Two years ago, prematurity struck our family. Out of the blue, it hit us. Looking back, there are lots of things I would love to tell myself now – accept help, take it one day at a time, buy more concealer and waterproof mascara. But, in honor of World Prematurity Day, (which is coming up on the 17th of November) I also wish people knew these seven things about the harsh reality of having a baby born before 37 weeks.
1 – The NICU/ hospital stay? Yeah, that’s the “easy” part for me. When Zoe was born, we received scores of emails and texts from friends and family offering to help. But after discharge, we were largely on our own. Everyone thought that because we had survived the hospital and she did not end up in NICU (which were a wonder in itself as she was born a “blue baby”), that we just picked right back up where all the other parents who brought babies home did. We were “normal”- whatever the hell that means. Never mind endless pediatrician visits, worries over stupid things like the flu, frustrating phone calls (so many I lost count) with Medihelp to at least pay some of the bills. For the first 12 months, I would be honest- it almost broke us. It almost broke me. My spirit. My heart. The countless blood tests and doctors’ visits and ER trips- that’s just the beginning.
2 – My kid may not “catch up” as quickly as you think, or ever. At first the well-meaning comments of “Oh, Zoe is super tiny, she will catch up in no time,” didn’t bother me. I just smiled politely and walked away. They didn’t know she threw up at every meal and multiple times in between due to bad reflux and that breastfeeding her turned into literally a full-time job. They didn’t know how much I cried in the pediatrician’s parking lot after another round of “we not entirely sure”. They didn’t know how I stayed up late nights wondering how we were going to pay for these medical bills. They didn’t know. But their words still stung. You see, nobody knows for certain what my preemie will do. What she will achieve. Maybe she will catch up in a year, or five. Or never. All I know is that preemies are on their own schedule for development. I just have to love her through them. Oftentimes that’s the only thing I do well is Love Her.
3 – It’s serious. A cold or quick illness to your kid may be a major setback or a trip to the ER for mine. I stopped calling people back that quipped, “Can I come over? It’s just allergies!” No, no it’s not. Because when you sneeze, all I see are those thousands of germ particles hurtling toward my child’s face. And then I know that surely means a month of recovery. All I wished for is people not to judge when I wrap her in so nothing can get to her. All I was trying to do to survive and keep my preemie healthy.
4 – It’s expensive. But, just because we had thousands of Rands in medical debt doesn’t mean we can’t live our lives. Please don’t judge. It likely took tons of planning, a delicate balance of maneuvering (driving instead of flying) and kids’ medication schedules. It might be the one thing that year that saves my sanity. Or, maybe we sprung for family photos. I know we took them as soon as possible because I had this rational/irrational fear that I will lose her. Looking back on those newly snapped photos reminds me of just how far we’ve really come. We’re just trying to capture life, in all its beauty and failures.
5 – It’s likely crappy luck. More than likely, nothing I did caused my daughter’s prematurity. The specialists called it an anomaly. I have a different, non-family friendly name for it. It wasn’t the yoga I tried, the coffee and tea I drank, the sushi / biltong/ MacDonald’s I ate or the run around at work. It just happened. And, trust me. Shaking that guilt is the single hardest thing I do every day.
6 – It’s complicated. Please don’t ask if we’re having more children (the answer is no- this experience scared the living daylight out of me) or if it could happen again. Both are intensely personal questions. Maybe we’ll have more, maybe we won’t. But no matter what is decided I’m fairly certain I’ve prayed more about it than you may ever know. My husband and I understand the seriousness of that decision and there are so many factors for us to consider. And, when I opt out of a playdate or an outing, it probably isn’t because I don’t like you. Nope, more likely it’s that the ordeal of getting out is well, an ordeal. Some days I just can’t do it, but please don’t stop the invitations.
7 – There’s no contest to win. In fact, I wouldn’t wish this experience on my worst enemy. Nobody wins the “worst prematurity story” because, quite honestly, it’s the hardest thing for every family it hits. We all cope differently. Me? Mine was a mix of wine, counseling, spiritual direction, great friends and medication. Sometimes heavy on the wine, other times heavy on the spirituality. Every day I look in my little Zoe’s eyes and it is a good day.
Power to the preemies. And their moms and dads.