What do we live to do, the way a horse lives to run?

Husband John and pregnant wife Martha have just undergone tests to see if their unborn baby has Down Syndrome. They do not know the outcome of the test yet. We join them in a midst of a heated debate about how to handle the possible outcome...

"Look, honey, nothing's worng with our baby," he said. "Our baby is fine. And yes, I agree with you that birth defects are a tragedy any way you look at it, but abortion is a way to deal with the problem, you know? To limit it. That's all I was saying."

I wiped my eyes with a paper napkin and peered at my husband's weary, frustrated face.  "And you'd still want me to abort this baby if it wasn't normal," I said, "Wouldn't you?"

John pulled in a deep breathe and let it out slowly. He looked terribly tired. "Look." he said. "I know I can't always see things from your perspective, and I'm sorry about that. But the way I see it, if a baby is going to be deformed or something, abortion is a way to keep everyone from suffering - especially that baby. It's like shooting a horse that's broken its let." John's father had been born to a clan of sheepherders, and he was always quick with barnyard analogies.

"A lame honse dies slowly, you know?" said John. "It dies in terrible pain. And it can't run anymore, so it can't enjoy life even if it doesn't die. Horses live to run; that's what they do. If a baby is born not being able to do what other people do, I think it's better not to prolong its suffering."

I nodded. The torrent of emotion seemed to be passing. I felt as though a hurricane had swept through me, leaving me hollow and exhausted. I swallowed a mouthful of orange juice and closed my eyes.

"And what is it," I said softly, more to myself than to John, "What is it that people do? What do we live to do, the way a horse lives to run?"

I didn't expect an answer, and John didn't give me one. He just moved his chair closer to mine and put an arm around my shoulders. "You're awfully tired, aren't you?" I nodded trying to hold back another wave of tears.

"Let's get you home," he said, stroking my hair. "You look so pale - how much blood did the vampire nurses take, anyway?" I managed to smile. "Just enough for their midnight buffet." John smiled....

...I just rested my face against John's chest and closed my eyes again. John brought his other arm around and folded me to his chest. He was still wearing his bulky down parka. It was like a pillow against my cheek. I could feel his heart beating beneath the coat. For a moment, I let the anxiety in my chest relax, let myself forget everything I had to do that day, let myself feel utterly safe. And then I understood that John was answering my question, even though he didn't know he was. This is it, I thought. This is the part of us that makes our brief, imporbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Taken from the book Expecting Adam by Martha Beck, pages 134-136

This is the part of us that makes our brief, improbable little lives worth living: the ability to reach through our own isolation and find strength, and comfort, and warmth for and in each other. This is what human beings do. This is what we live for, the way horses live to run.

Discovering the Possibilities

"So much suffering comes from disappointment. We wait for something which we believe will bring us happiness, and it does not arrive. We see only the negative things that have come our way, illness, a child with a handicap, and we close up in anger and rebellion.

Human wisdom means coming back down to earth; not closing ourselves up in a beautiful ideal which we must attain, but

welcoming reality just as it is;

discovering God present in reality;

not struggling against reality, but working with it;

discovering the seed of life, the possibilities hidden in it. "

Jean Vanier, Our Journey Home, page 165

Gives me such joy...

Introducing RTS South Africa

www.rts-southafrica.weebly.com

Check it out!

Music to my ears

For many months now, except being able to say mama and dad, Matt has been saying the ends of words, for example "eep" for sheep and "ook" for book. But last week he uttered his first full word with a consonant in the beginning and a differnet consonant in the middle!!!! In the video you can see he is telling his brain what it needs to do to help his mouth make the all the sounds.

Since then Matt has been practicing this word over and over. I hear him saying it to himself when he is playing. A week later he is now getting more confident in puttiing the s in front of other words. He can now say see and sun. He struggles a bit with combinations but says sar for star, side for slide, sing for swing, and seep for sleep. I love hearing his melodic voice as he says his words - it is music to my ears.

Potty Update #2

Matt broke his potty. It was one of those with legs and he was using his legs to shuffle forwards and backwards with it. The one leg broke - poor little guy got such a fright. We have got two new potties that are a lot more sturdy. We haven't been having a whole lot of progress with the poo in the potty thing since our last post. Lots of accidents. But we keep going - good thing we have a marathon mindset.

We are going...

to the RTS international conference in Holland in May!!!!!

Check it out: http://www.rtsconference2011.com/

After months of discussion, dreaming, budgetting, praying, thinking, talking, planning, contemplating, and researching...we decided to go!

It's a family conference - so Matt is coming too, so is baby brother Nic (and so is Matt's granny to keep us all sane)

We are looking forward to meeting other families from across the world who have kids with RTS. Possibly also meet some adults with RTS. We hope to learn from the many workshops and talks.

And we can't just fly to Holland for 3 days and come home again...soooooo we are also going to Denmark for a week following the conference. My mom is from Denmark - she met my dad when he was travelling around Europe; they fell in love and the rest is history. She moved to South Africa, and I was born. We could never afford to travel to Denmark as a family. So I am looking forward to her showing us around her childhood places. And the added bonus is that my brother (and hopefully his wife) will join us in Denmark too. They live in Canada and we haven't seen them since they left for Canada 2 years ago. The cool thing is that my mom taught my brother and I to speak Danish so we will finally get a chance to use it on real Danes. We are trying to convince my dad to join us too - more budgetting and discussion needed there.

Anyway, I digress. We are going on an adventure and we are so excited.

Potty Update

Matt came to Lloyd this morning and told him "..ee" meaning wee and then picked up his potty, took it outside in the garden. He sat himself down and made a poo. Although he have been having a lot of success getting him to use the potty, this is the first time Matt has initiated using the potty at the appropriate time.

Who needs expensive toys??

Yesterday whilst I was putting Nic down for a nap, Matt discovered our pots and pans draw. I came downstairs to discover that all our pots, pans, lids, sieves, colander, baking trays, muffin trays, cake tins and cooling racks were scattered across our kitchen and lounge floor. Matt had taken ownership of the enormous wok lid, as well as the lid for a small camping kettle, and was busy spinning them on the floor. He was so engrossed - which one spins faster and longer. He didn't notice his mom quietly observing his fascination. The game changed - lets try them as hats - the big one came right down to his shoulders, the smaller one needed to be balanced on his head. I heard him chuckle as the small one tumbled to the ground. I busied myself in the kitchen (tidying up the cooking equipment), giving him space to explore on his own. Later I checked in on him and saw that he was still playing with the lids - this time hiding toys of various sizes under the lids. And stacking toys on top of the lids. I caught his eye - he excitedly signed and explained "..ig ..id" big lid and then "....all ..id" small lid.

Next he made his way outside into the splash pool with the lids. And discovered that the wok lid makes a good drum.

And when the drumming was done, he went for an imaginary drive with the steering wheel. He tried steering with the smaller lid, but decided the bigger one did a much better job.

Finally there was the matter of figuring out why the big lid floats whilst the smaller one doesn't. And why when you pull the big lid out of the water it seems to get stuck with the vacuum, whilst the smaller one can be pulled out with ease.

Who needs expensive toys when you are as curious as Matt? It was fun watching him learn.

Embracing

Not quite a week into my expedition. 12 pre-primary schools have been phoned. 6 schools have been visited. And what have I learnt?

Lesson 1: In this day and age there are still schools that really don't want kids with special needs. One school told me straight out that they can't accept Matt. Another principal was friendly and smiley until I mentiond "special needs" - her eyes narrowed and she started telling me that the school wouldn't suit Matt because the kids move classrooms alot? What did she mean by that I am not sure? And then she asked if I had heard of about a local special needs school, her message was clear. As she gave me the tour, I told her I didn't think the school was a good fit for Matt. Not because of the school, or the fact that the kids move classrooms alot - but because of her attitude.

It has been hard growing some "rhino hide" to stand strong in the face of people not understanding Matt, and not wanting to understand Matt. And I am coming to realise that they are the ones that are missing out the most.

Lesson 2: There is a difference between tolerance and acceptance. Most of the principals I spoke to were polite and open to discuss how they would include Matt in their school. Their main concern was that Matt's presence wouldn't disrupt the school, the other kids or the teacher - so much of their discussion was about how to ensure this. I thought that this was the best that I could expect, until I came across a remarkable principal. Mrs R seemed excited at the thought of having Matt at the school, she was eager to tell me how the staff would include him, she asked questions that showed me that she understood Matt - and that she really wanted him to flourish. Yes she did speak about how the needs of the other kids also need to be honoured, but she did so in a balanced way. I was moved to tears by the way she embraced Matt's presence at her school. I asked her about her accepting attitude. She explained to me that a number of years ago a mother of a boy with Down Syndrome had approached her to let him come to her school. This was a pioneering move at the time, but Mrs R did so because she couldn't deny any child education. The young boy made a deep impression on her, so much so that she went to do her honours in Special Needs Education. Her compassion and heart shown through her eyes as she told this story.

I thank God for people like Mrs R who are willing to let their hearts grow bigger. I thank God for children like this young boy who have paved the way for Matt. I hope to meet him one day, and his mother, and to thank them.

An expedition begins

I wish I had a travel guide to Holland - not the real country, but the one written about in the poem where Holland is a metaphor for raising a child who has special needs.

We have reached the point where we need to find a preschool for Matt for next year; and also need to start thinking about school for the year after that. Part of me wishes Matt could just stay in his little playgroup forever - he is just so happy and comfortable there. He is understood and liked for who he is. But I know that he is growing up, and with that means finding the next educational step for him.

Last week I met with an educational psychologist who will be an important resource in terms of helping us understand Matt's capacity- will he cope in mainstream with support, or in a remedial school or is a special needs school better for him?

The educational psychologist is definitely a "tourist guide" in this unknown land of Holland, but we still have to do the leg work; there is still so much uncharted territory; and there are no guarantees or definites. There are no specific preschools who cater for kids with special needs so we just have to visit all of them in our area to see which one might work for Matt. It feels like a tricky task - trying to discern how Matt would fit in the school. Trying to read between the lines as to the real attitudes of the principals and teachers towards kids with special needs.

Today I stood in a classroom as a principal was giving me a tour of the preschool. She was telling me about how the teachers interact wtih the children, and explaining their philosophy around education. Half listening to her, I was battling my own doubts. I couldn't imagine Matt in a class with 20 other kids - I was scared he would disappear in the background. I wondered if he would be able to make himself understood. I was fighting fears of him being teased by other kids, or under-estimated by the teacher. She showed me the toilet facilities, and I wondered if Matt will be toilet trained by then.

I left wondering how on earth I would be able to make a decision about which school would be best for Matt. There are just so many unknown variables. The psychologist wants to wait before he does an official assessment of Matt, because he says so much can change in a year. I wonder what Matt will be like in a year? How do I make a decision today about next year?

Over the next two weeks I will be visiting a handful of preschools to see what they have to offer, to carefully watch the facial expressions of the princial as I mention that my child has special needs. I am praying for wisdom and discernment beyond my natural ability.

In 2003 my husband and myself, along with some close friends, undertook a 4 month overland travel through south and east africa. We headed off into the sunset with two sketchy guidebooks, relying heavily on information from the locals as we got to the different places. Not stressing too much about where we might be in a few weeks, rather we enjoyed the adventure and exploration of the unkown. That is the kind of attitude I am needing as I start this expedition.

Still Lovin Summa

Marathon mind-set

Since our last post we have had one other successful poo in the potty moment, and a whole lot of accidents. I realise that this toilet training process is more like a marathon than a sprint. So I am working hard to get my mindset right so I don't stress when he soils himself.

I don't get frustrated that he has made an accident, it is more the fear that he might never be toilet trained that plagues my thoughts. I have to remind myself that he has learnt SO much, and has come SO far, and that this too will be conquered in his time. We continue to celebrate the small victories along the way.

Matt returns to school this week, so I am a bit nervous about how he is going to manage only wearing underpants. We shall see.

UPDATE: I had a great chat with Matt's teacher yesterday who completely reassured me that she isn't freaked out about poo and will follow on at school with the toilet training as we do at home. I felt very relieved. Today was Matt's first day at school and he was still dry when I got there. Small steps, lots of small steps is this journey.

Matt made his first poo in the potty today!!!


Celebration in the Tooke household!!!

Toilet Training

We have started toilet training Matt. Last year November we noticed that Matt would put his hand in his nappy every time he peed. We wondered if he might be potty-training ready, although he didn't really display any other signs of readiness. After consulting our RTS support group and getting some good advice we decided to start during the two weeks in December when Lloyd was on holiday.

A while back I read another RTS mom's advice about how we cannot really train our kids to go potty, rather we can give the the potty great PR and trust that when they are ready they will go for it. So that has been our approach for a number of months with Matt - lots of excitement when mom or dad goes to the toilet. And lots of pointing out to Matt when he had made a wee or poo.

I was really unsure about how Matt would take to all of this. And although, I shouldn't have been, I was surprised by how quickly Matt understood what was expected of him. However understanding is one thing and executing is another. So we started one step at a time - first he learnt to pee in the garden where there are no restrictions or places to mess. Matt was initially quite freaked out by his pee and would stop as soon has he started. Now he is very confident and goes whenever requested, which is usually every 45 minutes or so. And with this method he has not had any pee-related accidents for almost 2 weeks.

Second step is learning to pee in the toilet. Matt stands on a little step in front of the loo and is now confident to pee - however the aiming-thing needs a fair amount of work.

Our next step is to somehow help Matt recognise that he needs to go and tell us. This week I am going to not remind him to go and see what happens.

The big challenge the whole poo thing. We need some help with this - any ideas are welcome. Although Matt has learnt to pee standing up (he just LOVES imitating his dad), he really doesn't mind sitting on the potty. He is happy to sit there for ages as long as we are happy to entertain him with book reading, however he is not sure how to make a poo in the potty. We have tried to catch him in the process and put him on the potty. I think he understands what is required, but still needs to figure out how to control his body. He doesn't tell us he needs to go, so we have to be really observant. Sometimes he has started making a poo in his pants and then he stops because he realises it shouldn't be there, but then when you put him on the potty after this he just can't quite make it happen. And shortly after he is off the potty, when back in his underpants, out it comes.

We are determined to not put any pressure on him in this regard, and I am hoping with time we will figure it out together.

We are really so proud of the progress he has made in the last few weeks.

Lovin Summa

Clever

I want to end the year off with a positive post. I have an inspiring memory of Matt from the year that I return to whenever I need to rejuvenate my spirit.

I think it was in November - we were watching the news and Matt saw some aeroplanes on the TV. He became excited, pointed, and signed aeroplane (while saying "ane, ane"). He then jumped up, rummaged through his toys, until he found his aeroplane puzzle. With great agitation he pointed to the aeroplane puzzle and then to the TV.

"Yes Matt there is an aeroplane on the TV and on your puzzle, you are really good at joining the dots, aren't you???" I said

Matt grinned at me, and gave me a look that communicated healthy confidence whilst also communicated a mom-you-should-know-me-better message. Then he signed the word clever whilst boldly declaring "vava".

What could I say, Matt is indeed clever.

Vulnerable

I find that I am haunted by a mental image.

The picture is of Matt during his end of year concert at school. For the last song all the kiddies stood on their chairs. Matt stood there proudly. After their cute rendition of "We wish you a merry Christmas" the kids jumped down off their chairs and exited the "stage" to go inside to get treats. The teacher led the kids indoors. Matt, however, could not get down from his chair. He is not always that confident with climbing, and certainly not when his arm is in a heavy cast. So there he stood. Alone. All the other kids able to get down and head inside. Matt didn't look too upset really, I imagine he was thinking that since he knew he couldn't get down, he would just wait until someone could help him down. Fortunately I was standing on the side of the "stage" area and could quickly move in to offer him a hand to descend from the chair.

I know that this is not a catastrophic event. I have no hard feelings towards the teacher - she can't be in more than one place at a time. I know cares for Matt and makes space for him in wonderful ways - he has really blossomed in the play group. I also recognise that I was there for Matt when he needed help and so he did not experience any frustration. I also know that this situation emerged, not necessarily because he has a syndrome, but because he had a broken arm.

Yet most nights (usually when I am up feeding Nic, and all is quiet and my thoughts can roam without distraction) I am confronted with this image of Matt standing alone on that chair. It haunts me. I realise that I fear the vulnerability that he might face in the future. Vulnerable, because in this world, in this society there might not be space for him to function independently. Vulnerable, because he will need to depend on others. Vulnerable to loneliness and aloneness.

I am still trying to figure out how to respond to this. Do I plunge myself into unceasing effort to help him to become independent; or do I just embrace his vulnerability, make peace with it; and trust and pray that there will always be some goodwilled, gentle and loving person around in Matt's life on whom he can depend?

I am not sure if I should post this, but since I find release in writing, I type. I also remind myself that this blog is, after all, not just about the victories that we experience, but also the struggles we face. So I share these feelings as a commitment to being authentic about our journey with RTS.

Best Christmas Present

The night of the 23rd December Matt could hardly sleep as the itchiness of his cast was bothering him so much. So intense was his scratching it looked like he was trying to scrape his skin out from under his skin. His normal cry was replaced by a panicky scream alternating with a miserable whimper. It was heart breaking. Finally exhaustion and the effects of a light sedative released him from the suffering into a kind sleep. The next morning we managed to squeeze him into the surgeon's schedule. It was decided that the benefits of keeping the cast on were not outweighing the suffering it inflicted.

What a joyous Christmas present - to be completely cast free!!!!!

Matt was blessed with a number of presents from various family members and friends. However one stood out from the rest. My dad had made him a cricket set - with bat, ball and cricket stumps. Matt immediately grabbed the stumps and transformed them into drum sticks. These "drum sticks" are his absolute favourite - taking them with him everywhere drumming to every tune he hears. In addition to drumming on the floor, chairs, upturned buckets, and tin cans; and he is a pretty good air-drummer.

This year Matt really understood a lot more about the Christmas celebration. He certainly was the most excited we've seen him about unwrapping his presents. On Christmas eve he came to us signing house and saying "ouse ouse??" with a definite question tone. He was referring to the nativity scene my parents have in their home. Matt was genuinely curious and listened as we shared with him our beliefs around Jesus birth. It was special to be able to share with him our faith. And I was particularly delighted that he asked a question about something. Often I see my friends kids asking why? and what's that? and I've wondered if Matt wonders about things. I am thrilled that he does, I look forward to answering more of his questions.

Holiday

Here are some of the highlights from our small holiday away just before Christmas. We had a fun time with two other families, all of us in this one huge farm house.

The view from our house.

Enjoying swimming in the dam

Matt enjoying the company of Kristen and Ethan.

They were quite good at sharing chips.

Matt being brave, but nervous on the canoe with his dad.

Story time whilst we all are sitting around the braai (barbecue)

The kids got to watch a dvd in the midday when it was too hot to go outside.

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Greater freedom

After four long weeks of lumping around a heavy and uncomfortable cast that disturbed his sleep and meant all water play was off-limits, Matt now has a new, light-weight and water-proof cast. Once again he braved the scary process of having a cast removed. By the time he was home it was all forgotten and Matt delighted in the new found freedom of movement.

I am so thrilled for Matt. Tonight he gets his first bath in 4 weeks. Tomorrow we leave for a 4 day break away and I am relieved that Matt will be able to partake in the water fun. In two weeks time Matt will be totally cast-free, and hopefully remain like that for a good few years.

RTS Cape Town

On Sunday we met up with Matt's younger RTS brother and sister. It is always so nourishing and inspiring to connect with these two families. Over a leisurely afternoon tea we swopped stories, shared advice, celebrated progresses, encouraged and supported each other.

The youngest is pretty Payton (on the left) with her mother Tamsyn. Then big boy Matt in the middle, and on the right is Sam (aka Smurf) and his mom Nicky. (If you haven't already checked out Sam's blog, follow this link.) The dads were also part of the gathering, but they were outside watching older siblings who were swimming in the pool.

It proved to be very tricky to get all three cutie-pies to remain seated, looking at the camera and smiling - despite a very energetic rendition of Wheels-Of-The-Bus by yours truly. So this pic was the best of the lot.

What precious little people.

Matt's end of year concert

Matt's teacher emailed us these pictures of the end of year concert. I was there but only managed to take some really poor video clips (whilst holding Nic) for Lloyd who sadly couldn't attend. Matt was unwell on the day of the concert, but still managed to enjoy it a little.

We are so grateful to his teacher Debbie for the excellent way she has included Matt into this group and how she has allowed him to be who he is, but has also introduced him to some new things. I am told that the kids have also been embracing of Matt - with one or two taking on a protective role of calling Debbie when Matt needs help climbing the jungle gym, or making sure Matt gets the playdough when it is being handed out. Others were not sure how much Matt could understand and would ask Debbie to ask Matt things, but she has encouraged them to talk directly to Matt and he was responded well to this. We look forward to Matt attending there for a 2nd year. Thank you Debbie.

Rejoice always

Matt is teaching us a lesson on being joyful in all circumstances. Here is a short clip of him dancing during worship time at church. Not letting his cast hold him back. He is my inspiration.

(Sorry for the sound quality - I was using my cell phone)

Rejoice always

1 Thessalonians 5: 16

Take 2

You would think that since we all adapted to Matt's of wearing a cast the first time it would be easier the second time around. Sadly not.



Maybe its because the weather is now much hotter and we are more aware of how much water play, swimming and bath time Matt is missing out on.



Maybe its because it is more uncomfortable - it contains plaster as well as fibre glass as it has been specially scuplted to Matt's arm to limit his movement (which is good for healing but makes it heavier); and it has a built-in sling keeping it firmly in place (the previous one's detachable sling lasted 10 minutes with Matt). The increased discomfort has made sleep hard causing great frustration and wakefullness at night!



Maybe its because he is not allowed to remove the sling even to put clothes on so he has to wear his t-shirt over his arm and cast, which doesn't really fit and is rather annoying.



Maybe its because the memory of how the cast was fitted brings back unpleasant feelings. Matt was put under anaesthetic so that the doc could manipulate into place his broken, angled bones and then put them in cast. After he came around from the drugs he was in the grumpiest mood he has ever been in (understandably - poor guy).



So what caused Matt to break his arm again, 2 weeks after his cast had been removed? No he didn't fall off a jungle gym or tumble down the stairs or get his by a truck...he was just walking, holding his teachers hand, decided to change direction, tripped and (while still being held by the other hand) caught himself on his arm at just the wrong angle. Same break, same arm.

Just 32 more sleeps.

NOOOOOOOOOOOOOOOOOOO!!!!

Matt has broken his arm again.


Sigh

Challenging Expectations

Maybe he thought that since Matt can't talk he won't be able to understand or maybe because Matt has a syndrome he thought it unnecessary to explain anything to him.

Matt developed a limp so we took him to be checked out. The Orthopedic Surgeon was very friendly and kind - I can't fault him there. I give him credit for asking relevant questions and genuinely seeming to be interested in Matt. However, I was angered by the way he started to examine Matt.

Matt was lifted onto the examining table, squirming. And the doctor proceeded to manipulate Matt's legs and hips - all the time Matt is trying to get off the table. Doctor tries harder - physically, still no words.

I intevened: "Please explain to Matt what is happening and what you are doing. He really does understand"

I started to tell Matt what was happening and why we were on this strange table. The doctor looked surprised but followed my lead, telling Matt that he needed to check his legs.

Matt calmed down.

He asked Matt to bend his leg. Matt did.

He asked Matt to lift his legs. Matt did.

And the rest of the examination followed calmly with a co-operative Matt.

I think Matt expanded this doctors expectations.

Freedom

I have never seen anyone scratch as much or for as long as Matt did the moment the doctor removed the cast from his arm. Even the nurse offering Matt a lollipop from a basket brimming with lollipops did not get a second glance - all attention was on scratching.

We were very proud of Matt how he endured wearing the cast and also its' rather brutal removal.

His arm is still a bit tender, as it is not fully healed. Apparently the bone actually requires movement now to assist the healing process. Whilst it is still weak Matt should take it easy and try not to fall on it. Hhhmm that is going to be interesting.

It is a delight to watch him being able to page through books again, to splash in the bath, to swing a bat, and to carry two items at the same time. And sleeping has become comfortable again.

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!