Just like that he’s 18 month’s old. Running rings around us and babbling his head off.
For some reason this milestone has hit me hard, maybe because there were whispers of lockdown number 3 or because he was my first’s and lasts of a very different kind of story or because it didn’t go how I imagined.
Falling pregnant with Lydia was met with love and congratulations even from the watchful eye of my consultant and it was wonderful because even when I became poorly it wasn’t seen as a complete disaster or people were piping up saying they were critically ill during pregnancy and there was a sense of community, women in it together, everyone had yours and your babies back through it all, as much as it was a living nightmare there was support.
Then there was our tiny surprise. This time round however I was already on oxygen and had a bad pregnancy story over my head like a black cloud. This time I informed my consultant, as is required of me, but I was met with ‘you can’t keep it, you could die this time’ or ‘what if it has the same genetic mutation’.
This has only recently sunk in but doctors really believe that a genetic mutation is a reason to end a life? Like being disabled means there is no reason to live?
They booked me in for an abortion at 10 weeks. I remember refusing to make the phone call back to finalise it and I sat on the sofa with my babies at the moment I was ment to be at the clinic and knew I had made the right choice. I was frequently reminded through the pregnancy that I had made a silly choice but the longer the pregnancy went in and the healthier I stayed they did drop it a bit.
What about Mr. And Mrs. Twickershank (I reckon that sounds fancier in my head) who go and have a ‘healthy’ baby and they dote over his scan and tiny little features only in 20 years time their ‘healthy’ baby becomes a modern day Jack the ripper, what happens then? I’m still lead to believe that I would’ve made the right decision? Would ending my childs life have seemed appropriate then?
Had I have known about SAVI and the genetic carrying of it before I fell pregnant with Lydia and my doctors had the same stance, If I wasn’t strong enough the world might have one less SAVI sufferer (trust me for the suffering side I would take it back from her tomorrow) but they would also be missing out on quite the character. She will educate this world on disability as she isn’t shy, she doesn’t see the shame that the world tries to instil in us and if one day she turns around to me and says she will have a kid even with the 50/50 chance then I will be there for her!
I hate that I felt so much shame that for the first 16 weeks of my final babies life I kept it so hidden and even then I only told immediate family because A. It would’ve been rude even though we barely saw most of them and B. Typically that weekend we were going to see my extended family and I had a visible bump (It was quite a lush little bump).
I wish I could say the shame stopped, the support came about from family more than I imagined but EVERY time we went for a scan the baby consultant would bang on about proper contraception after this baby as there is a good chance of carring a SAVI baby… again like that really is the worst trait in a human !
All I know is that I’m 100% proud of my children’s lives and if there’s a chance either of them would become disability advocates then I’ve done my job. There’s no dis- ability just different abilities!
littlelifeofalittleme 