As Jason and I talked in the car on the way home from Thomas' final visit to Helen House, we made a pact not to mark his death day but to celebrate his birthday each year. Thomas was lying in my arms for the length of the journey, with slow breaths, looking very pale and giving every ounce of what he had left to stay alive for as long as he could - to make it home, to see his brother and sister for the final time and to say a final goodnight to the world.
However, at present, it doesn't feel right to just let this day pass as any other. Whilst it is not one I ever wanted to treasure, it has become such a significant date etched in our calendar, it inevitably carries a heavy weight that cannot go unnoticed.
The 48 hours leading up to Thomas' death were particularly horrific and a real low point. Whilst we try to block it out, it marked the end of a chapter in our lives that has had such a significant bearing on us individually and as a family. That time provided memories we do not want to look back on as such but they are part of the memories we have of our son and we therefore do not want to erase them from our minds.
The day of Thomas' death brought very mixed emotions. The pain that followed and we still carry is immense. It is not something that has subsided over time, rather we have learnt to accept it as part of who we are and have started to learn ways of dealing with it so we are able to carry on with normal life. It has brought with it many tears, nausea and crippling heartache.
And yet a sense of closure and relief also came over us that day. Thomas had had to endure so much through his short life and he put up such a fight to buy us time with him, we couldn't have asked him for any more. We had had enough of watching his suffering; watching the endless number of needles piercing into another section of his skin, watching the seizures take over his little body, watching him squirm each time his feeding tube was changed, watching the muscle spasms in his legs which caused him such discomfort and watching the effort he made just to take every last breath. He was now at peace.
He lay still and calm between us in bed, surrounded by love. He was free from his pain, free from his brain damage and free from his fight. He was no longer battling.
We have found his second anniversary a very difficult month this year. I have felt very disconnected from everyone and everything and I have struggled to find it in me to live life. Whilst I am very grateful to have had Thomas in our lives and to call him my son, I feel a huge sense of injustice, as though we have been robbed. His loss is still so rawly felt and the hole left in our family leaves us broken.
As our house went on the market, it gives us a chance for a fresh start and a much better quality of life for us as a family. However, I feel like we are selling off a little piece of Thomas' life. These are the walls he called home. These are the walls where we lived as a normal family in blissful ignorance, building our hopes and dreams for our future. These walls gave him and all of us a moment in time to live together, building precious memories and growing together as a unit. These are the walls where he not only lived but he also died, he took his last breath, safe in the knowledge that he was surrounded by love and cradled in my arms. That is going to be hard to leave. I almost feel like we will be leaving a part of him behind. I am fully aware in my head this is not the case but my heart does not feel the same.
We have also been more actively involved in the GBS campaign again, in particular gaining the support of our MP and trying to put more pressure on the Department of Health. We've had a lot of correspondence with him which has involved research and formulating our own arguments. That has been bad timing as I have struggled writing these letters so matter of fact and on such an impersonal basis when it is constantly reminding me that this isn't just a thing to us, this is what killed our son - this is what has had such a devastating impact on us all.
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