Everything and More: A Father's Journey Into the World of PWS

A special contribution by guest blogger Tony Chambers

When I was everything-and-more-a-fathers-journey-into-the-world-of-pws-1.jpg10 years old, I realized I was never going to see my dad again. He didn’t die, he just packed up and disappeared one day. I was 4 when my mom knocked on his empty apartment door wondering why he didn’t pick me up from daycare. I guess it took me a few years to realize what was going on. I grew up with everyone else’s dad and with my grandfather, who from a distance, had a huge impact as a male figure in my life. This is important to understand when it comes to being Daniel’s father.

I remember 13 years ago holding my oldest son, Isaac, as a newborn and instantly having no comprehension of how any parent could leave a child. I wanted to give this child everything! I wanted to hold him in the middle of the night when all I otherwise wanted was to go to sleep. I wanted to watch his wobbly first steps. I wanted to be “Dr. Dad” when an ouchie occurred. I wanted to see how wide his eyes could get the first time he entered a baseball stadium.

I wanted to show him classic movies, have the first awkward girl conversation, and watch him drive off for the first time. I wanted to give so much. Unlike my own dad, I was there on his 10th birthday when Isaac blew out his candles. I wanted to pass down knowledge and maybe one day watch him hold his new baby, hoping I instilled enough of my fatherhood and family values in him to where he would be bursting with love, having visions of late nights, bike rides, and baseball games.…

Nine years later, Daniel was born.

I sobbed when Daniel was born. He was perfect. It was a long labor. After 24 hours of labor and a c-section, I passed out on the “Dad couch” in the hospital room as soon as Daniel and Mommy were snuggled and sleeping. I awoke to three nurses in the room. One nurse was holding Daniel and whispering to the other nurse. Daniel’s legs were blue and they needed to take him away. My wife and I shot looks back and forth at each other — their trained calmness wasn’t fooling us. They came back less than an hour later and said his legs were improving, but he wasn’t eating. His arms and legs weren’t reacting to stimuli, and his eyes would sometimes roll back in his head.

For the next 28 days, we survived in the NICU, falling in love with this mystery who had just joined our lives. On day 24 of 28, they finally told us: “It’s called Prader-Willi syndrome.”

This was different from my experience with Isaac. My passion for being a father was the same, but there was a new feeling. This was something bigger than being a dad. I didn’t think there was any more room in my heart to want to be a father more than I already was. But until you have a child with special needs, you never really comprehend words like “perseverance,” “protection,” “bravery,” “strength,” and “love.” I knew I had to be everything and more to Daniel as a father, and in the past four years, I have discovered new heights in all of these feelings.

In four short years, I have held him in the middle of the night — while his feeding bag is changed. I have seen multiple first steps: moving his head, sitting up, first using a walker, and then walking on his own two feet. Although he can’t ride a bike yet, I have seen him FLY down the hill on our street on his plasma car, smiling ear to ear — with Mommy running very quickly behind him — me cheering at the top of the hill ready to get in trouble.

I have seen his eyes reach new sizes as the crowd at Busch Stadium roars. I have put so many Band-Aids on that noodly child’s legs that he thinks I’m really a doctor. What I didn’t expect was how much more I was going to experience as a father, and how I would see that although he may never be a dad himself, he is going to give more to our family than I could do in five lifetimes.

everything-and-more-a-fathers-journey-into-the-world-of-pws-2.jpgAt last year’s One SMALL Step event, Daniel brought together people who had never heard of PWS or knew who he was. Four other families of kiddos with PWS wandered onto the track that day to embrace us as family, only ever having crossed paths on social media, and some who never met us at all. Families of all kinds walked the track, played games, and read more than 20 signs we posted that explained who Daniel was and why they were there.

Daniel walked his first mile all by himself that day. As he finished his mile, almost 100 people were there to cheer for him, knowing the feat he just accomplished. It was an emotional day, an educational day, a proud day.

everything-and-more-a-fathers-journey-into-the-world-of-pws-3.jpgI stood back and realized, THIS is what he is going to do for people. He will be there as new families emerge, greet them with his soft voice, and help them take their first steps down the road of Prader-Willi syndrome. He will meet teachers and doctors who he will teach and inspire, helping them understand how to care for him.

He will watch people’s eyes get wide and cheer at the accomplishments he makes, proving that the boundaries of what we think our kids can accomplish are still being pushed and setting expectations for other kids to smash. He will pass down knowledge to his nephews and nieces that only he can share. He will always be there for me to hug in the night, to hold up on the hardest days, and to continue to show me, his father, that what I do for him helps carry on a legacy that will be remembered far beyond anything I could ever dream for him.  

Do you have a story of hope to share with others about your experiences with PWS? Send it to us!

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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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