Hand to Hold's Official Blog: Written by Parents for Parents

This Road We Call Preemie Life

During the 29 weeks I was pregnant with my preemie, I tried to go for as many walks as I could. Those walks helped me feel so much better mentally, as well as physically. As I walked I would lovingly rub my growing belly, the weather growing colder as fall turned into winter, daydreaming about my baby. If I wasn’t daydreaming about my baby, and how amazing life with him would be, I was remembering my own childhood walks on this very same road. You see, the road I walked on was the same road I grew up on, and Lord willing, it will be the same road my preemie continues to grow up on.

However, all of that daydreaming was cut painfully short when we discovered at my mid-pregnancy ultrasound that my son had a cleft lip and palate. I no longer daydreamed. I worried and stressed about everything, including the surgeries he would need his first year and how the heck he was going to be able to feed. Then, when I developed severe preeclampsia and he had to be delivered 11 weeks early, my walks stopped entirely. And my worries increased exponentially. But once I knew he was going to be fine, and was healthy enough to come home 68 days later, I stopped worrying so much. Better yet, I started walking again. This time with my son in a stroller.

I began to develop a greater perspective on life because of everything we both had been through. Now, four years later, I am gaining an even greater perspective on preemie life. Yes, life in the NICU is best described as a roller coaster, but roller coaster rides eventually come to an end. Life after the NICU is best described as a road, I think. For some, the road is bumpy as hell, never knowing what is waiting around the bend. For others, the road is extremely rough, full of pitfalls and the ruts of constant disappointments. For me and my family, the road has been occasionally rocky, with some hills to climb, much like the actual road we live and walk on.

The latest hill we are dealing with is Autism Spectrum Disorder (ASD), which my preemie is currently being evaluated for. Although he still has significant developmental delays, it turns out his early, intense, interest in letters and numbers is considered a possible red flag for ASD. It is even more so now at 4 years of age because anything involving the alphabet is a highly preferred interest of his, almost to the exclusion of everything else.

ABC/Egg Hunt

It is also the reason why he can read many of the sight words that a first grader can. He also can identify all of the planets in our solar system and their individual characteristics. Yet, he cannot have an actual conversation with you about the things he likes. He just repeats the same words and phrases over and over again.

He is such a sweet and affectionate little boy, but he has an extremely hard time playing with other kids and prefers to play alone. That really breaks this mama’s heart to see! However, our hope is that by providing him with plenty of opportunities to play and interact with his peers he will one day be able to share a joke with a friend because he also has such a great sense of humor! Only time will tell.

Whatever diagnosis may or may not be in my preemie’s future, his teacher reminded me: Ben is still Ben. Label or no label. The diagnosis is simply so he can get the services he needs, and does not already receive, to help improve his social skills.

For all of us parents of preemies, the road we walk is not an easy one. Even if our preemies never experience any lasting impact from their early births, we parents will never forget those days or months they spent in the NICU. And yet we are never really promised that this road we call life will be easy, are we? What we are promised is that we won’t have to walk it alone. Just like my son needs a hand to hold when we walk our road because he tires very easily, we all need a hand to hold when we feel like we just can’t take another step. This is what Hand to Hold is here for. To help you when your road gets too tough. All you have to do is reach out your hand!

 

To find out more about how Hand to Hold can help you or someone you know, visit us at HandtoHold.org.

Beth Puskas About Beth Puskas

Beth Puskas (NY) is a children's librarian and has one child, Benjamin, born by emergency c-section at 29-weeks after Beth developed severe preeclampsia in 2013. Ben also was born with a cleft lip and palate. He came home after a 68-day stay in the NICU and spent the next year having his cleft lip and palate repaired. Despite a global developmental delay, Ben is a thriving, happy, toddler who loves to laugh. Beth hopes to use her experience to help other families.

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