The Wizard

Those of you who have followed Wylder’s blog all these years know about “the wizard.”   Wylder’s amazing custom wheel chair that provided him (and therefore us) so much comfort for a year and a half of his life.

Children with NPA loose their muscle tone and have a very enlarged liver and spleen making getting comfortable sometime very tricky. When Wylder was young all he wanted was to be in my arms or in the sling against my chest. It was Heaven. As he began to grow and grow and his tummy got rounder those two options got more difficult, so we rigged anything and everything under the sun around our house to make different spots where he could hang and be cozy at the same time.  From temperpedic floor mats, to custom hammocks to some special needs chairs we ordered that in my opinion ended up being more trouble then they were worth … you name it we tried it.  All in the name of comfort.

hammok Wylder style

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After months of insurance battles and paperwork we finally got Wylder his own custom chair in March of 2011 (just before his 2nd birthday) and we named it, THE WIZARD, from the Wizard of oz. I never knew I could feel so grateful for a chair. We could cruise him all around, change locations whenever we wanted, sit him up down, lean him forward or backwards dependent on our activities at the time. And I will never forget sitting over dinner his first night in the Wizard we looked down and there he was … asleep. It was just pure comfort for him and that made our hearts soooo happy.  We spent the next 14 months loving that Wizard and all it provided for Wylder.

Wylder's first day in his wizard

Wylder’s first day in his wizard

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Wylder was even Baptized in his chair

Wylder was even Baptized in his chair

Lots of Wizard naps

Lots of Wizard naps

Butterfly project in the wizard

Butterfly project in the wizard

Wylder grew to be very a very BIG boy in his wizard

Wylder grew to be very a very BIG boy in his wizard

Wylder was even bathed outside in it

Wylder was even bathed outside in it

When Wylder passed I was not able to part with the Wizard. It sat parked in the house for a long time and then was carefully wrapped up and stored in the garage. More recently it has felt like the right time to let the Wizard go another child in need and provide the comfort it gave Wylder to another. Not an easy decision to come to as we watch it leave our house, but definitely the right decision to help another. We wanted to keep it in our NP family, but the good news was it seemed that those children were all qualifying medically for the chairs they needed. So after many prayers I came across a company called Joni and Friends. They have an incredible program called wheels for the world.

Since 1994, our Wheels for the World ministry has delivered free wheelchairs and Bibles in developing countries. But Wheels for the World is not simply about “dropping off a wheelchair.” It’s about changing the hearts, minds, and lives of people. It’s about transforming societies, village by village, person by person.
Wheels for the World shares the love of Jesus Christ, extended through the gift of mobility, bringing hope, joy, and salvation to children and adults with disabilities around the world.
You can watch a video about this program http://www.joniandfriends.org/wheels-for-the-world/

So Wylder Wheels, the Wizard, was picked up from our house a couple of weeks ago and will make it across the globe to a child in need of it from this very loving organization. We are very hopeful to receive a photo of the child who gets the Wizard, although it is not always a guarantee we are very hopeful that picture will arrive at our doorstep one day. The Wizard is just wrapped in so much love, I know it will provide happiness and hope to another.

I wish you were here Wylder. Sitting in your Wizard, just being you. I wish we didn’t have to give your chair away because you went to Heaven, but we know the importance and goodness it will bring another. We miss you. We love you so much. Thanks for making your brother so zesty, he is just what we needed. Keep your Littlest brother safe, he will be here in a few months. See you in our dreams little one. xoxo

Comments

  1. Cathy Johnson says:

    I am going to start calling him “Wylder the Wonder”! There is no end to the gifts he gives to us all. I love that the Wizard is going to take a journey that Wylder couldn’t while he was here. And I love that Wylder will be able to see the happiness the Wizard brings to another child, even if we can’t. And I love that you call Koa “zesty” – it sounds just right for him! I wish, too, that Wylder was still here with you, Shannon. I am glad that you are feeling some comfort and love from sharing the Wizard. Hoping you are feeling well and that littlest brother isn’t keeping you up nights. :) xoxo

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