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

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

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

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

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

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

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

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.