I’ve just been watching the news. It’s a tough watch. Almost 18 months have passed since we ‘lost’ our precious Elijah. Only 18 months ago we were wrestling with our heads and our hearts over what was the ‘right thing’ to do for our precious baby boy. It wasn’t too long ago that we were told a hospital, (which I will not name because that doesn’t matter), wouldn’t consider a heart transplant for our beautiful son because of his assumed mitochondrial disease, (at that stage they didn’t know for sure that Elijah even had a mitochondrial disease!!) Initially when I was told that, I was furious, I asked could I pay for the transplant myself? Such was my naivety about such a huge operation. I felt it was so wrong that my darling boy would be denied the treatment that he needed. How dare they!
My heart said how dare they – my head tried to ask what’s best for Elijah?
The heart and the head they have a wrestle every day, don’t they? Right now on the news it talks of how parents want the law to change so that they might have more say/rights over medically what might happen to their child ….. yet seconds later there is talk of a man who wants to be allowed to die with dignity, because his life is so painful and he is so miserable he just wants to die. I find it hard to understand how one news report can condemn a hospital for not allowing a man to die with dignity, yet in the same news report condemn a hospital for wanting to allow a baby to die with dignity. I know it’s not as black and white perhaps as this …. and that’s why I think it is important for there to be a mediator as it were, someone who can look at these cases without feelings tipping the scales.
Our precious little Elijah was denied a heart transplant …. I cannot allow my thoughts to go to the ‘what ifs’ and the ‘might have beens’ – it’s not helpful for anyone. I’ve said before Elijah had a fault in his DNA …. his little body was just not made to stay here for long. But I do know Elijah enjoyed a life to the full. He brought joy, he experienced joy and he passed away surrounded by people with hearts full of love and joy and peace.
I have no answers. I have no ‘right or wrong’. I cannot speak on behalf of anyone else.
All I have is my faith, my hope and my joy.
Faith that my God always has a plan.
Faith that my God planned every single one of my Elijah’s days.
Faith that Elijah isn’t ‘lost’ or ‘gone’ or dead …. no –
Faith that he lives at a different address – heaven.
I have ….
Hope that one day Elijah will forever be in my arms.
Hope that there is so much more than this.
Hope that the best is yet to come.
And a joy that gives me strength to endure the hell that it is to lose a child.