Today is Fragile X Awareness day. Our goal today (and every day) is to make just one more person aware of Fragile X and what it means. I can give you all of the medical jargon and stats, but I want it to be more personal today. I want you to know not just the numbers, but the effect it has in our homes.
Our lives are filled with IEPs and ARDs, Occupational, Physical, and Speech Therapists. There's the pediatrician, neurologist, ENT, developmental specialist, and mental health doctors, too. Our daughter's teachers become our friends; we spend so much time communicating with them throughout the years, it's inevitable. And homework is a nightmare we avoid at all costs.
We have headphones and chewies for emergency situations, and can never go anywhere without food in our pockets. There's always a Plan B which may go into effect at any given moment and we know the best way to make an "emergency exit" no matter where we're at. To-go boxes are our friends, and the playground is our savior.
We have learned the art of deep pressure massage, brushing of limbs, and de-escalating meltdowns. We can tell the difference between a lack of desire and an inability to control the body to do what needs to be done. We don't make plans too far into the future, because we don't know what to expect from one day to the next. But any plans we do make need to be marked on the calendar, discussed in our home, and be flexible to allow for moments of deep breathing and dug-in feet.
Much of our time is spent reassuring our daughter that we love her. She perseverates on the unknowns, the what-ifs, and the potential bad. Her anxiety stalls her and we are constantly put into the position of knowing when to push and when to hold back. Forcing her into a situation can either prove to be exhilarating (like the time we made her ride the water tube ride) or a disaster (like the meltdown that happened after we made her swing at the piñata and it didn't break).
If we're not assisting our Fragile X daughter with these things, we are explaining the "unfairness" of it all to her younger sister. We have to discuss with her why she has a larger share of the workload. We have to solve equations of what she's capable of versus what her sister can do versus the total amount to be done, and how much slack we, as the parents, have to pick up in order to not stifle the spirit of our youngest.
Our lives are filled with brainstorming ideas for how to handle situations we may come across. When she turns 16, she won't be getting her driver's license. When she turns 18, she'll question why her younger sister is driving and she isn't. How will we explain that? When our youngest is older and meets the man of her dreams, gets married, and has children of her own ... what will that look like for our Fragile X daughter? How will we help her? What will our role be in 10 years, 20 years, forever?
What we DO know is that we spend a lot of our time trying to educate people about Fragile X. We talk about it to everyone we meet, trying to figure out a way to sneak it into a conversation. We go to Washington, DC to talk with our representatives and request continued funding for studies and research. We enroll our children into drug trials, brain studies, and speech and language development studies. Fragile X Awareness walks are held all over the country and conferences are attended by families from around the world.
What we DO know is that, while Fragile X sucks, we wouldn't trade our daughter for anything. We do what we can to decrease her struggles. We pray for a drug to help her to function to the best of her ability. We seek for ways to make her life easier. And we continually spread the word about Fragile X.
If you would like more information, please visit the National Fragile X Foundation or the FRAXA Research Foundation