Having a Brother with a Disability

Last week Jalen said to me that he always wondered what it would be like to have a brother who wasn't disabled, and now that Noah isn't here, he knows that it's not good at all.   Our life is so different now without Noah.  We can just jump in the car and go somewhere without thinking twice.  We don't have to worry about seizures, or sickness, or meds or feeds, or suctioning or toileting, or wheelchair access. 

But Jay agreed that he would prefer to have all of that back, if Noah could still be here with us.  I knew it wasn't always easy for Jay because Noah needed so much care, and after he said that, I joked with him that he should do a blog post for me.  He said that he would like to, and this is what he wrote:

Ever since I was younger I've always wondered what it would be like to have a brother who wasn't disabled. And now I know.  It sucks.
I feel like Noah has made me who I am today, he taught me to accept people for who they are and to be more caring. From a very early age I've always loved Noah and he was my only brother for a while. 

 

 I remember on my first day of school I came home and went up to Noah and asked "Did you miss me Noah?" All he did was smile! His smiles were the greatest things in my opinion it would lighten up my day and makes everything so much better, sadly he didn't do it as much as he was getting older.

People would find Noah so interesting or feel sorry for us but I just found him normal and just treated him like anyone else and like he could talk and walk, but at times I wished he wasn't disabled so I could have a brother closer to my age to hang out with and play with.


 
A few month before Noah died I asked Mum how much longer do you think Noah is going to be around for? She said "Maybe a little bit longer"I said to her "I think he is going to die soon" then a few months later Noah was in hospital for the final time.
The day Noah died, Mum and Dad took me and the boys and told us Noah would be passing away.  This was the biggest shock for me and I thought he was going to be fine as he has been with all his other trips to the hospital. I was so upset and cried for ages just looking at the clock all day. When the time came it was the hardest thing for me to say one last goodbye to him  When he passed away it felt peaceful in the room and I was happy for him to be out of pain.

I'm so grateful to have Noah as my brother for all the blessings, life lessons and memories he has brought me and my family, and I want to make him proud during my life time.