Monday, October 17, 2016

Faces of Spina Bifida: Meet Toby

Toby


Our son Toby is 9 years old. He is a vibrant, joyful boy with a feisty, persevering spirit. He has faced a lot of challenges including breathing, sleeping, swallowing, eating, seizures, and scoliosis. He has a trach, is ventilator dependent when he sleeps, and has rods called VEPTR in his back to keep it straight. In one month he'll have his 33rd surgery. However, none of this seems to slow him down. He loves playing sled hockey, wheelchair racing for Special Olympics, Miracle League Baseball, singing, playing the piano, Toby Mac, Legos, Star Wars, and everything else a 9-year old boy loves.

In one word I would describe him as Determined. He would describe himself as: awesome.


I wish I would have known then that this diagnosis was just a bump in the road of our journey, not a road block. I wish I wouldn't have had the fear. I wish I could have seen how our son would change my life for the better (and those around us) and allow our family to know God's grace and mercy in ways we would never have known if it wouldn't have been for him. I'm grateful for that!

Toby sees his strengths as having a good imagination and making people laugh by telling jokes. I see his strengths as having determination. Sometimes it's stubbornness, but as much as that gets him in to trouble, it allows him to overcome his setbacks too!

Toby also wants others to know about Spina Bifida that the Operating Room stinks - really, it's smelly and that's the thing he dreads the most when he's headed in for another surgery!


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