My life as it stands now, maybe

I come from a long line of ALD carriers; we think this started with my great-grandmother, who was born in 1895. (I haven't been able to find out if it was spontaneous in her or if it started further back.) My son, Andy, 7 years old, has ALD but is non-symptomatic, as he is in the Lorenzo's Oil study with Kennedy Krieger Institute. He's just a bubbly, sweet little boy. My older son, Patrick, 11 years old, is perfectly healthy. I have AMN symptoms: numb feet, bad balance, pain in my lower back and legs, and on and on ad nauseum. I can walk, however slowly and the beeline I make when I walk makes me sometimes look like I'm drunk, but I don't drink very often at all (boyfriend's in AA). The supplements I'm on have improved my symptoms so dramatically, it's amazing.

My little Andy-Bubbles is the sweetest little boy ever. He's having difficulty accepting his dad's new girlfriend and is acting up. He's been through a lot of stuff in a short amount of time and we need to give him a chance to acclimate to the situation. In the meantime, discipline is having a hard time pinning him down. He just wants to fly in the face of parental authority. He just wants to bubble up. That's why I call him Bubbles. He doesn't realize the gravity of the situation with step-mom, who wants to mold him into a respectful little boy. It just takes time and patience. I have little troubles with him. He's not disrespectful at my house. He's quiet and calm and loving. When he does throw a fit, it's over in a couple of minutes; he has to be left alone for a few minutes so he can calm down. I guess we just have different parenting styles.

My older son Patrick has acclimated to this situation. He likes dad's girlfriend and wants to help her as much as possible. Andy doesn't listen to Patrick either. Patrick wants Andy to be perfect, as Patrick feels like he has to be, which is not true but getting that into his head is hard. Patrick's doing so well now. He's getting his classwork done in class, and sometimes has homework, but gets that done first, followed by chores, then he can play on the computer if he wants.

I don't know what the future will bring; no one does, but the now is important. Play with the boys. Hug them, kiss them, love them all the time and they will shine. So I hold onto my two little lights, but not too tightly, because then I'll be smothering, rather than letting them out into the big world we have out there, a little at a time.