My bucket list is quite small.
Play catch with Bo Jackson.
Play catch with Alex Gordon.
Throw out a first pitch for the Kansas City Royals.
Hit a hole-in-one.
Skydive.
Skylar’s bucket list is simply astonishing. More than half of the hundreds of items are completed which says a lot for the 12-year old. Already, Skylar:
Attended a sleepover.
Went camping.
Got her driver’s license.
Ran a half marathon.
Got a tattoo.
Attended a professional baseball game where she met Derek Jeter and Mark Teixeira.
Went to the beach.
Petted a dolphin.
Threw out the first pitch at a baseball game.
Visited the White House.
Some of the uncompleted items on her list include:
Inventing something.
Breaking a world record.
Being on a TV Game Show.
Meeting Ellen.
Having a song recorded that was written about her.
Publishing a book.
Teaching the world about Schizencephaly.
My nephew, Henry (Day #119), also has Schizencephaly. I know about the incredibly rare disorder.
Skylar’s manifestation of Schizencephaly is extreme. Literally missing parts of her brain, Skylar has been in and out of the hospital her entire life.
“We see doctors multiple times every month,” Lindsey said.
Skylar is unable to talk or walk. Lindsey, her mother, has documented their journey on a blog called “Sky’s the Limit for Skylar” in which she details the joys and struggles of parenting a child with special needs. In recent weeks and for the second time in her life, Skylar has been placed in the care of Hospice. This fact has only served to increase the intensity in completing items on Skylar’s bucket list.
Katy, my sister, and Lindsey work in the same hospital system, which is an incredible instance of It’s-a-Small-World given the rarity of Schizencephaly diagnoses. All three families met at Curtis Walker Park so I could play catch with Lindsey and Skylar.
“I’ve played softball my entire life. We’re up for a game of catch,” she said.
In the shade and in the thick dew and in the heavy humidity, Lindsey and I played catch. Henry quickly joined in as did Skylar’s younger brother, Sawyer.
“When Skylar went on Hospice the first time, probably four years ago or so, I was thinking of something we could do to make memories together. I started by writing grand things down and kept thinking. People don’t understand that when you have a child with special needs, there are so many things she will never get the chance to experience on her own. I wanted her to have all of the experiences.”
Lindsey is quite competitive and played in an adult kickball league for years. She has been a big fan of the New York Yankees her whole life. A couple years ago, they made the trek to New York where the team rolled out the red carpet, introducing them to players and putting them up in a suite after a ballpark tour.
“Skylar loved the bright lights of New York, seeing Times Square at midnight and Aladdin on Broadway. Derek Jeter even signed a ball for her.”
Lindsey and Skylar still dream of going to Hollywood and Disneyland and meeting Ellen. They’d love to be part of a scavenger hunt and have a street named after her. Last year, Skylar was supposed to be in a play at the high school, but was hospitalized when it was being performed.
“Even though Skylar is non-verbal, she is able to connect with kids and adults. She has her own way of communicating. Some people see her and just see the wheelchair and medical issues. But there is so much she can teach us, so much we can learn from her. She has so much fight and a huge will to go and do things.”
I handed Skylar a baseball and knelt down in front of her. She threw it past me. I think I saw her smile. Lesson learned. I moved back a few steps.
I have been beyond impressed with the publisher of Dreamfield. Megan and Steve have done a fantastic job growing the new company, 50/50 Press. Multiple friends have also been published by them — Aaron (Day #203), Daniel, and Melissa just to name a few.
Thanks to the ridiculously quick work of Megan, in the next few weeks, Skylar’s dream of publishing a book will come true. I’ll be sure to post updates when the book is published.
“Love makes all dreams possible,” Lindsey said.
Update:
Ten days after playing catch with Lindsey and Skylar, the book was a reality.
