Additional Needs
Age Appropriate
by Jodi Shenal
on 26th April, 2024
The first anniversary
Posted by Emma Louise Cheetham on 17th October 2019 Additional Needs, Advice & Support, Disabilities
Sunday 20th October 2019 will mark one year since my little warrior was brought into this world with no heartbeat.
After his medical team worked on him for an unbelievable 26 minutes he was brought to life, but at a huge cost.
Jaxon was left with global brain damage after his diagnosis with grade three Hypoxic Ischemic Encephalopathy.
After a rollercoaster of a year that has included almost six months spent in hospital, numerous diagnoses and endless therapies, it’s now seemingly obvious that Jaxon will not come through his traumatic birth unscathed and whilst we’re still unsure of what the future holds, it’s clear that there are a million and one challenges that lie ahead.
So how do we cope with the first anniversary?
Of course, the first anniversary is Jaxon’s first birthday. It shouldn’t be seen as a negative, it shouldn’t fill me with dread or sadness. It should be an exciting time for all the family.
I shouldn’t be looking back to a year ago and be filled with such overwhelming emotion that I can barely function.
But I am.
Getting through the days leading up to this first anniversary is more challenging than I’d ever anticipated.
The trauma I suffered at the time that I’ve worked so hard to keep locked away in a box is starting to break free and I’m left feeling extremely vulnerable and exposed in the most normal of circumstances.
Trying to work out how best to celebrate the fact that Jaxon smashes through every single odd that was laid at his door in those first few days of life, the odds like he continues to beat and the poor prognosis that he continues to defy, is proving extremely tough.
His first birthday is his day and his alone.
It’s his special day, a day that we weren’t sure he’d even live to see so it has to be about him, but as his mother, it’s impossible to completely detach myself from those powerful and difficult emotions to enable myself to celebrate the fact that he is here, he is defying odds and he is amazing.
Jaxon is far from developing like a typical one year old.
He doesn’t really react to the world around him and it’s incredibly tough to work out what his likes and dislikes are. He doesn’t have a favourite toy or a favourite TV programme.
His smiles and cries are so few and far between that it can sometimes feel like I’m trying to read and understand a book in a completely different language.
So what do I do?
I could stay in bed, I could let the sadness consume me and I could just watch the day pass by as if it were just another normal day.
Or I could get up, do something fun, make memories. I could make sure that we embrace the fact that a year on, despite every single hurdle and challenge we’ve encountered, Jaxon is here.
It won’t be the day I’d imagined it would be this time last year before he entered the world.
It won’t be a birthday party, a cake smash photo shoot or a great deal of presents that Jaxon will take less interest in than he will the wrapping paper.
It will however be a special day. A day to celebrate. Because every day we have with Jaxon is.
I’ll probably cry. I imagine I’ll take time to reflect and remember how life a year ago was flipped on it’s head faster than I could’ve ever anticipated.
But then I’ll look at the amazing tiny human that is here in my life and I’ll be proud that he fought to stay, I’ll continue to be immensely thankful to every single doctor and nurse that worked tirelessly to save my baby and more importantly, I’ll feel incredibly lucky that I didn’t have to say goodbye before I even had the chance to properly say hello.
