What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Tuesday, 9 April 2013

Diagnosis 2008

"I think it's something genetic. I'd say you're lucky your second son is ok" she says. I look at the neurologist in horror.

"Genetic? That's not really the sort of thing I want to hear at the moment" I reply, and point at my belly. I explain that despite having had my tubes tied earlier that year, I am about 10 weeks pregnant with our very unplanned third child.

We’re still reeling from the shock of another pregnancy after we have gone to such lengths to ensure we have no more kids – and honestly, I'm still not sure I want to go ahead with this. And now here is a genetic disability to contemplate?

The neuro suggests we have an MRI, a spinal puncture, and various metabolic tests on Beaver to see if we can work out what causes his disability. Then she suggests that I can have a CVS for this baby, and if we find something for Beaver, we can test baby three for the same.

I explain that we've done all those tests on the boy and they showed nothing, We are no closer to understanding what causes Beaver's disability, and the CVS comes back all clear. It also tells us that after two boys, we have now created a girl.

I am slowly recovering from the initial shock of this pregnancy. I was so set in my mind that our family was complete with two kids, that I found it hard to comprehend that we would do the whole baby thing again. Still, we are getting to grips with the idea, and I decided that just because her arrival would be inconvenient is not enough reason to terminate a life. So another baby it will be.

Arrangements are made for a bigger car (Beaver's wheelchair and a pram won't fit in a family sedan), plans are drawn up for an extension to the house, and the midwife is booked for another homebirth – and after an exhausting pregnancy, a beautiful baby girl is born in a relaxed water birth in the kitchen. Despite our initial hesitations in having this baby, we instantly adore her, and settle into a busy yet happy routine as a family of five. We decide to give our little girl (blog name BooBoo) an old English name meaning "strong willed". We like that for a girl, and given the manner of her conception, we reason she must indeed have strong will to be here.

Everyone comments on how beautiful and petite BooBoo is, and how she looks like Beaver – although Possum is quick to point out that her hair is the same colour as his. She is a gentle natured baby, and seems to make our family complete. People comment on her alertness and the strong way in which she lifts her head up. We laugh and say "yes, she doesn’t' have what Beaver has, since he was a very floppy baby.

But then, very gradually, we notice that BooBoo seems more tense than strong. Richard and I quietly start to wonder why she's so placid, and why she's not really rolling over yet. We keep saying we should check the developmental milestones – we gave away all our baby books after I had my tubes tied, and should really buy a new one. Still, we put the niggling doubt to the back of our mind.

Until one day when BooBoo is nearly 6 months, the accumulated doubt solidifies like a hard rock in my stomach. I find it difficult to concentrate. I have looked up developmental milestones on the internet – and she's not achieving them. I have looked up newborn reflexes and baby weight and head circumference, and again, she's underperforming. My mind races over the possible implications as I take Beaver to his therapy at The Spastic Centre. I barely register what the boys are fighting about in the back of the car.

I don’t' know why, but today is the day I need to face this, I just need answers.

I walk up to the therapist and ambush her. "Please, can you be honest with me, does BooBoo have the same as Beaver?"

She turns towards me with tears in her eyes - and there I have my answer, even before she confesses that she had been watching BooBoo and states that "yes, there is certainly cause for concern" I know she add the last line because officially she's not allowed to diagnose, and really, her sentence stops after the word "yes".

I pick up Possum in a daze, and play with him and BooBoo while Beaver gets his therapy. On the way home, I can't hold it any longer, I have to pull the car over. My head buzzes, my face feels like it's on fire, and I cry and cry and cry. This can't be happening, How are we going to cope with this?

Why does BooBoo have to have it too?


Susan, Mum to Molly said...

Beautifully written Heike.

It must have been not long after then that I first met you...

Inspirational then, and inspirational now.

What an amazing job you are doing for your kids, and all kids living with disability in Australia.

Thank you,


Anonymous said...

What another amazing post I must say, if you don't mind me asking, is there a reason why you say that your children have cerebral palsy as opposed to calling it hereditary spastic paraplegia? This is just because as far as I know, they are two completely separate conditions.