This week Max has been very restless, he cries (something he almost never does), doesn’t sleep, and vacillates between not wanting us out of his site to giving me his first ever, “I really don’t like you Mom, I’m moving out!” (When I offered him a suitcase he did backtrack saying he thought he would just live in his room and never come out.) This is something I would expect to hear from my teenager but not my Max.
Coupled with this odd behavior Michele and I have been noticing physical changes in Max which seems to indicate some progression or change in whatever the hell Max’s undiagnosed condition is. Or does it mean nothing? Who knows? How much should we worry? Who knows? Because without a diagnosis, without a definable syndrome or disease we do not know what any physical change means for Max. No one knows, the doctors and researchers are not far along enough in their studies of Max to give us any type of “map to his future”.
Parenting a chronically ill child is extremely difficult; parenting a child with no diagnosis carries its own special pain. I am not the type of person who does well with the “unknown”. I like facts and resolution and being in control. We have none of that so every time Max looks or acts “not quite right” I spiral downward into a dark hole. After nine years I am physically and mentally exhausted from crawling out of this hole. But crawl out I must because there are doctors to e-mail and call, trips across the country for medical care to be pushed up by several months so we can be certain that we aren’t about to take a turn down some other winding, uncharted path.
Yes, I am tired but I look at Max and I know he needs me to not be tired, to not stay in my hole. He needs me to do what I do best…fight for him!
No comments:
Post a Comment