18 hours ago
Thursday, July 15, 2010
Preemies, cerebral palsy, autism, Down syndrome, ADD, PDD: We can all relate
Tonight NICU, a 10-episode docu-drama, will debut on Discovery Health at 10 p.m. (ET and PT time). The program takes you behind the scenes of the top neonatal intensive care units in Baltimore, San Diego and Cleveland. I'm going on a quick trip with Sabrina to Kentucky (more on that next week), but I'll be DVR-ing the two episodes airing. And you can pretty much bet I will cry my way through them.
I've always been a person who sobs at sad movies and TV shows. After I had Max, though, I had deep and extreme empathy for preemies and their parents. Max wasn't one—his cerebral palsy stems from a stroke at birth—but I know what it is like to go through extreme trauma with a newborn.
I feel a similar connection with all parents of kids with special needs, any kind of special needs whatsoever. Because even if the symptoms we are dealing with are different, there are some very common things we face as parents of kids with special needs.
* We know what it's like to have that throbbing worry in our heads and dull aches in our hearts about our children.
* We know what it's like to have to get past the grief—and, yes, the disappointment—that our kids aren't quite the kids we imagined, and learn that our kids are awesome in their own right.
* We know what it's like to have to juggle the doctors, specialists, therapists and medications on top of all the other stuff we do—and become medical experts ourselves. (And insurance-company warriors.)
* We know how awful some doctors can make us feel.
* We know how suck-y school progress reports can make us feel, too.
* We know how much it can hurt to see considerably younger children doing things our kids can't do...yet.
* We know what it's like to experience pity, pity we don't want.
* We know what it's like to run low on patience, and then feel guilty about that.
* We know what it's like to feel very alone, despite our family and friends.
* We know what it's like to still wonder why this happened.
* We know what it's like to experience the super-thrill of a child doing something for the first time.
* We know how satisfying it is see a child exceed a doctor's expectations.
* We know what it's like to feel deliriously happy when our kids are happy.
* We know that their smiles can heal.
* We know what it's like to no longer think of a child as having special needs but to just think of him as a child, even if others think we are in denial.
* We know what it's like to be willing to do whatever it takes to get a child the treatment, services and care he needs.
* We know what it's like to love a child with special needs with a special kind of love, one that's both tender yet fiercely protective.
What other connections do you feel you have with parents of kids who have special needs?
Posted by Ellen Seidman at 12:05 AM