Parenting, regardless of your health, is always a challenge. Throw some disability in there, however, and it comes almost essential to be at least 25% gin.
When Little Crafter was little enough to be in a buggy, I perfected the art of using a crutch in one hand and steering with the other. As you can imagine, this put a lot of strain on my wrist, but also meant the muscles in my arm were quite impressive. When I was in a wheelchair, I would use a sling. When he was old enough for me to decide to get an electric wheelchair, we both had to learn how to make this work full time, as my health had declined so that I didn’t have a choice. Little Crafter perfected this wonderful ‘tantrum’ where he would just lay on the floor, looking at me, silent, knowing I could do sod all about the fact he was on the floor.
We learned how to walk together with my chair, Little Crafter learned not to walk directly in front of the wheels – and still teaches this lesson to any friends that might be coming over to play. There were a lot of squashed feet in the early days, I don’t feel ashamed of admitting. None deliberate, obviously, but if you stop in front of an electric wheelchair without calculating for stopping room, you get a bit squished. This was one of the most frustrating periods for us both, but within a few weeks we found our rhythm, and we were working seamlessly. We perfected getting on and off buses, and Little Crafter found the advantage of being able to curl up on my knee for cuddles during the bus journey.
I can type all of this with a smile because I’m still proud of the fact we managed to make it work. However it doesn’t distract from the fact that being a disabled parent is hard as hell.
There’s timing medical appointments. Perfecting your “I’m fine sweetheart” smile even when your body and mind are screaming. Having to let down your children time and again by not being well enough. Trying to make sure they have a normal childhood whilst balancing your own health. Finding places to keep medications where they are out of reach but don’t break you by getting them. Working out how much you tell your child so they understand and how little so you don’t terrify them.
But all of this is doable. You learn little tricks and tips, you have to give yourself a bit of a break. As you learn about the new you as a parent, and this new little person you will be ticking along with, you work out how to make things work for you both. Gadgets and gizmos a plenty come in to play. Doing things in a less conventional manner that become your own normal. And that’s just it, it’s finding your own new normal, and making it work.
It’s possible. It’s hard. But it’s possible.