Today’s Girl Tribe Tale is written by Jackie and describes her feelings around diagnosis and finding out she is a carrier of the fragile X gene.
A lot of feelings described here that I can relate to ❤️
You go through life thinking you know who you are, what you’re about, then life throws you a curve ball that explodes all that you know or what you thought you knew about yourself, your relatives and what makes you you. It basically “pops” that safe bubble.
I’d had a few minor “pops” in life from cheating first loves to an abusive partner whom I had my 1st child with. These “pops” you can pick yourself up, reevaluate things let them make you stronger as a person.
When my 2nd child Olli was born, he was lovely and cute, all the things a newborn should be but as he grew and developed I knew things weren’t right, I questioned the Health Visitor who just kept giving me the same crap about “all children develop at their own pace”. Well I’d had enough of this just before his 2nd birthday, I went to the doctors and demanded that I be referred to a paediatrician. The doctor was more than happy to do this.
When Olli was two years and three months old we finally had an appointment, I went armed with research about delayed speech and what I wanted. Anyway what knowledge we left with after that appointment was a “wow” moment.
As soon as the lady saw Olli she gave him a diagnosis of “fragile x syndrome” and ordered bloods to confirm it. She then outlined what it was, what it meant for him, where we could find support and sent us for genetic counselling. We had an answer but not one that was expected.
What was this “fragile x?”
How did he get it?
All these questions were now spinning round our heads.
Fast forward 3 Months, we got the results that confirm the fragile x syndrome, the following week we saw the geneticist who gave me my biggest “pop” she told me that I had passed this gene to Olli that I am a carrier of this syndrome.
33 years of life, knowing who I am and what I’m about to be told actually some of the strange things you do maybe because of this gene. Then to be told that the child I was pregnant with could also have fragile x as the more children u have increases the risk of the mutation on the gene expanding.
My life suddenly went Bang, I had no idea of this gene ran in my family, I had unknowingly given it to my second and third child. The guilt was awful, the guilt that I probably wouldn’t give my lovely new partner a “normal” child after I had given my nasty ex a “normal” child broke my heart because this man saved me from that horrid beast, he deserved the best of everything but I couldn’t do that for him. This ate me up so much.
I thought I knew who I was.
It took me a long time to accept that Olli and Finley would probably never leave home, Olli most probably will never have kids but Finley maybe as his fragile x is a lot milder than Olli’s.
Life with two children who see the world so differently from me, you and each other is hard at times, but in a strange way it is rewarding.
They have shown me a new way to love my children, to engage with them and a new joy for life that yes involves the occasional bite mark or scratch when a hug isn’t wanted.
Written by Jackie