Quote: "We had our first beautiful, happy, perfect daughter and so began the biggest learning curve of our lives."
Some parents are worried about passing on their frizzy hair, or an awkwardly placed mole, but I'd have given anything to have those genetic traits as my only concern!
You see, I still go to bed each night and wake up each morning and though I don't consciously say it to myself, I get this regular sense of 'I have a child! ME!... Oh wait, I have TWO children... Goodness me'.
As a child, I had the same aspirations and fantasies that every little girl has about one day being a mummy and what I might call my children, what delightful styles of clothing they will or won't wear, where we will go together on holiday, and so the dream went on. But as I grew up never really having that 'young love' that most kids encounter in school, a big disappointed part of me was seriously let down... By myself for not being a particularly confident child growing up, and by genetics for lumbering me with this awkward, annoying, frustrating and downright unfair disease. Sob sob, right? Wrong (sort of).
Fast forward a few years and I meet a lovely, intelligent, dedicated and caring person who I know I want to have children with. We became friends first at university where we were both studying for a degree in Broadcasting and some time later decided we wanted to be together. It never occurred to my partner, Tom, that we wouldn't have children because of my disability, and neither did I, I just didn't think I'd ever meet anyone who wanted to have children with me! I knew my neurological disease was hereditary and so I was always worried about people's opinions, reactions and comments about any children we had together. I didn't know what the inheritance pattern was or could be at that point, and for a while I read a lot about PGD (pre-implantation genetic diagnosis) as ideally, I'd stop CMT in its tracks and not pass it on to any of my children.
I'm the first one in my family to have been diagnosed with having CMT from a very young age, when my mum noticed my feet looking different when I ran as a toddler. My maternal grandmother was diagnosed after I was, when she started suffering from muscle weakness but of course at a much later age. Nobody ever really queried why my case was so much more severe and earlier to begin, and how this could've happened. So when it was discovered that I had in fact inherited a fault on a particular gene (Mitofusin 2) from both sides of my family, we were pretty stunned. The chances of this happening are so slim so it really was a surprise. I don't blame anyone for my inheritance of this condition, but when we became better informed about the genetics of my disease, we had already had our first daughter. PGD wasn't an option anyway so there is no way that I cannot pass on one of my gene faults to my children. I can only hope that they just carry the disease like my parents do and not actually suffer any symptoms.
So what then
We had our first beautiful, happy, perfect daughter and so began the biggest learning curve of our lives. Along with all the things most new parents get stumped by - 'oh my god I cannot survive on such little sleep', 'TEETH! Argh! Who needs them anyway, why can't babies just survive on a liquid diet for at least 5 years!', 'yes, that's right, my child has chosen the canned goods as the supermarket meltdown location this week, kindly move along and take your gawking eyeballs with you'. Nothing out of the ordinary there, except when your child is having said tantrum, and instead of picking them up and traipsing out with a screaming monster under your arm, you instead have to try your hardest to keep any mental strength you have left to verbally coax your child away from the tomato soup stack, because you cannot pick them up. This is the moment where having a pet (or child) on a lead and preferably muzzled seems like a terrific idea. It is beyond frustrating and disheartening to know that the supermarket gawkers aren't just questioning why you can't control your child's mood, they are wondering if you, personally, having a child was a good idea. Then there's the pity, ah the pitiful looks of 'aw, so sad, she can't look after her own kid'.
What better way to shock them, then, than having ANOTHER child (beautiful, happy, perfect, yes yes yes) and wheeling yourself through the clothing aisle with a baby lying on a cushion in front of you, boob out, breastfeeding on the move? These days I try not to focus on the starers, as much as I also hate knowing what they might be thinking, I welcome their wondering of 'how do I feel about that', as they are made fully aware that indeed, disabled people do have children. I have difficult days, difficult beyond belief. But it wouldn't be parenting without a bit of a challenge, would it
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