So...we had Isaac's IFSP (Individual Family Service Plan) today. The words, "He isn't delayed anywhere" (meaning anywhere on the spectrum: physically, cognitive, etc.). Wait. What? "He must be high-functioning." Am I hearing you right? "Even cognitively..." Okay, okay, this is a miracle. My son has FRAGILE X SYNDROME. He has SPECIAL NEEDS. How is this possible? Did I miss something? Why? Should I feel guilty because he is doing so well? Mostly I just want to throw a party, but it seems too good to be true. Do I just wait and see? Will this change?
(Flashback:) After I told my ward that my son was diagnosed with FXS, a woman that works with special needs children said that, although it may sound strange, especially in this grieving process (of just finding out the news), "you'll be glad it is Fragile X Syndrome and not something else." The more I get immersed in the world of special needs the more I see that I AM glad. The thing its, just like autism, FXS has a wide spectrum. If you are on the lowest end of functionality, it is one of the harder things, I would think.
Here is the thing, though, Fragile X Carriers have their own issues, so taking care of special needs children on top of that is tough.
But really, when I look at Isaac I have no regrets. Never. Did I know what I was getting into when I was having my own children, knowing that I am a carrier of FXS. NO. But, I love this kid to pieces! And so does everyone that meets him. That smile is amazing and I think he'll have it forever. It's a gift. It changes people's lives. I am so glad we chose to have our own children. It's amazing.
Whatever happens I want to rejoice in the now. I don't want to "just wait" for the worst and hardest to happen. I am happy now. He is doing awesome now. I will continually hope and dream for his future, just as I do for Amelia. Glimpses of marriage, mission, even riding a bike come into view when I hear the above statements of "He isn't delayed."
