Thursday, November 19, 2009

The Toughest Question

I spoke at an event at Valley Med this morning as part of a "town hall" panel about prematurity at the opening of a new NICU family support program for the hospital. Here's my speech.

I was at the grocery store on Tuesday and the checker asked me how many kids I have. It’s a pretty simple question. Innocent. Yet, it’s probably the hardest question in the world for me.

The easy answer is to say one. But the fact is that I have two sons -- I have this amazing, intelligent, goofy six-year-old sidekick who charms the socks off of people every day. And in my heart, I have his twin brother, who I held in my arms for only an hour but will always be a part of me.

I usually say I have one child because it’s somehow easier to say that out loud. But inside I always know the difference.

I went in for a regular prenatal check on a Friday afternoon and was in the hospital within an hour. I remember walking by the NICU on my way to check in and thinking that I’d rather jump from a plane than have to go in there. Parachute or not. By Wednesday, I was there.

My sons were born 14 weeks early at 26 weeks gestation. They weighed less than two pounds each. N lived only an hour and @ spent 110 days in the NICU. In that time he had three surgeries plus blood transfusions, platelet transfusions, and more time on a ventilator than anyone wanted to see. I watched him turn blue and be resuscitated by doctors and nurses more than once.

As a parent you feel overwhelmed, helpless, and scared. As a mother, if you’re like me and many others I’ve met, it doesn’t matter that in 50% of cases, they don’t know what causes premature birth. As a mother, all you know is that your body failed to protect your child. And now you have to watch as other people try to protect and heal your child. Throw in some post-partum hormones and it’s one bad roller coaster.

The most important thing I learned was to let go and to take things one day at a time. Personally I would have rather learned that from a book, but I didn’t have that choice. Some of the parents drove themselves crazy doing research on all of the possible outcomes – if this happens, this might happen in two years. If and might can throw you into a tailspin pretty quickly.

I learned “today is Thursday, today went well.” Or, “last night was rough, but this morning his numbers are good.” “He peed.” Who thought weighing a tiny diaper could have such an impact on a person’s day?

I watched him have seizures and met with a neurologist who didn’t want to have to tell me that he couldn’t predict if it would happen again.

After he finally came home, @ spent another year tethered to an oxygen tank 24x7. He had at least one medical appointment every week. He had physical therapy. Later he had speech therapy and feeding therapy.

When @ was two, that same neurologist told me that when he first met us, he thought our son’s chances of a normal outcome were very low. In the next breath, he discharged us from his care because @’s exams were now normal.

@ started first grade in August. He’s very small for his age, but he’s a tough little guy. He loves school. And he is very proud of helping the March of Dimes in honor of his brother.

He has experienced far more than anyone his age should have to see. And sometimes he just amazes me. And other times, when he’s doing all of those things six-year-olds do to drive their moms crazy – I do my best to remember how lucky I am that he survived to poke the dog, or jump on my new chair, or turn the entire contents of the recycling bin into a drum set.

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