Why I Hate Mito

This Week's Top Five Things I HATE About Mitochondrial Disease & Leigh syndrome: (I can't really rank them because they all equally suck)

Energy Zapper: Will's energy levels are at an all time low right now after starting kindergarten. He had a bad few days last week and his teacher said that he fell out of his chair twice in one day. Just sitting there and fell out. Just breaks my heart to think of him trying to hard to simply sit in a chair and his body couldn't even provide that.

This disease robs his body of the energy it needs to simply walk, talk and chew. One day it simply will not work at all.

Heat intolerance: It's damn hot in Houston, Texas. The cooling vest helps Will, but not nearly enough. Besides the fact that he has a lot of physical limitations, the heat also prevents him from experiencing simple things such as playing outside or going on a walk in the stroller.

Getting hurt: This morning we had a great morning. Will woke up happy and ready for school. He asked for (and received) a Mohawk style hair do like his friend "C" has at school and was just finishing up hugging dad goodbye. He got up off the couch in a hurry because he wanted to see Quinn and just tripped right over Neil's shoe. He landed flat on his face. He wasn't able to coordinate his body quickly enough to get his hands ready to catch himself.

Usually Will pops right up and says, "I'm okay" and moves on. This was not the case this morning. We went from one of the best mornings to one of the worse in a split second. Bloody lip, gums and one upset little guy. What happens when it's not a busted lip, but rather a busted knee that puts him in a wheelchair and he never is able to bounce back to his current baseline? That thought process is extremely real and extremely scary.

This was the worst busted lip we've had. Happened when he was about 1.5 year's old. Not pretty. 

Physical stuff: It's a hard pill to swallow knowing that there are portions of his brain tissue that are dead. Serious brain damage. That dead tissue is what controls his gross motor skills - running, jumping, skipping, riding a bike, climbing a play structure, going down a slide. That tissue isn't coming back and it's highly unlikely that we'll be able to train his body through PT to jump or ride a bike.

I still remember when we started physical therapy. Will made HUGE strides. He eventually even started walking. I was so naive and hopeful about certain things then; I know better now, but I still hope.

Working with Mr. George in the ball pit.

All the sh*t he has to endure: Not one day, rarely not one hour, goes by that I don't think about Will's health and future. It doesn't consume me anymore, but it's a very slippery slope. I know that eventually (probably sooner than I'd like) we're going to have to have some hard conversations with Will.

Muscle biopsy 

Sleep study 

Cruising in the hospital 

Weekly immune system infusions that take 2 hours. Thankfully we can do these in our home.

Our life sounds pretty miserable. Some moments it's exactly that miserable. But we have so many many millions of moments that are simply perfect. I try to cling to those memories and pray for many more.

This week is mitochondrial disease awareness week. If you're so inclined, please take a minute this week to tell someone about mitochondrial disease and like People Against Leigh's Syndrome on Facebook.

 

Where There's a Will, There Will Be a Way.