It’s always the small things isn’t it? Within the world of additional needs we don’t call them milestones, rather they are inchstones. Blink and you’ll miss them in the way of every day normal, but to us… everything. Proof positive that there is progress that, however slow, we are moving forwards. We all fear stagnation, worse, regression so these are achievements to be marked.
Always a little nervous of saying ‘Look, he is here’, it’s also good for the soul to step back for a second, see how far you’ve come and Alex… he’s come on in strides, just in the time since I started this blog. Alex is sitting up, but he is also spinning around to reach things, to react to sounds (rustling of food wrappers are without doubt the best motivator) and, by a convoluted combination of lying down, swiveling around and sitting up again, he moves – quite stealth-like – across the floor. Objects I’d thought were safely out of reach… turn out to be fair game.
There is also proper babbling. New sounds keep appearing and proper little chat sentences are delightful to listen to. We nod, mirror them back, chat along and hope that, one day… these will be proper conversations. To hear Alex’s voice – to hear it properly coming through when there were times I thought we never would – I can’t get enough of it. What I hadn’t anticipated is that Emma really enjoys joining in too. She and her brother squeak sounds at each other, most times at the same time, sometimes it’s almost a proper chat, but either way. To see them interact. Quite the thing.
This may sounds like an odd one for the ‘yay!’ list but… we can tell him off. The more Alex is able to do things, the more room there is for mischief. And he knows it. He has what we call ‘cheeky face’. He looks at me, gives me the grin, and then keeps right on doing the thing you’d asked him not to. And so, finally, we feel able to admonish him, use the stern voice, just like we did with his sister, because – in however small a way – his comprehension is growing. That’s good for Emma, as I know sometimes she feels he gets special treatment and good for us – everyone gets treated the same, if only for a moment.
I know many of you follow http://momastery.com/. One of her Facebook feeds a couple of weeks ago posed the question: You’re dying, what are your regrets? I had a brief moment of not being able to thing of anything substantive beyond the fact that I would truly, dearly, like to visit the Maldives when… I remembered Alex’s first months. I still find it hard to look back at his baby pictures. I can coo over Emma’s but Alex’s… they’re so wrapped in that raw pain of What is Happening? That my eyes slip over them softly, pretending they’re not in the room.
I sometimes feel as if… You know how we would talk about our pregnancies at the end? That the babies were cooked, ready to come out? Alex came out a little under-baked. He took longer to unfurl, to show us who he was. Now, my little boy is in the room and his personality – my funny, quirky, handful of challenges boy – is there for all to see. I look at the more recent pictures and they make me laugh – I remember where we were, who we were with and I can laugh at the memory.
That he is such a complex mix of disabilities is now such an intrinsic part of who he is. Emma sometimes asks me ‘Mummy, if Alex weren’t disabled do you think he would still [insert activity here]…’ And I can’t answer her. I tell her that we have come too far, that I can’t Sliding Doors him, because he is Alex.
He is the boy who reaches up his arms when I ask if he’d like to come with me? This is the boy who taps my arm if I don’t give him food fast enough. This is the boy who helps, as much as he can, with simple every day personal care tasks… who finds his sister hysterical, his father the best rough and tumbler ever… who indicates through every swift and happy movement that Life is a game to be played. This is who he is. And that’s ok with me. [It’s ok with Emma too, she just likes posing 8 year old’s questions].
That we can celebrate him – and keep on celebrating the small achievements – is huge. It’s a turnaround that we didn’t always think we would make. It is happiness. Which I think is an achievement too…