Scooting determinedly across the floor, 11-month-old Benedict is a right little adventurer. Once, he got stuck behind the sofa, but was easily rescued. He isn’t quite crawling – but he does get on fours as if he’s on the starting block for the 10m (gulp).
Ben is also starting to pull himself up to standing and cruise. We had to move our plasma television well out of reach when he made as if to climb it. Is it possible for a baby to get in an Olympic mood? Ben loves pointing, so much so we’ve witnessed him doing what looks like an Usain Bolt several times.
That pointing is proving useful in other ways too. Just below the children’s bedroom light bounces a mini-slinky with a black-and-white wooden dog in a red scarf. When Ben points at it saying, ‘Daaa’, that’s him learning to say ‘dog.’ He said ‘Daddy’ in front of me the other week, but of course he doesn’t know what it means. Right now, it’s just another discovery he’s made.
While Ben still hasn’t yet learnt to sign, his expressions often leave us in no doubt what he wants. At mealtimes he’ll wail if we don’t give him his water-beaker or a cheese puff to munch on NOW, and push an offered spoon away when he’s had enough. Expressing more complex wants can’t be far off.
I cut Ben’s hair for the first time a fortnight ago. He was getting dizzy with all the head-shaking he was doing, like some indie rock band dude, to make his outgrown fringe fly across his eyes.
He makes us laugh ever so much with his babyish quirks. He bawled when he slapped a hollow plastic cube into his eye, but it didn’t hurt – he was just surprised by the speed with which it met his eye.
He can clap his hands and pop bubbles enthusiastically. The noises he makes – usually ‘da-da-DAAAAA!’ – are thoroughly entertaining, like comedy music, as is his giggle when his tummy is tickled, or the little grunt he gives every time he does his commando-crawl.
Seeing how much amusement Ben gives us – and the ease with which he’s reaching his milestones so far – has brought home to me how much sadness we have had to endure with Isobel. I don’t mean just the grieving, but also the not knowing which way she would go in her own development.
Three years down the line, we still don’t – although obviously (and thankfully), we’re much better informed about Isobel’s disabilities than we were when she was first diagnosed. When others ask if she will walk, we’re as clueless as they are.
It’s clearly reflected in how each child is developing right now. Ben has upgraded to Pampers size four nappies, while Isobel – being so slim and leggy – has slipped to size four-plus.
I’m not trying to compare; rather, pretty much every discovery Ben makes is another one that Isobel has yet to. Every parent notices differences in their children’s development, and we are no exception. We’re just acknowledging those differences.
Inevitably, that makes Ben a huge learning curve for us. When I watch him negotiating a stand-off with the toy chest, I still wrestle with the temptation of saving him from a tumble before he’s had a chance to try. First-time parents probably feel the same way – but my particular anxiety is atypical; I have a very real disincentive to want another disabled child.
But this formative stage is part of Benedict’s story, and I have to allow him to live it. Unfortunately, it means taking my eyes off Isobel so to supervise Ben more thoroughly as he moves around the house.
Inevitably, this will make her more aware of her own limitations while she remains in the position I left her in, possibly reinforcing her frustrations – a consequence of having a younger, non-disabled sibling that cannot be avoided.
Hopefully, in time Isobel will use this as another opportunity to learn to fend for herself. Anyway, we will never leave her behind. Her story is already embedded deep into this blog as its raison d’ĂȘtre and the incentive for the lives we lead. She has taught us so much, not just about the wider context of disability but also ourselves as deaf people, and will continue to do so for as long as she lives.
In the meantime, while Ben is climbing all over her in an effort to get to the ball that she is triumphantly keeping beyond reach, he is already learning to share his own discoveries with his big sister’s.
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Reblogged this on Melissa Mostyn-Thomas.
I am trying to figure out what I love more Ben’s original name (Benedict) or his fabulous shaggy hair. I am sure you mentioned Benedict previously, but I must have forgotten. Both of your children are adorable. Was the decison to have another child after Isobel difficult? Or was there little thought in the matter. Thanks for sharing Ben’s story. By the way, his dark eyes are stunning.
Hello Nate! If you could see them both now in the flesh your heart would melt into a puddle! Having another baby after Isobel was never in question.
In fact I’d say there was more impetus. We knew that Isobel would benefit from having a sibling in her life, because not only would she have a playmate in the home, he would bring out her competitive streak. And I’m sure you agree that a little competition is healthy for a child’s progress.
From the day we decided to have children we always wanted two – one girl, one boy. Isobel’s disabilities never put us off – although myself having had a traumatic birth experience I can see how it would put off other mothers of children with cerebral palsy.
When I was pregnant with Ben I wouldn’t go back to Isobel’s hospital. Instead I signed up for consultant-led care at a different hospital. Their service was superb. Because my labour was so fast last time, they recommended that I go in at 38 or 39 weeks to be induced, and then stay there. That way they could have more control over the birth.
They also offered a Caesarean, but I refused, because I didn’t want to be wondering afterwards if I could have had a happy natural birth.
But even with such fantastic ante-natal care in place, I couldn’t stop worrying. The trouble was that both babies’ pregnancies went super-smoothly so when I went to hospital to give birth I was so terrified, it all felt too good to be true. I am so glad that all the people I expected to be there – the midwife, Miles, the BSL interpreter – were, all the way through. Isobel did not have that privilege at her birth.
Let me tell you, Nate, both Isobel and Ben are two of the best things that ever happened to me. I wouldn’t swap either of them for the world.
Mellisa, you are so darn inspiring! I was so nervous having all three of my boys, but you had another baby after such a tramatic birth. You are very brave. I kind of figured you did not give having another baby another thought. I love how how you hoped to have two children, a boy and a girl. Your wish came true. I hoped the same thing, but as you know I was meant to be the mother of THREE boys.
I have been reading a few other posts on your blog and did not realize you had a cochlear implant. It was rather recent too. Interestly, I have wanted to learn sign lanuage as a hope to widen my communication options too. I am not sure how to go about doing it. I feel I rely too heavily on my weak hearing. Checking into some resources, thanks to you being so darn inspiring.
Motherhood seems to suit you. I feel the same way, in that my boys have been three best things that have ever happend to me. Well, at least until two of them turned into teenagers. My husband is the forth best thing.:) Keep up you wonderful stories of the family. I love hearing it all.
You are so sweet, saying such kind words! Thankyou. I am glad to have inspired you. It is so important to try what we can to get access to everything – be it getting a new cochlear implant, learning sign language or otherwise. It can be a rocky road, learning to accept yourself as a deaf person (I know I’ve been there), so I want you to know that should you falter by the wayside you can depend on my full support. You really will.
Thanks Mellisa. I will keep your support in mind. I may need it!
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