What a family vacation taught me about gratitude and PWS

Splashing around in the pool at a resort in Florida, our 1-year-old son, Ellis, was having the time of his life. He was all giggles as I pretended his infant pool lounger was a speedboat, jetting him through the water and spinning him in circles.

“Three … two … one … GO!”

Cue the speedboat noise and his infectious giggle as he glided through the water at what he clearly believed was record speed. Any time I’d stop, he’d put his hands in front of him on the floaty and rock his body back and forth in protest, insisting on speedboat. So I’d count down again, both of us grinning ear to ear.

Meanwhile, my brother, Trenton, and his son were playing next to us, bobbing and splashing. My nephew, who is two months younger than Ellis, is a very active little guy who kicked through the water with ease. I wouldn’t be surprised if he ends up swimming before he’s fully walking.

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This was the first time Ellis and my nephew met. My brothers and their families live in Tennessee, while we’re in Ohio. We all met up for a long weekend to celebrate Trenton and Jill, my future sister-in-law, ahead of their wedding this fall.

Still in the pool, Trenton and I eventually swapped kiddos. He pulled Ellis around like a speedboat, while I played “whirlpool” with my nephew, holding him under the arms and spinning him in circles until we were both dizzy. I couldn’t help but notice his muscle tone and how strong he was, kicking and squirming against my grip, and asked Trenton if he’d taken swim lessons. He hadn’t, other than trips to the pool they’d taken together. I was amazed.

Later that evening, while back at the condo getting ready for dinner, Ellis was munching on his chewie toy, entranced by “Rescue Riders” on TV. My nephew crawled around the room, pulling himself up and walking along the furniture, stopping every so often to grab a puff snack or a drink from his sippy cup.

My husband, Jamie, and I have embraced “running our own race” as a family mantra, given that both of our kiddos live with Prader-Willi syndrome, and our 4-year-old daughter, Emerson, is on the autism spectrum. So our frame of reference for milestones looks a little different. However, there are still moments when intrusive thoughts creep in, and I catch myself comparing.

Standing in the kitchen prepping Ellis’ gastrostomy tube feed, this was one of those moments. He’s not yet able to tolerate liquids as he’s still building his swallowing muscles. I looked over at him, lying there watching TV, still too wobbly to sit unattended, let alone sit up and play with my nephew the way two 1-year-olds usually would. I let myself feel the grief for a moment, right there at the counter, then finished getting his food ready.

Everyone has their hard

After getting Ellis hooked up, we walked down the street to the restaurant, both kids napping in their strollers. On the way, Trenton and I talked about my nephew’s hyperactivity. He’s currently going through a phase where he’s showing some aggression when playing, as well as some big emotions and anxiety when his mom is nearby but not holding him. He and Jill explained how exhausting it can get, and I empathized. While my kids haven’t experienced those specific challenges, they’ve had their own that were both exhausting and worrisome.

No sooner had we sat down than my nephew woke up, hollering with tears streaming down his face. He often did this on waking and usually settled within a minute or two. Five minutes later, he was still going, and it was clear something was wrong. Trenton and Jill took him outside. Trenton came back right as Ellis woke up and finished his tube feed. It turned out that Jill’s coffee that morning at the airport had been made with whole milk, and my nephew has cow’s milk protein allergy, which wrecks his stomach. Unfortunately, Jill spent most of dinner outside consoling him.

I moved Ellis to the high chair and ordered him something new to try: mashed potatoes. He made a face at the texture but kept coming back for more. He did great. I was so proud of him.

As he took his last bite, another feeling washed over me: gratitude, for my happy little guy rocking in his high chair, tolerating a new food. That gratitude has stayed with me ever since — for the experience Ellis and I had playing speedboat in the pool and the pure joy he felt, for my strong, playful, healthy nephew and his devoted parents, and for the love, adoration, and compassion our family wraps around these kids.

We all have our hard. Each kiddo has their seasons. But there is always so much to be grateful for.

Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.