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Preemie Lessons for Today’s World

November 17, 2016

Excuse my language, but Holy Crap*, how did this happen?! Twenty five. 25! Twenty-freaking-five!

ikemolly25(Please note that the birthday people in question are both sleeping now because they have jobs—yay!—to go to in the morning, so I will post a birthday pic when they come home for dinner. Edited at 11:09 pm to include picture above.)

march-of-dimes-graphicCause for celebration, indeed. Before I start, let me remind you that in one of the world’s greatest examples of serendipity, Isaac and Molly’s birthday happily coincides with World Prematurity Day.

“World Prematurity Day on November 17 raises awareness of this serious health crisis. This is a critical moment in our fight. In 2016, the nation’s preterm birth rate worsened for the first time in eight years.”— March of Dimes

If you’re looking for a good cause to support, you can celebrate our preemies’ birthday by donating to the March of Dimes.

If they’re paying attention, most parents recognize that we learn far more from our kids than they ever learn from us (don’t worry; they’re not reading this). I have learned so much from each of my children, but we’re talking about Isaac and Molly here. They are both shining examples to me in many ways.

From Isaac, I have learned patience, grace, kindness, and purity of spirit.

From Molly, I have learned tenacity, fortitude, passion, and gumption.

I freely admit that I’m not always (read rarely) as good at practicing what they have taught me as I am at recognizing it, so I thank them for their gifts, and apologize for not being better at adopting them.

While not sleeping this week, I have thought a lot about the lessons I’ve learned while raising preemies for 25 years. In particular, I’ve been thinking about privilege—trying to understand it, trying to accept that (through no effort on my part) I and my family have been afforded privileges that we don’t even recognize. It’s hard to understand something, let alone affect change, when you don’t even recognize it. So here’s what raising extremely premature babies has taught me about my privilege:

  • Though my husband lost his job two months before Isaac and Molly were born, we had amazing health insurance. We were able to keep it partly because my husband fought for it when he lost his job, and partly because the Employee Retirement Income Security Act of 1974 (ERISA) [a federal law] includes the COBRA amendment, which allows some employees and their families to continue health coverage for a limited time after a job loss (at their own expense). I do not know what we would have done without that excellent insurance coverage, which is no longer even available. It still took us years to pay off our portions of their NICU stay and follow up care. I am grateful today for the Affordable Care Act, which allows my family to have health insurance and has allowed us to keep Isaac insured because his part-time job does not offer that benefit.
  • We are privileged to live in a community with one of the premier Neonatal Intensive Care Units in the world, the Infant Special Care Unit at Evanston Hospital. At the time, we lived just a few miles from the hospital and were able to visit any time we wanted, day or night. There were families who lived 25, 50, even 100 miles away, who had other children at home, or who had to overcome other obstacles to visiting their preemies. The more than 120 professionals who cared for Isaac and Molly during their 5-month ISCU stay were literally life savers, but how much harder would it have been if we couldn’t be there for our babies.
  • Both Isaac and Molly received myriad therapies between birth and kindergarten. Isaac was a special needs student throughout his school career, and we are privileged to have the Individuals with Disabilities Education Act (IDEA) to support us in our efforts to get and keep the services he needed.
  • We are privileged because our children grew from 1.5 pounds each to become healthy children and now young adults. Many, many families with preemies are not as lucky as we have been. My heart is with them.

There are so many people who helped us along the way. I know we are lucky. Everyone we met was willing to fight for Isaac and Molly—to go above and beyond to keep them safe and healthy, no questions asked. Not every family has that privilege. I have tried to give back, and will continue to try in honor of these extraordinary young people, as well as for those who don’t have the resources we have had.

We had occasion to tell Isaac and Molly’s birth story at a party recently, and one of the people listening said: “OMG, that’s just terrible.” I’ve heard that a lot over the years, and it always takes me aback. I honestly don’t remember any part of it being terrible.

I do remember suddenly being thrown into a world that seemed terrifying and unfamiliar. It was certainly not what we had hoped for or planned. We were scared, overwhelmed, and completely unsure of what the future would bring.

We had no idea what to do, and we knew for absolute certain that we were going to face years of as-yet unimagined difficulties. But we learned immediately that we had to get busy educating ourselves, being proactive, and working hard on their behalf. We also knew that we couldn’t give up. That was not an option. Because we loved them. Because they were ours. Because it was our responsibility.

Each November during prematurity awareness month, these feelings come crashing back in on me. This November—more than any November since 1991—those feelings of fear and uncertainty have again overwhelmed me. So again, I’m looking to the lessons my preemies have taught me. I am remembering that we must get busy educating ourselves, being proactive, and working hard on behalf of those most vulnerable. We can’t give up. That is not an option. Because we love this country. Because it is ours. Because this is our responsibility.

And now my preemies, who fought so hard for life, are in this fight, too.

Happy, happy birthday, Isaac and Molly. You are my heroes. I love you more each day.

*Those who know me know that I’m not really saying “Holy Crap” here.

2 Comments leave one →
  1. Lori Prang permalink
    November 17, 2016 7:41 am

    So beautifully written Susan. What a story. 25 years…how DID that happen. Blessed to have your friendship.

    • November 17, 2016 11:19 am

      Thank you, Lori. I feel the same about you.

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