So the other day I posted about the scholarship fund and I was just told that you all are actually donating money for this! That blows my mind and makes me so, so, so thankful for all of you who have stepped up to help make this a reality for families who could not otherwise go! Since I am asking for non-FX friends to donate too I thought perhaps I should share a little bit more about what going to my first International Conference has meant to me.
Let me start with this, going to the conference in 2010 was completely and solely my idea. Please don’t mistake this for bragging or minimizing Eric’s involvement in any way. He is going to be thrilled that I am accepting the sole responsibility for that decision because it also means that I’m responsible for the avalanche of changes that have taken place in our lives during the last two years. I will no longer be able to tell him that it’s all his fault when I find myself having to step outside my comfort zone, yet again. And, trust me, that’s pretty much all he has heard from me since we returned from the conference!
So, fine. It’s my fault. Happy E?
When Eric and I received the diagnosis in 2006, we tried very, very hard to pretend that our lives had not just been derailed. Of course, there were realities that we couldn’t ignore but we would look at each other frequently and say, nothing has changed. He was still our little Monkey, we were still who we had always been. Nothing had changed.
We went to one local fragile X event and while we were astounded at being in a room with other parents, once we left, we went back to defensively insisting that we were not those people. We didn’t have anything in common with those people, the ones who’s lives were centered on fragile X. No, we were just a normal family that just happened to have this thing blowing the roof off our lives. Nothing had changed.
For four years we stubbornly held this line. Fine, when it came to school fragile X ruled but, outside of that, we were just your average family with a child who couldn’t talk, who wasn’t potty trained, who didn’t sleep. Just your typical family. When people said that they didn’t know how we did it, we didn’t know how to respond. Honestly, we weren’t any different from any other parents, right? Right! They’re nuts, what is wrong with them? Nothing had changed!
I don’t know why I decided that the International Conference would be a good idea but I did and pestered poor Eric until he had us signed up. He was humoring me, there wasn’t going to be anything for us there. I was afraid he was right, not that I ever admitted it. This was going to be one expensive waste of time, energy and money. We knew everything we needed to know already. Nothing had changed.
What can I say, we were a little slow to the party. Every bit of our lives as we knew it, every bit of our future as we had planned it…everything. Everything had changed.
Going to the conference didn’t suddenly open our eyes to what had happened to us. In many ways, I’m still figuring it out. What it did was give us the knowledge and the support structure we needed to survive when we could no longer deny that everything had, suddenly and irrevocably, changed.
These past two years have not been easy, not by any stretch of the imagination. Anyone who’s been subjected to this blog for any period of time knows it was bad. Sometimes it was way worse than I could even allow myself to convey here. Dark, angry days. Cold, shut off days. Never-ending, bleak days. Give up and go back to bed days.
But, I didn’t give up. The dark, angry, cold, shut off days passed. I kept getting up in the morning and putting one foot in front of the other because I love my son and my husband and because I had this group of parents who had it as bad, maybe worse, than I did who kept getting up and kept moving forward.
Not only did they keep moving but they were determinedly dragging me and every other struggling parent along with them. These people, that I was half convinced were superheroes in disguise, put together conferences, raised money, raised awareness. These are people that I had put up on a pedestal and convinced myself I could never be one of them. I would have continued thinking that if not for that conference. If not for the shared drinks, the shared tears, the shared laughs. I met them and loved them and discovered they’re as messed up as I am and they keep going and they keep dragging others forward with them.
How on earth could I look at these people, my friends…some of the best friends I have ever had…and not stand up? How could I go on being deadweight and be OK with that? I couldn’t.
They brought me forward to the point where I can say, “Yes, everything has changed. My life is not what I expected.” And be OK with that. They’ve taken me under their wings, into their hearts, into their lives and shown me that they’re human…amazing, driven and determined…but still just human. They’ve shown me in ways both subtle and not so subtle that I could be like them. I could do things to help other people.
Within days of getting back from the conference we took the first, small step in that direction. Each day we get a little more comfortable and feel a little more capable…all because of that conference. Starting the LINKS group, going to Advocacy Day, testifying at the State House, hosting our own conference…every single bit of it…because of that conference.
I’m so grateful that we can afford to do this. I don’t “deserve” to go, I’m blessed to go and I know it. Every one of the families depending on scholarships to put this conference within reach deserves to be there, needs to be there. Please help them get there.
You can donate directly to the NFXF (it’s tax deductible!) by going here:
Any amount will help, a lot of small donations will do great things. Please put “Scholarship Fund” in the acknowledgement section to direct your gift.
*The title is one of C’s favorite sayings at the moment. It’s stinking cute.
every.time. <3
Eric read the draft and cried…I thought I’d get the mighty KQ with this one..
I started out laughing….
You laughed, you cried…it’s a freaking masterpiece, what can I say, lol.
Brought tears to my eyes too. Maybe Yan and I could go next year. I still am trying to get a handle on the fact that we’re in the freakin’ Fragile X Club and there’s no escape!
Christy, you have until 2014 to make the decision! CT has another conference in October…you can ease into it. Kathleen refers to the fragile X club as Hotel California 🙂
Well, now you’ve even made a “veteran” cry. By the way, what’s wrong with denial? My husband and I were there for 4 wonderful years! Now, being that it was so many years ago, it is a huge void in our memory. I am glad I don’t remember it. I’m ok with selective memory retention. I am so glad that you and E finally made it to our world and you are such a welcome and refreshing addition. I just feel sorry for the folks that are not in our cozy little world 🙂
Hey! This is an exclusive club, that one can only join by invitation!
Well, now you’ve even made a “veteran” cry. By the way, what’s wrong with denial? My husband and I were there for 4 wonderful years! Now, being that it was so many years ago, it is a huge void in our memory. I am glad I don’t remember it. I’m ok with selective memory retention. I am so glad that you and E finally made it to our world and you are such a welcome and refreshing addition. I just feel sorry for the folks that are not in our cozy little world 🙂
Invitation? Mine must have got lost in the mail I was CONSCRIPTED!
We drafted you cause we knew it was the right thing to do 🙂
Denial was nice…feeling empowered…even better 😉
Very true and powerful statement.
I just like that you finally admit that it’s truly all your fault… all of this… so no more blaming me for it.
M just write in on the calendar so that it’s there for E to see….gee, one time they are not to blame and they want an award!!! Geesh….my hubby is the same way!
Eric is going to have to admit that I WAS RIGHT about Caleb’s room…he was a doubter!
Honestly, I have found that I cannot possibly keep track and document all of the times I was right or not to blame……just smile and move on 🙂 It’s so rare that they get a “check mark” that we must concede once in a while. Personal satisfaction goes such a long way!
Oh, no, I’m always to blame and he never admits I’m right 😉 he’s very stubborn that way but I love him anyway.
<3 bit by bit, these amazing people (whom I consider you and E part of ) are pulling us all forward… and eventually we find our feet and go… "no one wants to leave butt prints on sands of time" 🙂
Beautiful…..as always. This veteran cried like a damn baby. Love you! Love Eric! Love my big, gorgeous FX family!
Totally off the subject, but where is the money jar? I mean the one where Melissa Welin must have been putting money – because I don’t think “freakin'” is a word that would cause any money to go in said jar and b/c I don’t think there was one jar word in the whole blog. Which by the way was a great blog. What has happened to Melissa?
Meg, you noticed that, eh? I’ve been a very good girl on the scholarship ones…a grown up almost…because I had HOPED it would get shared. I didn’t want to turn anyone’s hair blue. Also, I could not afford to establish a jar…I could fund another scholarship with the proceeds from a single month most likely 😉
I didn’t talk until I was four years old, and when I did it was in full sentences. my stepfather, and mother told me I wouldn’t stay quiet after that. Ha, ha. I don’t have any children yet, and I don’t know if I ever will. Unless my luck changes very soon. I am going to be 35 next month.
Reading your blogs have helped a lot I didn’t want to pay attention to how I felt about Fragile X for years. I was so angry in the beginning at my aunt for suggesting I get tested to finding out that I had it. It hurt so much I cried a lot. I thought my whole world had been ruined. Finally after fifteen years I don’t feel bad about talking about it.
I rem. feeling sad when I first called the Fragile X foundation a while back I almost didn’t know what to say to the guy who answered the phone. Then it all finally came out. Now I will be at my first conference, and I am really excited about it.
I look forward to reading more of your blogs.
Sarahrose, I am a firm believer that you need to talk about the things that hurt you the most. I’m so glad you called the Foundation, they are all *awesome* people. Robbie Miller was the first person I ever talked to that knew what Fragile X was and what we should be doing to help our little Monkey. I basically cried for the first 1/2 hour of the call but I felt lighter after it. We need people around who are walking the same path.
Miami will only be my 2nd conference, the first one can be a little hard (I’m very shy at times…mostly in crowds) so be sure to find me if I don’t find you 🙂
Also, you’re friends with my husband Eric on Facebook, can I send you a request too?
Love it! Every member of the ‘Club’ is still a Superhero to a level which I may never achieve… you guys amaze me. <3