There are some days when I log in here to write and I see something in my search terms that just sucks the wind right out of my sails. For instance, today I fully intended to come and share some happy, funny little anecdotes about my little Monkey and what is the first thing I see?
fragile x syndrome i’m scared
I just want to reach out through the internets and give you a big hug and I’m not a hugger, typically…but I know you really, really need one right now. Fragile X is one scary MoFo. Even after living with it for all these years, there are times when I am absolutely paralyzed with fear over what the future holds for Monkey and for me…
The only words of wisdom I can scrape together today are these…there really, really, really are happy days coming, even if it doesn’t feel like that right now and….it’s less scary when you aren’t alone.
My monthly dinner with my lovely FX mamas is this coming Wednesday and I know right now I’m going to feel so much better at 7PM when I sit down with them. I’ll feel even better 30 minutes later with a glass of wine in my hand as I snort with laughter over some ridiculousness fragile X has brought into our lives.
If you don’t already have someone to talk to, even if you don’t even know what you’d say, call me…e-mail me…leave a comment…whatever you’re comfortable with. My e-mail is email@example.com and my phone numbers are listed here: www.fragilexma.org. You aren’t in this alone.