end up", Rowan said "Heaven, they are going to Heaven". I hope all the little children in Heaven have a red balloon today. I hope that Thomas found the one with his name on it.
(This picture is out of order and it just wont move) I loved these candle bowls so I took lots of pictures of them, there was at least 5 in the church. Everyone came forward and lit a taper from the candle in the middle then pushed their candle into the sand.

The Sids and kids website is a great resource for bereaved families, they have a 24 hour phone counseling line, up to date information on safe sleeping and all their booklets and information pages can be downloaded. This is what they say about themselves,

SIDS and Kids is dedicated to saving the lives of babies and children during pregnancy, birth, infancy and childhood and to supporting bereaved families.

We deliver on our vision through world class research; evidence based education and bereavement support; and advocacy.

Here is the link to their website again

Canon for a cause

2009-06-18T19:30:00.010+10:00

Thanks to Bir of All the Little Ponies I found Canon Creative for a Cause

Its where many people including this well known blogger have submitted their pictures in the hope of winning up to $60,000 for a cause they nominate. How it works, go to the Canon Creative for a Cause website. Select the cause category that interests you. Click on the pictures you like and vote for them. You can only vote for a picture once and you can vote for as many as you like.

Here are my pictures and the links, please vote.

Photo of Thomas

Cause: Neonatal intensive care unit

Royal Childrens Hospital Foundation

http://www1.canon.com.au/creativeforacause/Photo/Gallery.aspx?photo=ED6903D75DE1A7C8

Photo of the Bunny in Deans Hood

Cause: suicide prevention

Lifeline

http://www1.canon.com.au/creativeforacause/Photo/Gallery.aspx?photo=93DD36186C3950CA

Yesterday

2009-05-14T17:31:00.010+10:00

I was looking at Thomas' pictures on this blog and thinking that I remembered the day when this photo was taken. I remember the conversation around this photo. It was very late at night and my husband couldn't work out why I would want a picture of his toes and feet.

I also remember thinking that I would get an opportunity (one day) to take pictures without ventilation or lines in his arms or feet and sensors attached. I never did get that opportunity to photograph him completely free, but in this picture he didn't have the suction tube down his throat or all the tape that it required. I could see his whole face.

I do remember our days with baby Thomas, these pictures are reminders of those memories .......... and it feels like it was just yesterday.

I am going to be singing the song "Yesterday" with the choir. I love this song and I think it fits very well, we are going to be singing it at the St Michael's Cathedral in Melbourne. It will be Remembering Day, a service for the families of babies and young children that have suddenly died. It is hosted by Sids and Kids who are an Australian organisation who help families with grief, and who research the cause of Sudden infant death syndrome (hence the Sids). All the choir members are parents or grandparents of a little one who has gone

The lyrics have been altered a little bit and we will be doing a harmony, it sounds lovely when we do it.

Yesterday.....

All my troubles seemed so far away

Now it looks as though they're here to stay

Oh, I believe

In yesterday

Suddenly......

I'm not half the man I used to be

There's a shadow hanging over me

Oh yesterday

Came suddenly

Why she had to go

I don't know

She couldn't say

I say something's wrong

How I long......

Yesterday....

Love was such an easy game to play

Now I need a place to hide away

Oh, I believe

In yesterday

Why he had to go

I don't know

He couldn't say

I say something's wrong

How I long......

Yesterday....

Love was such an easy game to play

Now I need a place to hide away

Oh, I believe

In yesterday

Hum (I believe in yesterday)

Because it is Mothers Day today...

2009-05-10T00:59:00.001+10:00

Ronnie Mac House

2009-04-28T21:12:00.004+10:00

Communal living has its ups and downs. Living at a place like Ronnie Mac House at the children's hospital certainly was an education. Over the time that our family stayed there we encountered people from many different walks of life, and quite a few cultures. Most families who stay there will be far from their homes and their extended families. Some families were from across the other side of the country and others usually lived only a couple of suburbs away from me. Negotiating the communal living experience was a huge piece of the jigsaw that my life became when Thomas was admitted to the NICU.

One of the hardest things to get used to was the feeling of being so exposed. With the exception of our bedroom everywhere else was public space. Our bedroom was shared also, we all slept in the same room, me and my husband and my 11yo son. It was impossible to have a private argument/disagreement with my husband. I found it extremely difficult to keep my sons behaviour in check. I felt like I was being watched everywhere I went.

The kitchen was communal, each bathroom was shared between 4 families, the lounge, the backyard, the laundry, the clothesline, the dining room, everywhere I went, I felt that I was on display. Even in the bathroom with the door locked while under the shower, it was always on my mind, "don't be too long, someone else might need the toilet or the shower" and there was the constant battle in my mind of "is it better to keep my toiletries in the bathroom cupboard and risk them being stolen or is it better to take them to my room and risk forgetting to bring something every time".

We had a family who were of the Muslim faith on our floor and we shared a bathroom with them for about 7weeks. It took me ages to work out why the bathroom floor and the toilet seat was always so wet, with wet towels lying on the floor. I am always very suspicious about wet toilet floors and seats (it comes from having boys). Its natural to wonder "what kind of wet is that". Anyway there are strict washing procedures that must be followed before prayer and that is what makes the mess. There must be huge business opportunities in bathroom renovations for these families. Also the smells that would accumulate in the bathrooms were foul. There was one or two disposable nappy disposal units in each bathroom. In the middle of summer they became disgusting quite quickly. I hated sharing bathrooms.

One of the things that I missed so badly was the companionship. There was always someone to talk to, usually even 24 hours a day. Not that I was allowed to talk 24hrs a day. There were rules for talking after 10pm, so as not to wake people up. But people just got it. They got the anxiety, and how much I wanted to be at home and they always asked our time frame, when could we go home. There were many stories to hear too. A family had been bringing their daughter yearly to the hospital for 4 years, she had been born with half a heart and had many many surgical procedures to help her grow. A one year old baby girl who received a liver transplant had spent more than half her life in hospital in a different state to home. A little boy with a brain tumor going through treatment and losing hair getting thin, being sick and weak, taking a pharmacy of medicine everyday.

There were all sorts of good companies that organised it so their employees had some time to volunteer in the community by supplying meals to the families living in the house. I had quite a few meals courtesy of a bank and an insurance company and Rotary Club. It really was great to know that a meal was not one of the things that I had to worry about on that night.

It was so good to be able to pop into the hospital "whenever". The house was just across the road and through the car park, then through the Emergency department, then down 2 corridors, up the lifts, and down another corridor. It was about a 5-6minute trip to get from the house to the bedside. Sometimes it felt like it was a hundred miles away though. The house rules meant that I was not allowed to leave my 11yo at the house unattended by me or my husband, even if he was asleep in bed, or watching TV in the afternoon, while I popped over to the hospital to check on my baby. Understandably my 11yo didn't want to sit at the bedside for more than 5 minutes, so sometimes it was impossible to get across the road and through the car park, etc, etc. As soon as he went to school and I had done my milk I could go over and spend the day there at least. Some days I would go back and forth 4 or 5 times. There was a lot of walking. I had very sore feet.

One of the big "up sides" was no housework. The housekeeper kept things running, she had lots of help from volunteer staff and there were contract cleaners who cleaned bathrooms and vacuumed floors every weekday. The housekeeper would keep the laundry powder supply flowing, be the supplier of chocolate (we all know that chocolate fixes everything) get to know the families, and be a sympathetic ear when needed, she would get tough when required too. We had to take responsibility for keeping our room tidy and cleaning up after ourselves in the kitchen of course. Some days I barely coped with that.

The down sides were many. Mostly it was the people who went too far. There were a few families that felt that life had dealt them a lucky break, they had received a lovely holiday at the Governments expense and they would invite their friends and extended families to stay with them. Often they would have a few small children who were mostly unattended and not usually fed. These families would party in the backyard, getting drunk, one family even had their car backed up with the boot open and the stereo blaring. The whole time one of their children ate everything he could lay his hands on in the fridge. There were rules for this behaviour too, it was definitely not allowed but the truth was it was very hard to stop, especially if it happened when management are not on site, in the end there were surveillance cameras installed. One family smoked dope in their room, it stunk out our whole floor. One parents idea of discipline was to simply shout their child's name loudly over and over. It really began to grate on my nerves quickly. One parent just lived for gossip and she seemed to have a watertight memory for any detail. She even remembered things about me that I had forgotten. There was the pregnant mother with a child in a pram and one in the hospital, she smoked and drank. The mum who went to the night clubs in the city while her child was on the ward receiving Leukemia treatment. It was a melting pot and the pressure triggered the best of humankind and the worst of society.

The kitchen and how people fed themselves was very interesting. People swapped recipes or ideas. Sometimes a "Please eat" offering would appear on the bench, a chocolate cake or sweet treat that was cooked to fill in the empty hours. Occasionally a better meal was being cooked right next to me, often it was a worse one. Some families never ate before 8pm, other families had children on cancer treatments and their appetite was extremely fickle and weak. Sometimes I would find a mum cooking chicken drumsticks at 11pm because their little one thought that would be the only thing that they could eat that day. The family of the Muslim faith had some interesting kitchen habits. Their religion even required them to avoid using any cooking implements plates or cutlery that might have been in contact with non-halal meat. They used only disposable paper plates and plastic knives and forks, they had disposable aluminium baking dishes and plates and they bought their own coffee mugs. It seemed pretty complicated to me.

The rules really ruled our lives. No TV in any room after 10pm. No talking after 10pm. No drinking unless it was at the evening meal and accompanied food. No unattended children. Sign the book when you leave and when you come back. Never leave the doors unlocked. Don't use the washing machines or dryers after 10pm. No smoking in the rooms, no burning of any item including candles. Wash your dishes and put them away. Label all food in the communal fridge with your name, date and room number. When vacating your room vacuum and wash the floor, wash the doona covers and replace them, put new linen on the beds, wipe out the cupboards and the little fridge in your room, put new supplies of towels and face washers in the room, put new rubbish bin liners in the bins, put the bedspreads on the beds. Hand in the keys.

Under the tree April 2008

2009-04-25T15:06:00.006+10:00

How long has it been since you lost your child/ren? Has your grief changed at all? Is your life becoming any easier or is it just harder as time passes?

Thomas passed away 1 year and 56 days ago, or 421 days ago. He was 135 days old.

I still have the same grief but I express it differently now, I am still heartbroken, I still want to go back in time and hold him.

Is life becoming easier or harder, well I suppose it is easier now that we have passed Thomas' anniversary. In the first 6 months I felt like I we were all on the same page, everyone grieving at the same rate. People would take the time to be sensitive to our grief and try to be nice. I don't really know how I got through the first 6 months, I think that I was on autopilot and I just did what my husband told me to do.

Initially when Thomas passed away things changed because we moved back home. Our family was all together, minus the littlest one. We had our own space again, we didn't have to share space with a lot of strangers anymore. I was finally able to sleep because I didn't have to be at the hospital anymore. I was able to sleep in my own bed. It was better, even though it was so bad.

But I must say that I believe the second 6 months of life without Thomas was harder than the first 6 months, most bereaved parents I know have said the same thing. I am so sorry if you are starting to experience this, I hope that for you this will not be true.

I am better now at choosing who to tell things to and who to just show the mask. I am better at recognising a like minded heart, someone who can listen and get it. There are a lot of people that I wouldn't dare show anything other than my mask to, it would be just to risky. Then there are the other people who I have to show the mask to, like family or my sons schoolteachers, because they expect me to function in a certain way. It is just risky to let the mask slip around them.

There are some people who will listen because they want to be good and caring and kind, but really they can't cope with it, I am going to have to find a way to stop myself in those situations.

I think that I am almost at the point where I wouldn't bother telling anyone my story anymore, unless it is in exceptional circumstances. I think that it means I have almost emptied my self. I wonder if that could have been done sooner if I had been able to talk more about Thomas.

I believe that I am "working the program" my grief has many stages and I will sometimes jump from one to the other and sometimes I sit in a spot for a while, some days I do all stages at once. Somedays I have trouble accepting that he actually died, somedays I feel it was so long ago that he might not have been born at all. I wish he was still here (even though he was so very sick).

I believe that I am forever changed. I will never be the same.

How do you feel when you see pregnant women when you are out and about?

I try not to look at them. It is hard not to, they just seem to draw my eye. I have a close friend who has a 3 month old baby. It was sometimes difficult and sometimes heartbreaking watching her belly grow. It gave me a chance to talk about my pregnancy though. This friend is really the only person who didn't freak out when I used Thomas' name or spoke about him.

I sometimes feel anxious for the pregnant women I see, I wonder if they know about the things that can go wrong. I hope they never find out.

I went to a party recently and there was a young woman there who looked as though she was due. I just kept on stealing little glances at her. She was so happy and content, she was surrounded by people who cared for her and she appeared very healthy. I hope her baby has been born already and all is well.

I remember being a first time Mum. Nothing could have properly prepared me or explained how it feels to deliver a baby. Similarly, nothing could have softened the impact of Thomas death, grief just smashed right through me, there are little bits of it embedded in me. Everywhere.

What's your therapy in the aftermath of losing your child? Do you go to counseling? Do you do artwork or some kind of exercise or do you simply just let yourself be? What helps you?

My therapy has been lots of things, things that make me feel something.

Talking has definitely been the most important. I think that it is very important to talk to people that knew me when Thomas was alive. People who met me as Thomas' Mum. Parents, nurses, support staff. Even just knowing that someone is there is important. Knowing that I can make a call, send an email, or a message on Face book and talk to one of Thomas' nurses if I want to is one of my lifelines.

Sleeping was important therapy, grief makes everything exhausting, even just thinking about things made me exhausted. I am lucky that my husband coped well with my clingyness because cuddles are fabulous therapy. For serious therapy I went to the the hospitals "bereaved parents support group" where I listened to other people talk about their children, and they listened when I talked about Thomas.

Work is therapy, because I have to focus on life. I am still here and work is something that I need to do. I have found that I don't have the concentration for anything very hard. I just want something that keeps me busy. Somedays I feel like I could be an Altzimers patient, a whole lot of fluff upstairs. I am told it is a common symptom of depression. It can make my working life a bit frustrating.

I have had so many people tell me that it is OK to take Anti-depressants. They dispense this advice as if they are the only people in the world who are brave enough to tackle the topic of depression. The thing is that I am grieving and that is a natural process, given my situation. My baby died and I am supposed to be sad. I don't want to take a pill and behave like I forgot that Thomas ever existed, that he never died. If I was all happy and laughing all the time it would be wrong, I want to grieve. I suppose that grief in itself is therapy.

If grieving didn't make me feel better, then I wouldn't read all the baby lost blogs that I read. I wouldn't cry about other dead babies. How many times have you heard or read the phrase "have a good cry, you'll feel much better afterwards". Crying is therapy.

I actually go and see a real live therapist too, one on one. She has lost a baby too and she is great. One day I might be able to give that up but not yet.

I ran into a friend the other day. She is someone I used to work with. I didn't really connect with her when we worked together. She left the company to have a baby (her 2nd) just before I fell pregnant with Thomas. We connected at a support meeting for parents of children with Down syndrome. She said to me "I decided, you know what, this is my life too, yes I am a busy mum, I never have enough hours in the day, my kids are full on all the time, BUT, I need to do what makes me truly happy, for no-one else but me, because I want to, because I need to, because I want to be the best mother and wife I can be, so, I started running, and I love it, I get a high from it, I do it because it makes me happy" my friend encouraged me to find the thing that makes me happy and do it. So, I have joined a choir. It's my happiness therapy.

I believe that we all need sadness therapy and happiness therapy, and a lot of lifelines. This blog is one of my lifelines, I am the audience to yours.

Sweet Salty

2009-04-15T21:10:00.003+10:00

I just read this post on Sweet Salty.

Its about babyloss and grief. Its the transcript of what she said for a walk to remember.

Some people can express things so well. Words are like brushstrokes, thoughts are arrayed in layers and focus like a landscape painting.

So many "just right" thoughts.

I've Missed You

2009-04-08T11:26:00.006+10:00

I miss Thomas all the time but there is more that I miss.

I miss his toys and I miss his tubes. I miss the nurses, I miss the other mums, the social workers and the hospital.

I miss waiting for him to get better. When I was waiting for him to get better I had hope. I had hope that he would live, that he would come home and grow up and we would be involved in his care and it would have been hard but he would have been alive. I still feel like I have hope. That's really strange. I don't know why I would have hope now, he died over a year ago. I look at his pictures and I just really want him to be here.

This photo shows toys I made him. I hand stitched these while I was waiting. They are textured for touch stimulation and coloured for visual stimulation.

When I look at the photo I posted previously I can see more of his toys, some of the ones I made are there, some were given to him and some were chosen by my husband and I. When I look at all of Thomas' things I miss them too. I feel like unpacking the boxes and getting them all out, so I can feel closer to him. I know that would just make me sad. I have kept the red satin donut out where I can touch it. He was buried with the pink terry square.

I suppose I am lonely. Rowan has been at his fathers house since Saturday and I have been by myself a lot of the time.

I just want to shout and scream, why couldn't he be here. There is no answer.

There are memories, images and words.

Grief, broken, wounded, hurt, sobbing, inconsolable, empty, angry, defiant, protective, tired, exhausted, mangled, robbed, alone, searching, waiting, remembering, hiding, accepting, acting, performing, stressed, breathing, living, loving, embracing, storytelling, chronicling, hoping.

2009-04-08T00:53:00.003+10:00

A picture of Thomas with heaps of toys to look at.

Hello Bubby, I've missed you.

Mum.

Pearls of Pooh

2009-04-01T14:59:00.007+11:00

I love stories about Pooh and Piglet and Owl and all the creatures in the Hundred Acre Wood.

I read the book "The House at Pooh Corner" by AA Milne to Thomas while he was in the NICU. I even sang the songs and did funny voices for Owl and Eyeore. It is quite a funny book and at times even the nurses were giggling at the antics.

One grandpa came over to me once while I was reading about Pooh and the Hundred Acre Wood, he told me that he thought that it was great that I was reading to Thomas, he encouraged me to keep on doing it. That was actually very sad day for me because I had realised that morning that Thomas was not going to get better. I was reading in defiance of that outcome, it was as if I read to him really well, he would live.

Here are a couple of Pooh-isms

And as they walked Piglet said nothing, because he couldn’t think of anything, and Pooh said nothing, because he was thinking of a poem. And when he thought of it he began:

What shall we do about poor little Tigger?

If he never eats nothing he’ll never get bigger.

He doesn’t like honey and haycorns and thistles

Because of the taste and because of the bristles.

And all the good things an animal likes

Have the wrong sort of swallow or too many spikes.

“He’s quite big enough anyhow,” said Piglet.

“He isn’t really very big.”

“Well, he seems so.”

Pooh was thoughtful when he heard this, and then he murmured to himself:

But whatever his weight in pounds, shillings, and ounces,

He always seems bigger because of his bounces.

“And that’s the whole poem,” he said. “Do you like it, Piglet?”

All except for the shillings,” said Piglet. “I don’t think they ought to be there.”

“They wanted to come in after the pounds,” explained Pooh, “so I let them. Its the best way to write poetry, letting things come.”

........................................

“Pooh!” squeaked the voice.

“It’s Piglet!” cried Pooh eagerly. “Where are you?”

“Underneath,” said Piglet in an underneath sort of way.

“Underneath what?”

“You,” squeaked Piglet. “Get up!”

.........................................

So he sat down on the stone in the middle of the stream, and sang another verse of his song, while he wondered what to do.

The other verse of the song was like this:

I could spend a happy morning

Seeing Roo,

I could spend a happy morning

Being Pooh.

For it doesn’t seem to matter,

If I don’t get any fatter

(And I don’t get any fatter),

What I do.

The sun was so delightfully warm, and the stone, which had been sitting in it for a long time, was so warm too, that Pooh had almost decided to go on being Pooh in the middle of the stream for the rest of the morning, when he remembered Rabbit.

.........................................

Its a Jagular,” he said

“What do Jagulars do?” asked Piglet, hoping that they wouldn’t.

“They hide in the branches and drop on you as you go underneath,” said Pooh. “Christopher Robin told me”

“Perhaps we better hadn’t go underneath, Pooh. In case he dropped and hurt himself”

“They dont hurt themselves,” said Pooh. “Theyr’e such very good droppers.”

........................................

“Pooh” said Piglet reproachfully, “haven’t you been listening to what Rabbit was saying?”

“I listened, but I had a small piece of fluff in my ear. Could you say it again please Rabbit?”

.......................................

“Rabbit’s clever” said Pooh thoughtfully.

“Yes said Piglet, “Rabbit's clever”

"And he has Brain”

“Yes” said Piglet, “Rabbit has Brain”

There was a long silence.

“I suppose, said Pooh, “that that’s why he never understands anything.”

......................................

Instead of going to the Cemetary today

2009-03-29T19:24:00.021+11:00

I wanted to go to the cemetery today to visit Thomas' grave. We don't visit there very often but when I woke today, I thought I would like to. In all of the days business, we didn't go.

My son gave the car a cut and polish. It takes quite a while. We are a one car family, it was out of action for almost the whole afternoon. Then it was close to sunset, the cemetery gates are closed at sunset.

This afternoon Dean and I went for a walk instead. We went to the reserve on the top of the hill at the end of our street. There is a lookout tower.

Its a conservation area, no dogs can go there.

It is a beautiful piece of Aussie bush with locally indigenous Australian flora.

A few of the species are flowering.

This is Correa

This is Westringia (I think)

This is Banksia

The view from the lookout tower is over our town and across the shore to the waters of Port Phillip. It is the perfect place to sit and reflect.

We had planned to go there at night to watch the sky. We haven't done that yet. It is one of those things that we wouldn't have been able to do with Thomas. He had very high care needs, we would have needed to take oxygen bottles and medical equipment everywhere he went. Going bush would have been dangerous. Even just to the bush at the end of the street.

He paid the highest price for freedom.

What we would give to have him back.

This is the trail we walked on to get to the lookout.

This small area was burnt a couple of months ago. It is already regenerating. There are brand new tiny plants everywhere you look.

This is the trail coning down the hill.

The reserve surrounds a massive water tank (the big green thing) which sits on top of the hill.

Correction;

Our family had an addition this week,

we are now a 1 car

and 1 motorbike family.

p.s. It is a very clean and shiny car now, thanks Daniel.

Under The Tree - March 2009

2009-03-27T09:22:00.027+11:00

Do you have a special place in your home for your baby? What is it like? Do you have any rituals that you perform in memory of your baby?

In the corner of my bedroom, I have Thomas' mobile hanging and pictures, his teddy is there too, wearing the red satin donut that I made for Thomas and he loved. His corner is on the right side of the bed near my head, it is normally what I look at before I go to sleep, and what I see when wake up.

I never even thought about beginning a a ritual for Thomas. I know some religions have rituals that are practiced for the dead. I have never been exposed to them, so I don't know what significance is attached to them. The idea of lighting a candle every night is lovely although I couldn't do that, because I would be the person who forgot. I would either forget to light it or forget to extinguish it. I would be alternately calling the fire brigade or feeling guilty.

Some of the graves in the cemetery have little lanterns on them, I have seen a lady going around lighting them all some evenings. An Asian religion requires that food be left for the departed so that their spirit will remain satisfied in the afterlife and not come back. I would struggle with these sorts of things. I suppose if I belonged to one of these religions, I would know the significance and probably not forget. I don't know.

If you believe in an afterlife, do you receive signs from your baby? Have you ever felt their presence? Do you find them in nature? Do they visit you in your dreams?

I believe that my baby is in heaven and I will be reunited with him there.

Before Thomas died I was given a vision of him by a man (TN) who also had Osophageal Atresia when he was born. TN was now in his mid 20's. I could see that it was possible for my son to become a fully grown man too one day. It gave me hope. TN recorded a dream that he sensed was given to him by God for our encouragement. He emailed it to me and here

is a link to it. When it was received, I was unsure of the encouragement, afterwards I realised that it was for help in our grief.

After Thomas died I was given a book. Its called "my dream of Heaven""Originally published as Intra Muros" by Rebecca Reuter Springer.

The gifter had read the original book "Intra Muros" many years ago. She recalled passages about babies in the very old book she read about 50 years ago, those passages don't appear in the recently published book. I was curious enough to see if I could get hold of the original book. I could and I did, via the company Alibris, it was sent to me from halfway around the world. It has beautiful pictures and poetry in it.

This picture is from page 53.

I scanned this picture from page 33.

There is an extra chapter in the old book that wasn't published in the new book, and that extra chapter has lots of references to children. Other chapters and passages bear similarities to the prophetic vision given by TN.

The book was given to me because the gifter felt that it was comforting to know that babies and small children are loved and cared for in heaven.

A passage in Chapter 7 on page 33 reads....

"When we emerged form the water we found the banks of the lake almost deserted, everyone having gone, at the call of bell, to the happy duties of the the hour. Groups of children still played around in joyous freedom. Some climbed the trees that overhung the water, with the agility of squirrels, and dropped with happy shouts of laughter into the lake, floating around upon its surface like immense and beautiful water-lilies or lotus flowers. "No fear of harm or danger; no dread of ill, or anxiety lest a mishap occur; security, security and joy and peace! This is indeed the blessed life," I said, as we stood watching the sports of the happy children."

And another passage in the same chapter reads...

"Not far from our home we saw a group of children playing upon the grass, and in their midst was a beautiful great dog, over which they were rolling and tumbling with the greatest freedom. As we approached he broke away from them and came bounding to meet us, and crouched and fa

wned at my feet with every gesture of glad welcome.

"Do you not know him Auntie?" Mae asked brightly.

"It is dear old Sport!" I cried, stooping and placing my hand around his neck, and resting my head on his silken hair. "Dear old fellow! How happy I am to have you here!"

He responded to my caresses with every expression of delight, and Mae laughed aloud at our mutual joy.

"I have often wondered if I should find him here. He surely deserves a happy life for his faithfulness and devotion in the other side. His intelligence and his fidelity were far above those of many human beings whom we count immortal."

Such a beautifully illustrated book

(I am tempted to say "tome")

And another passage...

I remember once seeing a little girl enter heaven, the very first to come of a large and affectionate family. I afterward learned that the sorrowful cry of her mother was, 'Oh, if only we had someone there to meet her, to care for her!" She came lovingly nestled in the Master's own arms, and a little later, as he sat, still caressing and talking to her, a remarkably fine Angora kitten, of which the child had been very fond, and which had sickened and died some weeks before, to her great sorrow, came running across the grass and sprang directly into her arms, where it lay contentedly. Such a glad cry as she recognized her little favorite, such a hugging and kissing as

that kitten received, made joy even in heaven! Who but our loving father would have thought of such comfort for a little child? She had evidently been a timid child; but now as the children gathered about her, with the delightful freedom they always manifest in the presence of the Beloved Master, she, looking up confidently into the tender eyes above her, began to shyly tell of the marvelous intelligence of her dumb pet, until at last Jesus left her contentedly playing among the flowers with the little companions who had gathered about her. Our Father never forgets us, but provides pleasures and comforts for us all, according to our individual needs."

My husband has heard words in the wind, from Thomas. I am envious of that.

I have never felt Thomas' touch on my skin, but there are little things that I feel blessed because of.

On his 1st birthday I went back to the duck pond that we had walked around on the day of his birth. A feather stood out on the grass, so I picked it up, I felt it had been left for me. I have kept it. There were hundreds of feathers on the grass that evening, I didn't see any others though, not until I picked this one up.

When we remembered Thomas on his anniversary a plane flew overhead. An old fashioned bi-plane! Just like the ones in his mobile. That was a sign! He was with us.

Do you have a special poem, song, prayer or quote in memory of your baby?

I have written some poetry but it seems a bit bleak when I read it today. I love finding beautiful poetry, bright or bleak, I don't mind.

In keeping with all of the above, I thought I would attach two verses that were scanned from "Intra Muros". I have no idea if it is two verses of one poem or two separate pieces.

Longfellow sure has a way with words.

I am Grateful

2009-03-20T16:06:00.005+11:00

I wanted to follow Skys example and post a list of all the things I am grateful for. Thanks Sky, after reading your post, I was prompted to think of my own grateful list.

I am grateful for my children, that includes our little Thomas. I am grateful for my days as a mother. I am grateful for my Husband, I am grateful for the love that he showers on me daily. I am grateful for my home and the protection and privacy it provides me. I am grateful for our jobs and the income they provide.

I am grateful for memories the easy ones and the hard ones. I am grateful for family and friends and their relationships (good and bad) because they become living memories. I am grateful for my experiences even when they don't seem positive, they are always positive because I will always learn something about myself or others.

I am grateful for my mind and my health. I am grateful that I have freedom to make choices about my life, where I go and what I do. I am grateful that my God loves me, even though I know he just cant help it.

I am blessed also. Thank you.

NICU Mummy

2009-03-20T08:12:00.014+11:00

Yesterday I attended a training course for my work. It was all about how to give someone a meal via a tube (Gastrostomy). Yuk, I hated it. I spent most of the time struggling not to cry.

They even showed a video of how the tubing is inserted into someones stomach, including the incision into the skin, there was blood and endoscopic video. On a few occasions I had to turn away from the screen. I kept reliving people doing all that to my baby.

Thomas had a gastrostomy because his oesophagus was not joined to his stomach until he was 15 weeks old.

Thomas had major surgery on 2 occasions and he had about another 6 different surgical procedures, and there was always an IV line to re-insert after the last IVs vein had shut down. I didn't get used to it and I didn't cope very well with watching people make holes in my baby. I didn't like seeing him covered in Betadine after surgery, or with blood on dressings, or with medical debris or blood on his sheets. I felt very distressed by it. I liked his bed cleaned up as soon as possible, his skin washed, I liked to replace dressings as soon as it was allowed.

I knew that I had to be strong, but there are some things that I was not strong enough for. Generally it was blood that I was most upset by.

I have two sets of photos of Thomas. There are the nice ones, and there are the nightmare ones. In the distress of those moments I would take photos. I used to say that when he grows up he will never believe all the fuss that was being made of him, and that's why the photos. But really it was because I couldn't look, I could hide behind the camera. If I wanted to see later, I could just look at the pictures. I haven't wanted to. I won't post one for you to see either.

It was often a nightmare, watching him be prepared for surgery, being informed of everything that could go wrong during surgery, seeing him post surgery when he was so sedated, meeting with doctors, even being there for rounds was harrowing. When the doctors would gather round his bed for rounds, they would list all of Thomas' diagnosis. Sometimes they would surprise me with one, like this one, for a few weeks they described him as being opiate dependent.

In the training course that I went to yesterday, they talked about how meals form a major part of how we show love and nurture our loved ones. Giving food is related to giving love, so when someone has a gastrostomy, that loving part of our relationship changes to a medical procedure. They explained that parent will often exert themselves in another area to make up for losing the normality of feeding their child.

I just didn't know how to be the mummy of a baby in intensive care. I couldn't feed him, I usually couldn't hold him, he didn't cry (because of all the tubes in his mouth and throat), some days the only normal baby activity was to change a nappy. Really there was nothing normal about that either as Thomas usually had IV lines inserted in his groin, complete with dressings and etc it was a very careful nappy change. Mostly I just waited.

I growled at nurses and complained a lot. Even then the staff still encouraged me. They didn't get upset with me. They knew that I was advocating for a very sick little boy. I was his voice. I wanted him to be treated like a person who mattered, which he was. Some of the staff treated him like a person who was special, and at least a few treated him like a person who was treasured. I still cry when I think of how those people made Thomas' time in the NICU and my life bearable. They empowered me and encouraged me to stake a claim in shaping Thomas' care plan, and helped me be his mummy.

I was asked to share one good thing about my baby at the last group I attended. I didn't want to say the one good thing that I could think of was that he was cute. He was more than cute. So I said that he opened his eyes when he heard my voice. It doesn't sound like very much. I know that most of the baby lost mamas who blog would say that it would be their dream, their miracle. But in saying that one good thing about Thomas was that he responded to my voice by opening his eyes, it didn't seem like much at the time. Especially when the other parents were saying that their child was always joking or they never let their illness get them down, they had an infectious smile, they put people at ease. They seemed like much more significant things than opening eyes.

I know it was more than just opening his eyes. It meant that he knows me. It meant that he felt safe with me, it meant that he knew I am a good thing in his life, he knew I am his Mummy. The atmosphere in the NICU is so unnatural, the babies are attached to machines, recovering from surgery, overstimulated by all the busyness and alarms and lights that they simply have to shut their eyes to block it all out. I know that often Thomas would be awake but he would have his eyes shut. I could tell from the heart rate monitor if he was asleep.

It made me feel better to know that he loved me.

I am glad I read "The House at Pooh Corner" to him, that I bought him Cd's and played them to him. I am glad that I made him toys that he loved, and decorated his cot with a mobile and hanging toys. I made him a string of bells that would jingle when he touched them (even when it was me moving his arm so that he reached out). I am glad I did all those things. It was a way of me being his mummy when it was all so way out of control.

Season, Reason, Purpose.

2009-03-10T21:28:00.016+11:00

One day at the beginning of time, God created many many people. He created so many people that they all couldn't live on earth at the same time together. It would be too squashy for them. God solved that problem. He gave every person their own time to live. After the people had their time on earth they could go back and live with God (if they wanted to). God has a really big house and everyone who wants to live there is welcome.

One baby was ready to have his time on earth. His name is Thomas.

God created little Thomas with a particular family in mind, they lived in Australia. Thomas was perfect for this family, he fitted right in. The family already had lots of love for him and they bought him a bed and a pram and nappies, and made a place for him in their house. The family had spent a lot of time planning all the places they would take him and all the things they would teach him. They were very excited to have him in their family and they waited and waited for him to come.

When Thomas was born his family were so happy to meet him.

Thomas was a bit different to some of the other babies that were born that day. Remember though, Thomas was made by God to fit right into his family.

Thomas only had a little while to stay with his family. The family didn't know that right away. Only God knows the number of days that we have on earth.

Thomas knew that his daddy and mummy needed him to bring them closer, he knew that his brother needed someone to cuddle and protect, he knew that his Grandma needed to understand that different is alright, his Auntie needed to know that babies are very special people no matter how small they are and his Grandpa needed to know that now is the best time to say I love you.

Thomas' grandma made him a blanket, his Auntie took his picture, his uncle bought him a bear and his brother did a drawing. Everyone, especially his mummy and daddy and brother loved Thomas.

After Thomas did everything that he needed to do, after he changed so many people, he was ready to go and live in Gods house.

He really loved his mummy and daddy and his brother. He was so happy to have met them. He didn't want to make anyone sad. He just knew that it was time to go back to Gods house.

Gods house is a happy place. Thomas knew he would have lots of fun there. He would be able to do lots of things that babies definitely don't do here. He would fly a plane and swim in the sea, and he would never be sad or have a hurt there.

Thomas was really glad that his family loved him and let him show his purpose to them. When Thomas went home to Gods house, he hoped his family would remember his purpose.

He knew that they loved him and they would miss him because they told him over and over.

Thomas knew that if his family remembered his purpose when they were missing him, they would remember that being closer and having more cuddles, looking out for each other, helping the special and different shine out of each other and taking the time to say I love you, is so very important. These are the very things that would help Thomas' family the most when they are missing him.

Thomas came for a season for a reason and with a purpose. God gave such an important and special purpose to Thomas even though he was a baby. God sent a beautiful special baby to our family so we would remember, we all have a purpose too.

A New Baby

2009-03-05T10:53:00.007+11:00

I would like to welcome our new friend baby Mia. She is 17 days old in this picture, I it took yesterday .

Her Mummy is really tired and just needed a nap. My wonderful husband got Mia to sleep, and then he nodded off himself. He didn't want to give her back even with a dirty nappy and empty belly.

There are conflicting feelings that I have about baby Mia coming into the world. Firstly I am happy for her parents who were very unprepared for their relationship to include parenting. They have made it. They love her to bits.

When her mummy went into labour, I just cried and cried. I was devastated. I knew it was going to happen at some point, but I was unprepared for the pain that I would feel at that time.

It makes my heart happy to see baby Mia in the arms of my husband. I want to see him with his own baby in his arms. I am sad that his own baby is not in his arms.

I am angry at God because Thomas was so sick and died so young. He went through so much. Here is Mia who is healthy. In a moment in time God creates thousands of babies that will grow up and get old before they die. And He also creates babies like Thomas who will stay for a short while.

Thomas is a blessing to our life, we have such joy, and huge sadness too. I am still angry though. Why didn't he make Thomas well enough to live? I have a heap of answers to that question, a lot of them offered by people after he was born, most of them are simply crap. The only real answer is, He didn't, not because of any malice or manipulating desire, not because of my sin or my husbands sin, not because of any curse that was laid on our family, not because we did something to invite Satan to destroy our dream, not because we had weak faith, not because we failed to declare the promises of God and pray to Him, and not because we are special people who are strong and God thought we could handle it.

The only reason is that He didn't.

I just struggle to accept that reason. I can accept that I struggle to accept it, I am fine with that.

He Flew Away

2009-03-03T19:29:00.014+11:00

Thomas flew away over a year ago.
We played this hymn at his funeral,

I'll Fly Away (Albert E. Brumley)

Some Glad morning when this life is o'er,
I'll fly away:
To a home on God's celestial shores
I'll fly away. (I'll fly away)

I'll fly away, Oh Glory
I'll fly away;
When I die hallelujah by and by
I'll fly away. (I'll fly away)

When the shadows of this life has gone
I'll fly away
Like a bird from prison bars has flown
I'll fly away. (I'll fly away)

I'll fly away, Oh Glory
I'll fly away;
When I die hallelujah by and by
I'll fly away. (I'll fly away)

Just a few more weary days and then,
I'll fly away
To a land where joy shall never end.
I'll fly away. (I'll fly away)

I'll fly away, Oh Glory
I'll fly away;
When I die hallelujah by and by
I'll fly away. (I'll fly away)

Thomas was given a mobile as a birth gift, it is beautiful, with 4 wooden planes in red yellow green and blue, it was too big to have at the hospital so he never saw it, but I told him about it.

After he died I hung the mobile up in mine and Deans room, in the corner near his picture. I have spent countless hours staring at the planes, Dean and I talk about which plane Thomas would fly. One plane is missing a wheel but we think that Thomas would fix it if he wanted to fly that one. I think that he would fly the red one. He has a red pram that he never got to try out. He had a red casket too.

It was Thomas' Anniversary on Saturday. My Husband and I, our friend, my youngest Son, 2 Sisters and one sisters Husband and the dog went to the beach in time for sunset. The plan was to write Thomas' name in the sand, to have paper bag candles, some sandwiches, a baileys and let some balloons go. I thought about trying to writing something eloquent to say, to be read out at the right time. How do you say that your heart is broken and you are sad in everything that you do because he isn't there too, I mean how do you say that eloquently? I am tired of being sad, actually I am exhausted of being sad. I decided that I would be happiest if we just gathered together and reflected on Thomas, not focus on his death. No heartbreaking reading.

Just before sunset a plane flew past. We were just amazed. We talk about him in his plane all the time and loook at his mobile.
The plane flew along the shoreline and when it got overhead it turned and flew inland. I cant explain why but I don't feel it was a coincidence that a plane came our way at that time. I think Thomas sent it, or he asked God to send it.

Our gift from our son, hope and pride. I felt proud of him when I saw the plane.

We wrote notes to Thomas. My husband wrote on his note to Thomas "We saw you flying your plane". I wrote "Hello my baby, I love you". We attached our notes to balloons and let them fly away too.
Dean also made a stone mound and he put the candles in paper bags around it.
When Thomas was in NICU and we were living at Ronald McDonald House, because I was expressing milk the hospital supported my decision to breastfeed by suppling my lunch and dinner if I wanted it. I collected it from the kitchen in paper bags. We used those paper bags for the candles. We burned them at the end of the evening. I still have a couple though.
This picture shows the candles. We stayed at the beach until it was quite dark. It was not too chilly and it was very quiet. We chose a beach right away from homes so we could have it mostly to ourselves. We only saw 3 other people all through the night.

We even got a beautiful shot of Thomas' name in the sand. At sunset of course.

Under The Tree - February 2009

2009-02-27T15:57:00.016+11:00

http://scarletriver26.blogspot.com/2009/02/under-tree-february.html
How long have you been blogging for? Why did you start? What do you want from writing?
My name is Julie, I have been blogging since June 2008, it was just recipes though, no thoughts, I was really trying not to think too much then. A Blog was just a way to keep some recipes together for a job I was doing. But I discovered a blog is a very useful tool.
I started this blog about Thomas only a week and a half ago, after I discovered Carlys "Names" blog and "Love Reigns". I read stories from some other followers blogs, I was motivated. I wanted to make a memory scrapbook blog and have all the emails that I wrote about Thomas and pictures and poetry safely in the one place. I had emails stashed in 2 different computers and on the internet. Photos were not very easy to find either. I felt that it was time to get everything one place. It is Thomas' Anniversary tomorrow, he died on the last day of summer last year (29th February). It was a leap year last year, so we are recognising the 28th as his anniversary this year. There is a kind of audit of my feelings going on at the moment.
I probably would have left my blog at that point (just as a memory page) until Carly invited us to come under the tree. So here I am for the very first time sharing my feelings directly on my blog. I feel that I kind of belong here. I can relate to so many of your stories, thoughts and feelings.
Where is safest place for you to share your feelings? Is there anywhere you feel completely accepted just being however you are really feeling?
I haven't really found a public place to share my feelings yet. I can say anything to my counsellor, that is important. I go to a group, but the group is about everyone, not just about me. It's important to be sensitive.
Can you recommend any books that you have read that have given you a new insight, hope or courage in this new life you find yourself in?
I read a book called "The Shack". Its about a man whose daughter goes missing and how he changes over the years that follow, and about his pain, how he comes to a place of peace within himself, and about how he comes to a place of peace with God.
He was angry at God for a long time. I have been angry at God too. I have sometimes felt like a failed Christian, because all my prayers (and everyone elses) didn't bring about healing. The Bible gives me hope, it brings peace into my life. I don't feel very courageous.
How would you describe yourself before you lost your baby. How have you changed, who are you today?
I was not a very emotional person. I probably lived on the surface of things. I was very independent. I didn't know much about grief, or about or deep emotional pain. I had no idea how someone that lost a baby would feel.
I am still a mother, I would rather do things with my other 3 boys, than talk on the phone or do housework. I have been a little more emotional towards my children than I ever have. I feel like I have more capacity now. I am still a bit of a mess (see some of my poetry). I am still living with a huge box in the middle of my living room filled with most of Thomas' things. It has a pram, car seat, bath, change mat, I don't know what else, but it is a big box. I still haven't finished the thank you notes from his funeral. I don't think I will. I didn't want my baby to die and I don't want to thank anyone for coming to his funeral. I have also noticed that I don't want to wear my old clothes anymore, the ones that I wore when I was pregnant and before I was pregnant. There are too many memories in those clothes.
How do you think you are coping? Do you see any light in this road or is it all dark right now? Where do you imagine yourself to be in a years time?
I am conscious of letting my grief take its course. Shutting it down can mean getting really sick and I dont want that to happen. I wrote this on my blog "Grief is not logical, I do not know where it will take me day by day, but I have found that it is better if I don't resist, it is better if I let it take me where it will."
In one years time I hope that I will be able to function more naturally. That I will have more friends, that I will care more if the house is clean, I will care more about looking after my body.

Thomas' name in the sand

2009-02-18T16:22:00.009+11:00

http://namesinthesand.blogspot.com/

in the snow at Whistler

in the little bit of sand on Pebble Beach on Martha Point Mornington Peninsula

If I Wished on Wishes

2009-02-17T22:30:00.000+11:00

Memories are the places I go to enjoy
Time spent quietly with my little boy
Sometimes others see that I've gone
Mostly, before they know it, I'm home.
Longer vacations might take all day.
Those are the days I stay in Pj's.

But

Since I lost you I can't stop searching.
I do it without even thinking.
I've Googled your name, and searched the maps,
panned North and South and zoomed up close.
You're not on the social networking sites either,
The picture isn't yours on Facebook friend finder.

If you had email I'd send you one every day.
If you had a mobile I would SMS, Hey :-)
If you were here I would take your picture.
And that cute T-shirt, it now would have fit you.
I'd round up a million memories of you as you are,
and store them all away in my heart.

I know you are somewhere nearby,
not in the ground and not in the sky.
You are somewhere that I cannot go,
I'll still keep on looking for you, even though,
I know it wont be you when I get close
(because life is better when lived with hope).

Its just not fair that you went so soon,
I know you were ready, I suppose I was too,
And I know its not a permanent goodbye.
But, I miss you. I miss you all of the time.
And, if I wished on wishes, my wish would be to,
hold you again, and remember every part of you.

by Julie Cozens

The Shoes I Wear

2009-02-17T22:13:00.000+11:00

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I dont think I can take another step
Yet I continue to wear them.
I get funny looks wearing these shoes.
There are looks of sympathy.
I can tell in other's eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on you can never take them off.
I now realise that I am not the only person that wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try to walk in them so they don't hurt quite as much.
Some have worn these shoes so long that days go by before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Author unknown

The Truth

2009-02-17T17:56:00.000+11:00

"You are a great God.
Your character is Holy.
Your truth is absolute.
Your strength is unending.
Your discipline is fair.
Your provisions are abundant for our needs.
Your light is adequate for our path.
Your grace is sufficient for our sins.
You are never early, never late.
You sent Your Son in the fullness of time and
will return at the consummation of time.
Your plan is perfect.
Bewildering. Puzzling. Troubling.
But perfect."
- Max Lucado

When Tears and Broken Hearts Agree

2009-02-17T17:50:00.002+11:00

Commission new life, with hope
our brand new person,
first child, a brother, grandson
love dwells in every thought

Belly swells, a promise of life
fluttering begins, plans take shape
changes inside, waiting outside
the craftsman takes time

Stories told in the dark of night
how he will this
and I will that
excitement and longing grows

Scenes imagined on cue
malls an ever flowing baby parade
modern strollers, co-ordinated, accesorised
proud mums, I thought I'd be one too

Finely tuned, expertly crafted
so delicate, so dependant in the womb
doctors watch and wait, a few weeks more
horizon growing stormy, cold with fear

My child, my baby so close inside me
helpless to help him, pray
please let him be born Lord
alive to see his daddy's face

Hope and wait, pray and pray
parents today, a cry signals relief
now we are three, happy
marathon ran, all survived

Preparation is never enough
on the backdrop of fluffy blankets
minds wrestle to grasp
reality of anatomy gone wrong

Unknown words tumble forth
Patient and kind doctors explain
Surgery, transfer, emergency transport
first we will bring him in,

Maker made him, picked just for us
He knew we loved him
right from when he was really small
best place now, third floor somewhere really huge

Education, information learned, relayed
BP, HR, platelet, chromosome
too much, not enough, chimes call out
intense, neonatal, intense

Surgery stopped, the best know when
delay will save lives, he'll be stronger then
baby so still, so many machines
time passes by in fifteen minute alarms

Hope floats then drowns
be brave, stay positive, pray
make milk, it's something only I can do
cherish life, collect memories, be there

Belief outstrips, setbacks overcome
success, anatomy at last set right
hope and wait, pray and pray
Soon we will be a family at home

Created for a season, a purpose
time to leave, dignity
no more to be done, circle closing
tears and broken hearts agreed

Peace, loving arms our parting gift
yours, a whisper on the wind
richer and wiser we grew
welcoming and farewelling you

Bereaved, desolate days without end
patience till we meet in the next place,
we'll wait to see you there
in the garden, not on the third floor

From the heart of a bereaved Mother

2009-02-17T17:40:00.000+11:00

This is now what "normal" is...
Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.
Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.
Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.
Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.
Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.
Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.
Normal is staring at every baby who looks like he is my baby's age. And then thinking of the age they would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.
Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.
Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".
Normal is each year coming up with the difficult task of how to honor your child's memory and their birthday and survive these days.
And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.
Normal is my heart warming and yet sinking at the sight of something special my baby loved. Thinking how he would love it, but how he is not here to enjoy it.
Normal is having some people afraid to mention my baby.
Normal is making sure that others remember them.
Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.
Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.
Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.
Normal is taking pills, and trying not to cry all day, because I know my mental health depends on it.
Normal is realizing I do cry everyday.
Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.
Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of your child.
Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.
Normal is feeling a common bond with friends on the computer in England, Australia, Canada, the Netherlands and all over the USA, but yet never having met any of them face to face.
Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.
Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my baby is in heaven, but hearing people trying to think up excuses as to why healthy babies were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.
Normal is being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.
Normal is wondering this time whether you are going to say you have two children or one, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have 1 child to avoid that problem, you feel horrible as if you have betrayed your baby.
Normal is avoiding McDonald's and Burger King playgrounds because of small, happy children that break your heart when you see them.
Normal is asking God why he took your child's life instead of yours and asking if there even is a God.
Normal is knowing I will never get over this loss, in a day or a million years.
And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".
------ author unknown ------

Pictures of Thomas 9/11/07

2009-02-17T17:35:00.000+11:00

Hello everyone,

Some of you already know that there are pictures of Thomas that you can view on the internet, for the people that I haven't told yet, here is the link...

http://harveynorman.fujicolor.com.au/Deanandjulie

I have updated the pictures this morning.

Thomas had a Tracheostomy performed in surgery yesterday. We can now see his face because his breathing tube (Trachy) is in his neck. This is likely to be a temporary measure and could stay in place for a few months or a bit longer. It means that he now has a safe airway. Thomas is still being assisted to breathe with the ventilator but that will be scaled back and hopefully removed in the next couple of days. It is just supporting him at present while he recovers from this operation.

We hope that Thomas can have his TOF/OA repaired next week, it depends on how well he recovers from this surgery and how he is going with the Pulmonary Hypertension (blood pressure in the arteries going to his lungs). Link to info about TOF/OA is below.

Thank you to everyone who is supporting us with prayers and meals, and thankyou to the drivers who have been helping me get around. Thank you for your visits, flowers, cards and gifts. We are still on the waiting list for Ronald McDonald house, we are hopeful of a room before next week comes around.

If you know of someone who would like an email update please send me their email address and I will include them next time. Feel free to forward this email yourself.

Lots of love from all of us,

Julie, Dean, Rowan & Thomas

TOF/OA Link
http://www.rch.org.au/oara/what/index.cfm?doc_id=1602

Thomas Update 20/11/07

2009-02-17T17:30:00.000+11:00

Hello everyone,
I am at the Royal Childrens Hospital typing this. We are now living at Ronald McDonald House at 16 Gatehouse St Parkville. We are on the top level which means climbing stairs to get to our room, I am getting fitter all the time.
Thomas is going well at the moment. Over the past week we have had some setbacks, things seem to have turned around yesterday and today. Some of the setbacks were, his Lymphatic drainage system were leaking fluid into his chest cavity, called Chyle Thorax. Firstly the fluid was drained using a needle and syringe then there had to be a drainage tube inserted which was a bit tricky and took a few goes to get it in, it ended up draining about 140ml. The fluid accumulation has stopped and the drain is now clamped. It is being opened a couple of times a day to see if anything else is there to drain away and he is having daily chest xrays.
Feeds have been stopped for a week and they are considering starting feeds again soon. Breast milk is out for now as he needs a special formula. The other thing that happened is Thomas' IV lines stopped working and they tried to get other veins to work but couldn't, all the good ones had been used, they even tried for a vein in his head. Thomas had too much fluid and that made it extra hard to get a line in. Thomas now has his medication going into his thigh where they have put a deep vein line, they had to make an incision to get to it. That can only stay in for a week (until Friday) because the infection risk gets too high after a week. Hopefully there will be a vein recovered and ready to take an IV drip by then. We are really hopeful that he wont need
another IV line until his next surgery.
Today Thomas is only being assisted to breathe with the ventilator 10 breaths per minute which is a drop from 40bpm on Friday. Also his medication is being dropped back little by little. On Saturday we heard him cry. It seems that he manages to get some air around his Trachy to make sounds with. You would have never thought that you would be so glad to hear a child cry. He is also a bit more awake and he is opening his eyes a couple of times a day and trying to get his hand in his mouth. He is wiggling around too. The best news is that they are going to try and get him onto CPAP tomorrow and get him off the ventilator. It is still assisted breathing but he will be doing all the work himself. That is a huge step forward. Hopefully for us we will be able to have a hold of him again.
We are playing music to him and reading to him he likes to have his face touched and hand held and he hates getting washed (its probably a boy thing).
Thanks again to everyone for your prayers and meals I have attached a photo you can print out if you like, I hope to see you all soon.
Julie
PS. Dean is working and staying at home part of the week and coming in here the other part. Rowan has started school at North Melbourne Primary.

About Thomas 29/11/07

2009-02-17T17:29:00.001+11:00

Hello everyone,
We are still at the hospital as you are probably aware. It is day 43 today and Thomas is going very well he was 6 weeks old yesterday. Thomas was moved to a new room (Number 8)
which is smaller and is quieter because his bay in Room 5 was needed for a more critical baby and Thomas is pretty stable at this point. That was good news. He has been weighed again, 5.095kg, that is about 11lb 4oz in the old scale.
I was able to hold Thomas yesterday as well, that was very good. He is a very cuddly baby.
We had a picture taken. I have been playing music to him, I am playing Sues music over and over, its very familiar because he has heard it every week at church. There is another CD with classical music that I am playing too. I am still expressing milk even though Thomas is not having it at present, I am hoping that he will be able to have it later on. Other medical stuff from last week.... The transfer from Respirator to CPAP has gone fairly smoothly. Thomas had a couple of events where he had to be put back onto the respirator fairly quickly, but he was soon back to CPAP and has remained with CPAP only for the last 4 days. The Chylothorax (fluid collecting in his chest cavity) has stopped and Thomas has has his chest drain tube removed yesterday. The deep vein IV lines were removed without infection or incident. His milk has been increased to full feeds without incident so all medicine is now being given orally (into his tummy tube). The morphine dose was weaned back 10% yesterday and will be weaned further on Saturday. We are weaning him back because he has had the Morphine for so long and he will need to have the full pain reliving effect of the Morphine when Thomas has his major surgery in about 1-2 weeks, that is having his Oesaphagus repaired.
Thomas is still being treated for Pulmonary Hypertension with Sildenyfil (Viagra). He is also being treated for an underactive Thyroid, which we are waiting for the results on the full testing that is being done. There is discussion about doing a study on his airways to see just how extensive the Bronchial Malachia is and at present they are trying to find the lowest possible air pressure that Thomas is comfortable breathing at. We got down to 8 but had to go back to 10 today.
It seems like a lot to take in, I am sorry, some of us just love details though.
Please feel free to forward this email to anyone who is interested. If you would like to reply that would be good. Its nice to know if this email gets to the intended destination.
Rowan is going quite well at school, he is still being himself, lots of fun and really great company, he is great with small children which the kids at Ronald McDonald House and their parents enjoy. We have had a few outings, most notably to the Melbourne Sports & Aquatic Centre and the Geelong Adventure Park (Courtesy of Ronald McDonald who also gave a magic show). Dean is working at the Shopping Centre 4 days a week and coming here the rest of the week. Josephine is able to feed the dogs on the weekends thankfully. We have had visits from both Grandmas during the last week and also Thomas' Great Aunt Shirley from Robinvale. Thank you to everyone for your visits, prayers and meals (we seem to have lots of meals
now), your support is essential.
Bye for now with love from both of us,
Dean & Julie.
Here are the links to photos etc. I try to update photos as often as I can, It was done Thursday last week. I have not attached photos this time because it makes the email too big for some servers.

http://harveynorman.fujicolor.com.au/Deanandjulie

Thomas Brodie Cozens 6/12/07

2009-02-17T17:28:00.000+11:00

Hello Everyone,
Thanks for your replies to my last email, my mailing list has now increased a lot, if you are missing out or getting this second hand and would like to receive it directly please let me know. I have updated the online photos today. The link is http://harveynorman.fujicolor.com.au/Deanandjulie
Thomas is doing very well this week. He had a Broncogram and another Bronoscopy in theatre yesterday. the report from the previous Broncoscopy showed that Thomas had severe Tracheal Bronco Malacia but the report from yesterday showed no such condition anymore. It was an amazing change, they even had to check that they were looking at the right babys report.
Thomas is still on CPAP but in theatre they experimented to see what sort of pressure Thomas needs. It seems to show very low pressures required, enough for the doctors to question if he needs the CPAP at all.
Thomas still has events where he stops breathing and his heart rate drops and his oxygen levels fall but the doctors think that it is related to the Pulmonary Hypertension rather than his airways collapsing. The cardiac guys have done an Echo Cardiogram this morning as they have been doing every week that we have been here (and sometimes daily) which may show a slight improvement but that is not official until the boss sees the report. Thomas is still on Sildenyfil for the Pulmonary Hypertension.
Thomas has a little infection at present which is being treated with 2 different antibiotics (they are treating his roommate also with the same drugs) the doctors have ordered tests of snot, poo and blood because it is not immediately obvious where the infection is. He had a tiny temperature yesterday for about an hour.
The other stuff that has been happening... I am continuing to express milk in the hope that Thomas will be able to have it after he has his surgery. There is no talk this week of when that surgery might be as the doctors are concentrating on discovering why he stops breathing when he gets upset. I have been able to hold Thomas another 2 times since I last wrote, and Dean has held him as well.
We are coming up for 4 weeks at Ronald McDonald House. We have had some free meals, prepared and served courtesy of AXA Australia, Medibank Private and ANZ Bank, also Carlton Rotary and a lady called Sandra who brought a gang of her friends. Christmas decorations have gone up at Ronald McDonald House and all over the hospital.
Rowan and I have been to the beach, walked around Nth Melbourne, played basketball and gone shopping, we are trying keep active, and I am trying to keep him amused. Rowan is getting a bit impatient with being here, he would rather be in his own home as we all would. Dean is at home with the dogs to keep him company, He is living around our kitchen renovation which included no hot water for a few days, it is sorted out now thankfully. The new kitchen is looking brilliant, thank-you Graham and his mates who are installing it. When I get home one day I will take a picture of it and post it on the Harvey Norman website for you to see.
Finally thank-you everyone for your visits, phone calls, meals, gifts and prayers. All of you who are praying please be encouraged by the good reports we have received this week.
With love from all of us, to all of you,
Julie and Dean.

To Mum 9/12/07

2009-02-17T17:22:00.000+11:00

Thanks for your email,

I came home tody for a couple of hours, so I checked my email at yahoo. Can you use the email at optusnet (the one I am using now) next time as that one is so much easier for me to open and stuff. Thanks.

Thomas has had a bit of Diarrhoea so he has had his feed stopped and just fluid for a while to see if that stops it. He is being given anti biotics still for the infection that they cant work out where it's located.
His IV line broke down yesterday and then his new one broke down today so he is probably going to have a surgical line put in because he needs that IV line. He has not got easy veins to pick up.
He looks good even though he has these fevers that come for a couple of hours and go again.
I still havent heard the results from the Echo that was done last week. He was awake for ages last night and Dean and I got to hold him for over an hour. He just looks around and has a bit of a chew on his Replogle tube (thats the suction tube in his mouth).
We went to a BBQ with the people from the Down Syndrome Association and we went to church at Frankston today. It has been a good day and I am enjoying the peacefulness of home. I dont really want to go back but I will soon.
We have to come back tomorrow as I have an appointment at the Gynaecologist. Rowan is going to drop in to his class at school. He starts swimming at North Melbourne tomorrow morning.
Dean took a truck to Sunshine on Friday for Malcolm but it wasnt ready to take back yet. It might be done by the time we have to go tomorrow or he might have to catch the train back another day to get it. The kitchen is halfway in.
I am taking photos to post on the website.
I hope you are finding the website good.
Hope to see you this week.
Julie

From Thomas' Mum 28/12/08

2009-02-17T17:21:00.000+11:00

Hello everyone,

It has been 2 weeks since I last wrote, I hope you all had a very merry Christmas. School holidays are here and lots of services have closed at the Hospital for the Holidays. The area that the computers are located in the hospital is closed for another 10 days so I am sending this email from home. We came home for the afternoon to do a couple of things and see if the house is still standing.

We have had some very good news. The last Echocardiogram showed that Thomas has nearly normal pressures in the arteries going to his lungs. Praise God that the Pulmonary Hypertension is now under control. All our prayers have been answered. The Sildenafil will still continue for now. Thomas is on a very high dose (about double) but the doctors dont want to drop it just yet. This means that Thomas's heart isn't pushing so hard anymore to get his blood oxygenated.

Thomas is doing well, considering everything that is going on. He is nearly finished his Antibiotics (for the Meningitis), that course is due to end on new years day. The IV line seems to have settled in nicely and is working well. The doctors are still slowly weaning down his morphine, now its down to 0.21, which is only 21% of his dose from last month. Also the pressure on Thomas's CPAP is being weaned down, we are on 7 now, tomorrow they are putting it down to 6.
Thomas seems to have recovered from the Diarrhea, it seems to have been a feed intolerance. We have switched to a different Formula called Alfare. He lost some weight when we switched his feed as the Alfare formula has less calories than Monagen. His weight dropped from 5.31kg to 5.010kg in 6 days! The volume of his feed has now been increased and he is now back to 5.190kg. My milk supply had almost disappeared due to lack of motivation on my behalf. I have been spending the last week carefully encouraging my supply to increase and I am doing really well, I have almost filled a bottle today!

Other things that have happened since I last wrote.... Thomas had a blood transfusion on Friday 14th Dec as his Haemaglobin dropped to 7.7, it came up nicely to 12.6 after thge blood. Often sick babies need to get a transfusion because they are not able to produce enough of their own red blood cells.

We spent Christmas day at the hospital. Santa came in a convoy of 10 Firetrucks, with lights and sirens! No trying to sneak around and get down chimneys. There were lots of volunteers singing and giving gifts, I am told Guy Sebastian was there with Kate Cebrano but we didn't see either of them. Thomas got at least 4 presents and Rowan got lots too. We had lunch at Ronald McDonald House and we are still eating the leftovers. Thanks for your Christmas cards, I got to read them today.

I will sign off there. Dean is finishing work soon and we are heading back to the hospital tonight.

I hope you all have a safe new year,

Lots of love from all of us to all of you,

Julie Dean Rowan and Thomas..

Thomas' New Year 1//1/08

2009-02-17T17:08:00.001+11:00

I took this picture last night at about 11.30pm. Its proof that Thomas did get some sleep. Maybe the flash woke him up and its all my fault. His tshirt says "I love my daddy... ....my daddy loves me"

Hello Everyone

Happy New year to you all. I hope you all enjoyed bringing in the New Year and, like us are looking forward to a prosperous 2008.

Rowan and Jamie (Rowans friend) and I went to the Melbourne Observation Deck (Rialto 360deg Skydeck) for a New Year celebration. Courtesy of Ronald McDonald, it was free food and drinks from 6.30 to 10pm. We were able to view the 9.15 fireworks display from 55 floors up. We were a lot higher than the fireworks. It was blowing a gale up there and it was really hot. It was a good New Years Eve to stay indoors. We had the most magnificent view over the city from day through to night. It was a great sunset too. There were Balloon Artists and a Magician with a dove and free pinball games too. We all had lots of fun and were home by 10.30pm.

Thankyou to everyone who has replied to my emails. I am sometimes able to reply but please don't be offended if I can't get back to you. I have limited computer time.

Thomas is going really well, he is looking really healthy and happy. He is awake a lot, in fact his Nurse said he stayed awake all night last night. Consequently he has slept through nappy changes and things today. We bought his little rocking seat into the hospital, he can have it in his bed when he is awake, he sits up in it. He has a whole new view of the world from there. He can see the toys we have put on his bed, its easier for him to see us, and he pays more attention to people now. We even get the occasional smile. A lot of this is because he is not dosed up on Morphine anymore, he is also a lot older, 76 days old today! It is really good after so many days of being so sick that he couldn't move.

The weaning of Thomas's morphine is at 0.08 which is only 8% of the dose he had 5weeks ago. Thomas is going to have a trachy change in the morning, the nursing staff are not taking chances that it will go smoothly. Even though the most recent study showed that he no longer has floppy airways. As of tonight there are no more antibiotics for the Meningitis, Thomas will have a lumbar puncture tomorrow to check that the Menningitis is gone.

Rowan is going to stay with Mum in Corowa tomorrow, for a week. I don't know who will enjoy that more, him or me!

Bye for now,

Lots of love from all of us to all of you

Julie, Dean, Rowan and Thomas.

More about Thomas 13/12/07

2009-02-17T17:08:00.000+11:00

Hello Everyone,
It was good to see our church family and catch up with you all when we came to church on Sunday. Also, thanks to Tina who invited us to her home on Sunday for a Barbeque with the families that have children with Down Syndrome. Thomas turned 8 weeks old this week.
Thomas is having an eventful week, the little infection he ad last week has eventuated into Meningitis. Menningitis is an infection in the fluid enclosed between the 2 films (Menninges) that surround the brain. It can be viral or bacterial, Thomas has the bacterial type and will be treated with antibiotics for 2 weeks or more. He also has really bad Diorrhoea at present, which is really like green water.
The doctors were able to get a long IV line into Thomas on Monday so they can run fluids and antibiotics but they are not willing to rely on that remaining functuall for that whole time so they are sending Thomas to theatre for a Broviacc line today they tell me that Surgery will happen at about 4pm. A Broviacc line is surgically inserted into a main artery they will be using the artery in his groin. The end (that the IV lines are connected to) comes out at another site further up his trunk or down his leg. This type of IV line can remain in for months (unless it becomes infected of course). It is the same sort of line that is used for some Leukemia patients.
The samples that they have taken of Thomas' Diorrhoeaa have not grown anything. We still don't know what is causing it. We are now working on the idea that Thomas might have an intolerance to his feed which is Monagenn. He is being changed to Alfaree formula today which is a different composition, it may help stop the Diorrhoeaa. The doctors have tried not feeding Thomas and just giving fluids and they have tried half feeds but the Diorhoeaa just keeps coming back.
The Doctor who I talked to today tells me that the Surgeon wants Thomas to be as well as possible before he operates, at this point the estimation is in 6 weeks time. The Pulmonary
Hypertension is still the main concern and Thomas continues to be treated with Sildenefil. Echo cardiograms are planned 2-3 weekly to check on the progress of his improvement.
Pulmonary Hypertension is high blood pressures in the arteries leading to the lungs. Basically the vessels are constricted (small and tight) when they need to be bigger, relaxed and open. This is the most serious of Thomas' conditions, as it has to be better before he can have surgery.
Thomas is continuing to be weaned off Morphine he is down 50% from the dose he was having
10 or so days ago. The pressure that the CPAP is running at has been dropped, Thomas is coping well with a pressure of 7cm and his oxygen requirement is not much higher than normal room air. These are all really good signs, along with his size, and the fact that he was born full term, bode well for the future. Yesterday Thomas weighed in at 5.18kg which is 11lb 7oz. He has moved back to room 5 although he is in a different bay now. He was moved as a result of a few other babies with changing needs, not because Thomas had an emergency.
Thomas has 2 champion Grandmas as during this past couple of weeks Betty has won the Singles at her Bowls Club for the third year in a row. Margot has won the Veterans Division in her Golf tournament. Congratulations to the Grannies. I hope you have enough room for the trophies. I have updated the pictures on Sunday and I have included a family shots album which has pictures of the kitchen. No progress on the kitchen this week except to say I bought some fairly dreadful light fittings which will have to go back.
Bye from us at the hospital,
Lots of Love too,
Julie Dean Rowan and Thomas
PS: it seems that Rowan might have to start grade 6 in 2008 at North Melbourne Primary after
all
Link to photos http://www.harveynorman.fujicolor.com.au/Deanandjulie

Re: More About Thomas 14/12/07

2009-02-17T17:06:00.000+11:00

Hi Josephine,
Thanks for your reply.
Glad to hear that you and maybe Janine will be coming into the hospital next week. Thomas did have a rough week, he has his Broviac line now, he came back from Theatre at about 6pm last night. He is looking very clean and comfortable this morning. Last night when I saw him he was still covered in Betadine and still had some blood. I am not good with the blood and dressings make me squirm.
I spoke to Dad last night but the phone cut out and he didn't ring back. If I buy a phone card I will be able to call out from my room. I am on the go constantly though and the mobile is really the best because I can answer wherever I am. Its a shame its so expensive.
I don't think that I need anything in particular. There is always the very heavy items that I hate having to lug home on the tram though; longlife milk, fruit & vegetables etc. Its a shame that those things are ones that need replacing the most. I will make a list when I know what day you are coming.
Bye for now, Julie

News From Thomas 15/01/08

2009-02-17T16:45:00.000+11:00

Hello Everyone,
I hope you are all well. I am sending this email from the Hospital as the Family Resource Room is now open again. I am trying a different email address because it is easier for me to use when I am at the hospital. You can reply to this one or the other one or both if you like.
Thomas has been busy as usual, since I last wrote. He has been diagnosed with Pneumonia today. It is a Right Upper Lobe collapse, which means Chest infection on his right side. I am told its not a really bad Pneumonia because its just in the one spot. Fortunately Thomas has a trachy so the nurses can suction the goo out of his Trachea that he coughs up out of his lungs. He is better this afternoon than he was this morning or last night. He is back on the Gentamycin & Vancomycin antibiotics as of midnight Sunday, (he had finished them on the 1/1/08 after the Meningitis). It is very easy for Thomas to get a bug because he occasionally has saliva spilling back into his windpipe and lungs, The hardware such as the trachy and the Replogle suction tube are easy pathways for bugs to get in, and Hospitals are bug laden environments even though there is antiseptic hand gel everywhere.
Thomas is Thirteen weeks old tomorrow, or today is his 91st day. The other day when he was upset and wouldn't settle I was checking out his gums for any swelling. I joked with the nurses that we could eventually be here long enough for him to get his first tooth before we get home.
There are quite a few babies here over 100 days old. It has certainly been a long haul and we are likely to be still in hospital for another 6-8 weeks.
A chest infection is a bit of a setback. The good news is that Thomas was able to spend 8 hours off CPAP last week. He had only humidified air coming through his tubes with a bit of additional oxygen. Every other time that he has previously had his air switched off Thomas has panicked and needed to be put straight back on. This time his air pressure was switched to zero and the nurses left his tubing still connected. Maybe it was a placebo effect, because the tubing was still there he wasn't alarmed. We don't really know why he coped this time but not other times, he did really well with his oxygen levels the whole time. He even coped with a sponge bath. He was exhausted afterwards though, all the next day he slept and slept.
Talking about baths, Thomas has had 2 real baths now, he is not too sure if it is a good idea, we make them really quick anyway. It is a real job getting him and all the tubing in the bath, it takes 3 people.
Thomas is now back on breast milk, that started again on 3/01/08, things are going along well there. He is making good headway into the frozen milk because Thomas is having 38ml per hour continuous feeds which ads up to 912ml per day. I am only producing about 300ml a day at present. There is still a lot of frozen milk.
Other stuff that happened since I last wrote. Thomas had a seizure on 3/01/08. It only lasted about 25mins as the medicine he was given settled him quite quickly. He had an EEG afterwards and then another one the next day, there was no further abnormal activity. The Doctors say that they would only investigate further if he had more seizures, which he hasn't had any so far. Also Thomas weighs 5.14kg, it has been fluctuating up and down for example he was 5kg 7 weeks ago and he was 5.3kg 4 weeks ago. He started big and grew quickly but now he has slowed down, his head is growing, its now 37cm.
We have been seeing a Music Therapist at the hospital whose name is Helen. Thomas really likes her and she has bought lots of new CD's, she sings little songs to him, and she has been very encouraging of us to read and sing to him as well. She even bought him a pair of headphones so that he can listen without disturbing others if need be. I think his room is much nicer with the music playing and I put it on all the time. His old favourites are Geoff playing Sues Southwind music and Cello Lullabies, we have now moved into Baroque Guitar, Oboe and Flute. There is a Handel piece that I think sounds heaps like "Michael Row The Boat Ashore".
The eagerly awaited arrival of Baby Ella and Baby Isabella happened early in the new year, a new cousin and a new friend for Thomas. Congratulations to Amy and Drew with the birth of Ella on the 4th of Jan. Congratulations to Kay and Matt with the birth of Isabella on the 2nd of Jan. I hope you are all enjoying your babies.
I haven't updated the pictures on the Internet since New Years day, the link to the website is http://www.harveynorman.fujicolour.com.au/DeanandjulieI will post some more pictures soon.
Thanks everyone for your replies to my emails, phone calls and birthday cards. Thanks to Nina (Janine) who came and did a wonderful colour for me yesterday. Thank you I feel much better. Thanks to Dad for bringing her too.
Lots of love from all of us to all of you,
Julie, Dean, Rowan and Thomas

Re; News from Thomas 18/01/08

2009-02-17T16:40:00.000+11:00

Hello Josephine,

Thanks for your message. We have good news, The Pneumonia has cleared, his chest X-ray shows no shadow on his lung anymore.
And, the Surgeon has returned from leave so we are now booked to have Thomas's Oesaphagus repaired on the 29th Jan. The booking of course depends on emergencies and whether they can fit him in but that is the plan.
We are still trying to work out how to manage his airways. He needs to have air under pressure but we are trying out a cycle where he has 1 hour off CPAP and 3 hours on. The idea is that he will get more and more used to not having the air under pressure and he will be able to go without it soon.
Also the doctors have realised that he is not growing so they have started fortifing his feeds. The frozen breastmilk will have run out after the weekend, I don't know what I am going to do then. I am not making enough milk to feed him. He is also being weaned off continuous feeds to bolus feeds to teach his digestive system to cope with a whole meal at once, of course it will be done very slowly.

Copy of email I sent to Josephine 25/01/08

2009-02-17T16:35:00.000+11:00

Hi Mum,
Further to the email that I sent Josephine (see below). I have been at the Family Court the last 2 days in a row and I now have a hearing listed for Thursday 31st January. I am making an application for the Federal Police to retrieve Rowan, unless he is returned before then.
He has taken Rowan to Queensland for a holiday, he has not taken his wife with them, she told his solicitor that they will be back on Sunday. It worries me to hear that he has taken Rowan to Queensland as I know that he has a brother living in Maroochydore and I worry that he will take him there to keep Rowan away from me.
A Duty Solicitor at the Family Court called his Solicitor this morning and informed him of my intention to file for a hearing. The solicitor tried to contact him and advise him but he was not answering his Mobile Phone. I have faxed the court documents to him this afternoon. This is very stressful.
Thomas is having a bad day today. He woke up because he was de-saturating and he was very upset. They weren't able to calm him and he had a fairly major event and he had to have sedation. he then had a temperature for about an hour and a half. his pulse was racing too. They took a chest x-ray and swabs of his trachy, and samples of his secretions to see if they could find any bugs. he is cool now and his Pulse is restful and his breathing is calm too. He is even a bit cool. It was scary for a while and I only arrived about half an hour after it started. He was so hot, I stripped his clothes off and took away extra blankets and put a cool cloth on his forehead. I know they are only simple things but I couldn't understand why the nurse hadn't already done that. I suppose she was busy with suction and extra oxygen etc etc.
Anyway it has been a stressy day and I have just about had as much stress as I can take. Good part was that Betty came to visit and she got to have a cuddle of Thomas before all that happened. I hope that he doesn't have any sickness because that will delay surgery.
Sorry I sound not very friendly.
See you soon,
Julie

Thomas' Surgery is Tomorrow 28/01/08

2009-02-17T16:20:00.000+11:00

Hello Everyone,
We have good news, Thomas is booked to have his Oesaphagus repaired (joined to his stomach) on Tuesday 29th Jan.
The booking of course depends on emergencies and whether they can fit him in but that is the plan. The Pneumonia cleared in 3 days so that was really good.
Yesterday Thomas' Broviac line had to be removed. It broke down Friday/Saturday and a contrast study that was done Sunday morning showed that it may have been fractured and was leaking into his tissues. Thomas had blood taken on Friday after he had a really high temperature of 38.9, the results of that test showed an infection which the Doctors were trying to manage with antibiotics. Saturday some swelling came up in his abdomen and Thomas had pain and he needed Panadol.
Panadol is a fabulous pain killer for babies its really effective. I would not have thought so, even though I have always given it to all my babies, when they are hooked up to all the Heart rate and respitory rate monitors and having their pain monitored constantly you can really see the effect. Its much more effective than on adults. Thomas had sedation yesterday so he slept all day until very late last night.
We were concerned that Thomas' surgery will have to be delayed because of the infection. He is still having antibiotics and the Surgeon Russell Taylor says that he will still plan to go ahead on Tuesday.
He will put another Broviac line in when Thomas is in surgery. In the meantime Thomas now has an IV line in his foot. The Broviac line is the white on that you can see in the pictures. It goes in just below his belly button under the skin and it enters the Femoral artery in his groin, it is used to deliver drugs into a large vessel. This is because babies have tiny veins that can be damaged by intravenous drugs so they need to be administered into large vessels.
We were trying to work out how to manage his airways by trying out a cycle where he Thomas had 1 hour off CPAP and 3 hours on. The idea was that he will get more and more used to not having the air under pressure and he will be able to go without it soon, it wasn't working very well. Thomas was getting a bit upset or stressed. The Doctors decided that we would stop trying to cycle his CPAP on and off. The reason being to give Thomas the best chance to be in peak condition ready for his surgery on Tuesday.
Thomas is now having fortified feeds, which means that he is having extra formula added to his milk so that he would gain weight. It seems to be working well, he has gained weight. The last weigh in was on Wednesday at 4.480kg. The frozen breastmilk has run out so he is having some Alfare formula as well as the milk that I am producing, I am making about 300mls of milk a day which isnt enough to feed him. He is having a total of about a litre of milk a day or 41mls per hour. He is having bolus feeds now so he will have 41mls in half and hour and then nothing for half an hour. This method is preparing his stomach to accept a whole feed at once instead of his milk being dribbled in continuously.
Thomas Turned 100 on Thursday. Days that is. He got a certificate and lots of attention, He spent lots of the afternoon on the floor in his rocking chair as you can see in the picture. He had a really good few days before all the stuff happened with the Broviac line. Deans Mum, Betty came to visit on Friday and she got to have a cuddle with him.
Rowan has been at his Fathers house the last 2 weeks but school is starting this week so he will be coming back. I'll write and let you know how the surgery went. To our army of prayers, please keep us in prayer at this time. Thank you and bless you all.Lots of love to all of you from all of us
Julie, Dean, Rowan & Thomas
Sorry, ran out of time to attach pictures, they are on the web though
please see the link at http://www.harveynorman.fujicolur.com.au/Deanandjulie

Thomas' Surgery is on Hold 29/01/08

2009-02-17T16:10:00.000+11:00

Hello Everyone,
Thomas is not going to have his Oesophagus repaired today. The Surgeons didn't want to repair Thomas' Oesophagus today because he has developed another chest infection. I found out about the chest infection after I sent the email yesterday. The Family Resource room with the computers that I use to send emails was closed yesterday so I couldn't get back online to let you all know. (Yesterday morning I sent the email from a computer at Ronald McDonald House, it is owned by one of the parents who has a remote broadband connection.)
He is in Surgery now though. After the Broviac line broke down over the weekend it has become urgent that Thomas gets a new one. That's what is happening today, so that Thomas has a reliable central line for the drugs that he needs. Its used for infection control (antibiotics). To put in the new Broviac, Thomas only has to be in a light sleep. The surgeon who came to get Thomas said that he will be back in about 1 hour. That is about 11.15am.
Thomas has a all of his regular medicine straight into his stomach via his feed line (called a Peg).
Thank you to everyone who has held us in prayer, thanks for the support and encouragement. We really appreciate it. Thanks for all the replies that I received yesterday too.
All our love to all of you
Julie, Dean, Rowan and Thomas
I have attached the pictures that I intended the other day.
The internet is updated too.

No Surgery at all Today 29/01/08

2009-02-17T16:00:00.000+11:00

Hello everyone,
There was no surgery today for a new Broviac line because Thomas was too upset.
They will try again tomorrow and maybe sedate him before they take him to theatre. That way he will be nice and quiet.
Today his heart was racing and he had a dirty nappy and he was crying, he was just not up to it.
Update again tomorrow if he goes in.
Thanks for all your replies I will get back to you later. I am going to go and give him a bath and a cuddle now.
Julie

Re: No Surgery at all Today 30/01/08

2009-02-17T15:45:00.000+11:00

Hi Josephine,
Thomas had a much better day today, lots of sleeping but no Surgery.
Regards Thomas' Oesophagus repair; the latest from the Rounds this evening is, the Doctors have cleared the Surgeon to find a place on his list from Monday provided we have a clear chest x-ray. So it could be really soon.
The surgeon will put a new Broviac line in when he does the Oesophagus repair. The current course of Antibiotics will finish on Saturday so we are hoping to get through untill then on IV lines. We are onto the second one already.
Family court tomorrow.
I hope to be spending some time at home this weekend. See you later
Julie Cozens

Thomas Had Surgery Yesterday 13/02/08

2009-02-17T15:40:00.000+11:00

Hello Everyone,
Its just a short email from me today. Thomas had his Oesophagus joined to his stomach yesterday. Hooray! He did not have a Hypertensive crisis which was the reason that surgery was stopped when he was first born.
He is well and there were no problems today
He was only the second patient in surgery yesterday so he was in at about 10.30 and back at about 1pm. We weren't able to see him until about 3pm. The Nurses and Doctors are all saying that he is very good. He has lots of lines and tubes just like when he was first here. He is a lot more stable now than he was then. He hasn't opened his eyes yet and he is fairly puffy in the face and neck. He is on a ventilator, he is on Morphine and Midazolam and antibiotics as well. He stirs when the nurses give his mouth and nose some suction. He has just had a little wash and his sheets changed so that has made him feel a bit better but made him very tired. He is sleeping now.
I feel as though I have been holding my breath for weeks and now I can relax. Thank you everyone who has been praying.
Lots of love to all of you from all of us,
Julie, Dean, Rowan and Thomas

Thomas turned 4 months old 22/02/08

2009-02-17T15:05:00.000+11:00

Hello Everybody,
Thomas is now 4 months old as of Sunday 17th Feb.
Boy it has been a long haul. He has been in intensive care for 4 months+.
I am sorry that it has been a while since my last email. I just couldn't face it.
He is not very well at the time I am writing this email. I have just come from his bedside and he was just given an extra dose of intravenous Morphine to help him calm down. The story goes....
Thomas loses control of his airways and it sends him into a bit of a crisis. The reasons he loses control of his airways are varied, it can be because some spit or secretions were blocking his trachy tube or sometimes he has pain, usually from wind or from passing a motion, sometimes he just doesn't like to be handled. Then his Pulmonary Pressures shoot up and make it very hard for his blood to move through his lungs and get oxygenated. He turns blue and has to be given higher pressures on the respirator and extra oxygen. There are all sorts of dials on the respirator which the doctors change constantly during these events, altering the PIP, PEEP, Rate, Flow and alarms on things like Tidal Volumes etc. It is very technical, they are very calm, it is nothing like those television shows where everyone is shouting and running everywhere.
It is very hard to watch as he is very distressed.
Yesterday we had a meeting with the doctors who told us that they were organising a Bronchoscope to see if there was a reason that Thomas' breathing was so difficult. It was done at about midday and I was actually present because they did the 'scope at Thomas' bed. I saw pictures of his trachea on the television screen. There were 3 lumps that were closing together when he breathed out which was making it very hard for him to breathe in again. The answer was to make a Trachy with a longer pipe that went past the lumps so that his trachea wouldn't be obstructed. After 2 goes the new Trachy is in. They had to do scopes each time to check that the length is right, the first time it was too long at 9.5cm and had to go back to the orthotic department to be made a bit shorter. The new trachy is 8cm long and the standard ones are only 6cm.
There have been 2 more crisises since then. The new trachy hasn't been the total answer.
The most recent Pulmonary Hypertensive Crisis started at about 4.20pm when he started to do a poo, then he began to relax at about 5.15pm when he was given some extra Morphine. Morphine is good for this because it helps his arteries relax. Thomas is having regular oral Morphine and Diazapam and Chloral to keep him relaxed and pain free but sometimes he needs a bit extra, like this afternoon.He has had a chest x-ray just now to see if there is anything in his chest that is a problem, he has a bit of redness around his gastrostomy site that has not improved for 24hrs. The doctors have ordered antibiotics for that. We are also concerned that he hasn't had a good poo for a while so he is getting some Coloxl drops to help with a little bit of constipation that can be seen on the x-ray. Also Thomas seems to have gained quite a bit of weight since his operation. He gained about 1.05kg in 10 days. He is a bit puffy after the surgery and there is some constipation but it does seem like a lot of weight to gain to me.
The surgery went really well. He has been swallowing most of his saliva and he has been keeping all of his milk down. The join was easy and the surgeons were thrilled that Thomas was back to being fed hourly within 5 days. The wound has healed nicely and there is very little bruising or swelling. Everyone is very happy about that.
It is very hard to sound positive about much of this. We are all doing our best to cope. Thankyou for your prayers.
Love to all of you from all of us,
Julie, Dean, Rowan and Thomas

Prophetic Vision from a Man (Fully Grown now) who also had Osophageal Atresia at Birth 15/02/07

2009-02-17T15:00:00.000+11:00

Hi Julie,
It's great to hear that Thomas is doing well. God is very good!
I just wanted to let you know that I saw a very interesting vision on Tuesday night, which I think was the night after Thomas had his surgery. I wrote it all out just after I saw it...
Tues 12/2/08I was lying in bed imagining a war scape, and hearing the sound of distant fighting. There were burning cities on the horizon and gun shots echoed all around. Long shallow trenches ran like a grid through a wide open plain which had become a wasteland of mud and dirt.
It was not safe to come up out of the trenches, because the enemy could be anywhere. All of a sudden I saw a little baby crawling about above the trenches and I realised it was Thomas.
Immediately a huge angel swooped down from heaven and carried Thomas up into the air. I heard God say "I'm bringing Thomas out of there now" (or something very similar). As the angel rose up into heaven I saw that it wrapped Thomas in two wings and flew with another two. I thought the angel was probably a seraphim but I don’t know. It was very tall and athletic with great white wings. Rising through the clouds above I saw a throne and the angel took Thomas to Jesus, the King of Kings who was seated on the throne and I knew that he was letting Thomas see many things from His throne as if it were from the top of a mountain.
It was a privilege especially for him, because Daddy just wanted to show this to him so much, but God also had a plan in doing this. God’s presence on the throne was like a cloud with much light shining out of it and in many colours. When Thomas looked out from the throne he looked through this misty haze of God’s presence and saw all things as God sees them. He understood secrets that are hidden to many others (because they see only what natural light shows them).
Then I saw an altar before the throne, made out of pure white stone and I knew that Thomas was to be a priest before the Lord. Then I saw spreading out from the altar, an auditorium filled with rows of seats made out of the same white stone. I knew that Thomas would not only be a priest before God but also before men.
The last thing I saw was a great library filled with shelves and shelves of books. The books were never too high to reach and the library spread out to fill a very large room located below the auditorium with the altar and the seats.
I think the shelves were made of that same white stone here too. I knew that the citizens of Heaven were given free access to this library and all that was in it. I felt that this library would be significant for Thomas and that he would also have free access to it.
That is as much as I could remember, so I hope it encourages you guys and Thomas!
Peace & Love to the whole family
Tim Ninnis

Thomas Today 28/02/08

2009-02-17T14:58:00.000+11:00

Hello Everyone,
I have attached a picture of Thomas. I took it yesterday. He is a beautiful baby.
Today, Thomas has a busy day so this will be a short email from me. He has been to Theatre for another Broncogram and he is having an Echo and a Ultrasound too. The doctors are looking for a reason for his respiratory events that have been happening.
Lots has happened since I last wrote but there has been very little change. Most significantly was Thomas had a custom made trachy fitted. It was made a little longer to bypass some cysts in his trachea as I said in my last email. He had another one made that was a little wider as well. Now there is no air leaking around the sides like before. It has helped with keeping him stable but hasn't been the answer yet.
There have been x-rays and ultrasounds and blood tests. He is still on a sedative dose of Morphine, Diazepam and Chloryl, now they have added Midazolam and the occasional dose of Fentonal. He is also on Anti biotics for a rash that appeared around his gastrostomy site.
The stress is not any less yet.
Thomas is a brave fighter and God is the God of the eleventh hour.
We have hope and faith.
Love to all of you from all of us
Julie Dean Rowan and Thomas

Thomas' Last Day 1/03/08

2009-02-17T14:50:00.000+11:00

Hello Everyone,
This is a very sad email to you all. I am broken hearted to tell you that Thomas passed away on Friday evening at about 6.45pm.
I am so sorry to give you this news. I am so sorry that a lot of you will be reading this at the start of your working week. I am crying too.
Thomas passed away in his Daddy's arms, with me and Rowan and Pippa his nurse. We were outside on a balcony on the third floor. We had lots of cuddles with him before he passed. He had his eyes open and was looking around, he smiled, he knew that he was somewhere different. There were no beeping machines or people he didn't know nearby. We had photos. Dean played him some songs on the guitar that he composed. We were able to spend some time afterwards with him having more cuddles and I bathed him. When we left Thomas, he was in his bed cuddled up in a lovely blanket that his Mama made him and he had all of his teddy friends with him.
The Doctors told us that the results of the bronchogram that Thomas had yesterday were extremely bad and that he would probably pass away very soon. Much higher pressures were required to keep his airways open than he had been needing last week and that was higher than the week before and this had been a trend for about the last 6-7 weeks. He was requiring more and more medical intervention to help him overcome the hypertensive crisis' when they occurred and they were occurring much more frequently. Yesterday when he was in Theatre for the bronchogram he had to be given a dose of adrenaline to help his heart after a severe hypertensive event. That's when the line was drawn. It was no longer active treatment in Thomas' best interest. Given the results of that bronchogram, any further medical procedures were not fair to him.
We were privileged to be offered the opportunity to be prepared for his passing rather than it happening in an emergency medical situation. I am so thankful for that. Thomas was in no pain, he was not distressed at all. He just went. He went home to Jesus.
Much love to you all from all of us
Julie, Dean, Rowan and Thomas
ps: I have updated the pictures on the internet here is the link
http://www.harveynorman/.fujicolour/Deanandjulie

Re: Thomas' Last Day

2009-02-17T14:40:00.000+11:00

Thanks for your support and sympathy especially over the weekend.
Thomas is our beautiful baby, we are heartbroken that he died. Staying connected to everyone was one of the things that sustained us, thank-you for your part in that. Just knowing we were supported by friends and family and even people we have never met, that there were people who waited for our news and looked at Thomas' pictures, that their lives were impacted by our news was really a special experience. I wonder how many lives Thomas has touched. I don't think I will ever know.
We have some arrangements to make today and we will pass on the details when they are set in place. There is a notice in todays Herald Sun, there will be another one published soon. We will need support for a while in this grieving process.
Love to you all, from all of us,
Julie Dean Rowan and Thomas