Thursday, December 5, 2013

Waving the Preemie Flag

A few days ago, I was reading posts on a preemie message board for a popular parenting site. I had no idea such online support existed when I was struggling through the NICU. I now know of several wonderful preemie websites and Facebook groups. But, I'd never been to any of the preemie boards, and I wanted to see what was there.

One of the questions on the message board was about a toddler in a baby gymnastics class. The toddler is a preemie and, as a result, is small and developmentally-delayed. The mother wanted to know how to handle questions about how old her baby is. Most of the advice surprised me. The moms agreed that since the toddler is older than a year, the mother should just say the baby's real age and not adjust for the prematurity--that there is so much disparity in development after a year that it shouldn't matter. While that might be true in many cases, the toddler in question was in a class where her delays were apparent because all the other children were walking while she was still crawling. The comments that really amazed me were the ones advising that any unsolicited information about the toddler being a preemie might put off other parents by giving them more information than they really wanted.

My gut reaction was to totally disagree, and I decided that clearly this message board was not for me. Even days later, the question still nags at me. Why?

Because I believe prematurity is something to be celebrated. Because the roads our babies have traveled have been long, rough, and full of bends, but when they get to their destination, we're all stronger for it. Why should we not celebrate the miracle of life when life should not have been possible? Why should we hide what makes us unique? Why distract from a very real issue, that far too many babies in this country--in this world--are born far too early and we should do more to prevent it? You don't have to wave the Preemie Flag everywhere you go, but if someone asks you how old your baby is in a setting in which it's apparent your baby is not able to walk when other babies can, why should you hide the truth?

Some of the mothers were worried about giving too much information or wearing people out with the discussion of prematurity. Maybe some people get sick and tired of hearing me say preemie, but you know what? This is my life. Every second of every day I am reminded that I am the lucky one who left the hospital with two children. I wake up to the noise of toddler feet on the carpet next to my bed, and I fall asleep listening for cries from the nursery. My day rises and sets on the schedule of two little bodies. So, when asked about my children, am I not supposed to give an honest answer? "She is 11 months, but she's a preemie so she's like an 8-month-old" only takes a second longer. If someone doesn't want to hear that answer, then why ask me a question in the first place?

J was 9-months delayed during the time when he didn't roll, crawl, walk, or talk. He was the size of a baby when he was a toddler. If I hadn't said that he was a preemie, what would I say? It was obvious that he wasn't your average 15-month-old! Maybe that's the difference. Maybe waving the Preemie Flag isn't so necessary when your child catches up within a few months of birth, as I did. But, I was born 4 weeks early, not 14! I guess what troubles me the most is the sentiment that other mothers asking about my children might be offended or bored by an answer that takes approximately 10 additional words. When did we become so immune to those around us that we didn't take the time to listen? When did our world start spinning so fast that we couldn't be bothered to really connect with other human beings? We need to collectively put our iPhones down and take a breath if we're too busy for a good human interest story now and then. I love to hear other people share their stories. For me, that's what makes life fascinating.

And if I show up for a gymnastics class with my small, developmentally-delayed preemie and you ask me how old she is, you will get the truth. If it puts you off that I give you more information (as in 10 additional words) than you expected, why even make small talk in the first place? Because prematurity in my little family has been like a glacier that remade the shape of us. If we aren't allowed to be open about our journey and you aren't willing to share yours, then I don't think we can be friends.

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