If there was a way you could take a picture of the mind of a parent whose child has suffered a hypoxic ischemic brain injury, I imagine it would be quite a remarkably fascinating image.
There would be so much colour that represents hope in amongst so much darkness that represents the truly heartbreaking realities HIE parents have to deal with. It would be a picture of what I can only describe as beautiful chaos.
There are a million ways I could describe my life since becoming a parent and consequently being thrown into the devastating world of caring for a child with a severe brain injury. Beautifully chaotic sums it up nicely, for the purpose of this blog at least.
It’s beautiful because I am Mummy the most amazing little human who has defied so many odds during his short but incredibly tough life. It’s beautiful because I could’ve lost my child before I even had the chance to get to know him yet he’s still here and I know I’m one of the lucky ones. It’s beautiful because I’ve learnt the real meaning of hope. It’s beautiful because I don’t miss a thing, every single tiny thing my child achieves is a total celebration.
It’s chaotic because I am Mummy to a child with significantly complex medical needs. It’s chaotic because whilst my child needs everything that his peers need, he also needs so much more. It’s chaotic because my child will never hit the big milestones and I have to deal with my overwhelming feelings of sadness of everything we have lost. It’s chaotic because my child will never be the little boy I imagined when I was carrying him and that in turn has resulted in me dealing with a very complex type of grief.
It’s somewhere between anticipatory grief and traumatic grief but with plenty of other different types of grief thrown in for good measure.
With a child who is so severely affected, there comes with it an extremely shortened life expectancy. For us initially, we were told around a year. Now at almost two years old it’s predicted that my child won’t live into adulthood.
With respiratory issues and Epilepsy, there’s a risk that every single day could be his last. Each day feels like another day where I’m walking on eggshells, not sure where I’ll find myself at the end of the day. No parent should have to bury their child and not many parents live their lives expecting that one day this may be their reality. But for me it is.
I feel like I’m currently in a cycle of grief that is so complex it’s almost impossible to articulate it in a way that even the most intensely trained counsellor would be able to understand. Every single day I grieve though. I know that much. As such I spend quite a chunk of my life feeling somewhat anxious and unhappy.
A few weeks ago we had a ramp installed outside our flat. It’s been in the pipeline for a while and I didn’t think much of it. When the workmen came to start the groundwork I felt sad. It was an overwhelming sadness that I couldn’t have predicted. It crippled me for days and I sat alone at home, crying.
I felt like I’d been smashed in the face with a very real picture of how life will look and since then, I’ve struggled to move forward. It took me a while to realise that those feelings I was experiencing, they were feelings of intense grief. Grief for the life we expected when I was pregnant. Grief for the life my child should be experiencing. Grief for the child he should’ve been. Grief for the child he will never be.
This is a lifelong journey that we are on.
I know I’ll have so very many more moments of sadness, anger and grief. Alongside those moments though, there will be glimmers of hope, happiness and reasons to smile.
Hypoxic Ischemic Encephalopathy is something that you’ve probably never heard of unless it’s very sadly happened to somebody you know. It’s so scarcely known about considering the devastation and heartache it brings to families around the world.
There is a lot more known about the conditions that can arise as a result of HIE such as Cerebral Palsy, Epilepsy and Global Developmental Delay to name but a few. Yet HIE remains relatively unspoken about.
I’m a firm believer that knowledge is power, awareness is key and the more we talk and educate, a better place the world will be. I’ll never stop talking about HIE, the incredible highs, the devastating lows and everything in between. If talking about my experiences helps just one person feel a little less alone on their journey, then it’s all been worthwhile.