The last 16 hours of life have been chaotic. We had our church festival where Riley was giving tours of the sanctuary, a Miracle minute fundraiser at the DC Hawks football game, 4 trips to Wal*Mart including one at midnight, a trip to Kroger, a lot of counting pennies, the ACT this morning and a trip around town emptying our Riley buckets and in five hours, Riley’s last high school dance marathon and presumably, my last dance marathon as “admin”. I’ll admit, I’ve been frazzled.
As I was driving home from Anderson orchard this morning, I found myself pulling in to the perfect place to center myself and remember what today is all about, a place to visit the memory of our family’s first Riley kid...my brother John’s grave.
John’s visits to Riley Hospital were to the Cerebral Palsy clinic. I see shadows of his experience every day in the hundreds of children walking, running, rolling and being carried through the halls of the RIley Outpatient Center.
And as I sit here in front of 7 Riley buckets with cookies in the oven and a pot of chili on the stove all ready to go in the car, and a list a mile long including a trip to the bank, I center on two memories of our own Riley experience.
1. The first trip up the elevators and into the NICU where I was about to finally come face to face with the amazing human that Rick and I had created. She was 24 hours old, impossibly tiny, painfully fragile and 100% perfect. My emotions were all over the place but three stick out. Hope because I knew she was in one of the best hospitals in the nation and , Faith in God and that the staff there would treat her like their own and pure Love.
2. The moment Rick and I stood in front of the elevator on the 3rd floor with Riley in her car seat, ready to face the world. I remember turning to look behind me as we stepped onto the elevator, saying goodbye to the only world she had known for the past 90 days. Once again, I was full of emotions. And if I had to pick three, they would be Hope for her future, Gratitude for the care team who had given me my world and pure Love for my little family, the people who had supported us in our journey and those who had made it possible for us to make that trip home.
This marathon today isn’t about earning wagons, making the perfect pot of chili, Rice Krispie treats or finding the right marker to make reveal signs.
It’s about the kids. It’s about their families. It’s about kids past, present and sadly, future. It’s about prematurity, Down syndrome, diabetes, spina bifida, childhood cancer, 5p minus, cerebral palsy, infectious disease and the other hundreds of issues that cause families to walk those hallowed halls. It’s about memories, laughter and tears. It’s about goodbyes whether for a night, a surgery or forever. It’s about treatments and cures. It’s for the kids.
As I was driving home from Anderson orchard this morning, I found myself pulling in to the perfect place to center myself and remember what today is all about, a place to visit the memory of our family’s first Riley kid...my brother John’s grave.
John’s visits to Riley Hospital were to the Cerebral Palsy clinic. I see shadows of his experience every day in the hundreds of children walking, running, rolling and being carried through the halls of the RIley Outpatient Center.
And as I sit here in front of 7 Riley buckets with cookies in the oven and a pot of chili on the stove all ready to go in the car, and a list a mile long including a trip to the bank, I center on two memories of our own Riley experience.
1. The first trip up the elevators and into the NICU where I was about to finally come face to face with the amazing human that Rick and I had created. She was 24 hours old, impossibly tiny, painfully fragile and 100% perfect. My emotions were all over the place but three stick out. Hope because I knew she was in one of the best hospitals in the nation and , Faith in God and that the staff there would treat her like their own and pure Love.
2. The moment Rick and I stood in front of the elevator on the 3rd floor with Riley in her car seat, ready to face the world. I remember turning to look behind me as we stepped onto the elevator, saying goodbye to the only world she had known for the past 90 days. Once again, I was full of emotions. And if I had to pick three, they would be Hope for her future, Gratitude for the care team who had given me my world and pure Love for my little family, the people who had supported us in our journey and those who had made it possible for us to make that trip home.
This marathon today isn’t about earning wagons, making the perfect pot of chili, Rice Krispie treats or finding the right marker to make reveal signs.
It’s about the kids. It’s about their families. It’s about kids past, present and sadly, future. It’s about prematurity, Down syndrome, diabetes, spina bifida, childhood cancer, 5p minus, cerebral palsy, infectious disease and the other hundreds of issues that cause families to walk those hallowed halls. It’s about memories, laughter and tears. It’s about goodbyes whether for a night, a surgery or forever. It’s about treatments and cures. It’s for the kids.
So this is it. The beginning of our senior lasts. In seven hours, our IUDM friends will reveal the total of a year’s worth of hard work. It’s a tangible number, but there’s no way to put a price on how many lives have been and will continue to be changed by the dedication of a very determined survivor.
My last ask...I’ll put her link in the comments. Donate for a Riley kid. Donate for a healthy kid. Just donate if you can.
And people donated....
In the end, she raised just over $5100 and her team raised $6300.
I found this picture of John and the look of adoration on his face is priceless.
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