Finally we are given notice we can start to think and plan for a day we never believed would come around so soon. Our consultant, the slightly angelic Dr Slatter, will see us next Wednesday probably to discharge us, Sam being well and avoiding all other complications, of course. This 4-6 week period after transplant is the trickiest, the risk of Graft vs Host Disease at its highest. But in theory next Wednesday we can start to plan for the next phase.
It's been curiously quiet these last few weeks. We've been slowly learning the ways in which we can live with an immune-deficient baby; playing fast and loose with the town centre on a Saturday afternoon was a bit of a heart-stopper... However, weighed against his needs for a less populous way of life, are our human requirements for fresh air, a change of scene, an almost visceral need to give ourselves space around ourselves so that we're not constantly nudging and rubbing up against each other's still-slightly-bruised edges and exploding into vicious, tearful rows, short and sharp and immediately recanted, but still enough to wound with jagged words and nowhere to go to dodge them.
As those closer to me know, I'm not that great with 24/7 company. Although the days with Sam in this small flat are claustrophobic and nearly-dull, it's a relief when Matt has had to bring Oscar back and forth, giving me some valuable space to breathe and analyse and sometimes stay very still. To reason and give life (and sometimes take back) thoughts I wouldn't normally give space to. Then I can welcome him back genuinely and off we go again. (Quite seriously, words that strike fear of god into me are "And now we can be together ALL the time...").
I've also discovered I'm a much more positive person than I ever thought possible. We have had many many serious conversations with many doctors about Sam and at no point have I found myself thinking "This. This I cannot live with. I'm out." I haven't ever thought the worst; to a fault, in fact - I have taken only the good news from each conversation and possibly done quite a bit of *fingers in ears* la-la-la-ing at the rest. But this has also enabled me to, I think, cope with the realities of our so recently-fragmented existence better than I thought possible. As well as my unenviable ability to pigeonhole my life.
We saw the geneticist last week about the micro-duplication of this tiny bit of gene Sam has. All along I have taken the doctors at their word and simply looked at the child we have, this growing, developing, chatting, grabbing, eating, sitting child and refused to believe that it would have any impact on his life whatsoever. Blind wilful stupid optimism, you might call it. Naïve and ignorant, maybe. But this meeting, that we were both dreading with that cold ball of fear deep inside, wasn't as bad as it could have been. Sam may have a few mild learning difficulties - and that's MAY - but with the way he's developing, anything that might crop up won't be severe and he'll just be a normal kid like millions of others, but we have the added benefit of knowing in advance there may be dyslexia or speech development issues that might require a bit of therapy. Nothing heart-stoppingly limiting. Nothing that millions of people don't live with every day, having never expected such a thing. At least we are PREPARED. I love being PREPARED.
And I have found myself, day after day, with news of the Zika virus and the Times Stillborn campaign and a thousand other bad-news stories about the terrible things other families have to live with just thinking all the time, ALL the time, how bloody lucky we are and continue to be. How we have so far managed to dodge every bullet that came out of the SCID gun: He never didn't gain weight; he never got so ill he never recovered; he got a sibling match donor; he didn't need chemo; he was only in hospital 7 weeks; he so far continues to dodge GVHD; his micro-duplication isn't really that severe.... Honestly, of all the things that could have gone wrong with his life from the moment of birth, conception even, given his circumstances, we seem to have gotten off so lightly.
The only thing that keeps me up now is the thought that the transplant might not work. And then we have to start all over again.
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