The Halland Tribe

I just got done with my son Maddy's physical therapy appointment. Maddy had cerebral palsey and is 5 years old. His physical therapist comes twice a week to work an hour with him. They do streches,exercises , play games, all in all a very hard but fun time. Maddy spends most of his time in a power wheel chair. He has spastic quadraplegic cerebral palsey, which means he cannot use his upper or lower body very well. It is hard to think that my sweet, funny, very witty baby doll will not ever lead a "normal" life...what ever that is! He will always be dependent on someone or something to get him around, to get in and out of bed,the couch, a chair, the house, the car. This is a full time, life time commitment for him. Sometimes the thought of that is overwhelming for me. It just makes me want to cry. Then I have to step back and reallly look at him. He is 5 going on 30, he is so smart it is scarey. He has full use of his speech and talks a lot! He has a great sense of humor, he will go up to anyone and say'" Hi, my name is Madison, what is your name?" Then hold out his hand to shake and say,"it's nice to meet you"(we never taught him that, he picked it up on his own) He is great at telling others what to do, he is selfconfident,has a mind that is always going. His favorite thing to do lately is to produce movies. Yes, he plans them out, the scenery, the setting, the characters, what they say, what they do, where they go, who is the bad guy, what does the others do to react to him...I can't even do justice to the work he puts in to them and this may go on for many days, as he develops the characters, and the scenes change,and he even has names for the different scenes! So when I start to feel melancholy about Maddy, I have to look at it this way, he is a fabulous person, he just has a different way of doing things, not the norm, isn't that tremendous ! Who wants to be just like everyone else?

Today is Monday, Jan. 12,2004, 9:07am and I have gotten 4 kids off to school, made two trips to two different schools, a grocery store, had a meeting with school officials to revise my son's IEP to help his study skills, taken care of my sick daughter, and tried to make an appointment for my daughter for an emergency dental apponintment. Haven't had any success getting her an appointment so far, I feel so bad for her, she is in so much pain! I am so frustrated with the dental system!!!!
I guess I should back up and say that I am the mother of 11 children. We have had 8 boys and 3 girls, one of our sons died 14 years ago, so we have 7 boys and 3 girls now. I am a stay at home mom, but that is such a silly term, I hardly ever get to stay at home! I have to spend too much time running around for kids stuff! This year is the first year that my youngest is in school. So this time next year I will be alone all day not just in the afternoon. What a very weird thing, it will be the first time in 23 years! I am doing a lot of thinking about what I will do with my time. What a big decision!