This is a tough one to write about actually as almost a week has passed and I’ve felt so many different emotions over that time. But, here goes…
There was me thinking we were going to the hospital to get a diagnosis of Hypermobility confirmed. Little did I know I would be leaving that hospital feeling completely numb and absolutely terrified. I think each and every moment of that appointment will stick with me forever. At first, I don’t think I even took the consultant seriously. My first question was ‘OK, so what’s the treatment’? I never expected to be told there isn’t one. Then we were told of the life expectancy and the seriousness of this condition. The blood drained to my feet like a lead balloon and my instant reaction was to cuddle my little Hugo.
All along I am thinking ‘this happens to people on TV, this doesn’t happen to normal people’. Dont get me wrong, I’ve always watched Children in Need and felt some degree of emotion to those affected by terrible things, but suddenly I was faced with the realisation that I am now one of ‘those’ people. I was desperately fighting the tears as Hugo was there with us but at the same time, I was googling the condition to find out everything possible as I just couldn’t get my words out to ask more questions. We were ushered into a ward to wait for Hugo to have his bloods taken and I literally couldn’t hold it in any longer. I cried, lots. I pulled myself together for Hugo’s sake and went to the toilet. I then completely broke down, I don’t think I’ve ever cried with such pain in my entire life.
To be told your child is poorly is one thing. To be told it is an incurable condition which will take your child’s life at the age of 20 is incomprehensible. The next 24 hours were the worst of my life. I genuinely didn’t believe I had the strength to get through it. But, I had to. I had to force myself through those 24 hours for the sake of my boys. I didn’t sleep, I didn’t eat, and at every single point that the children couldn’t see me, I sobbed my heart out.