Kids Klubhouse

Since this blog has become more about my mental health and less about the kids, I will say that I have been in a funk the last few days. I am wracking my brain trying to figure out what it is that is funkifying me. I have considered the first trip to the pool with the kids last week. It was as difficult as I remembered. Given so much time to sit and watch other kids and thinking, it makes me very sad. I saw lots of boys playing in twosomes and threesomes and found myself wondering if Nathan and Bennett will be included in one of those little groups. I compare their size and ability to others their age. I watch other kids do a double, triple and quadruple take when they walk by. I find myself being jealous of the families of two boys and a girl who walk in all looking alike. I desparately wish my boys could have the longer surfer hair that is in style for boys right now. But that doesn't usually affect me for a week so I was off to consider something else. Nathan has been saying a couple things about having special needs lately. He was looking at baby pictures and noticing that his veins weren't sticking out then. He has been talking about how Bennett will eventually look like him, with no awareness that this isn't the way it is supposed to be. Then I made the mistake of weighing Nathan one day. Although he has gotten significantly taller, he has not gained any notable weight which means that he is overall skinnier. That knocked me down for a few days.

Then I was looking online at some stuff about Mandibuloacral Dysplasia. I was trying to remember which kind they have, A or B. In the description of MAD Type B (the one they have) had the words "premature death" as a symptom. As the boys get older and I see my neices and nephews getting older, I am starting to panic. I look at teenagers and wonder where we will be when the boys are that age. I used to be able to justify that there was time between now and then but it seems like the time is slowly closing and the time for us to find a cure is shrinking. Then there is the possibility that my funk is due to the kids being out of school. They have been home for a week and although delightful, they fight like crazy. I just want them to get along and I know that it is normal but I wish they could just be nice to each other and take turns. I guess I am used to getting my stuff done rather than refereeing. Then there is tomorrow. Nathan and Libby are going to attend a local camp that is four days a week from 9-12. Nathan will not have an aide like he does at school and all of a sudden I am nervous. I felt like having an aide was not necessary for him but now i am second guessing myself. I spoke to the director a few weeks ago and he was the nicest and sweetest guy. He assured me that Nathan would be fine. Apparently he lived behind us until last year and saw Mark taking the boys to school in the morning. I am so used to people being paranoid about Nathan's safety, worried about liability etc that it was such a relief and a surprise to have someone just reassure me that they would make it work. So now my brain is racing about all the dangers in groups of kids. So I am not sure what has me in this funk. It could just be a general malaise about the boys and their condition. I just hope I am able to pull myself out of it soon. Then I stumbled upon this picture of Bennett from exactly one year ago. He has lost so much hair in just one year.