Five years ago prematurity happened to our family. Out of the blue, it sucker punched us. Looking back, there are lots of things I’d tell myself – accept help, take it one day at a time, buy more concealer. But, in honor of World Prematurity Day, I also wish people knew these seven things about the harsh reality of having a baby born before 37 weeks.
1 – The NICU stay? Yeah, that’s the easy part. When our son was first admitted to the neonatal intensive care unit (NICU), we received scores of emails and texts from friends and family offering to help. And, when he was emergency transported for surgery to the nearby children’s hospital, even more people checked in to assist. But after discharge, we were largely on our own. Everyone thought that because we had survived the NICU 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. Nevermind his additional six surgeries, his 12 specialists, his numerous hospital stays, worries over RSV and the flu, frustrating phone calls (so many I lost count) with billing and insurance offices and the hundreds and hundreds of therapy sessions we endured. For years. It almost broke us. It almost broke me. My spirit. My heart. The NICU stay? Yeah, that’s just the beginning. For most of us, it’s life after that’s the real test.
2 – My kid may not “catch up” as quickly as you think, or ever. At first the well-meaning comments of “Oh, your son will catch up in no time,” didn’t bother me. I just smiled politely and walked away. They didn’t know he threw up at every meal and multiple times in between. They didn’t know how much I cried in the therapists’ parking lot after another failure of a session. They didn’t know how I stayed up late nights wondering how we were going to pay for this “life-saving” therapy. They didn’t know. But their words still stung. You see, nobody knows for certain what my preemie will do. What he will achieve. Maybe he’ll 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 my son through them. Oftentimes that’s the only thing I do well. Love him.
3 – It’s serious. A cold or quick illness to your kid may be a major setback or even a hospitalization 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. And, if we’re unlucky, a hospital stay. Please don’t judge when I cart around my anti-bacterial gel and douse everything I see with it. I’m just trying to survive and keep my preemie healthy.
4 – It’s expensive. But, just because we have thousands of dollars in medical debt doesn’t mean we can’t live our lives. Please don’t judge the vacation we take. It likely took tons of planning, a delicate balance of maneuvering airports 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 our son wouldn’t survive his next surgery and that photo would be all I had. 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 our son’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 cokes I drank, the sushi I ate or the fitness program I used. It just happened. And, trust me. Shaking that guilt is the single hardest thing I do everyday.
6 – It’s complicated. Please don’t ask if we’re having more children 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 beer, counseling, spiritual direction, great friends and medication. Sometimes heavy on the beer, other times heavy on the spirituality. Every day I look in my son’s sweet blue eyes and thank God he’s mine. However long that may be.
Power to the preemies. And their moms and dads.