Tonight Will was a Baseball player. That’s all he wants to be; like his cousin Bryson Kemp who plays for Klein Oak. Will was a Bat boy for The Varsity Team and threw out the first pitch. He collected bats, hung out with the boys in the dugout and was escorted by 2 adorable diamond girls and best of all, he was on Bryson’s team … his most fav boy cousin. Two years behind Bryson in age, he has played baseball since he was 6 on Challenger league because Bryson plays baseball.

For a moment in time, he relished in the joy of being a part of a team. It was perfect. Then in a flash, this awful disease took that away; Batten reared its ugly head and ruined the moment.

Will had a seizure in the dugout. And that moment … that precious moment where Will was a just a regular kid, listening to high school baseball players hangout, chant and cheer, was over. Just a mere 3 innings into the game. Upset players, concerned parents, my siblings springing into crisis action and a great game halted because of you. You awful, horrific, life altering, unforgiving disease that could not even wait and allow this child for an instant to be normal. Oh the hate I feel for this disease. The deep seated, total and complete hate I feel for you Batten. You try to ruin every good moment; you lurk in the shadow of every laugh, smile, happy memory of the last nearly 9 years of our family’s life. You sit like a predator waiting to take away the good in my Will and our lives.

But, like all things pure and good in this world, beauty does rise and faith and hope’s light shines brighter than the darkness. Will woke up when we got home … didn’t pass out and sleep for 10 hours in post-seizure … no he woke with a smile and gentleness within 40 min. He ate and got bathed reciting his movie quotes and talked about being a baseball player and said his prayers with his very concerned brothers. The Panthers came back to win tonight and my sweet boy sleeps beside me twitching as he dreams … I imagine about his Almost Perfect Game.

So take that Batten Disease, you were conquered again tonight. We’ve been fighting you since day 1 and I won’t stop until my Will is healed and whole. I would imagine it’s frustrating working so hard to tackle the spirit of this family and we refuse to give in or give up. Until tomorrow Batten, when we meet again for our next showdown. Thank you to my family for their love and support.

One thought on “The Almost Perfect Game

  1. I hate thaT happened to Will at such a happy, special moment in time. It comforts me to hear you mention some of the same characteristics in Will that we see with Jaylen. The twitching at night and reciting movie Quotes, we can relate to thosE as well. It really is pretty amazing, no, our boys are truly amazing! much love, kelley

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