5 Years

Five years ago today was possibly the worst day of my life. I was blindsided with the news that my not-quite two year old finally had a diagnosis, and it was terminal. For weeks (months? years?) after that day, all I could I focus on was Grayson is going to die. To me, the label of Leigh Syndrome meant death. Period.

I wish I could go back and time and shake myself, and show myself pictures of that “terminal” little boy today.


The little boy who would not only outlive the time that Google told me he had, but who would exceed so many expectations, including mine.

That terminal little boy rides the bus every day to and from First Grade.


The little boy who works hard in his 4x/week therapy sessions.


He giggles, whines, and has preferences, just like any almost 7 year old. And yes, he still loves Veggie Tales (sorry about that one, former self).


Grayson brings more LIFE to our world than almost anyone I know, and nothing about his life resembles death, or dying.


I took this picture just hours after his diagnosis. Look at his face. Grayson knew before any of us that his disease wasn’t going to define or limit his life.

5 years. I’m so lucky.


  1. Sue Baudry on September 12, 2017 at 6:19 pm

    Coach baker, your family means so much to us and seeing your son grow as he has, is just breathtaking. We will continue to pray for your sweet family. And know that you have a special place in my heart for all you do with our softball girls. Cassie is doing really well and your time for others and your giving of yourself, well, just goes beyond words!! Thank you

  2. Bryce Morrow on September 12, 2017 at 10:03 pm

    Amazing! Amazing boy with amazing parents.

  3. Christy on September 15, 2017 at 2:07 am

    So so amazing. Grayson is one special little guy!

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