Yeah i known the title says it all, this is not going to be a positive blog post. I’m going to be complaining a lot for the next few minutes so if your having a really good day don’t let me spoil it. Close the page and don’t read on.
This week we recieved results from the genetic study that Robin and Lewis have been in for over 3 years, they found no diagnosis for the boys during the study and have offered them a place on a more indepth study called the 100,000 Genomes Project. They did find a gene that commonly causes deafness in both of the boys and also in mine and Ant’s genes. Since none of us have an issues with hearing i guess it’s just an incidental finding but it also worries me that its another example of my crappy genes. I hoped the boys wouldn’t have to worry about anymore ‘dodgy’ genes to be passing on if they ever decide to have their own children. As it stands we have been advised that they should consult a geneticist before any of them think about trying to have children, Elliot is 10 on Tuesday and he said to me yesterday he really wants kids when he is older. At some point I have to have a conversation with him that I don’t want to have. I don’t want to tell him he needs to be much more careful than other teenage boys when the time comes for him to do that ‘stuff’. I should’t even need to be thinking about how to have this conversation yet or how to make him understand the seriousness of what could happen if he had an unplanned pregnancy. What if he meets a wonderful partner and the possibility of not being able to have their own children is a big deal for them. What if the gene lottery is even more unfair and they have to suffer heartbreak and loss like we did with Connor, that stuff changes a person.
So here I am back to angry about what has already happened to us and what is yet to happen. I know this is a phase and as they say’this too shall pass’ but screw it I’m pissed about it all right now. I want to have a physical person to blame, to scream and shout at and maybe just maybe even kick them a little, well a lot. I sit and write this stuff because it builds up inside me if i don’t and I want to be happy. I want to be worrying about normal mum stuff not that and then the extra special needs mum stuff. That might be selfish but It’s tiring and emotionally hard. I don’t want to talk to them about how they could have disabled children, not because i don’t believe they would make brilliant parents to children with additional needs i just wish i could save them the pain and the wrry i see all the time. Don’t get me wrong i know it’s inevitable that i have to talk about it i just wish i didn’t have too. Then on the other hand i feel so so guilty that i am struggling with this when other parents wont ever get to see their children have babies and they would love to have the worries I have. Is it only because i’m female that I overthink and worry about being worried.
After reading all that i don’t want you to think im a terrible person it’s not that i’m not grateful, am so grateful for my boys. I think a stillbirth and 3 miscarraiges will do that to a person, it makes you realise what you might not have had. I know i have so much but at the same time i feel like i did something wrong in a past life. The boys don’t deserve to have to worry about wether they can have healthy children on top of the fact that they have their own physical and educational difficulties. I keep thinking about Karma and all that jazz, it doesnt add up. My brain flip flops between feeling sad that we have had a lot of bad luck and guilty because to some people have it worse. Aren’t brains a beatiful and cruel organ eh?