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When You Feel Like You're in the Stormy Ocean of Your Child's Illness, Remember This


Kelley and Jayce smiling
Kelley and her son.

Everyone always says to appreciate the moments you have with someone, because they can be gone before a tear even hits your cheek.

This has been multifaceted  to me for as long as I can remember. I never wanted to envision a day without my parents. So I didn’t. It seemed too big and too painful to fathom. I was right. Millions of times worse than I could have imagined.

I have a beautiful family of my own. A sweet wonderful, handsome (very, very handsome) husband who works his fingers to the bone for us. He is the most devoted Daddy. I have a step daughter who I’ve watched grow into an adult. I fell in love with her first, guy aside. We got married and had a beautiful, precious cub. Jayce. My sweet, smart, fierce, fragile, breathtaking boy. He has Dravet syndrome. It’s like trying to be a mother to the ocean. So complex. So powerful. So crucial. And so wise. And quiet. And already he holds the experience of many lifetimes. A million little ecosystems in that body, not always working in harmony. The storms can be violent. Those waves can take his life. We can’t control the ocean. Just roll with the ebb and flow. I can do my part in protecting the environment and climate.

But I can’t think like that. I can’t focus on the tsunami and miss the days where the water is smooth. It’s hard to look for tomorrow and appreciate today. It’s hard to fight for that every day and to savor it. But I have boatloads of hope. It’s all I have. My fleet travels this ocean.

I know a lot of other oceans. Every one is breathtaking and unique. I know those mothers trying to shoo the clouds away. The distress flares are glowing. The water may seem choppy and the waves are just coming in too hard and too fast.

Look farther.

Look. Look for one of those boats.

It’s there.

Hope floats.