How much time can we hope for Harper?
With the passing of 3 CDKL5 children in the past three months, and after our own scares over the last four years wondering how long Harper would actually be with us, we decided she was deserving of a wish come true; a once-in-a-lifetime wish that we simply were unable to provide for her.
If I had a tale that I could tell you
Harper is non-verbal and immobile. It is difficult to determine what HER wish would be. So, we laid in the floor next to her and stared at the ceiling. We spent time connecting to her; attempting to be her, or at least try to see and live in the world from her perspective.
We did not move, we did not speak. We were trapped in our own minds.
We thought long and hard, about what Harper enjoys.
Sunshine on my shoulders makes me happy
Then, a realization. Harper’s love is outside! She loves being under skylights, looking out windows, riding her pony with the wind in her face, swimming in the water with the sun beaming down, playing at the playground on slides and swings.
She LOVES to be OUTSIDE! Her wish would be to be outside, be it cold or hot, snow or rain, Harper wants to be OUTSIDE!!
Sunshine in my eyes, can make me cry.
Sunshine on the water looks so lovely,
Sunshine almost always make me high.
If I had a day that I could give you,
I’d give to you a day just like today.
If I had a song that I could sing for you,
I’d sing a song to make you feel this way
After some review of her life via photo and video we knew we had without a doubt captured what we believe to be Harper’s ultimate desire.
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- Harper on her horse
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- Harper smiling in the sun
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- Two of her favorites: “pony” and outside
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- Smile and slide!
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- Watching sister swing
At 2 minutes and 20 seconds in, she finally obeys my request. Stubborn little girl! But I think she makes her WISH clear.
If I had a wish…that I could wish for you
Now that we knew what Harper’s wish is, it was time for us to find an organization that could help us find a way to grant it. We were introduced to A Wish With Wings out of Fort Worth, Texas. They agreed to meet Harper and off we went.
After much discussion the question remained: we know what Harper’s wish is to be outside, but how are they going to make it a reality?
Their idea….an enclosed patio with lots of natural light, climate control to protect Harper during summer days, and a special swing built for an immobile child of Harper’s size. It needs to be a space large enough that she enjoy the space with her siblings or her nurse.
Wishes rarely come without challenges. Harper’s is a wish fulfillment not typical of their organization and one that has proven difficult to meet. It has been nearly a year since we started the process but Wish with Wings is committed to making it happen, despite the logistics and the need for cash funds to go along with the volunteer labor force they have in place.
I’d make a wish for sunshine all the while…
You can be a part of helping Harper’s wish come true with your 501(c)3 tax deductible donation to A Wish With Wings in honor of “Harper’s Wish.”
A Wish With Wings
3817 Alamo Avenue
Fort Worth, Tx 76107
(817) 469-9474
If you had one wish, what would it be?