“You can’t measure what my son has given back”: Laura’s Story

LauraColon

In the spring of 2008, I found out I was pregnant with my third child. Everything was boringly normal until the night of Nov. 19, 2008, when I was 34 weeks and 6 days pregnant. That evening, I experienced PPROM (pre-term, premature rupture of the membranes). My labor was induced and six pound, 8 ounce PuddinPie was born early in the next morning, Nov. 20, at 35 weeks. He was a large baby but had trouble breathing. Before breakfast, the NICU team from our local Level III hospital arrived, intubated him, gave him surfactant and transferred him to their hospital. Ten hours after having my baby, I walked out of the hospital with empty arms.

For the next nine days, I was thrust into an unfamiliar world, one where I could only watch my baby breath on a machine and eat via a tube down his nose. Although he was large for his gestational age, the neonatologists reminded us that he was still sick and “immature.” He was baptized at two days old and allowed to go home at nine days. We struggled even at home: he had a hard time gaining weight, so we were often at the doctor for weight checks. My husband worked long hours and I had two other children stuck inside since we couldn’t go anywhere due to RSV season.

I was wholly unequipped to be a parent to a preemie and, later, a special needs child. Everything we thought we knew about parenting had to be modified for this child who looked full-term and healthy but wasn’t. At the time, PuddinPie was the only preemie in our family and while they tried to understand my fears for his future, they were often dismissed because he was “only a little premature” and stayed “only a few days.” It wasn’t until he was two that we had, in writing, confirmation that there are long-lasting problems due to his early birth:  a severe motor planning disorder. He began intensive speech therapy with a skilled SLP. Shortly before he was three, he started preschool with our local Early Childhood Special Education team.

Those early years seem like a dream now; and, yes, sometimes a bad dream. I had a child who couldn’t speak and not much in the way of family support. PuddinPie had trouble falling and staying asleep, eating a variety of foods and often went into sensory overload in public. People would see a “normal” child and couldn’t understand why we “gave in” and “spoiled him.” In reality, we were just using therapy tools to help him grow and navigate the world. I had friends but was still isolated.

The best thing I did for myself and my family was to get help- for me and him. I was open and honest with my doctor about my struggles. Working with him, I found a therapist to talk to and began to take anti-depressants. I learned how to deal with my mental health and sought out fellow NICU moms to talk to. I learned how to not listen to those people who called me a bad parent and found people who understood. Sometimes, they came in very unlikely forms.

It’s been six years since PuddinPie’s birth.  It’s easy to count what my son has cost society: hundreds of thousands of dollars in NICU bills, special vaccines, therapy and a special needs preschool all funded by the state. There’s time spent on the phone fighting with insurance, driving to and from therapy, and the stress a special needs child has placed on our family. I lost my job at the YMCA due to his premature birth (and filed a formal complaint because of it). Thankfully, my husband has a well-paying job because, until recently, I’ve been unable to work in a steady capacity. Yes, my distressed son has cost us, and society, a lot of money.

But what you can’t measure is what he has given back. Because of his NICU stay, we coordinate a NICU Thanksgiving every year. I’m a lot less judgmental of… anything. My husband and I know how to help when a friend has a baby in the NICU. A few years ago, a friend sent me a message to say that because of our story, she now donates to the March of Dimes. I’ve written articles about the NICU. I’ve talked people through a NICU stay and I know the value of a listening, understanding ear is priceless. Perhaps the best gift is our ability to look beyond wires, tubes and monitors and just see… a baby. Not a distressed infant, not someone clinging to the edge of life, not millions of dollars in bills but a sweet little human. Most of all, we all learned about deep, unwavering, unconditional love.

This year, PuddinPie was in a mainstream kindergarten class with only pull out services. He talks and most people can understand him. He takes TKD, plays baseball and the piano with his typical peers. He has friends and his siblings see him as nothing more than a (sometimes annoying) brother. After not working for six years, I am finally back on deck with a local swim team and my husband has to spend less and less time fighting with insurance companies (because they are finally paying for his therapy). When people first find out about his early birth, they often ask, “He’s fine now, right?” I don’t know how to answer. I don’t consider him unscathed. I do consider him a miracle in the way that every life, no matter how “distressed,” short or seemingly imperfect is a miracle. If anything, this whole journey has taught us that life doesn’t have to be full-term, perfect or typical to be a life worthy of… life.

-Laura

Photos by Blessed Life Photography