Last night I missed another moment of my boys life. His school had its fall ‘Lantern walk’ where they gather at dusk to sing songs, tell stories and take a symbolic walk with their lanterns. I missed the walk the last two years also, it’s just something I cannot do. If I did, I would likely be weaker for months causing me to be unable to interact with my boy. I can’t let him see me that way. That’s just how it goes. Aedan is very understanding and sweet about it, but I couldn’t help but feel sad and defeated. I am tired of missing life, especially his life. I cannot possibly overstate the heartbreak of having to tell him Daddy can’t go. Again. Last night I was human and let it get to me a little too much.

You see, I have watched my son experience much of his life through pictures. Due to the deficit in cellular energy, I get weak fast and generally cannot leave the house. If I pass my invisible and unpredictable energy threshold (hit the wall), it starts a global cascading effect throughout my muscles and energy-dependent organs; brain, eyes, heart too. I must avoid that state at all costs as it can quickly become an emergency for me. I can’t stand being the reason we’d have to leave immediately once this happens. I recover very slowly and most often I don’t recover at all, my baseline is often permanently lowered.

It’s like Chinese finger-cuffs. The harder I fight, the harder the fight becomes. But that’s just my nature I guess, I fight hard. I have knowingly hurt myself a lot over the years just to steal back a few precious moments, or to show my son I am strong. Of those that know me, I’m sure few are surprised.

I absolutely do not like to talk about this part of my fight, but I’m trying to illustrate a point.

This morning was like most others, I couldn’t sleep through the pain. Aedan crawled into bed with us, but I got up as I didn’t want to keep them awake from the movements of my body that I can’t control. That alone is something that fills me with shame if I let it, but I’ve learned to cope with that over the years. Sort of.

Aedan got up at about 5:30am, just before dawn here in Colorado. I had a shitty night, yes indeed. But I did what you must do. Paint over the ugliness on the canvas with a good memory, a lasting memory you wish to keep instead.

This morning, I watched the sunrise with my boy. We sat there in amazement as the sun painted the world with beautiful purples, then reds, then orange and yellow hues… The world just glowed, the mountains especially beautiful this sunrise. We went to different areas of the house to get different views, excited over the beauty that the gift of this morning gave us. This is the type of morning that brings an overwhelming amount of gratitude and thanks. As if the sun painted the world just for us to see and share together, my son and I. And instead of remembering the pain from last night, I will remember his sweet voice as he told me of all the beauty he saw this morning. Look at the clouds! The foothills! The mountain tops Daddy! Wow…

Many of you have had your lives stolen from you too. And I deliver this divine reminder to you that the world is filled with moments for you to steal back. For those of you who still have your health, I ask you:

When was the last time you enjoyed a sunrise? Or put aside the distractions of your temporary reality to sit with your children and just be – just soaking in the world around you and the otherwise fleeting moments that we all take for granted??

I gotta go, my favorite time of the day is coming. Aedan is about to “Daddy-clamp” me so we can go together to get him dressed. It’s my job to put on one sock while he puts on the other. Perhaps some tickles too.

There had literally been over a thousand nights during the first few years that I certain I wouldn’t live to see tomorrow, but the sun will rise for you every morning y’all.

All you have to do in return is choose your focus wisely and look up. It’s waiting for you.

I love you all.

Your Brother in Fight,
/M