His Name is Jacob

My son Jacob has 48 chromosomes, his X and Y chromosomes doubled so he has XXYY. One name for it is Klinefelter’s Syndrome XXYY variant. We sometimes refer to him as a “Double-Male.” I do not really want to get into what all this does to him; suffice it to say that it makes him different. The Wikipedia entry is an excellent resource for most people and was written by a doctor we know and admire for her work researching this rare phenomenon.

Saturday I spent the day at Kaiser Urgent Care and Kaiser Hospital in Irvine Emergency Room because Jacob jumped off a swing and landed on his arm wrong; he dislocated his (left) elbow again. It is the third time we have had to have it reset. It has been more than three years since the last incident and I had hoped his body had recouped enough that it would not happen again. I was mistaken, as was he, and I got to go with him.

He was sweet the whole time. He was in pain but took time to tell me he loved me --even before the meds kicked in! LOL He was mad at himself for getting hurt and thwarting our plans but all I felt was concern that he would  be taken care of quickly and with great compassion because he is, after all, one of my babies. They did not fail me, or Jacob.

Jacob is not an easy child. He has no filter. He feels pain, he hollers. He thinks something, he says it. He gets mad, he reacts. I try my best to make sure he understands what is going on because he makes assumptions and reacts before he realizes there was nothing to react to. I try not to baby him. I try not to shelter him too much; but at the same time I struggle with trying to prepare him for as normal a life as possible. It was easier when as a baby I took him to a therapist and they taught him how to walk, or talk, or eat and even to lick his upper lip. All things he could not do without being taught. Now we are learning there are similar things with social skills and other basic “human” skills that Jacob does not understand.

He is a good kid and wants to do what is right but most days are a real struggle for him. And for us.