Wednesday, December 29, 2010


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.


Jessica mommy to Alex/ RTS said...

Im glad you shared your feelings. It is hard to see any of our children struggle, but I say you plunge yourself into unceasing effort to help him become independent. We are all vulnerable, so Matt is no different, and needing a little extra help sometimes is ok.
Much love.

Nicky said...

Oh Jacqui, catastrophic event or not...your heart must have broken just a little. To me I think that you have already found a well-balanced solution...the fact that Matt patiently waited for someone to come help him instead of becoming panicked and distressed means that you have prepared him quite well on how to cope with tricky situations and I know that you already have an incredible trust in the Lord - so just carry on being that already wonderful mom that you are!

Anna said...

I clicked "next" to see who's blog came up after mine. Yours. It made my heart smile. Thank you for sharing this story. it put a lump in my throat. I understand.....