One mom shares about parenting her adult child with heterotaxy...
Many of you know what I went through when Thomas was a baby, because that’s where you are now, in a situation that affects the entire family.The impossible prenatal diagnosis of Heterotaxy Syndrome, testing, surgeries, around the clock tube feedings, medications, and extended hospital stays have become our normal. I somehow knew through all of this that we were among the lucky ones, and this feeling becomes stronger as I read so many stories of warriors and angels.
Where I am now is looking forward to Thomas’ 21st birthday! With no physical limitations, he has played baseball all his life. He was recruited to play in college, and is now in his junior year at Albertus Magnus College. The only time I think about his condition is before his annual cardiology visit. That’s when all the emotions come rushing back, as if there weren’t so many years since that first ultrasound.
I have never treated him as if he was different or sick in any way. His heart and intestines have been corrected, and his organs work just fine where they have been placed in his body. He wears his scars proudly, and has even told staring younger children that he was bitten by a shark! We may sometimes tease Thomas about his heart being on the wrong side, or donating some of the extra spleen he doesn’t need. Otherwise he is a healthy and strong young man doing well in college and looking forward to a successful future.
Dianne Ceneri (Mom to Heterotaxy Hero, Thomas)
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