I have so very much to be thankful for and to celebrate. My family is all together, and the boys are truly treasures of my heart. Still, some days, I have a hard time not focusing on my fears.
M's FASD, and what that might mean are always in the back of my mind. I think about the people in society that "snap" and I read things like that "I am Adam Lanza's mother," and I wonder what M's future may hold as he ages. I know the doctor told us not to worry because he's doing so well right now, but I read that in a lot of cases puberty and hormones can change behavior in children with FASD very suddenly.
J's been a handful at home, testing and pushing back at every turn, and now it's started in his afterschool program, too. What really gets me is that he doesn't seem to care when we impose consequences, which makes me wonder where we are going wrong and if he is having a really hard time attaching to us. While I think of RAD, I also know that we joke that he shows OCD tendencies (confirmed by our therapist and his teacher). I even wondered about ODD, since he very simply tells us that he is misbehaving simply because he wants to and doesn't want a boss (and doesn't care in the slightest if there is a consequence). Well, this morning I saw something that might be his first tumor (but for all I know it could just be a pimple), and I googled NF and behavior. What came up was a variable alphabet soup of correlations: Asbergers/autism, ADHD, OCD, ODD, HDD. It seems none of this is written up in the literature, because it hasn't been studied, but there is lots of evidence suggesting that NF is tied with difficult behavior challenges (makes sense, since it is a neurological issue). Great. And then I read that a lot of medicines may have the unintended consequence of making tumors accelerate in growth! So now we have to worry about everything he's taking, too, as he's always on a cocktail of drugs.
So I worry about my boys and where their medical issues might take them socially. I worry about how it's going to impact their everyday lives, aside from the medical ramifications. And I worry so much some days, that it's hard to rejoice in all I do have.
I have a wonderful family full of love. We have a lifetime to spend together, to fill with wonderful experiences. We have the celebration of Christmas and will be surrounded by loads of family that love us. My ski season starts in two days, and we plan to spend as much time as possible enjoying it. The boys are flourishing and our days are mostly good. THIS is what I need to be focusing on, but some days it's really hard.