Written by Riley's Mom Angela
At 19 years old I knew the baby I was carrying was having seizures, the doctors refused to take me seriously. At 20, when I gave birth, I told them there was something wrong with my baby's heart. Again, they said I was just paranoid. When Riley was 4 weeks old on March 14, 2003, I took him to our local ER having seizures and they said he was in a horrible state of heart failure and he was life flighted to the nearest Children's hospital where our journey began.
For the first 18 months of his life, Riley was in and out of the hospital more times than I can count. Things like heart failure, pneumonia, seizures were our regular cause. He was tube fed exclusively for three years (though he ate well up until 8 months old he never gained weight so he was labeled failure to thrive and tubed!) He relearned to eat at 4 years old and that was quite a feat. I would take the peg tube back now because at 5 we finally got a diagnosis of 1p36. If we would have known that then, I would have expected a slow growth process. One he hit 2 years old his health leveled off and his seizures stopped. We quit all meds but the heart medicine. His heart is on the decline these days but I choose to let that up to God and not worry about it, we've had a lot more years than the doctors ever told us we would!
Now Riley is a pretty not-typical, typical teenager of 14. I have to wrestle him out of bed like any other teen, force him to shower and brush his teeth (when I say him, I mean his body, my mechanics, he is unable to do these tasks himself). He loves girls, basketball, baseball, swimming and all kinds of regular old boy stuff. He also loves Elmo and toddler toys, carries around the same picture for weeks until it's shredded and insists on opening magazines and books to the same pages and leave them laying all around my living room. He's obsessed with Bill Gaither and loves to play marbles for hours. He talks like curious George but we get the jest most of the time and I'm pretty sure if he had real speech he'd be quite a singer because he sure can carry a tune, words or not we can usually tell what song he is singing by his pitch! He goes to school dances and has a "normal" 15 year old best friend who he sees often on weekends.
So now days it's not so bad. When he was young I thought my world would fall apart because of 1p but I have learned that it has really made my life what it is today. Different than most but pretty much normal. Okay helping your teen in the bathroom and having your seven year old "watch" your 14 year old when you're busy outside isn't normal, but it's OUR normal!
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
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