Ayden Jane just accepts PWS as a part of her life. She works hard in therapies, takes supplements, tolerates dietary restrictions, gets a daily injection and is way too comfortable in hospitals all in the name of PWS. She doesn't remember life any other way so it has just been her normal.
Now that she is a bit older, she is realizing that other kids do not need to do all these things. She knows there are other kids with PWS and enjoys meeting them, but none of them are close or a part of her daily life. The realization of being different, and different in a way that makes things harder is beginning to set in.
Today she was asking about why she has to take b12 ect.... I told her because of Prader Willi Syndrome. She then asked the question I have asked more than a few times, "why did God make me with Prader Willi Syndrome?" I didn't really answer that question, just said that isn't it good that we have simple things like b12 to make her body work like it doesn't have Prader Willi Syndrome. Then I let her answer the big question.
She talked a bit about how God can make people any way he wants so why did he pick Ayden Jane to have Prader Willi Syndrome. She talked about how she has worked hard and her back is straight and she doesn't get in trouble in school. (yep, that random) As she just talked out loud I realized she was not asking in an angry at God sort of way (like I have been known to do) but just out of curiosity. In the end she just said, "Mom, I'm happy are you happy?" Of course I said yes so she summed it all up with, "well ya can't ask for more than that, can ya."
Still loving spring break!
Now that she is a bit older, she is realizing that other kids do not need to do all these things. She knows there are other kids with PWS and enjoys meeting them, but none of them are close or a part of her daily life. The realization of being different, and different in a way that makes things harder is beginning to set in.
Today she was asking about why she has to take b12 ect.... I told her because of Prader Willi Syndrome. She then asked the question I have asked more than a few times, "why did God make me with Prader Willi Syndrome?" I didn't really answer that question, just said that isn't it good that we have simple things like b12 to make her body work like it doesn't have Prader Willi Syndrome. Then I let her answer the big question.
She talked a bit about how God can make people any way he wants so why did he pick Ayden Jane to have Prader Willi Syndrome. She talked about how she has worked hard and her back is straight and she doesn't get in trouble in school. (yep, that random) As she just talked out loud I realized she was not asking in an angry at God sort of way (like I have been known to do) but just out of curiosity. In the end she just said, "Mom, I'm happy are you happy?" Of course I said yes so she summed it all up with, "well ya can't ask for more than that, can ya."
Still loving spring break!
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