I often think back to my pregnancy with Cameron, sometimes with critical thoughts of how those nine months were and did I do anything wrong to make my baby how he is today.
We are our own worst enemies and although professionals can tell you
"It wasn’t anything you did!"
"There are genetic elements at play!"
"You can’t change what is!"
...It doesn’t make the thoughts of “what if” or the pain go away.
It is four years since our diagnosis and as a whole we are in such a better place as a family unit.
Cameron is doing well at school and surprising us at every turn; work is great; we have bought our first home and we are even picking out a new car... But there’s something missing.
My thoughts have moved on now from the guilt of my first pregnancy to the thoughts of "should I put the family through another?"
It’s a thought that I have postponed over the years for one reason or another.
My biological clock is now ticking so to speak; society tells me that past thirty I am a mature mother and my eggs are depreciating.
I would like to have another child so that Cameron has a sibling; as the eldest of five siblings myself. More selfishly though to satisfy my maternal urges.
There is however a strong force at play; holding me back, my very own ball and chain.
You see in addition to autism my son has a genetic condition with his eyes, Macular Dystrophy with signs of Retinitis Pigmentosa (RP).
My brothers each have these conditions to a degree; one is just manifested in severe short sightedness but the other is in a degenerative form that by Cameron’s age meant he was already blind in one eye.
Cameron is lucky that his so far do not show signs of any degeneration or that the RP elements are microscopic.
We are waiting for genetic counselling to see if this is an X linked condition, as this means there is yet potentially another thing for me to consider should I choose to have another child.
I have written in a previous blog that if you have a child with autism then there is a 1 in 20 or approx 5% chance that your second child with be on the spectrum.
The eye condition if confirmed to be an X linked recessive condition; for me means that each pregnancy also has a 1 in 4 risk of having another affected son.
So when I am asked “are you or when are you having another”; my mind just freezes, my palms go sweaty, my heart aches.
The answer is just not that simple and I lie... a lot! I play it down that I actually don’t want another child.
If you ask my husband he would tell you that I would have another child now, this very second and he is not wrong.
Surely then this should be my instinctive and instant response then – yes/now!!
The reality though is the longer I think; the longer I have the chance to list the things to talk myself out of it, to reel off the excuses as to why this is a bad idea.
- Would Cameron cope with such a big change to his routine
- Would I cope becoming a mother with an almost 10 year age gap in children?
- The house isn’t big enough, we would need to move!
- What if it’s another boy?
- Will the baby be ok?
- Could I mentally cope with another potential disability?
In short no; I know I wouldn’t cope, I know that I don’t have the extra energy to do what I do – doubled.
I selfishly don’t want the heartache of another set of diagnosis days, internet researches, swatting up on medical jargon.
Dare I say without being frowned upon by society that my heart wants a typical child?
I take to the internet and I search for percentage rates of genetic conditions being passed onto my offspring.
I’m not much of a gambling person, and yet here I am trying to make a decision to gamble with potentially another of my most prized possessions.
So...... what are the odds? Do I consider the odds to be against me at a 1: 4 or for me with a 3:4.
Painfully – no one knows!