It’s the small things that get me so unexpectedly. Like when I’m about to get in the shower and I think back to all the hours I spent sat in the shower room with him, steaming the place out because I thought his cough was because of a bad cold and it would help him.
Or I go in the spare room for something and I think back to all the nights I spent sleeping in the spare bed with him because I couldn’t bear the thought of him sleeping on his own and choking on his vomit because his reflux was so unbelievably bad.
Or we go to bed and there’s no anxiety about the lack of sleep we’re all about to get, or if tonight is another night we call for an ambulance because he can’t breathe.
The thing is, I’d have all of that back in a heartbeat because it would mean he’s still here with me. Having said that, having him still here would mean he’s suffering.
How do you find the happy medium in this scenario? It’s a pretty heartbreaking situation to be in.
I guarantee that anybody who has loved and lost someone suffering with Rett Syndrome has felt this way at some point. My heart aches for every child who has lost their fight and for every parent who has to carry on life without them.
Despite the seemingly negative start to this post, I’d like to try and carry on with a more positive vibe.
As we have a 5 year old daughter who is obsessed with reading – especially the Dr. Seuss series, we found a quote that grabbed our heads and hearts at the same time; “Don’t Cry Because It’s Over, Smile Because It Happened”.
There are days when this is hard to live by but in general it gets us through most days.
You see the thing is, Jude was 22 months old when he died but, as tragic as this is, the fact is that we were lucky to have had him at all.
Most of you know Rett as a “girls syndrome” but some of you know this is not true. Boys who make it through the pregnancy are few and far between which makes them even more special.
We knew from day one that he was a fighter but it was only 12 days before his death that we got the diagnosis of Rett Syndrome. It was a bitter sweet feeling when we were told. After almost 2 years of knowing something wasn’t right, but not one person involved with Jude’s care knowing what was wrong, finally having an answer meant that we had a reason.
There was a reason he had hypotonia. There was a reason he had severe reflux. There was a reason he had such a persistent cough. There was a reason his oxygen levels were always on the lower side. There was a reason he couldn’t sit up, or roll over, or speak. There was a reason that every blood test, scan, and biopsy came back clear.
We had fought with him for almost 2 years, kidding ourselves that he was getting better and stronger. Don’t get me wrong, he was definitely stronger at times, but it didn’t take much to knock him back. A simple common cold could put him in hospital.
Looking back we can now see that in actual fact we had an almost 2-year old who had special needs. At the time we were so focused on seeing the positives that we dismissed the negatives when we could.
But Jude was a fighter right until the end. That’s the spirit of a child with Rett Syndrome – they fight. Jude taught us to fight with him and we are stronger for it, but him no longer being here with us makes the fight so much harder.
Our focus now is to carry on Jude’s story and help raise awareness of Rett Syndrome. He will live on through the many hearts and lives of the people who knew him, and also through us sharing and supporting other people’s stories and experiences too.
This post was supposed to be about Mother’s Day without Jude, but if I think about it too hard, the pain becomes unbearable. I’m still a mother to Mathilde, and I’ll always be a mother to Jude. I don’t need a one-off day to remember that.
My heart is broken but also full of love for what we had.
I will not cry because it’s over, I will smile because it happened x