This past Sunday was one week from a most incredible day. We are also approximately one week from when Hayden's annual Giving page closes. As most know, this year our support for the NFXF is in honor of H becoming a Bar Mitzvah. While we have already met and even far surpassed our original goal, the page has no limit. I am certainly in the mindset of continuing to see just how far we can go!
But we do not just choose to support the National Fragile X Foundation because of the fact that Hayden was born with fragile x syndrome. There is an important perspective I have been wanting to share ever since the NFXF International FX Conference in July, and it has to do with helping individuals with fragile x throughout their lifespan.
At some point after lunch yesterday everything turned into a very fragile x sort of day-- didn't start out that way at all. I would loosely sum it up as mom-- and then later the respite helper-- receiving the brunt of the noncompliance, defiance, and overall state of hyperarousal. This is a real term used to describe when the central nervous system of an individual with fxs is in a temporary, heightened state of altered arousal. While Hayden is aware when this happens, he is struggling terribly to regulate himself. He is remorseful after-- from the hitting, cursing, throwing things-- and actually quite disappointed in himself. Thus turning an already difficult situation into something completely heartbreaking. How awful to witness your child going through that and also knowing, inevitably, there are other people in the world who will witness this too. It is one of the absolute worst feelings-- when you're at your lowest and it's essentially on display. And worse, leaves a window of vulnerability when others can completely misinterpret and misunderstand the context or the intent.
For example Hayden feeling overwhelmed... wanting it to stop... someone wanting to help... Hayden not wanting the attention... his biology putting him into a state of fight or flight... having an impulsive reaction and grabbing an everyday object that happens to be on the counter because someone was using it... say for example that object is a regular knife like one you would find in any typical kitchen... and say for example he clumsily raises it, not pointing it at anyone or anything in particular, but in his state of fragile x hyperarousal he sprouts awful expletives (among other things that he doesn't mean)... followed by the nearest individual calmly backing off and firmly stating to put the object down. Hayden listens, is immediately apologetic, but also just scared the heck out of someone. Not to mention this eats him up inside and ruins the rest of the day for him. As a parent you thank the Lord the other individual has the knowledge to understand he never has intent to injure, while silently this unprecedented incident makes you feel like a piece of your heart just died inside.
Something like that.
So back to the perspective from conference that I want to share... and why continuing to support the mission of the NFXF is so crucial...
There are of course many parents in the fragile x community whose children are now grown adults. During a meeting before conference kickoff, one of these parents was reflecting on just how far the community has come. Especially with regard to conferences and having been there from the beginning, this particular parent was able to offer a perspective that not all of us were aware of. The room grew quiet for a few minutes as we listened to what it was really like so many decades ago... the optimism and hope surrounding the discovery of the single gene being responsible for fragile x. And with that, the families who were sure there would be development of a pill (for example) within five years from then... and fragile x would be no more. Ten years at most. One gene. I mean if the scientific community was able to identify this, surely the medical community could develop a treatment or probably even a cure. So they thought. And with that there were some who remained determined and focused and completely dedicated to generating enough resources for research. And helping to allow scientists to continue efforts towards appropriate treatments or perhaps even that cure.
In addition, there were those who paused to realize something else. We still need to think about living in the now. How will families get through the day-to-day. How can we ensure that everyone has access to information-- the individuals, the caregivers, and anyone else involved in the life of a person who is affected by fragile x. The community needs education, awareness, advocacy... and yes, research too. Seize the day as well as the future-- always think forward without forgetting about today.
So if I don't share the good, the bad, and the scary in the now... then what happens when I'm not here to share it. I want as much of our perspective to come from us before it can come from someone else. We will always need experts and resources-- such as those available within the NFXF-- because some of the needs of individuals will continue to change throughout their lifespan. The good news is we will always be able to continue to learn.
Amaaazing what our loved ones can accomplish when we know how to help them succeed. A week and a half ago was just one example of that. So is it better that we have a cure for fragile x? Yes.
But it is best that we know what to do until then.
For approximately thirty five years now the National Fragile X Foundation has been like a lighthouse for the community of people affected by fragile x, around the world. We are grateful they continue to help Hayden forward.
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give.fragilex.org/Hmitzvah
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