A special contribution by One SMALL Step host Samantha Kalasek
Once upon a time, there was a "boy mom" blessed to be outnumbered. She believed she was living a very basic tale until she turned the page and realized it was actually a choose-your-own-adventure story.
I remember finding out I was pregnant with baby boy number three. It was the week we planned to leave for the Dominican Republic, and I had to stay home due to the Zika virus. There was no way I would risk anything happening to this miracle baby. I worked so hard getting pregnant with my first two sons that finding out I was pregnant with number three without trying was a complete shocker. I just knew this was God’s special gift for us. Upon finding out it was another boy, I definitely had some strong feelings. I was afraid he would be overlooked as “just another Kalasek boy.” I was afraid no one would be as excited about him as they were about his brothers — same ol’ same ol’, right? Ha! If only I knew then that this little boy would be quite the showstopper.
I remember the day so vividly. It was about a month before my due date, and I just felt “off.” Paxton was moving less than usual. So I went to the hospital and was hooked to the fetal monitor. Sure enough, I had a contraction while I was hooked up, and Paxton’s heart rate dropped and didn’t go up quickly enough for the doctors’ liking. I was induced, contractions started, Paxton did not tolerate them, and suddenly everything moved very fast. I was rushed to the operating room while my husband trailed behind. He was not allowed in the room, as they had to get Pax out of me ASAP. Paxton was born at 4 lbs. 3 oz., with an Apgar score of 9, perfect in every way.
A few days later, Paxton still wasn’t waking up, he wasn’t crying during blood draws, and he wasn’t moving at all. I remember hearing nurses whisper that something wasn’t right. I remember walking down the NICU hallway crying, even before I got to his room, every single day. Each day was a new test with new worries. Once we had exhausted every physical test possible, we were introduced to the world of genetics. Due to his low muscle tone and undescended testicles, we heard the words for the first time: “Prader-Willi syndrome.”
I chose to live in La La Land until someone proved me wrong, but my husband, Brian, immediately went to the web to see what it was all about. Bad idea. Very little hope comes up when you Google PWS. I remember being numb, scared, angry, and everything in between. When the diagnosis was confirmed, we felt everything all at once — fear, heartbreak, relief that there were answers, and an overwhelming sadness mixed with love.
Mourning the child you thought you were having while rejoicing in the child you actually have at the same time is a really odd place to be. I remember my dad saying that he wasn’t worried one bit for Paxton because he knew we were amazing parents and would take care of him, and that his job as my father was to take care of Brian and me. That moment has stayed with me forever. I was Paxton’s mom, and my job was to be his number-one defender.
We were surrounded by incredible love and support from family and friends. I spent every single day in the NICU holding Paxton — arriving before his first feeding in the morning and staying until Brian came in the evening so I could go home and spend time with my other boys. Paxton barely opened his eyes, so I couldn’t dream of him not seeing my face if he happened to open them at any moment. We felt so lucky that at the end of all of this, we would still be bringing home a baby. Paxton’s name means “peace,” and that’s exactly what he gave to us.
Brian and I had many long conversations during our time in the NICU. Through the tears and fear, we always came back to the same place: Paxton would get the best doctors, the best treatments, the best therapies, and endless love. We chose to surround ourselves with an amazing medical team and an incredible community, and we jumped headfirst into the world of PWS, both locally and nationally. We chose to go on this adventure full speed ahead.
Dream, Believe, Achieve
One of the moments that truly helped shape our mindset was attending an FPWR Conference, themed “Dream, Believe, Achieve.” That theme resonated deeply with our family and became a guiding light in how we approached Paxton’s diagnosis and future. The conference was empowering, hopeful, and filled with families, researchers, and advocates who believed in possibility. We left feeling educated, encouraged, and surrounded by people who saw strength and potential where the world often sees limitations.
From day one, we believed Paxton was special. We celebrated the tiniest victories — the first time he lifted his head, the slightest movements, the least progress that meant everything to us. Today, he continues to work tirelessly to overcome every obstacle in his way. While it’s hard knowing he has to work harder for things that come naturally to others, he has taught us to slow down, notice, and celebrate every moment. There is so much beauty in what we often consider simple — and each milestone, every “inchstone,” deserves applause. Inches add up to miles, and everyone needs cheering along the way.
Paxton never gives up, and he continually amazes us. His brothers adore him, and he is shaping them into more compassionate, patient, and understanding humans. As a family, we continue learning how to best support not only Paxton but the entire PWS community. The people we’ve met along this journey have been our advocates, our educators, our support system, and our inspiration.
We truly believe that many of the challenges of PWS won’t be challenges forever. The research, trials, and dedication of passionate doctors and scientists give us hope. Our dream for Paxton never changed with his diagnosis — it simply evolved. We dreamed of a child who felt loved, supported, confident, and secure in the world, and that dream continues to grow.
Sometimes the things we can’t change end up changing us. Paxton has rewritten the story we thought we were living, but in doing so, he has shown us strength, perspective, patience, and a depth of love we never knew possible. He has added layers of meaning to our lives that we never could have imagined.
