Long Term

Ever since we received Bubba's diagnosis, Evander and I have pondered the long-term implications. I, myself, have often wondered if he will have a best friend, a sleepover, or a birthday invitation (that does not involve parents' friends). Will he play soccer, go to college, or have a first kiss? Most parents do not even think of these questions, because it is assumed, just as I assume these things for Baby, that each one will happen. I, however, cannot assume these things for Bubba, because only time can answer these questions, and the more time that goes by, the more I begin to wonder.

I have now started to question the long-term medical implications. In my mind I see Bubba, age 18, in his dorm room with a Dr. Pepper in hand. He has on raggedy jeans that he hasn't washed in weeks and a green worn t-shirt with the outline of a white car on it. He is barefoot, lying on his bed, watching tv. Bubba desperately needs to study, but he is exhausted from the sedating-effects of the Seroquel. His roommate has gone to McDonald's, but didn't ask if he wanted anything because his special diet makes ordering way to complicated. The night before he went to a keg party but couldn't drink because the only GFCF beer is Redbridge, and it is NEVER in keg form. Suddenly his cell begins to vibrate on the desk. He doesn't want to answer because it's his mother, but he does anyway. "Did you take ALL 12 supplements yesterday? And your glutathione cream? And your B12 injection?" Terribly annoyed he answers,"Yeeesss!"

This is not what I want for my son, but this could be the reality (without the nagging mother of course). We do not know if he will need to stay on his GFCF diet forever or if he will need the supplements to sustain himself. We hope to have him off the Seroquel, but after a trial run off of it, found that he just can't function without it right now. He constantly hears me saying, "You can't eat that! It will make you sick." or "You have to take this because it helps you talk and think clearly." He is taking so many supplements, but he needs them. Right now we just don't know!

All of the unknowns have lead me to a conclusion. I can not worry about the long-term. I cannot concern myself with college or prom or sleepovers. I cannot worry about driving or friends or GFCF beer. That is why my "long-term" is now kindergarten, and even that is 2 years away. We have to focus on the here and now and on getting him better. We have to focus on getting him into a mainstream kindergarten and all that entails. I just want to see to it that Bubba is happy!