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.
12 thoughts on “Fragile X Syndrome, I’m scared”
Ouch. Because fragile x syndrome I’m scared describes the first few days (weeks, months, years, whathaveyou) for all of us, doesn’t it? My heart reaches out to whoever that is.
It really does. We’ve all been there even if we weren’t able to say the words…
I thought you only shared your # with ME!?! 😉
You are such an amazing soul, I am so proud of you every day, just for being you – and for the difference you make in the lives of everyone living with FX. <3
Right up until you made me start a LINKS group that was true 😉
Love this blog. It rings so true for all of us at one time or another. You are right…..figuring out that you are not alone is such a powerful thing….although, sometimes hard to accept. It WILL be ok……after a while 🙂 I think it’s similar to a roller coaster ride (which I’m not fond of)…really slow at first, then you realize what’s hit you and you get going up and down really fast and furious, then after what seems like a lifetime, you finally come to rest…..
I couldn’t let E take the fall alone for that one 😉 And NOW look… MONTHLY dinners, with WINE?!? Ummm… YOU’RE WELCOME!
Melissa, Fragile x is scary…but what’s scarier is when our kids don’t have someone to navigate the system for them, to stand up for them. You never have to be scared about that. You are an amazing mom to Caleb and he will alway have that on his side. It is indeed a roller coaster with ups and downs. The best advice I got…enjoy the highs when you have them and know that when you’re in a low it will eventually end. 🙂
Thank you Orah, that really means a lot to me 🙂
Hi Melissa, Yes it is scary, because you wonder how are you going to explain fragile x some time to a future boyfriend or husband. I have never tried to have children, because I was afraid of what would happen if I did. I have been single for 15 years so far waiting for the right person with whom I could have this conversation with, and wouldn’t run away from because of it. I have thought of IVF if I ever was to have a relationship with some one. There is just so much that comes with having Fragile X myself also. I have a full mutation with six hundred repeats. It didn’t stop me going to a regular public school or even attend a university. I know in some respects I have been able to do a lot, but still I would like to have at least one child… Well who knows what the future will hold.
I look forward to going to the conference, and learning more than I thought I knew. Thank for this blog.
I totally forgot it really has only been 10 years that I have not been with some one. Still I think that because of many different things including Fragile x it didn’t keep the one boyfriend I had really from walking away.
There are many times when I am really, really grateful that I had no idea until after Caleb was born. If I had been in the position of having to make a choice, Caleb wouldn’t be here…and that feels very, very wrong. It takes a special person to deal with this, a strong person…they exist, I’m sure of it!
I hope I get to meet you at the conference!
Yes so true! A very special person indeed. I hope to meet you at the conference also. Thanks so much for replying.