'We Believe There Will Be Relief For Children With PWS': A Mom's Story

A special contribution by One SMALL Step host Samantha Kalasek

we-believe-there-will-be-relief-for-children-with-pws-a-moms-story-1.jpegOnce 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 withnumber 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 show stopper.

we-believe-there-will-be-relief-for-children-with-pws-a-moms-story-3.jpegI remember Sunday, September 18th, vividly. It was a month before my due date, and I just I 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 all hell broke loose. I was rushed to the operating room "Gray’s Anatomy"–style while my husband trailed behind. He was not allowed in the room, as they had to get Pax out of me ASAP and knew he wouldn't want to see me intubated, etc. Paxton was born at 4 lbs. 3oz., with an Apgar score of 9, perfect in every way.

Three days later, Paxton still wasn't waking up, he wasn't crying during blood draws, 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 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. Horrific prognoses and pictures appeared. I remember being numb, scared, angry, and everything in between. I tried to keep it at bay until, on Paxton’s two-week birthday in the NICU, it was confirmed that my baby boy number three did indeed have Prader-Willi syndrome. By this time, we had received up-to-date information and had been directed to the correct websites and organizations. I remember cursing; feeling relieved, as we both knew that there were much scarier genetic disorders out there; and being so, so sad.

we-believe-there-will-be-relief-for-children-with-pws-a-moms-story-2.jpegMourning 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, that his job as my father was to take care of Brian and me. To this day, that has stuck with me the most. I was Paxton’s mom and my job was to be his number-one defender.

We were surrounded by such love and support from family and our close circle of friends. I felt sad for my other boys, as I knew their lives were about to change forever as well. So much of our daily “normals” would no longer be. Maybe not right away, but knowing that they would have to change so much of what they were used to someday was heart-rending. I spent every single day in the NICU holding Paxton. I got there before his first feeding of the morning and stayed until dinner time, when Brian would come up and I would go home to be able to spend a few hours before bedtime with my other boys. Paxton barely opened his eyes, so I just 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, and not everyone gets to do that. Paxton’s name means “peace,” and that’s exactly what he gave to us.

we-believe-there-will-be-relief-for-children-with-pws-a-moms-story-4.jpegBrian and I had a lot of conversations throughout the seven weeks we spent in the NICU. But between the tears, fears, and anger, we always agreed that Paxton would get the best doctors, treatments, therapies, and endless love. We flew to see Dr. Jennifer Miller (in Florida) the week we left the NICU. I remember her telling us how awesome he was and how great he was going to do. Set the bar high, she said; he will let you know if he can reach it or not. We surrounded ourselves with an amazing medical team and incredible family and friends, and we jumped headfirst into the PWS community both local and nationally. We chose to go on this adventure full speed ahead. We have been excited about Paxton since the moment he was born. Getting this diagnosis didn’t change that. It may have added some worries to our journey, but he’s the most perfect addition to our crazy, chaotic, boy-filled home. Brian and I quickly changed the “why us?” to “why not us?” and haven't looked back. Paxton chose us as his family, and we are blessed in every way possible.

Dream, Believe, Achieve

The theme of the 2017 FPWR conference is dream, believe, achieve. That resonates strongly with my family. From day one, we believed Paxton was special. The first months of Paxton’s life we celebrated the simple act of him just gaining enough strength and energy to move his head from side to side. Today, he is a rolling machine and works so unbelievably hard to get past each and every obstacle in his way. I still find myself cursing the fact that he has to work so much harder to do everything his brothers do without a thought, but he has taught us to stop and appreciate so much. There is so beauty in what we consider simple things; we should applaud not just each milestone achieved, but each “inchstone.” Inches add up to miles, and we all need cheering along the way.

Paxton doesn't ever give up, and he continually amazes us. My older two boys are over the moon with their baby brother, and Paxton will make them more compassionate and patient individuals as they go on in life. We are constantly learning ways to help not only Paxton, but the entire PWS community. They have truly been our biggest advocates, educators, support systems, and inspirations these past 10 months.

we-believe-there-will-be-relief-for-children-with-pws-a-moms-story-5.jpegI truly believe that many of the challenges of PWS won’t be challenges for long. The PWS drug trials and studies that are happening are so exciting. We believe there will be relief for children with PWS. Our dream for Paxton didn’t change when we got the diagnosis; we just added to it. We dreamed of having another son who felt loved and was just as happy as the other two, who found their place in the world and felt supported and safe. Our PWS dream is happening now. Treatments are being sought after, people are desperately working to spread the word about PWS and are fundraising for these passionate doctors and scientists to continue what they are doing for our community, and we are choosing our own adventure to embrace, advocate, and be changed by these kids who are true superheroes.

Sometimes the things we can’t change end up changing us. Paxton has definitely changed the course of the story we thought we were living, but I’m learning so much more about myself, what I am capable of, and my own boy mom superpowers. I’m so grateful for the revisions he has added to this tale.

Samantha and her family are co-hosting a One SMALL Step Walk in Omaha, NE. To learn about fundraising for PWS research, click here.

  

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Topics: Stories of Hope

Sarah Peden

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Sarah is FPWR's One Small Step coordinator. She became involved with FPWR shortly after the diagnosis of her daughter, Lily in late 2009. She first began fundraising through her “Running for Lillian” event where she and her friends raised funds for PWS research through peer-to-peer fundraising. Sarah joined the One SMALL Step team in 2012 holding her first of many walks in Bloomington, Indiana. Sarah has held multiple volunteer roles with our organization prior to joining our staff and was the chair of our Community Leadership committee from 2014-2015. She has more than 11 years of event planning experience with for-profit and non-profit organizations and hold a Bachelor of Science in Recreation with an emphasis in tourism, hospitality and event management from Indiana University.

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