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.