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Weathering the Storm – A Mother’s Story

Written by: Sara Grosso

My name is Sara Grosso. I am the mother of Grayson Grosso, who was diagnosed with Prader-Willi syndrome at just one month after birth. He is a thriving two-and-a-half-year-old boy now and it has taken me nearly his entire life to put his story into writing, because, frankly, it makes me extremely emotional. As a young, first-time mother, his entrance into the world was traumatic. I have put this writing to the side countless times, neglecting it for months at a time because I have to muster up the courage to continue to allow myself to go “there”, that painful place in my soul. I began penning out his story to release the mix of emotions stirred by his birth, to heal, and to serve as an explanation to him one day of my love for him.

I felt compelled to share my personal account in the hopes it would find its way to as many families of children diagnosed with PWS as possible, particularly, new families within the PWS community, to let them know there are others out there who know the storm and can attest to the fact that they will find a way to weather it, in spite of any obstacles that may be looming ahead.

Thank you for taking the time to read Grayson’s story.

While in college, years ago among a group of elementary education peers during a discussion about the reasons I had chosen not to minor in early childhood or special education, I was asked what I would do if I was faced with raising a mentally impaired child.

“Give it away.”

Ugly words spoken jokingly, but there was a fragment of truth hidden in them. How would a cognitively or physically impaired child reflect on me? A child with special needs did not fit the image of perfection I was striving for my future.

The guilt I felt for my selfish remark was brief; after all, what were the odds? Maybe the odds weren’t much higher than winning the lottery and I had never won the lottery before.

3,952,841 babies were born in 2013…

In 2013, I would be sitting pregnant on an examination table while my midwife asked, “Would you like to do screenings for Down syndrome or other defects? …Or would it matter?”

“It wouldn’t matter.”

I was struck with guilt again for my gilded words. It would matter! I wanted a picture perfect family. But after all, what were the odds?

For days I sat in in the dark on the only piece of furniture in my son’s NICU room; a cold, hard, plastic recliner. Tere was no television, so I watched the screen of his monitor and worried. I would stare at its flashing neon numbers until the colors bled together and its rhythmic beeping created a deafening silence that allowed me to slip away into the darkest corners of my own mind. More selfish thoughts, the most disgusting “what if’s”: What if I had opted for screening? What would I have done with the results? I can’t bring myself to write out the options, but I am telling you, in the days between his birth and his diagnosis, my imagination painted vivid pictures of each scenario. I have never felt more guilt than admitting the places I let my mind wander in time I spent alone with him at the hospital.

…150,000 of them born with some form of a birth defect.

Nearly two weeks earlier I had given birth to an adorable and seemingly healthy little boy, only to be readmitted to the hospital at his first check-up just a few days after being home. Why wasn’t he eating? Why was he floppy and lethargic? All of a sudden, he was undergoing a series of genetic screenings. We had been given a list of possible diagnoses, all of which were terrifying.

I was caught in a bizarre time warp where I felt as if life was moving in fast forward, but time was dragging. Worry was wreaking havoc on my resolve. I had done most things carefully and purposefully in preparation for the future only to realize – It. Meant. Nothing. I had no control, and was left only with this huge question mark looming over the future. And grief. Overwhelming grief. I was able to kiss his warm face and see his heart beating on the monitor he was connected to, but I was grieving him; or at least, the idea of him, the dreams I had for him, in the way you would grieve a loved one’s passing.

I remember once, after being transferred to the PICU, I left Grayson’s room to make room for visiting family. I crossed the waiting room between the NICU and PICU in search of coffee, when a televised sermon caught my attention. The sermon was based on the power of positivity. The message was essentially: The will it requires for one to choose positivity in the face of adversity creates feelings of power and strength within. These feelings of control, in turn, generate peace for the soul.

The preacher’s words resonated with me.

Several more days passed. Visiting family and friends came and went but I stayed. It didn’t matter who came to visit or for how long, I always felt alone. I was trapped inside my own mind pondering the outcome of the screenings that would have us in a three-week long limbo as we anxiously awaited an answer.

0.5% of newborns have a chromosomal abnormality.

I had taken to watching videos on the Internet to entertain myself between Grayson’s feedings. I must have watched a video of Paul McCartney seated at a glossy black piano singing “Let it Be” under a single stage countless times over the next several days. When we were alone, I would cradle my baby in my arms and sing this song to him, my tears falling on his forehead, running along the contour of his nose, and getting caught by the barricade formed by the NG tube taped to his cheek.

He flat out wouldn’t eat for anyone but me, and feedings weren’t a cakewalk; he had no sucking reflex. Six. Nine. Noon. Tree. Six. Nine. Midnight. Three. His hour-long feedings took place every 3 hours. What he didn’t drink from his bottle was pushed through his NG tube. I would pump between his meals, which left enough time to eat quickly, but little time to rest. I didn’t dare close my eyes in fear of sleeping through a feeding despite being worn ragged. He was required to be able to drink an 80% minimum of his bottles without it being pushed through the NG tube before doctor’s would even entertain estimating when we could take our baby home. He didn’t do nearly as well when nurses fed him and I couldn’t stand the effect those feedings would have on his discharge, so I lived three hours at a time.

The stress, lack of sleep, and lack of eating made me nearly unrecognizable. I was skeletal and my hair starting to fall out in large clumps. I stayed at the hospital, only leaving between early morning feedings to venture over to my room at the Ronald McDonald House to grab a change of clothes and snacks for the next day or to do Grayson’s laundry.

Normally, I did as advised and took the shuttle that ran between the hospital and the house. Large cities aren’t notorious for being the safest of places at the hours I was traveling, but on one particular night, I decided to brave the city streets. I knew it could be dangerous, but the air was fresh and it was quiet. I weighed my options and I decided my sanity needed the stillness more than I needed safety.

As I walked the lit path through the hospital playground, I found myself humming Te Beatles.

Let it be. Let it be. Let it be. Let it be.

There will be an answer. Let it be. Suddenly, the events of the last month shifted sharply in to focus. Each passing day was bringing us closer to an answer whether we were prepared to accept it or not. I chose in this moment to embrace that answer rather than spend another second being fearful. I chose to trust that whatever diagnosis we were faced with, it was purposeful. There was a reason I was given THIS little boy! We were made for each other! This pairing was no accident; it was carefully orchestrated! I was left with chills from my revelation and peace filled my soul. A huge weight, the fear of what was to come, had been lifted from my shoulders and my heart was changed.

The next morning, we received Grayson’s diagnosis.

1 in 10,000 babies are born with Prader-Willi syndrome. That is equivalent to less than 1%.

Grayson has proven himself to be a resilient and determined little boy fueled by curiosity. And his personality… It’s breathtaking! Honestly. He has this infamous head of curly, wild hair, an ornery, infectious smile, and shrieking laugh that turns strangers into friends in a matter of seconds. He’s sweet and silly… and stubborn! He just has this way of lighting up an entire room.

Did we hit the “jackpot” genetically?

No.

Being a parent of a child with PWS is hard. Being a parent of a child with any disability is hard.

But that falls to the wayside because we are blessed beyond words in so many other ways. His existence has enriched life to an unimaginable magnitude. I have quickly moved beyond paying much attention to what the odds tell us; they will bury you if you allow them to. I have stopped mourning the life he would have without this genetic disorder, simply because he is too beautiful inside and out not to admire. I am so grateful for the way his uniqueness has opened my heart. There is not a day that goes by that I don’t wake up in a world completely saturated in pure love and happiness because, somehow, through this crushing game of numbers and percentages and odds that we were forced into, he was entrusted to me.

Today, we are not just surviving; we are thriving!

I never knew I could find so much love and joy in “winning” at a seemingly luckless lottery, but he is mine, and I feel as if I have won the jackpot.

 

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