Julie Helen: 'I feel lucky that we have the life we have together'

I’m sitting in our kitchen, watching the frost glisten in the fields. Hot tea is like a warm hug after the school run, and I feel properly held by the new wheelchair encasing my back like no aid ever has before.

On this morning, it is very easy to cast my mind back exactly six years to a similarly frosty morning when Ricky was born. There was tea and a boiled egg before fasting after breakfast that day, and I remember being nervous and scared but so excited to think we had made it.

Each year on Ricky’s birthday, there is a lovely feeling that I get, that we made it. We made it through another year together. Between five and six, he has had a real burst of independence. He wants to do things for himself, but more than wanting to, he can follow through and do most of the things he needs to do.

He wants to be able to do everything on the first go and finds it challenging if things don’t work out, but that’s all part of the process of growing up.

I have also noticed in recent weeks that he is more acutely aware that cerebral palsy causes me pain than ever before, and he asks about it or tries to make sure he doesn’t hurt me. He has said a few times that he wishes I didn’t have cerebral palsy and has asked me if I wish I didn’t have it.

That line of questioning pierces my heart because it happens at random times when he’s been away from me, which makes me wonder what someone said or did to make him feel that way, or did I do or say something to make him think about it. I explain to him that I have never wanted to be somebody else, and if I didn’t have cerebral palsy, I wouldn’t be me, I’d be someone else. I explain too that I don’t know what it feels like not to have cerebral palsy and the pain or annoying things that come with it, and I feel lucky that we have the life we have together.

When I say all those things, I mean them, and I never tell him not to say how he feels because cerebral palsy will always have a significant impact on his life as well as mine.

I notice his frustration when there’s a lack of wheelchair accessibility when we are out and about. He always comments on how I get stressed when we are going somewhere new. I didn’t realise I became stressed until he pointed it out one day and said we can take our time.

I think it is important that I shoulder most of the worry around accessibility for as long as we can manage. Ricky gets to be a kid first and foremost. Having said this, we recently got a new boot hoist for my car as I was really struggling to get the wheelchair in and out without hurting myself and I had got properly stuck a few times, so I needed a new solution. The new hoist relies on motors rather than my strength so that also means that Ricky can manage to operate it like a pro, even though everything is taller and bigger than his small frame. He is knacky and nifty and has a great way of figuring tricky things out.

He gets great satisfaction from helping and being able to do things other kids might not manage as well as he can.

Happy birthday to my not so small man. You make my world a magical place.