The double-edged sword of my son’s diagnosis

By Kelly Wilton

We lost a dear family member recently, and when you lose someone in their later years of life it can feel so bitter-sweet; there’s the grief associated with them leaving but also the joy of knowing they lived a full life for the best part of it.

As as special needs mum, I am familiar with grief and its double edged sword. I love my child just the way he is. Yet he is the way he is because of a rare neurological condition caused by an acquired brain injury that has impacted and changed every element of his life.

He was only a baby when this happened; as he has grown up, we have grown with him. We have all adapted to his differences but none as fiercely as him.

The grief that I have experienced over his diagnosis has been my catalyst for change and a different outlook on life. If this had never happened – the event in his young life – I wouldn’t be living the life I have now. My son brings us so much joy by just simply living in the moment, seizing the day and just being grateful for ‘now’. The grief I experience is more because of the ‘what if’ scenarios, the unknowns and the anxiety I have surrounding my unanswered questions.

There can often be misconceptions from people who don’t truly understand what we go through as a family. What people really need to know is that we love Mikey for who he is just like any other parent and their child. I no longer grieve the child he may have been, because now I have accepted he is the child he is meant to be, and I am the person I am meant to be.

The word ‘grief’ has a lot of negativity surrounding it – it’s loaded with the feeling that to live with it, is a burden. I am learning however, that if you think of grief as less of a burden, but something different – your catalyst for change – and embrace it as that, it may just help you with the here and now, and be the change you needed all along.

As much as it is hard to grasp at times there really are no guarantees in life. We simply do have to live each day and treasure it.

Follow more of Kelly & Mikey Danger’s journey at Loving Danger.   Their patient page for HHE families can be found at: www.rareconnect.org/en