My amazing son, who I'll call J, is four, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...
We have two and a half weeks to go now until J's heart operation. It's a funny thing to have in the diary.
Here are some of the ways it's affecting me.
I want to say how it's affecting J – but that's just it; he doesn't know about it yet. With the help of a specialist cardiac psychologist for children and two play specialists, we are planning to tell him about the operation in a very careful way.
First, we have for a few weeks now been playing with doctors' kits and reading books about going to hospital and also about the body and in particular the heart. J is visited weekly at home by a play therapist who brings real medical equipment like oxygen masks, stethoscopes and cannulas for him to examine, as well as bags of toy ambulances and hospitals.
Next, this weekend, we are going to tell him that his heart isn't working perfectly and needs to be fixed. I'm planning to use the analogy of an engine which needs to go to the garage.
Then, in 10 days, we are going to visit Great Ormond Street, just to play and look around, so that J gets familiar with the wards and meets his play therapist and psychologist there. Just before this visit, we plan to tell J that we are going to look at the hospital where he will have his heart fixed.
Finally, about four days before the surgery, we will tell him that we are going to have the operation to fix his heart this week and tell him a bit more about it – going to sleep, and the fact it may hurt (I feel it's essential to be honest so that J knows he can trust us to tell him the truth).
All this planning, and the fact J doesn't know yet what is about to happen, is making me very emotional. I find it hard not to cry whenever I talk about the surgery.
Seeing him running around playing, so innocent, is heart-breaking, as is looking at his unmarked chest which will soon have a lifelong scar.
It must be hard for our close family too.
There is a lot of support from professionals before open heart surgery which we didn't get offered before J's previous operations. There are letters, leaflets, charities, phone calls - all giving us information and help.
This worried me for a while. J has had major surgery before – on his stomach, as a baby – and we were pretty much just left to go through it and get over it. Did all the fuss this time mean that this operation was going to be exponentially worse? Of course open heart surgery is a big thing, but J has been in intensive care before without this level of support around us.
Thankfully the hospital has assured me that we simply fell through the net with the last big surgery. The help was there but we weren't offered it. Which is sad, too.
Here are some of the organisations, books and online films I've been discovering to help prepare a young child for an operation (in particular, heart surgery, but also general surgery). There is a real lack of anything geared towards pre-schoolers, unfortunately, especially any suitable films or cartoons.
Stories for children
Monkey has an Operation; Monkey has a Blood Test; Monkey has an Injection
Videos for children
Play for children
Toy hospital(this is the one our play therapist brings to our house)
Help for parents
Information and for contacting other families
For previous Secret Diaries of a Special Needs Mum, click here.