100 Days

Somewhere along this Easter weekend I lost it a little bit. I don’t generally make a fuss when it comes to significant dates, like birthdays and festivals – we normally do enough to make it memorable and special without having high expectations that make the day stressful or raise an unobtainable bar for the next year. So I wasn’t really bothered beforehand about missing yet another annual celebration where we should have been at home together, but somehow when the weekend arrived, the reality of our situation just hit me all over again.

This time last year we were celebrating getting a new building to meet in as a church, and hanging out together as a family doing all the usual bank holiday lazy family things. We went up to our friend’s parents’ farm in the Lakes and had a great time helping with the lambing and riding quadbikes up around the fields (see Good Friday Fun on the Farm ). As Easter presents, I got the kids CDs from the USA that I’d had on record as a kid (Psalty’s Kids’ Praise for anyone who remembers that) and I remember writing little messages on them for each of them that were really significant. We may have done a little Easter egg hunt around the house as well – I can’t remember if that was last year, or the year before, or both. And even though were already in and out of hospital with Scooby at that point, and he was already having seizures (I think he even had one while he was on the quadbike because he got so excited!), he was still walking around as usual and there was no way we could’ve imagined what was going to happen in the next twelve months and where he’d be this Easter weekend.

What he and I were doing this Easter weekend was mainly sitting curled up on his bed together and trying to stop seizures from coming. For the last ten days his seizures have been ridiculous again and they only stop when he’s asleep or drugged up with rescue medicine, which makes him sleep a lot anyway. There’s been no chance of building up his muscles to get him moving again because he was either shaky or sleepy and although (hallelujah!) the bone marrow transplant still seems to be a great success, he still can’t do anything other than lie or sit in his bed motionless. He can’t eat much because that uses a lot of muscles and he can’t talk much because he’s very sleepy. We tend to watch movies or he listens to me read or watches me make stuff under his instruction, but he can’t really take any of it in because he’s drifting in and out while he does it.

We’re only 31 days post-transplant but we’ve been struggling with seizures like this since September and not only does it feel like we’ve gone backwards a huge amount, it also feels like we are getting further and further away from a date to get him home - he’s just too unstable. He needs so much monitoring and tweaking of medication and specialist interventions that I can’t imagine him ever getting to the point where he could come home for a few hours, never mind permanently.

Now that it’s April, and another yearly milestone has gone by, and we’re coming up to important family events like my cousin’s wedding, and the birth of my nephew, and my sister and her husband leaving for a year-long missions trip, I just don’t want to do this anymore. I want us to be back together, all at the same time, in our house and hanging out with people we love, instead of snatched visits in one room all the time. I feel like having a toddler-style tantrum if only that would work to get what I want.

And then today has really compounded it. After nearly two weeks of his bowels seeming to get better, he’s had several significant bleeds today, meaning that something is still very wrong, and also sending that beautiful new blood his body is working so hard to produce out of his body too quickly. His red blood cells can be replaced through transfusion, but the white blood cells – the all-important reason for the transplant in the first place – can’t be replaced, and so if he can’t fight infection, he may need to go back on the anti-virals and anti-biotic medicines, all of which make his seizures worse.

And then I worked out that today is the hundredth day of 2012, which means it’s the hundredth consecutive day of him being in hospital. And that sucks too.

So I had a little paddy, and a pity party, and a chocolate fest, and watched too much TV, and kept hiding in the bathroom to cry and feel sorry for myself and for my boy, who I hoped wouldn’t remember this time last year in case that made him feel sad too.

And then today I pulled myself up by my bootstraps and got it back. 

Here’s how I do that. I stop looking at what-we-were-doing-this-time-last-year and what-we-should-be-doing-at-the-moment-instead-of-this, and I look at those who’ve got it worse off than us. It’s not hard to do, especially after so long in hospital. I think of parents I met in Lancaster, Manchester and Great Ormond Street, who had children sick from birth while mine was still running around not looking ill at all, and they knew there was no chance their child was going to get better from what they were born with – they just had to turn their lives upside down and get on with it. I think of the parents on the oncology ward next to ours whose little children are on their third dose of chemo for the same thing and how their chances are far more depleted than ours because so far we’ve only had to do this once. I think of the family on this ward who swapped twice a week like we do except they weren’t driving two hours up the motorway each way to do it – they were flying from Jersey. Most of the time, they didn’t even get to see each other as their flights crossed in the air. And I think of the family who have raised a fortune to come here from Nigeria, leaving some children behind in order to get a BMT for their son so he doesn’t die of the same condition that killed their toddler last year.

And then life doesn’t seem so bad. We’re doing this – the whole separation from each other thing – because we still have everything to fight for, even if it’s going to take a long time to get there. A hundred days in means we’ve got a hundred days under our belt, and hopefully less than another hundred to go. We may not be seeing a lot of each other, but we were getting some time every week, especially now that his infection risk has been lowered and his siblings are allowed to visit him again. There’s every chance that next Easter we’ll be back up at that farm terrorizing  helping with the sheep again, and Scooby may be able to sit upright long enough to be taken on the quadbike again. Or maybe we could fit his wheelchair with some kind of jetpack and he can overtake us all. 

Yes, the present is extremely restricting but the future is still wide open, so I need to stop mooching about the past or worrying about the future and rest in the well-worn cliché of taking it all one day at a time. Even if it will be day one hundred and one of the same darned thing....