Mitochondrial Disease

When you have a child with a life-limiting illness and young life expectancy there’s a lot of emotion and heartache around the diagnosis. I’ve never hidden the fact I went through a phase of grief. When parents contact me now having received a similar diagnosis, I always tell them to allow the grief in if it’s there. I believe it is part of the process. For me it was important to allow myself time to feel sad because that’s ok. I think that other people in our situation feel sad because you hear a lot “your child ‘won’t’ be able to do this or that”. As with everything, if it’s put in a negative way you can only think of the negatives. I spent a long time always seeing the things that he wouldn’t be able to do, the things that other families took for granted which would always be missing from our lives.

We are now (nearly) three years on from his diagnosis and, thankfully, he is a determined little boy and seems to be driven by his peers’ achievements. He laughs now. He’s such a happy, cheeky little boy. Although we don’t push him, he does want to take steps and walk. Even though we were told he would never walk. He does walk. He uses a walking frame, but he does walk. He wants his freedom, to be able to explore his environment and to have a say in where he goes. Which. is. HUGE! 

You see, when we received our son’s prognosis and we were told a list of what he ‘won’t’ or would be ‘unlikely’ to achieve but it was never explained to us what our child would accomplish, and that he would accomplish so much. Nobody told us that when they said he would never be able to walk that they meant unaided but there is lots of amazing equipment out there. That actually he would walk but it would just look a bit different and, actually, he would learn to successfully navigate his world. They were right in that he wouldn’t (can’t) talk but I took that as he wouldn’t be able to communicate full stop. Nobody told me that he would be extremely communicative. That he would find his index finger and use it to dictate where he wants to go, what he wants to watch on TV or what he wants to eat. Or that he could bang his hand on the table yelling ‘mo mo mo’ when he wanted more of something.

Nobody told us that his face would light up when he heard music or that certain songs would get him really animated. Or that he would love books and want to read the same ones over and over. Nobody told me that he would love The Gruffalo, Thomas or Something Special and always laugh at certain parts of the same episodes. Or that he would love cooking and even learn the sign to say he wants to cook. Nobody told me that he would go to nursery and have some normality in his life, and he would love it.

Or even that he could say ‘I love you’ with just his eyes and when he decided he was going to hug it wouldn’t be over until he decided and that it would be the best thing ever.

So many beautiful moments that I didn’t know would come because I was consumed with the grief of what wouldn’t. Nobody told me that he would teach me so much about life, about perspective and about myself. That he would make me grow and learn to look at things differently. Most importantly, at that diagnosis appointment, nobody told me that our son is utterly incredible, that he would achieve great things only in a slightly different way, and that he had such capability. 

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