We wanted to share something that a 1p36 Deletion Sydrome mom shared with us recently. Julie R. and her son where having a rough few days and so she wrote the following for some inspiration and reasurance. We all go through hard times with our children and I think it is especially in those times when we need the perspective that Julie gives us here. Thank you for allowing us to share it with others.
It's not that I'm still changing my 16 year olds diaper.
It's not that I'm still bathing, brushing his teeth, or getting him dressed.
It's not that I'm still preparing his breakfast, lunch, snacks, and dinners.
It's not that I'm still driving him to all of his specialists. (Cardiology, urology, psychiatry.....)
It's not that I'm still buying toys, movies, and books geared towards a 3 year old.
It's not that I give him more medications a day than I've taken in my entire life span.
It's not that he engages in SIB's (self injurious behaviors)
It's not that he can't verbally talk.
It's not that he's missing part of his first chromosome.
It IS that he put the laundry away today with out being asked!
It IS that he took a bath with out hitting himself!
It IS that he still loves the wiggles!
It IS that he knows his ABC's!
It IS that he loves when I sing to him! (LOL. Even when I can't stand the sound of my own voice)
It IS that he is a miracle that has already overcome what he was "never going to do" !
It IS that he can walk!
It IS that he can eat orally!
It IS that he is finally sleeping through most nights!
It IS that he has learned to talk using pictures!
It IS that he can say the word HAPPY!!!!
It IS that he's missing part of his first chromosome!
He is my miracle. He is my reason. He is my connection to an amazing group of people. He is my baby, and my teenager, and my love!
It's not that I give him more medications a day than I've taken in my entire life span.
It's not that he engages in SIB's (self injurious behaviors)
It's not that he can't verbally talk.
It's not that he's missing part of his first chromosome.
It IS that he put the laundry away today with out being asked!
It IS that he took a bath with out hitting himself!
It IS that he still loves the wiggles!
It IS that he knows his ABC's!
It IS that he loves when I sing to him! (LOL. Even when I can't stand the sound of my own voice)
It IS that he is a miracle that has already overcome what he was "never going to do" !
It IS that he can walk!
It IS that he can eat orally!
It IS that he is finally sleeping through most nights!
It IS that he has learned to talk using pictures!
It IS that he can say the word HAPPY!!!!
It IS that he's missing part of his first chromosome!
He is my miracle. He is my reason. He is my connection to an amazing group of people. He is my baby, and my teenager, and my love!