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.