My little miracle baby is all grown up, she's made it, she's beaten the odds and become a gorgeous healthy special young woman. I can't help but remember how it all began, with that fateful trip through the dim corridors of the hospital, when I was told I had a 70% chance of delivering a live baby. And all those people who told us to baptise her in the hospital, "just in case". I always believed in her, I never doubted that she would survive and thrive, and so she has.
Before Smiley I would've run a mile at the idea if being a mum to a child with severe disabilities, but now I cannot imagine life without her. Ever.
You can lose yourself in the innocent joy in her beautiful eyes, and her infectious excitement. When she smiles, you can feel it from the other side of a room, and you just have to turn and smile back. All she wants is love and attention, and she repays every bit with interest and more. Even when she's naughty, she does it with so much charm and delight that you have to smile with her.
It's not always been easy: The first 2 years were a blur of fear and appointments and diagnoses and medical equipment and learning a new language and a new way of living. I remember sitting crying helplessly on the sofa when she was disinterested in yet another project I had worked so hard to prepare to help her progress. Wondering what I was doing wrong. When the news about her got worse and worse, when it became clear that she would not walk or talk as other children do. When I realised that she would need 24/7 care for the rest of her life. When she was kicked out of school and put in a day centre with no teachers. When I had to stop lifting her and face the fact that she was no longer a cute overgrown toddler, but a severely disabled teenager and I was her carer. And there are still times when I cry: in the middle of the night when I can't work out what's wrong, in the day when I can't find something to entertain her, when I try so hard, and she just wants to watch the same YouTube clip over and over again.
But she has taught me so much about the value of every human life, and how every child can thrive with love and support, and I want to say huge thank you to everyone who has supported her and me over the years. I couldn't have done it without you.
Today will be very special. She has piles of presents, which we will be opening for days. But the one I want most of all? A really good adult service for when she leaves school next summer. Only the best for my Smiley xxxx
Note: Smiley's story begins here and there's more links to posts about her here too
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