Ten years ago today we attended a Wish granting party in honor of our daughters, Alex and Emma. Having been diagnosed with Pantothenate Kinase Associated Neurodegeneration only months before, our girls were referred to the foundation for a wish and in a matter of weeks, we had been vetted through the proper medical records and doctor recommendations. We were then visited by volunteers who sat with our girls and helped them brainstorm what they would wish for.
When asked what she wanted more than anything, Emma’s answer was, “A bouncy ball.” We all laughed, brought her a bouncy ball she already owned, and then the volunteers helped her dream big, offering suggestions and encouraging her to dream up the most amazing thing she could imagine. Her conclusion was neither original or unexpected, but it was amazing, indeed. She wished to see Mickey Mouse. To this day we wonder where Alex came up with her wish and Drew and I both vehemently deny any leading because it would have never occurred to either of us. She wished to swim with dolphins. The wishes were submitted and then there was the party.
Honestly, the attention of a party made me uncomfortable, but in retrospect I can see the beauty and significance of such a celebration. Our family was used to living a life that was a bit different. We knew our life was more involved than that of a typical family with a four-year-old and a seven-year-old. Our days revolved around their doctor visits, medications, accommodations, and therapies, but it was all we knew. Our girls were cared for, loved, and, perhaps most notably, they were happy. Still, our life was far from normal. We were accustomed to people noticing us for all the reasons that made us different.
That party- the one with balloons, cakes, presents, photographers, friends, family, and strangers- made Alex and Emma special instead of different. They were the celebrated guests of honor and Drew and I stood with them as the volunteers made the official announcement that their wishes had been granted and that the very next week our family of four would be on a plane to Florida.
We went home that day tired, overstimulated, sugared up, and over the moon excited for what was ahead. For the first time in a long time, we all went to sleep that night in anxious anticipation of the good things ahead and not just the worries of a medically fragile future with a rare, genetic, progressive, terminal diagnosis.
The next week our family was greeted at our local airport by those same volunteers who hugged us and then handed us everything we would need for our magical vacation. You guys, I don’t use the word “magical” lightly. Magic is exactly what it was.
From our greeter at the airport to the welcome team at Give Kids The World Village to the comfortable cottage that was our home for a week, it was magic.
From princess makeovers to Minnie Mouse hugs to fireworks over Cinderella’s castle, it was magic.
From passes that allowed us to skip lines to quiet rooms where the girls could receive their medications and take a break, it was magic.
From tours around Sea World to the tiny little wet suit that clothed Alex as her dream of swimming with dolphins came true, it was magic.
Drew & Alex after her dolphin swim
From room service at the cottage to fancy dinners out to daily boxes of snacks left on our doorstep, it was magic.
From the volunteers to the Disney cast members to the friends and family who altered their own vacation plans to cross paths with ours, it was magic.
For 10 whole days our girls got to be special, not because they were dying, but despite it. They were treasured and catered to and accommodated. My mama heart was stretched and, in the name of letting it be magic, I learned to take a deep breath and let others serve us.
It was beautifully, blessedly, extravagantly magical and I’ll never forget it.
Drew and I have made it a point to contribute to the Make-A-Wish foundation periodically in the years since our girls died. Someday we hope to write a check or make a grand gesture that will cover a week of magic for a special child and their family. Until then, we sometimes pop over and make a small donation. Does $5 or $10 send a kid to Disney or build them a dream tree house? Nope. Does it fly their family to a tropical destination or makeover their very own room? Nope. But it might leave a snack on their doorstep or buy a souvenir or cover the balloons at their wish granting party and for that it is our honor to contribute. Today, on the ten-year anniversary of a very special wish granting party, we’ve done just that. We made a small gift in honor of our brown eyed Alex and our blonde headed Emma. If you’d like to do the same, I invite you to do so HERE and if not, that’s okay. Maybe you could stop and say a prayer for a family that you know or even a family that you don’t, a prayer that for even for a moment they would feel as treasured, special, and magical as our family once did.
For more stories of standing happily in the awkward middle of life, love, and parenting, follow Happy Like This by Mandy McCarty Harris.
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