Here’s a new voice for the blog…Celia, Henry’s Mum:
After he posted here last night at the end of a long and gruelling day, I was relieved to see JD looking a lot happier and almost unburdened. When you mostly write for your living and then you suddenly stop, you lose something vital. Writing your thoughts down is integral to processing them – to the extent where many of us think in text rather than in voice. So I’m now having a go at blogging in the hope that it’ll help me make some sense of what’s happening to us. Apologies for those who are getting used to JD’s spare writing style. He’s a pro- I’m a self-taught rambler.
We have learned a lot in the last few weeks – much of it stuff we didn’t want to know. No-one wants to be in a serious conversation about blood cancer survival rates for young children. No-one wants to be told their kid won’t be going to school for the rest of the academic year. No-one wants to hear their 6-year-old reassuring his parents he’ll be better by the end of the month so he can go to school when there is no chance of this happening. No-one wants to weedlingly persuade their bald child to wear a hat when he leaves the house very briefly – mostly because it’s cold but also because very secretly it means you can pretend for a few moments that everything is the same as it was and no-one is being treated for cancer. But there’s other stuff too:
1. it’s a cliché – but kids are adaptable, trusting and optimistic. While Davidson and I perspire at every test and have to remember to breathe sometimes, Hen is mostly cheerful and full of energy. This is despite being loaded up with meds we are repeatedly told may make him very poorly. He can find something to divert him or get excited about every five minutes – right now he’s thinking up ways to stop his monkey from peeking at the birthday present he’s wrapped up for him. He can’t go to cafes, restaurants, museums, on public transport, swimming, the cinema, the theatre – any place you’d take a kid in wet London weather. He leaves the house very occasionally, but has found millions of ways to entertain himself. And while he’s been on drugs that affect his quads and give him bone pain, and he has at times been unable to climb two stairs or walk further than the bathroom, he is still telling everyone he can run faster than Usain Bolt.
2. People are bloody lovely: We already knew this. Three years ago Huck, Henry’s brother was born thirteen weeks early. He was in hospital for 101 days, and on some of these he had to fight for his life. During this time our family and friends took care of Hen so we could be there for Huck’s battle. They cooked for us, did our laundry, did our admin, held fundraising events for the prem baby charity, and supported us in tons of ways – especially morally. This time it’s all happening again but to add to the existing support network we have now been fortunate to add Hen’s school friends and their lovely parents. We are so grateful to the old guard who have rolled up their sleeves again for us – especially our siblings and their spouses, in whom we are supremely fortunate – but also the new friends. And our workmates, who have now become friends too. Both of our bosses have been incredibly human and ridiculously generous. Mine has even given Henry a pre-paid account with Climate Cars (they’re carbon-neutral, and fab!) to ferry him to hospital and back. This has been a precious gift. A very old friend, Pam, lives in NY and has developed a three-year running programme to support Henry from across the pond, throughout his treatment.
3. (This one is both a cliché and a run-on from the section above) It takes a village to raise a child: Like many people who move to a neighbourhood in their twenties, we didn’t know anything about Tufnell Park. We went to work, drank in town and came home only to sleep and veg. As the kids have grown we have learned about N7’s nooks and crannies, unexpected quirks, the shopkeepers and even (despite what many of our fellow Northerners think about That London) our neighbours. It’s been one of the joys of parenthood for us. We have two retired teachers who are coming in to work with Henry on fun school-stuff, and offers of many weird and wonderful types of help from so many local people of all generations. The lovely actress from three doors down called in last night with a job-lot of Ruby Violet ice-cream, a favourite of all Tufnellians. A few seconds ago Henry had a big cheery wave from our bin-man. It all helps.
Anyway, as I said, JD’s a pro. He has just popped his head ‘round the door and said this is far too long for a blog-post. So that’s it for now. Thanks for bearing with me x