Sunday, 24 July 2016

Fragile X Awareness month - Day 24

Its's not always about Fragile X. Sometimes it's about those who don't have it. The silent, unsung heroes who love us, support us, find us exasperating and illogical. But despite all the challenges, the meltdowns by the kids and me (be under no illusions, us carriers are just as prone to sensory overload) I am very, very lucky to have a partner who has stayed.

We recently talked about what it's like for him to be a member of this family. As a father of three kids (2 with FX) and partner to a carrier he feels he is largely ignored. The primary focus is on the kids and all of the contact with therapists, doctors etc etc is usually done by me. This is because he works full time and can't usually be part of all those appointments.

No one ever asks him how he is. It never occurs to anyone to see if he's coping or if he needs help or advice. And as a man, he doesn't really know how to ask.

I hope this is something we can redress in the near future.

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