Happy 2013 Mitochondrial Disease Awareness Week!
There are so many facts and stats to share about mitochondrial disease, but I am not really feeling like a fact and stat type mom today.
This past weekend I had a chance to attend a UMDF sponsored SPA Weekend - Support, Play, Acknowledge. The activities were centered around the "Welcome to Holland" poem, which I have posted before. The organizers did an amazing job with integrating the theme into meaningful activities and projects.
A few of the activities dealt with shoes... I'm always, always, always waiting, agonizing, debating, analyzing which shoe will be the next to drop. Trying to anticipate it, trying to learn enough about each issue without becoming a hypochondriac, trying to monitor every minute of his life to identify potential problems.
Which body part is going to fail Will, what illness is going to take him down, how will he die, when will he die, what comes next. I have spent countless hours debating these topics and more in my head.
As hard as I try every day to just be in the moment, my emotions and thoughts can spin out of control. Pick an issue - school for Will and I can create "what if" scenarios from here to kingdom come. Everything from what if he gets hurt, what if the kids are mean, what happens when he is excluded for no fault of his own - it could go on literally for days.
I will forever be waiting for the other shoe to drop. Even after he is gone.
I've realized we are actually centipedes in mito world. The number of shoes that are going to drop in our lives, in Will's life, are countless. Once that "big shoe" drops, there is going to be another one lurking in my head and heart. They will never stop. Awake and vigilant because I do not want to be caught off guard. That has happened too many times in our journey.
Right now, this to me is mitochondrial disease.
Small and big shoes will fall one by one. Never in the order you think. Never easy to catch.
We were shoeless once...
Living in Italy
Unknowingly arriving in Holland.
Trying to figure out how it all works in a country we were never prepared to live in.
And somewhere along the way, we figured out how amazing and
beautiful Holland is once you wipe away the tears.
And waiting for the other shoe to drop sometimes looks the same and that can make it a little easier.