After my triplets were born at 25 weeks 5 days, my natural inclination was to try to answer the question “Why?” Why did this happen to me, my family, my babies? Guilt was the overriding emotion, despite hearing on numerous occasions:
“You did nothing to cause this.””
“This is not your fault.”
“Guilt is an unproductive emotion.”
In my state of irrational thinking, I knew it was my fault. There was no other logical explanation. I scolded myself for doing fertility treatments. I told myself I should have accepted that I wasn’t meant to have children. I was convinced this was punishment, through the suffering of my 25-weeker triplets, for my past wrongs. Guilt and self-deprecating thoughts weighed me down like a sodden blanket. And then, tragedy struck again when one of our daughters died suddenly at just 14 months.
My psychiatrist diagnosed me with major depression, compounded by grief and Post Traumatic Stress Disorder. I was a mess to say the least. I forgot to eat most days. I had no energy and would nap for hours whenever my girls did. My interest in anything, outside of my own pain, was absent. I felt as if my feet were leaden. Each day took so much effort, like trudging through mud a foot deep. The life that stretched out ahead of me seemed pointless and unending.
Thanks to the support and love of my husband and our families, our two surviving babies, continued to thrive while I worked with my doctors and counselors to get well. I couldn’t say how long it took before I began to feel some semblance of normalcy, but over time it has happened. I no longer simply go through the motions of caring for my girls, while simultaneously drowning in my daydreams of what might have been and the flashbacks of the nightmare we lived through. I have found a deeper sense of love and gratitude for the gifts I have been given here on Earth and those that wait for me in Heaven.
I still ask the question “Why?” and while I do not claim to have the final answer, I can begin to see the why materialize through the work I do supporting other families like ours. My husband and I co-founded the Zoe Rose Memorial Foundation in 2008, a non-profit offering support and resources to families with preterm infants. We knew we had to do something to help other families facing traumatic circumstances similar to ours, but we never could have imagined the phenomenal things that could happen once I chose to loosen the vice-like grip I had on my life.
Out of our quiet determination to push forward, a second organization began to take shape that I am privileged to facilitate. The Preemie Parent Alliance is a network of preemie parent led support organizations (Hand to Hold is a founding member serving on the leadership council), whose members touch on each aspect of a preemie parent’s journey – from bedrest and high-risk pregnancy, to peer support, loss, ongoing care, and everything in between. Our member organizations offer an array of services including online forums, care packages, financial assistance, events, preemie-related products, support meetings, and a host of others.
Each organization in our network is led by a parent who has experienced the trauma of preterm birth and/or loss. This firsthand knowledge of what parents need to survive can only be truly understood if you’ve been through it yourself. We are each driven by a passion to try and help another family make sense of a situation that we could not make sense of ourselves. These parent leaders have taken the love they have for their own children and continually pour it into these new families, most of whom are perfect strangers. In the United States alone, over half a million babies are born preterm every single year, leaving millions of parents feeling scared and helpless. Thanks to our growing network of organizations we hope our members will hear less of “We wish we had found you sooner” and more of “We are so thankful we had you from the beginning.” In the book Kisses from Katie, Beth Clark writes: “I’ve noticed something about people who make a difference in the world. They hold the unshakable conviction that individuals are extremely important, that every life matters…They aren’t determined to revolutionize the world all at once; they’re satisfied with small changes. Over time, though, the small changes add up… they teach small lessons that can bring incremental improvement to one man or woman, boy or girl.”
That is what each of us is striving to do – to make life a little better, one family at a time. By working together, our members will continue their individual missions while compounding our efforts exponentially across all boundaries. I hope our parent leaders will also recognize this as an opportunity to heal their own hearts and uncover the answers to their “Why?”, just like I have.