Sunday, March 29, 2009

Instead of going to the Cemetary today

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.
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.

Friday, March 27, 2009

Under The Tree - March 2009

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. 

Friday, March 20, 2009

I am Grateful

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

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.

Tuesday, March 10, 2009

Season, Reason, Purpose.

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.

Thursday, March 5, 2009

A New Baby

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.

Tuesday, March 3, 2009

He Flew Away

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.