Matt turns 4!

Matt's birthday celebration was simple and low key this year, but it was no less special for him. His birthday morning started with the opening of some fun presents. Sadly many of the toys required 2 hands! But he still was extremely pleased.

One present which didn't require 2 hands was his cute CARS hooded towel.

We did not do a big birthday party for Matt since our lives were a bit upside down as we were adjusting to life with a new born. So we decided to do an activity that he would really enjoy - we took him on a bus ride. This might sound a bit peculiar. But Matt absolutely LOVES buses. He points them out when we are driving. He could watch The Wheels of the Bus Song video 100 times and not get bored. He asks us to sing that song to him every night before bed. In South Africa our public transport system in not well developed and we rely exclusively on our car for transport. Matt has never been on a bus. His birthday treat was a bus ride along the sea front, followed by playing in a park and picnic with his grandparents, and the cherry-on-top was the bus ride back to the car again. The only word to describe Matts reaction: mesmerised.

The following week Matt's birthday was celebrated at his school. We provided the cupcakes. His teacher made him a crown and he blew out candles whilst his class mates sang to him. Matt was really chuffed with it. Here are pics that his teacher emailed us of the event...

When I think back on how far we have come in these 4 years I am overcome with gratitude. I remember the dark days of coming to terms with Matt's diagnosis and fearing that the rest of our lives would be filled with difficulty and sorrow. I would never have anticipated the joy. I also remember reading about RTS and what to expect. Developmental Delay (and more gut wrenching words) were used to describe my baby's future. I could not have imagined Matt at 4 years - a curious, joyful, determined boy who enjoys people; loves music, song and dance; kicks soccer balls with impressive power; makes his opinion known; is passionate about animals and trees; and whose personality is really too big to capture in words on this blog.

I am so proud of Matt. Happy Birthday!

Big brother Matt climbs up into his carseat and insists that I turn Nic's car seat at an angle so that Matt can look inside it. Matt smiles, then waves hello and says "ic" while doing the sign for Nic. This happens every time I fetch Matt from his school.

Big brother Matt has turned 4 years. Photos and story to follow when there is a little more time.

Big brother Matt has figured out that babies love their dummies (pacifier). And that one needs to be found quickly and brought to mom as soon as Nic starts crying. Often I turn around, whilst holding a crying Nic, and there is Matt offering me a dummy that he has managed to scrounge from the car seat, cot, couch or floor.

A mystery

Big brother Matt has a broken arm. And how did it happen? Well we are really not sure. Last week Thursday we noticed that Matt asked for help to get into the car seat - he can normally climbs up on his own. And that afternoon during play with rice and beans he was only using one hand whereas he usually loves rubbing and moving both his hands through the textures. However he did not appear to be in pain and certainly wasn't crying. Only on Friday morning when Lloyd pulled Matt up onto our bed did he start crying. Knowing that many RTSweeties have been reported to have unusually high pain thresholds we decided we had enough suspicious evidence to warrant an xray.

No doubt about it: a fractured left arm, just below the elbow. But as already mentioned we are not certain as to the cause - was it when Matt toppled off our bed; or when he ran and fell on the grass; or tripped on his toy in the lounge; or one of the many other times when his exhuberant playing caused him to bump into or fall off something? An unsolved mystery.

Lloyd took Matt to have his arm put in a cast - which I am told he endured with much grace and calmness. Initially Matt was not sure about wearing this cast. He can say the word OFF now, and initially would repeatedly show me his cast and request it be taken OFF. I think he understands that it is here to stay. He has since adjusted to having only one arm in use. He has figured out new ways to climb up on beds, chairs and stairs without assistance. He can still feed himself and open the cupboard to find his snacks. And can still find a way to spin plastic lids; play with his cars and turn the pages of a book. He is more independent than I thought he would be, and really only needs a hand to drink from a cup, take his clothes off and get up into the car seat.

The biggest impact the broken arm has had is on his ability to communicate. Matt tries to sign with one hand, but as many signs require the use of 2 hands. Often we are not sure what he is trying to say. But we are persevering. And we are also using some of the PECS pictures to help us where we get stuck.

For the next 4 weeks bath time will be a bit more tricky and sadly no swimming for Matt. But hopefully the time will pass quickly and by then the weather will be perfect for his first swim.

PS I'm also learning to do things with one hand. My reason is a little different - Nic likes to be included in what I am doing during most of the day. I have to admit that Matt has adapted far quicker and more proficiently than I have!!!

Big brother Matt likes to put his cheek against Nic's warm head - and give him cuddles. Very cute!

Big brother Matt has discovered that Nic has small feet and cute ears - just like he has. He will point to his own ears, then to Nic's, and then sign "small".

Big brother Matt is fascinated with Nic's eyes and relishes any eye contact he can get.

Babies are not that interesting

When people ask me what Matt thinks of little Nic, my standard response is that "Nic doesn't come with buttons that play music or flashing lights, so Matt is not that interested in him". In fact most of the time Nic is ignored by his older brother. Matt knows the signs for "baby", "brother", and "nic", but will not really initiate converstation about his sibling. When asked "What does Nic say?" (as opposed to "What does a cow say? or a pig? where Matt will imitate the sound) Matt's response is that "Nic cries".

Matt is however really interested in Nic during his bath time. He watches very carefully as dad dunks the little crying guy into the water.

Here is Matt overseeing Nic's first bath at home.

Matt hasn't missed any of Nic's bath times yet! When he is not checking out Nic swimming, Matt loves to screw the vaseline and aqueous cream lids on and off.

Reflecting back - the feeding and the memories

Being born at 35 weeks little Nicolas found it difficult to feed. This is apparently quite normal for a premature baby, and I was told to expect him to take up to 10 days to figure out the whole breast feeding thing. Nic received his feeds through a naso-gastric tube.

With the help of some amazing nurses I started the journey of teaching Nic to breast feed. Most attempts would result in him in hysterics, desparate for milk but unable to co-ordinate the drinking. It was hard. However, it wasn't the task of feeding Nic that was so challenging - it was the emotion-laden flash backs to the time when Matt was born and he struggled to drink. Matt couldn't suck and co-ordinate swallowing. He was in the high care for 3 weeks as we tried to teach him how to drink. The months that followed consisted of hour-long feeding sessions with a bottle that I could squeeze when Matt became too tired to drink, expressing litres of milk, managing reflux, and cleaning up vomits at least 2 or 3 times a day.

I was surprised at how powerful the memories of Matt's early days were, and how debilitating they were. On the second night after Nic was born, I phoned Lloyd from the hospital, in tears declaring that I just couldn't go through it again. I was so overwhelmed by it all. For Nic's 9pm feed I was blessed by the company of an angel - well she was human, but she was like an angel to me. Her name was Frankie, she was one of the high care nurses on the night shift. She sat with me and Nic for about an hour, helping me to try breast feed, then expressing and feeding him through his tube. I am not sure what exactly it was about her: "her down-to-earth"ness, her sense of humour, her patience, her chatting about her love life, her gentleness with Nic, her confidence that he will get this whole breast feeding thing - probably all of these were like a tonic to my tired and frightened soul.

I fell asleep with peace in my heart, and I woke with courage to do what I needed to do to get my little Nic feeding. Early the next morning Frankie brought Nic for his feed - and he latched well. It felt like a miracle. Franke also told me how she had tried cup feeding him through the night and he had taken to it. With my new found courage I became reaquainted with the breast pump. I got the nurses to teach me to cup feed, whilst still persevering with the breast.

By day 4 I was able to give Nic all his feeds through cup feeding - so out came the naso-gastric tube. And mercifully the paediatrician agreed that we could take him home. I don't think it is policy to send kiddies home unless they are feeding well by breast or bottle. It definitely helped that Lloyd is a paediatrician, and that we had experienced more challenging feeding difficulties with Matt.

It was glorious to be home with Matt and Lloyd. And Nic completely surprised me by mastering the art of breast feeding by the 2nd day home. Good bye expressing, good bye sterilising. What a joy to be able to breast feed. I still stare in awe at Nic gulging down the milk.

Reflecting back - the birth

Despite anticipating premature labour, by the time we reached the 30s weeks I thought that we would carry to term. I couldn't see what would prompt early labour if it hadn't already happened. So in my mind I was expecting to carry until the end.

On the 18th August, at 35 weeks, the membranes of our little dead twin's sac ruptured. After a lot of debate and discussion our gynaecologist decided it was best to get our healthy twin out as soon as possible as the risk of infection in my womb was now very high. And my body concurred with this decision as I soon went into labour.

Only thing was Lloyd was writing his neonatology subspeciality exams on that day, and the following. So my courageous husband came home from exams, took me to the hospital, watched the birth of his baby, supported his wife, went home and wrote the 2nd part of exams.

We had planned to do a lot after Lloyd's exams - including deciding on the name of the baby, finishing off the nursery, going on a romantic weekend away, finishing off work... So our little boy didn't have a name for the first few days of our life, and we have had to be fexible with our life plans.

We chose the name Nicolas because it means Victorious. We felt that this reflects God's purpose for his life. His second name is Michael - after my father.

What a relief to see that he was healthy and well - even though he was born at 35 weeks. Nicolas was in the High Care Ward for one night only - mainly to monitor his breathing. After that he spent most of his time with me. In the beginning he struggled a lot with breast feedings, and received his feeds through a naso-gastric tube, but more about that in the next post.

My heart rejoices in the Lord. 1 Samuel 2:1

Reflecting back - our pregnancy

I haven't written much about our pregnancy journey in the last few months. Each day required a an intentional and conscious holding onto God's gift of peace and refusing to let fear to root itself in my heart. The threat of losing our second twin was constantly looming in the background. Reflecting and writing about the process was just too taxing. Every day, from the day our one twin died at 19 weeks until we reached 30 weeks, Lloyd and I lit a candle to thank God for keeping our other baba safe, and we asked for just one more day. That is how we lived - day by day.

Weeks passed and the threat of prematurity diminished. We celebrated that our baby remained safe in my womb. Yet our peace was still threatened - a different fear: that this baba may be born with abnormalities. I felt guilty having this fear, as I felt like I was betraying Matt in some way. I love Matt and who he is, I don't despise the fact that he has a syndrome. Yet I was not sure I could manage a second kid with a syndrome.

We had decided not to have any genetic screening tests or scans during the pregnancy. It is very seldom that these tests give a definitive diagnosis, mostly one walks away with a probability or statistic. We couldn't face living with such an uncertainty again. It was torturous during our pregnancy with Matt. So we chose to wait until the baby was born and then if something was wrong, we could deal with it as a definite. However this did mean we had no idea what was in store for us when baba was born.

Lloyd was studying for his neonatal subspeciality exams in August. The text book from which he studied was called "The Diseases of the Newborn" - over a thousand pages of all the things that can go wrong with new borns. Not an easy topic to study when your wife is in her third trimester.

We did not always manage to live in that place of peace every moment and every day. There were times when the fear would almost choke the breath out of my lungs. There were, however moments, by God's grace where despite the possible threats to the safety and health of our baba, we still experienced joy and delight of life.

Do not be anxious about anything, but in everything, by prayer and petition with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4: 6-7

Matt welcomes little Nic

Matt has become a big brother

On Wednesday 18th August 2010 Matt's little brother, Nicolas, was born. He caught us a bit by surprise but we are thrilled with his arrival.


Photos and stories to follow.

First: Do No Harm

This weekend Lloyd attended an International Paediatric Conference which was held in Johannesburg here in South Africa. He displayed the following poster at the conference. In it we share our insights that we have gained parenting a child who has special needs, with a specific focus on how doctors can better support parents.

To view it in more detail click on the picture and it should enlarge it.

Matt starts school!

Today was Matt's first day at his playschool. He will be going twice a week for 3 and half hours in the morning. I was quite emotional about it - not because I have any concern about him going, but rather because it is a significant milestone. Matt's world is expanding beyond my care, my guidance, and my intervention. Up until now I have always been in the background as he explores new people and places. I try to let him have his freedom, but I am always watching for the moment when I need to partner him in engaging the world - whether it be to explain something new to him, or to help others understand his signs.

School is now his place...where he has to find ways to communicate, to contribute, to build friendship...all without me. And that is really good. I know he is ready. So my heart is at peace, but my heart was still sitting in my throat as I left him this morning - in recognition of the significance of it all.

When I fetched him I was told that Matt had not been upset, but rather had enjoyed exploring and watching and also choosing to engage where he felt comfortable. His teacher was positive about Matt's experience and felt that Matt was able to make himself understood.

Here is a photo we took just before we were about to leave this morning. I am not sure how much of the idea of school Matt understood at this stage, but he sensed it was a special day (and he really liked wearing his backpack).

Finding this playschool has been a real answer to many prayers. In South Africa there are no state run early intervention programmes for kids with special needs. In our city there are only one or two preschools that cater specifically for kids with special needs. I have been unsure about whether these are even the right place for Matt. I think I spent most of last year with this knot of anxiety as to what steps we would take in terms of Matt and formal education.

This year two unrelated people recommended this playschool for different reasons. I was told the classes are small, the teacher, Debbie, is a Christian, is very gentle and focusses on each child as an individual. What's more she used to teach at a school for kids with autism so she is familiar with signing and using pictures to communicate with non-verbal kiddies. When I contacted Debbie, she shared how she had recently come across our blog, and so was familiar with Matt and me. How amazing is that!?! And she would be delighted to have Matt in her playschool. Matt and I popped in for a visit and I knew immediately that it would be a good fit, especially because Matt was so comfortable in the environment. We made a video of Matt and Lloyd making Matt's signs so that she could familiarise herself before Matt started.

I am so thankful that God cares about every detail of Matt's life and that I can trust him with all the other uncetainties and unknowns that lay ahead in Matt's future. I am so proud of Matt and the person that he is. I look forward to see how he is going to grow in response to this new environment, and I look forward to see what impact he is going to have on this same environment. I have no doubt there will be mutual benefit!

Swim

One of Matt's favourite activity of the week has been his swimming lessons. He starts squealing with delight when he sees me with his swimming costume, and starts signing "swim" over and over. In the car on the way to the lesson he loves practicing his blowing and swimming arm movements.

The lessons are held in a lovely indoor, heated pool so we have been able to keep going despite the onset of winter. This week was the last lesson of the season, and fortunately Lloyd was able to take some time out of work to join us. Thus freeing me up to take some photos.

Usually there are more kids but this time the others were absent so Matt had all the attention from teacher Laurelle. During the session the temperature outside the pool room dropped as the rain came down resulting in lots of steam inside - taking photos became a challenge but you can still see what Matt is up to desite the fog.

The kids get to play on a shallow step for the first part of the lesson - learning to walk in the water and reach down to find all the fun toys that are on the step.

All the activities are done to music and song which really appeals to Matt. Through the song actions the kids learn basic swimming strokes.

Matt and dad blowing bubbles

Through more songs Matt learns to hold on to the edge and also more blowing.

This sequence of photos shows Lloyd about to submerge Matt under the water and Matt coming up reaching for the fish toy on the side of the pool. Matt is very comfortable with being underwater, and has learnt to hold his breathe.

Matt loves the funky toys that are used to motivate him to move along the side of the pool. Here he has used his hands to "monkey walk" from Laurelle to Lloyd - to get the toys.

The pool noodle helps Matt to float a bit more independently and encourages him to kick to move forward. Here he has fun collecting the balls and depositing them in the basket.

Matt's swimming will be put on hold a little bit as his little brother or sister is likely to be born when his lessons are due to start again in September. But as soon as I am well enough to take him again, we will be back in the pool. It is such a joy to watch in the water, we would hate to deprive him of this pleasure for too long.

Laduma

What has Matt been up to at his physio sessions this year?

Here are some of the activities he enjoyed in his session this week.

Bouncing on a ball

Building on Matt's interest in kicking balls, Pam introduced Matt to this new activity of dribbling a ball around a figure of eight. She gave hime a chance to get a feel for it, but did not force him to stay longer than he was interested.

And then to the kitchen for Matt's favourite - ice cream. Lots of licking. And an opportunity for Pam to work on his back.

And some stretching in between the licking

Look how well I am sitting, and licking on my own.

Then back to the new dribbling activity - and Matt really goes for it because now he is familiar with the game.

Laduma Matt Laduma*

*Laduma means "for it thunders" in isiZulu and is shouted in soccer when a goal is scored!

Someone capable of love

"My studies in Aristotle helped me to order my thoughts, and to distinguish what really matters from what is less important. Aristotle loved all that is human. He made me pay attention not primarily to ideas but to reality and experience. But I differ from Aristotle over certain aspects of anthropology, particularly over his definition of the human being as a 'rational animal', a definition which excludes people with intellectual disabilities from humanity.
I would sooner define the human being as 'someone capable of love'. "


quote from Jean Vanier, Our Journey Home

Matt is a fan of the Soccer World Cup

On Friday the Soccer World Cup 2010 was officially opened here in South Africa. Matt got into the spirit of it!

What's Matt been up to? Part 2

Matt has been practicing his ball skills - he absolutely loves balls of all shapes and sizes. Everytime he sees sport on TV he runs to get the appropriate ball - soccer, cricket or rugby ball and he kind of imitates what he sees the sports men doing.

With the Soccer World Cup here in South Africa this month Matt is getting lots of exposure to the art of kicking and dribbling soccer balls. Big soccer balls have proved too easy for him to dribble so now he is practicing with the more challenging smaller balls.

What's Matt been up to?

Matt has been such a tonic for me during our turbulent season. I haven't been that active in taking photos as usual, but here are a few showing what he has been up to the last month or so.

Matt enjoys mixing things that are in a bowl, as well as the taste-testing (don't we all). At his music and movement class they have been doing a song with actions about making cakes, so Matt's cooking skills have been reinforced there too. I regularly make mini muffins for Matt's snack time. We don't have a sign for muffins so we call them "baby cakes" - using the signs that Matt knows.

Some days are messier than others. But always entertaining!

For fun and for exposure to textures we play with rice, pasta, and beans. Matt loves digging his hands in the various mixtures; hiding and finding small toys and again more mixing and stirring. It is a great activity for the rainy days.

Stay tuned for an update on Matt's ball skill development.

Do not fear

It has been 4 weeks since my last blog entry. I ended that post by sharing how I was planning to grieve the loss of our tiny girl. To be honest I don't think I got very far down the road of mourning. Not because I am still in denial or shock, but rather because it felt wrong to let go and grieve when there is still another little one alive. And it also became clear that the life of this little one was also at risk. Going into labour before 26 weeks would result in death for this little one.

So I have been focussing on the life that is there; and learning how to overcome the stomach-turning fearful thoughts that seem accompany this part of the journey.

In the week following my last post I would wake up every morning wondering if today was going to be the day I was going to lose the 2nd child. Every twinge of pain in my belly - no matter how small - brought panic thinking that I was starting to go into premature labour. Everytime I would think about the fact that we had to get through at least 7 weeks until we reached the "safe zone" of being 26 weeks pregnant, my chest would close up so tightly I could barely breath in - it was like my rib cage would shrink crushing the air from my lungs.

I knew that life like this was not sustainable - and I was also puzzled by the fact that God had repeated (rather abundantly) the phrase "Do Not Fear" in many circumstances throughout the bible. How could God be serious about this, surely there should be some expections to this invitation to live without fear. However it seems that there is no circumstance or situation wher it is acceptable to succoumb to fear. Desparate not to remain in the anxious vice grip I was in, I started to seek, read, pray about this fear-less living.

I saw that God was not telling us "Do not fear" because He would always remove that thing that caused us to fear, but rather the thing that I fear is not worth fearing. In the light of eternity the thing that I fear is really insignificant. I remember reading (I think it was C S Lewis) that our life here on earth is like the title page of a book, and after we die then eternity is the rest of the pages of the story. Not that God trivialises the things we fear or the things we long for. He loves us and understands our hearts cry. However we give such power to things that we fear - things that do not have eternal value. Power over us to rob us of the life that God wants us to live today.

Lloyd and I have been lighting a candle at the end of each day - thanking God for the day that has passed, that our baby is still safe - and praying for the next day, asking God for His protection. And so I have been living one day at a time; whilst also seeing my life from an eternal perspective - both view points have brought peace to my heart.

More freeing for me has been the revelation that God calls me not to fear because, regardless of what happens, He will be there with me - He will be the shepherd who walks alongside me in the valley of the shadow death, He will be there in the fire, when the waters rise up, and when the storm hits. He is Immanuel - God with us. God with me. And so I will not be alone facing that event that I dread should it occur. So it is not worth fearing and giving up my peace today because of what might happen tomorrow.

I do not underestimate the inpact of the many prayers that have been poured out for us - how they have bouyed us up over the rough seas, and have brought us into God's calming presence. I cannot express my gratitude to the many who have been emailing, texting, phoning, visiting with one message - that they are standing with us in prayer. I know that the freedom I have from fear is also due to these prayers.

Therefore, I have been able to live LIFE in this precarious season. I have been able to be present with Matt and enjoy him. I have been able to sleep peacefully at night and not wake with dread each morning. I have been able to taste my food. I have been able to be creative in the kitchen and garden. I have been able to engage with others, not shutting down or withdrawing. I have been able to live.

We are now at 24 weeks...we keep taking it one day at a time - one lit candle at the end of each day.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you. I will uphold you with my righteous hand. For I am the Lord your God who takes hold of your right hand and says to you "Do not fear, I will help you"

Isaiah 41: 10, 13

Saying goodbye

Today we went back to the gynae. I explained that I needed to check to see if my baby was really dead, that I couldn't believe it to be real. I also wanted to know if it was a boy or a girl.

The scan showed me a little girl lying very still in my womb, the heart was still quiet, and clearly her spirit was safely with Jesus. I can't explain the peace that descended on me. On Sunday Lloyd and I had been in a dedication service for 2 kids - there they had read the story of when Jesus rebuked the disciples for shooing the children away. The words about how Jesus drew the children to himeself, embracing them, came to my mind in the scanning room. I knew my little girl was with the One who is Love.

I didn't feel angry about the loss, just disappointed - because I won't get to meet this little one face to face, and to share the life that she might have had. I also felt sad for the other baby who will not know his or her sister.

Our other baby has grown since the scan on Thursday and is a bundle of life and energy and movement.

The threat of premature labour looms like a dark shadow over the life that is in my womb. We would love your prayers for this baby to be able to stay in for as long as possible.

In the midst of everything I am deeply thankful for Lloyd and for all those who have prayed for our marriage during this tough season. We are walking very closely. I must say that I don't think I have every been more in love with Lloyd. He has risen up as a man of tender courage and gentle strength, allowing me to process things differently from him and yet never making me feel foolish. He has been processing his own pain and has kept me close to his heart without withdrawing - sharing his journey with words and tears. He has shown love and tenderness to Matt despite the grief in his heart.

I am also deeply thankful that during this time I have felt God's love in a tangible way. On Thursday night, after we received the news, a whole bunch of our friends came around in the evening to pray with us. The love and care in that room was so deep and rich. On Friday I received a message from a distant friend, who is living in Hawaii and who would have had no knowledge of our loss. She felt God remind her to pray for me on that Thursday, and that God wanted to affirm my mother's heart for me children. I was so comforted by the knowledge that God had spoken to her about me on that very day of my loss.

So now I start the grieving process...of saying goodbye to our tiny precious girl.

And also the journey of readjusting my plans...for the nursery, for the pram, for the car, for our lives...

and the journey of allowing new plans to form.

The day I walked into a wall...

On Thursday we went for a routine check up on our twins. We are in that safe zone, between the threat of miscarriage in the 1st trimester and the scare of prem labour in the 3rd. So we were not expecting anything sinister. As our gynae scanned my belly it became clear that she was concerned about baby A (as she calls them). She couldn't find a heart beat and the baby did not seem to be moving. She referred us to the Foetal Assessment Unit just up the road, there they have a sophisticated scan that could show what was going on. A long walk up a short road, hoping and praying that it was just our gynae's small machine that couldn't pick up the details.

In the small, dark room of the Foetal Assessment Unit the ultra-sonographer shook her head. No heart beat. With pity in her eyes she informed me that the "foetus had demised" - yes those were the cold, clinical words that she used.

That was the moment I walked head first into the wall. And it hurt.

I had not seen it coming. I had looked forward to the check up - to say hi to my 2 munchkins. The wall would not be moved and I walked into it. Pain throbbed throughout my body. She measured some more, and also checked over Baby B to make sure there were no further concerns. My mind was numb. I was told that since Baby A was the same size as Baby B the heart must have stopped beating only in the last couple of days.

The ultra-sonographer had squeezed us into her busy schedule so couldn't spend much time with us. Too soon she was ushering us out of the room. I had to will my legs to move to take me out of the dark room. The light seemed to bright for me, too happy, too full of life. I wanted to stay in that small, dark space for a while longer. I didn't want to face the world. I could relate to the darkness - it made sense. The light didn't make sense.

Back in our gynae's office I couldn't grasp what I had been told. My body felt no different. There was no bleeding , there were no cramps in my womb. No physical sign of the death that was allegedly inside my womb. Surely, surely the ultra sound was wrong. How could it be that the baby's heart just stopped beating. It did not make sense, in fact it still doesn't. This whole weekend I have been struggling to understand it all...it is like my brain doesn't work. It is like I am grasping at smoke or a cloud, I can't take hold of it. I just can't let go of Baby A. It's like I can't even start grieving because in my heart I don't believe this Baby could be dead.

My heart is so confused that I can't even think about the Baby B - apparently now there is a threat of me going into labour in the next 6 weeks. It is just too much for me to contemplate.

The one joy in all of this has been our precious Matt. He has certainly been aware that something is not right with his mom and dad. On Thursday he started showing many more of his sensory stimulating movements, like head shaking and seemed to go a bit wild. We were a bit concerned how to cope with him and the whirlwhind of emotions. Yet today he surprised us over and over, he was calm and caring. His interactions with us were so therapeutic and he truly brought joy into our home. I thank God for Matt and the light he brings into our lives.

And I look to God to carry us through this storm.