TSC Warrior

When I was in grade school and learned about war I had a failsafe plan in place in the event I was ever sent to battle: play dead. I was absolutely flummoxed why more soldiers didn't just lie down on the battlefield, hold still and wait out the storm. Though it seemed noble to be brave, who wanted to be noble and dead? Yup. I had a plan. I was going to master that war thing when one day I was unwillingly forced into the draft. I was going to play dead.

Life moved on. That ever-pending fear of being called to war drifted away with adolescence and one day I was basically too old for the draft. I was safe.

At our doctors urging, when we first learned about TSC we signed up for the Tuberous Sclerosis Alliance. We were put off instantly with their two catch phrases: "Give everything but up" and "TSC Warrior." What sort of kick me while I'm down slogans are those anyway? I didn't want to give everything but up. I didn't want a warrior for a baby. I didn't want to go to war. I said no thanks, turned away, and for the last three months I did just what I figured I always would: I played dead. I expected the worse, I prepared for defeat and decided I just had to hide and do the best I could to survive. I really really wanted to play dead.

But this isn't just my war. When Miles looks up at me with those deep trusting eyes and a full-body smile so radiant it topples him off balance, I am reminded that he also got drafted into this war. If I play dead, who will fight for him? If I play dead, will we live each day in fear, running and hiding? If I constantly bemoan the ugliness of war who will teach him that even in war life is beautiful?

Miles, I will fight for you. I promise to bring joy to this battle. I will teach you that the deepest relationships are forged in the deepest trenches. I will show you that even after our most tumultous days, the stars come out and in their gentle, languid permanence they are magical. We will meet exceptional people, some in battle themselves, others only there to help, heal or protect, and they too will fight for you.  There will be pain, there will be terrible days, but I promise to point out every glimpse of the veracious and steady ocean shimmering through the smoke.  Our legs will grow weary with marching but our knees will grow stronger with praying. We will tell captivating stories and become the best listeners.  You and me kid, we will see the world in a way world travelers never will.

I am hoping and praying we get stationed in Tahiti, shoot I'd even settle for Disneyland Paris, but wherever we end up, no matter the battles we face I won't stop fighting for a transfer, a better life, or even just a laughing moment. I promise to focus on the things you can do, and never give up on tomorrow. I will wish upon every star and believe in every miracle. Turns out I will give everything but up to ensure you are living not just staying alive. Miles, I will never leave you on your own, we've been sent off to war, but I will fight for us.

(Click here for more pictures from our recent family photo shoot)