Last week it was 6 years since Noah passed away. Facebook memories had been popping up every day which have been hard to read. I had posted that he was having a good day, and I really didn't think he was going to pass away until the night before it happened.
It's actually really hard to imagine what life would be like if he were still here. For ten years my life was consumed with looking after him, and keeping him well. My days and nights were full of appointments, giving medication, dressing, feeding, suctioning, re-positioning, bathing, dealing with seizures, toileting and cuddling. I still remember when he died, that I just couldn't believe what life was like for everyone who didn't have a disabled child.
We suddenly had so much time on our hands. Everyone thinks they are busy, but no one really understands what busy (and exhausted) means unless you have a child with a severe disability. It just consumes your whole life - physically, mentally and financially.
My life certainly is busy now, but it's nothing compared to before. I can at least sit down for a little while and not have to worry about the time. My boys can be upset or grumpy, but that's nothing compared to having Noah screaming from cerebral irritation for months on end. The boys can get sick, but they're over it quickly and don't end up in hospital for weeks at a time.
There is a lot of things that I don't miss. But there is so much I do miss. People say children with disabilities are 'special' but we really felt like Noah was. I miss Aaron and I working as a team, to make sure that Noah had the best life possible. I miss how he made us appreciate the little things more, like how just Noah smiling or having a good day, could make our whole week. I miss cuddling him on the couch at night, and when we would rub his leg and he would stretch back and smile.
It's really hard to imagine going back to that life. My life is so different now. I learnt a lot while Noah was here, and I've also learnt a lot since he passed away. I've learnt that there's some amazing people in this world who will help you, even if they don't know you. I've learnt that even if you feel like you can't do anything to help someone, that small things really do make a difference.
I've also learnt that most people don't hang around, after the dust settles. I've come to realise that unless you've experienced grief and trauma yourself, you really don't know how long it takes for someone to get 'over it', as there is no getting over it. It changes, and grief doesn't consume you as much, but you are never over it.
I've learnt that it doesn't matter how many blog readers, followers, friends on Facebook, likes or comments you have. None of that matters, unless you have a true connection and friendship with someone. It's been 6 years and to be honest I've never felt so alone. I've met some beautiful people since Noah and Aaron passed away, but I've also learnt who my true friends are, and I'm very grateful for them. I hang out for my regular dinner with the girls, and catching up with a few good friends as they keep me sane.
On the anniversary of Noah passing away, I wanted to keep busy and do something fun with the boys. Unfortunately Jay had to work, so Harri, Kobe and I went to the raspberry farm, Marakoopa Caves, Alum Cliffs, the Honey Farm then to the cemetery.