This is just a short update to acknowledge and celebrate 18 months Post- SDR.
As you can see Thomas is doing so well. He is happy. He is thriving at school. He is working incredibly hard but he is also having a childhood. He is amazing.
Thanks to a very supportive school and dedicated team around us we are managing to keep up with the recommended weekly 3 hours of 1:1 physio along with weekly swimming, horse riding, yoga and daily stretches. It’s exhausting but it is essential.
So, where is Thomas now? What has changed in the 6 months since our last update?
They have both settled beautifully in to Y1 and are loving and embracing all aspects of school life.
In January they joined an after school drama class at the wonderful space that is the Pegasus Theatre and LOVE it! Their first performance is in a few weeks’ times and they have lines to learn. It will be a tear jerker!
Thomas has recently started looking for opportunities to walk independently at school with no walking aids such as in to assembly or from the classroom to the book corner. This is a huge deal and shows that he is beginning to see himself as a walker and wants to be more independent. This had to come from him and does feel like a major breakthrough.
He has been walking up and down the stairs for a few months now but he has recently tried with no splints on. Nerve wracking for us but wonderful to see.
In the pool Thomas has been managing to swim a whole width of the pool on his back without support and even managing a few meters on his front now he is tolerating goggles. This too feels like a major breakthrough and will hopefully help him feel even freer in his body and in the water.
In a similar vein, his confidence has soared in horse riding and he is regularly riding with just one volunteer leading. Watching him is simply joyous.
At home he is walking, cruising and playing while up on his feet in the house at least 50% of the time rather than crawling. This was and is a dream come true for us and will hopefully become more and more frequent as he gets stronger. Which he will.
So yes, life has most certainly felt as though it has gotten lighter, and our world bigger, these past 6 months. We are living our lives again and looking to the light rather than feeling utterly consumed in darkness and overwhelmed with fear and uncertainty.
The next 18 months plus will continue to be dominated by physio and constant monitoring of his progress BUT, and I feel this now, BUT we are OK. Thomas’ disability is part of him, part of our lives and always will be, BUT it doesn’t define him, it doesn’t define us and how we live our lives. He is having a childhood and they are happy little people. Life is full of possibility and we are so grateful for the life we have.
And so, thank you, thank you for helping us get here. Thank you for your love, your support and your BELIEF in us and what we hoped for, for Thomas.
Just look at him now.