Additional Needs
Why we need the Special Olympics
by Jodi Shenal
on 3rd May, 2024
HIE Awareness Day
I wanted to take the opportunity to write a bit about HIE (Hypoxic Ischemic encephalopathy) for HIE awareness day.
However, in our little family HIE awareness day is every single day.
Up until New Year’s Day 2019 (the day Joseph was born)- we’d, like many others never even heard of HIE, until during labour our little boy Joseph suffered from a lack of oxygen to the brain, resulting in significant brain damage.
We had no prior knowledge that he may be in distress and we may never find out the specific cause of his brain injury.
I remember being shocked that I had to get most of the information for myself from the internet as there was not much literature readily available in the NICU that wasn’t aimed at premature babies.
I was also surprised given how frequently HIE occurs, that there is only one registered charity for HIE in the UK.
This charity is called Peeps and was set up by a lovely couple in order to support parents where they themselves unfortunately were not.
At the time of Joseph’s birth, Peeps, was very new and has since grown in terms of the support they are able to offer.
I know that they are working hard to ensure that parents beginning their HIE journey are more well informed and supported in the NICU.
In the early days it bothered me a lot that there were so many unanswered questions and uncertainty surrounding the condition that Joseph was in following his birth and what it may mean for his future.
Because of the nature of such an injury and the complexity of the human brain, we were never able to receive clear cut answers from the doctors regarding exactly how this would impact Joe.
All we had to go off is guesses and statistics and we soon realised that a lot of what we were told was of little meaning anyway as Joe would find his own way in the world regardless of what the professionals said.
This wonderful little human of ours continuously surprises not just us but many medical specialists too.
We have accepted that our life is and will most certainly continue to be different to how we had originally planned whilst expecting his arrival.
Some of those differences bring about very mixed emotions; sadness of course at times, that he will likely never achieve what you would expect a child of his age to achieve.
Although over time this has lessened.
It’s difficult seeing him struggle to complete simple tasks and try to meet basic milestones.
But the overriding feelings of pride, awe and amazement we feel when we see him displaying more courage, tenacity and problem solving skills than anyone I have ever known is by far worth all of the worry and uncertainty we have experienced and the challenges that I’m sure are yet to come.
Becoming Joe’s mum has been the most eye opening, terrifying, raw, beautiful, astounding and life altering journey that I have ever been on in my life.
He has shown me what it really is to love and the true meaning of hope.
He is and will always be my little miracle boy and I will be forever thankful that he is here, filling our days with joy, laughter, wonder and fun.
The journey we are on has also brought some incredible people into our lives that we otherwise wouldn’t have ever crossed paths with.
For that I can only be grateful as this little community that we have found ourselves in is one that is full to the brim with love, kindness, support and good humour.
Up until having Joe, I didn’t really know an awful lot about disability and what comes along with it. I guess ignorance is bliss.
It’s so easy to turn a blind eye to difficult, sensitive and emotive subjects such as disability if it doesn’t impact your life directly.
The old me would have probably seen a disabled person or a family like ours and been unsure how to talk to them and worry about saying the wrong thing.
I think that this is the case with a lot of people.
I want to knock that barrier down right now and say; If you see us out somewhere doing our thing please come and say hello. I promise you, we will not be offended if you want to ask questions.
We’re more than happy to educate on the things we have learned and having people take an interest in getting to know about different ways of life is how acceptance and understanding begins.
After all, we live in a most diverse society with a place for everyone.
We are incredibly proud of everything that Joe has worked so hard to overcome and I love to be able to share that with others.
Having a disabled child is not a tragedy, we don’t need people’s pity. We need people to see our children as the lovely little individuals that they are.
Sure, our life has extra challenges but we are blessed with this amazing, brave and bright little boy.
HIE certainly changed our lives in many unexpected ways, but I wouldn’t change it for the world.
In the hospital bubble, with a very poorly baby, bombarded with medical terminology, tests, tubes, beeping machines and somber faces of the doctors, it is difficult to think of your situation as anything but terrifying.
It wasn’t until I plucked up the courage to introduce ourselves to other parents on Facebook support pages that I began to relax and accept that actually this is okay.
We’re going to be okay.
If only I’d known at the beginning that whilst navigating such a turbulent path of worry, fear and uncertainty that we’d find so much joy, gratitude, hope and love along the way.
