There are a few things that are different this Christmas. One huge thing is that Charlie has a diagnosis.
One huge thing is that Charlie has a diagnosis.
I’m now shopping for ‘my daughter with Rett’.
This may seem irrelevant when it comes to Christmas, but it changes the way I think about gifts because it changes the way I envision her future.
Whilst this is not all bad, it alters the game a bit.
I no longer look at ‘encourage walking with lights and music’ toys because I know that the idea that she ‘just needs the right motivation’ is unreasonable.
I don’t look at toys that require fine motor control anymore because I know that she won’t be able to master them and they’ll just end up taking up space.
The other big thing is that Charlie has, this year, had a number of growth spurts that put her well outside of the height and weight limit for the developmentally appropriate toys available in the shops.
I thought it was tough last year when family and friends asked us what Charlie might like for Christmas – what the hell am I going to tell them now? Books? Clothes? Money for therapy equipment (would that be wrong)?
This may all sound a bit ‘bah, humbug’, but I can assure you that I’m not that sort of girl.
I love going out to look at Christmas lights, I love seeing Santa at the shops, I love the Christmas specials on TV, and ‘Away in a Manger’ sung by a primary school choir always brings a tear to my eye.
I love the family togetherness of Christmas, the way it seems to make everyone a little kinder and more community-minded if only for a short time (and never on the last late-night-shopping day of the year).
I’m not even religious, but Christmas gives me the warm fuzzies and I love it.
We’re the family that sings ‘God Rest Ye Merry Gentlemen’ (in canon) in the car during December, and recites ‘Twas the Night Before Christmas every evening of the month, just before bed.
I kid you not, we’re that cheesy. And we love it.
The funny thing is, I started writing this blog on a bit of a downer, thinking about all the things I would be fruitlessly wishing for at Christmas time.
I would wish that she could open her own presents on Christmas morning, that she would understand the excitement of Christmas eve, and that she would take her turn reciting the poem one night (everyone learns it and has a go).
As I’ve been typing, though, I’ve been picturing her place in our family at Christmas, and realising that she is at the centre of every activity.
She loves the sound of our wobbly ‘God Rest Ye’ chorus, and it can stop her irritability in its tracks.
She always tries to eat the grapes we put out for the reindeer, and we have to keep the plate right out of her reach (a source of much merriment).
The children love to help her open her gifts, tearing the paper just enough so that she can get her hands under the flap and finish the job.
She sits in front of our tree with all the lights in the house out and listens, enraptured, to the Night Before Christmas, bathed in the multi-coloured glow of the fairy lights.
We always argue good-naturedly about whose turn it is to tell the story, and on whose lap Charlie will hear it.
Christmas 2015. It’s been a tough year, and we could use some good cheer. Bring it on.
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