Ali Foley Shenk shares about diving into the waves
Nine months ago, our second son, sweet Dean Thomas, came into our lives. Dean was diagnosed [1] with Prader-Willi Syndrome [2] at three weeks old, and it’s been a surreal journey that many of you parenting special needs children know all too well.
I’ve been having a hard time the past few days thinking about Dean’s future and how PWS will affect him as he grows. It’s easy to say that I should focus on the present, one day at a time, look at the positives. I know. I do that countless times a day, but sometimes it’s just too much. Let me explain.
One summer, years ago, when I was a kid, we were at the beach in New Jersey where we went on vacation most years. We loved being in the ocean and enjoying the waves which were bigger than anything we’d seen at home in Connecticut. I remember someone telling me that when the waves come in, NEVER RUN from the wave. If you do, it will clobber you. Instead, you should dive *into* the wave down below where it’s calmer until you can come back up and swim. I got pretty good at that and my cousins, parents, uncles, and aunts and I spent many hours in the ocean doing just that.
One day, a storm was on its way and the waves started to get big. They were bigger than I’d ever seen before. It was still nice out so we stayed in the water. I approached the waves and dove through 
[3]them. But then one wave came and it was so big. I froze on the shore and thought, ‘I can’t dive into THAT.’ I panicked, turned, and ran. The wave came over me, threw me down on my face where I swallowed a mouthful of saltwater and seaweed. Next thing I remember was a hand reaching down and yanking me out of the water. It was my mom. She got me out and I recovered back on the sand. It took a while to even realize what had happened. I was scared of the water for a little while after that.
So every day, many times over, we dive INTO the waves. Dive into the waves. Dive into the waves.
Related: Is Your Family Ready for Fun in the Water this Summer? [4]
Some of them are small and manageable, and some of them make my arm hair stand on end. Dive into the waves. Dive into the waves. And then sometimes, the wave just looks too big and too menacing and in fear, I turn and run. That’s when it clobbers me. But even then, I get back up, re-group, and eventually go back in. Dive into the waves. After all, we have no choice. We don’t get a day off from PWS. We don’t get to rewind back to the simpler days when we didn’t have a child with a disability. This IS our life. We are driven by love for our Dean, and for both of our boys, really. We must keep going.
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About Author: Ali Foley Shenk lives in Richmond, Virginia with her husband Bob and their three boys, Cole (4.5), Dean (3), and Emmett (14 months). Ali is a work-at-home mom doing freelance editing and writing, and has a blog about life with her boys: www.divingintothewaves.com [6]. Ali also volunteers with the Foundation for Prader-Willi Research, a group dedicated to funding a cure and treatments for Prader-Willi syndrome, which her son Dean has.
Photo Courtesy: Lisa Dunnivan
Read More: Real Moms Share [7]
You May Also Like
- What is Prader-Willi Syndrome? [2]
- Early Intervention: First Steps in the Right Direction [1]
- I Do Not like Being a Special Needs Parent and That’s OK [8]
- Coping with the Life You Never Imagined [9]
- Handling Your Child’s Diagnosis: Six Things Parents Should Do For Themselves [10]
- A Complete Guide on Positive Behavior Support for Children With Special Needs [11]
- Family Chat: Improving Lives with Positive Behavior Support (PBS) [12]
- 8 Ways to be a Great Advocate For Your Family Member With Special Needs [13]
- How to Get Free From Unrealistic Expectations of Motherhood [14]
- Father’s Perspective: Raising a Child with Special Needs [15]
- Daddy Loves You: A Reminder for Daddies of Children with Special Needs [16]
- Being United, Pampering, and Taking Care of Ourselves [17]
- Avoiding the Power Struggles with Your Child [18]
This post originally appeared on our May/June 2012 Magazine [19]