He never complains
I think I have shed many more tears than my son. I think I dwell on what he isn't able to do way more than him. I think I freak out about the future more than he ever will. I think I am the one constantly feeling guilty that he sits in his wheelchair too long, hasn't been stretched for the day or needs to take a bike ride. Brendan is perfectly content sitting in his wheelchair.
Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that!
The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I realized it is probably for the better that he is content. He would be very frustrated otherwise. He doesn't mind that everyone has to help him. He doesn't mind sitting and watching Youtube for hours. He doesn't mind wheeling around instead of walking. Emotionally and mentally I shouldn't want any different for him. He has a long life ahead of him and he will most likely be in a wheelchair his entire life. I personally think if he really wanted to walk in canes or stand up he could but he thinks he can't. He has fears and he just doesn't try. As a mother I have be the drive. I have to demand that he gets off his butt and moves those legs. I have to do the work so that he gets exercise and stretched out. If I don't carve out the time I feel beyond guilty. I sleep better if he has a productive day.
This year he has actually shown some motivation. He always wants sneakers on so that he can use the bathroom on his own. He has come so far and figured it all out completely on his own. The only thing that stinks is that the wrong breaks were installed on his wheelchair when one broke this Summer and I am STILL waiting on the correct parts to come in. This really hinders him because his foot plates can not open all the way and he has a lot of trouble self transferring. I guess I should have offered to pay out of pocket for that item! It is a major safety issue but I guess that doesn't matter. (Can you sense my annoyance?) He has also gotten so much better riding his bike. He used to always want to be pushed or helped up the huge hills. But now he rides a full mile with zero assistance, even up the hills. I have probably mentioned this before but I am super excited. He actually just wheeled out of his bedroom as I was typing trying to get his own shirt off. It was only behind his head while both arms were still in but that is a start! He never dresses or undresses himself. Maybe one day he can help us out. He also did amazing at the dentist last month. He has major sensory issues and he tends to gag. He decided not to eat breakfast so that he wouldn't have any issues and he did it! He even handled a full x ray and had to stay completely still while biting onto something. I was shocked. Maybe he is more motivated than I think?!
Sometimes we battle. We yell. We cry. But no matter what we love each other and I always assure him that everything I do, I am doing for him and to make his life better. One day he will appreciate all that I have done for him. If not I know that I did everything I could for my son with Cerebral Palsy. I am just happy that Brendan is happy. He never pity's himself and he never complains. He is such an awesome kid.
Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that!
The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I realized it is probably for the better that he is content. He would be very frustrated otherwise. He doesn't mind that everyone has to help him. He doesn't mind sitting and watching Youtube for hours. He doesn't mind wheeling around instead of walking. Emotionally and mentally I shouldn't want any different for him. He has a long life ahead of him and he will most likely be in a wheelchair his entire life. I personally think if he really wanted to walk in canes or stand up he could but he thinks he can't. He has fears and he just doesn't try. As a mother I have be the drive. I have to demand that he gets off his butt and moves those legs. I have to do the work so that he gets exercise and stretched out. If I don't carve out the time I feel beyond guilty. I sleep better if he has a productive day.
This year he has actually shown some motivation. He always wants sneakers on so that he can use the bathroom on his own. He has come so far and figured it all out completely on his own. The only thing that stinks is that the wrong breaks were installed on his wheelchair when one broke this Summer and I am STILL waiting on the correct parts to come in. This really hinders him because his foot plates can not open all the way and he has a lot of trouble self transferring. I guess I should have offered to pay out of pocket for that item! It is a major safety issue but I guess that doesn't matter. (Can you sense my annoyance?) He has also gotten so much better riding his bike. He used to always want to be pushed or helped up the huge hills. But now he rides a full mile with zero assistance, even up the hills. I have probably mentioned this before but I am super excited. He actually just wheeled out of his bedroom as I was typing trying to get his own shirt off. It was only behind his head while both arms were still in but that is a start! He never dresses or undresses himself. Maybe one day he can help us out. He also did amazing at the dentist last month. He has major sensory issues and he tends to gag. He decided not to eat breakfast so that he wouldn't have any issues and he did it! He even handled a full x ray and had to stay completely still while biting onto something. I was shocked. Maybe he is more motivated than I think?!
Sometimes we battle. We yell. We cry. But no matter what we love each other and I always assure him that everything I do, I am doing for him and to make his life better. One day he will appreciate all that I have done for him. If not I know that I did everything I could for my son with Cerebral Palsy. I am just happy that Brendan is happy. He never pity's himself and he never complains. He is such an awesome kid.
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