Our daughter’s Rett syndrome is a constantly evolving beast.
In the first instance we had a beautiful healthy baby, developmentally normal – advanced even, and happy.
She smiled, clapped, made animal noises on demand, and loved to turn the pages of her favourite books.
She could nod and shake her head for yes and no, and she made everyone laugh by showing off her brand new baby teeth with a huge grin whenever we asked to see them.
Without warning, our baby disappeared into a world we couldn’t reach. No more smiling, no crying, no eye contact.
Since then, it’s been a long, hard road to recover some skills.
She can no longer turn pages with her one semi-functional hand. She doesn’t crawl or walk, and has no verbal communication skills.
Rett Syndrome sufferers are known as ‘silent angels’ because this is a fairly universal element of the disorder.
She is all wide-eyed love and innocence at five years old, and her smile and giggle is infectious.
She loves people, and especially enjoys one-on-one time with anyone. Music never fails to move her, making her laugh or dance, or just listen intently or go to sleep, depending on the song.
Charlie works so hard for the small gains we’ve made.
Her therapies are arduous, often painful and frustrating, but she rarely complains.
We concentrate on physical development and strength, functional capabilities (especially using her hands), and communication through eye gaze.
These three domains seem to each take a turn in the spotlight, although her therapies are mixed and very much cooperative.
She has been particularly strong in standing, spending time in her walker and even testing her limits with a few independent steps.
She is tolerating difficult positions for longer periods and her Daddy even remarked that she felt lighter to hold, as though she has been supporting herself a bit more when we lift and transfer her.
On the occupational therapy side, however, we seem to be backsliding.
Charlie is having trouble picking up her cup to drink, and drops things more than she should.
She struggles to pick up anything small between her fingers, and her hand wringing and hand-to-mouth behaviours have increased to a point where it affects her ability to finger-feed (the only significant self-care she is capable of).
This pattern is typical of Rett Syndrome, and of our experience with it in Charlie.
The highs of a new skill followed by the crushing defeat of a declining one – but we try to keep some perspective.
Next week, we might find that her grasp improves but her scoliosis becomes more pronounced.
If we throw her communication development into the mix, it complicates things even further.
Last week, she ‘said’ her first words with her eye gaze machine and we rejoiced. This week, she has barely raised enough interest to play the games on her device.
We make a conscious effort to celebrate the wins and let the losses flow off our backs.
It’s not an easy balance, but it’s the way we stay positive, and the greatest gift we can give to Charlie is our belief in her capabilities.
She can, and she will. And we’ll have a party when she does.
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