Tuesday, 26 May 2009
A Mog Blog
Because it's about time she had her own entry.
We've been busy these past few weeks. A Wahooligan to entertain us, a holiday, a hospital and hospice stay, meetings and phonecalls and visits, parties and playdates and well, you get the idea.
And through it all, Mog has sat in her chair. Sometimes watching, sometimes sleeping, sometimes joining in. And always waiting until the smaller ones have gone to bed before having a cuddle and a snuggle and a song.
She's outgrown her wheelchair. We knew this in January, but somehow agreed to wait. Now suddenly it's nearly the end of May, she's grown another couple of inches, and the need is becoming urgent. We're still waiting for that appointment. Meanwhile she perches on the edge, or uses her buggy, or, as today, is content to watch the activities of the day from her armchair.
Mog has had eight nights at the hospice - the longest stay there she's ever had. For four of those nights, I was there too - but I step back from her care when we stay together. I get the cuddles and the smiles and the punching me on the shoulder when I don't drip coffee into her mouth fast enough, and her carers and nurses there get the poo. I have no complaints.
But after eight nights off, I am seeing her with new eyes. Mog is very definitely racing through puberty now. And she's six. This is disconcerting. Much of her development is disguised under several layers of pads and clothing, staps and collars. The fine crop of acne she seems to be developing is a little harder to escape. She still has baby soft cheeks - how can these be sprouting spots? We've still not taken her for her first ever haircut - am I really going to need to shop for her first bra? Not today or later this week, but it won't be far off if she carries on like this. She has shot up in height and none of her summer trousers fit; thankfully this is something she considers to be a good thing, as it means we need to go shopping.
I've been watching her these past few days. And she is tired. She wakes up at around half past six, listens to some music, gets up, has a sleep in her chair until her little sister clatters into her or drops her toast dish. And then she fits for a bit, and sings for a few minutes, and then she goes back to sleep again. Today she has spent at least four hours of the day sleeping, for ten minutes or for two hours. She isn't fitting when she's asleep, and I suppose that's a good thing. But not great.
I started to say it isn't great when compared to this time last year. But then I took the time to read through last May, and I realised she was quite ill quite often then too. And in June. So maybe she is just always tired, always sleepy, always twitchy, and I somehow filter this out of my consciousness. Which would be comforting I suppose, except that she definitely woke up last summer for a while when we took her off her Vigabatrin. Unfortunately the seizures also woke up, and much as I hate to see her sleep her life away I do prefer that to the fits. Anti-epileptic drugs have a lot to answer for though; since she started on the Epilim her arm hairs have grown until they're an inch long in places, and I can nearly plait her legs to match her head. Since shaving a six year old has never featured highly on my list of things to do before I'm forty, and shaving a six year old with unpredictable myoclonic jerks has held an even lower place, she's just going to have to live with it. Long sleeves, long skirts; she can develop modesty instead.
I don't suppose there's any chance early puberty might make her a shorter adult is there? If she is going to have to deal with teenage hormones she might as well have some advantages from it. And whatever you think of Ashley X (or rather, her parents and her medical staff), staying small enough to be lifted does have advantages when you can't walk, stand, or sit up by yourself. Just for the record, I'm not advocating we put Mog through the "Ashley treatment"; I have no interest in keeping Mog as some kind of eternal child. I look forwards to seeing her grow into a beautiful young woman. I'd just quite like it if she weren't quite this far down the road a month before her 7th birthday. But there we are, she is, whether from her seizures or her other disabilities, or the many meds she takes to control them, or perhaps hormones in her milk, or any one of a thousand different reasons, she's growing out of little girlhood and into little womanhood. And the if the difference after just a week is noticeable, then I'm guessing the difference in the next few months will be impressive too. Perhaps it's just as well we haven't recast her wheelchair yet; we'll need to be sure there is room for growth and adjustability in the harness.