After I re-read my post from yesterday I realized that I wanted to say more about Clark and his condition. For those of you who don't know Cerebral Palsy just keeps getting worse as one gets older. In addition, there is no cure for it.
One of the things that I constantly struggle with is "getting right" with CP and things I cannot change or fix. As a parent you want the best for your child, in all things, and when they grow up and move away, as in the natural order of life, you still worry. But you know that they are an adult now and can take care of themselves. That is not so with Clark, I will always worry about him! Is he warm enough, are his teeth clean, when is he going to have to have a G-tube replacement (I hope it doesn't happen while we are away), etc., etc. I think the best way I can help you understand is if you have every had a parent or grandparent in a nursing home.
You walk in to see them, maybe (depending on their condition and the nursing home staff's attentiveness) you smell urine or feces, maybe you see them in not enough clothes or too many, maybe they did not get their nails clipped or hair combed today. Your first instinct is to "fix" whatever is not right. It is like that for me....always. Part of me wants to turn that off but, part of me can't...because if I stop caring for him (even in the smallest way) who will?
It has been a constant struggle and fight for his nearly 20 years. But, I do not give up hope!
Now he is in a State run home, this was only to be a temporary placement...he has been there for a year and a half. We have been working with an agency to find him his own home. Just last week, we found out that this agency, while they haven't given up on finding something, has hit some road blocks. So, we have to start exploring another agency.....that was 5 months of nothing! Meanwhile, Clark is getting older....when he turns 21 school will be over for him and he should go into a day program out in the community. But, because he lives at a state run facility, they have to provide everything for him. They cannot because while he has physical needs that they can take care of, they can't meet his social needs very well. If he ends up staying there, we will have to find some $$$ somewhere to get him out into the community.....we will cross it when we, if we, get there.
As far as his physical body and travel.....he had a spinal fusion (rods and pins from T2 to the Sacrum) due to scoliosis about 3 years ago...saved his life! He also has had a Femoral Osteotomy about 2 years ago due to his legs windsweeping to the sides and causing one of the hip joints to come nearly out of the socket. Because of those surgeries, he cannot get in a comfortable position for a long period of time....his power wheelchair helps with tilt and recline features. And because of the power wheelchair we cannot get him into many homes....including Grandma and Grandpa's. Not to mention monitoring the meds, feeding, dressing and toileting....well, I think you get it.
So, Wayne and I make the best effort we can to provide him with the best life we can. Clark always has a smile and an "I love you, mama" for me and a fist bump for Dad no matter how he feels. He is a gift from God and we are grateful!
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