Sometimes I feel as though my entire life is consummed by Fragile X. Its almost always on my mind, on my person, and in my DNA. But occassionally, I forget. Seriously, it happens. I work so very hard at creating memories for my kids. Our memories are what make us…US, its what helps us through the good times and most definitely the bad times. It ties us to our past and our loved ones. We have no idea how much time we have on this earth, so I work extra hard to make special memories for my kids. One of my favorites is birthdays. I love celebrating my kids birthdays. Its a day that is super special to me because its the day I got to meet them for the first time and certainly a reason to celebrate.
My baby boy, yep, he will always be my baby, will be 10 next Monday. DOUBLE DIGITS! Holy smokes! But with that comes a whole new set of fears for the special needs parent. This whole birthday party thing is new for Logan and me. Thats when it hit. I sent off his birthday party invitations with him to school today and told him to pass them out to his friends in his class. I stopped at Target on the way home from dropping them off to get stuff for a birthday party Victoria has this weekend and to pick up some stuff for his party next week. As I walked through the doors to Target, it hit me. I literally stopped in my tracks. I suddenly realized that just last year was Logan’s very first birthday party with friends and we had stx-209 to thank for it. Then I realized that we didn’t have that this year and I almost felt a panic attack coming on (okay maybe slightly dramatic) but all those fears came back and I realized that for a few moments I had forgotten. Forgotten that he may not even want to go to Chuck E Cheese next Wednesday, he may have a meltdown in the parking lot, he may not want to eat or play, it may be loud, it may be noisy and crowded and we won’t even get a table. Then again, it could be fine but as the parent to a child with fx, I have to prepare for the worst and hope for the best.
I had also forgotten for a short time about stx-209. Has it really only been 5 months since our world was rocked by the news? Logan’s teacher told me, just yesterday, “We don’t need the pills” and I think she is right. Logan’s vocabulary has continued to explode with 2 and 3 word sentences almost daily now. When I have conversations with him where he can actually answer, I forget for a moment. Then, I realize that he is about to be 10 years old and still can’t do alot of things that other kids his age can. Will we ever have a sleepover? Will he ever write a letter? Will he ever get to lose himself in a good book? Will he ever say to me “remember that time we..?” I sincerely hope so and only God knows and I continue to pray for it everyday.
Until then I will just keep on, keeping on and continue to make those memories.