Mito is often called an "invisible" disease. It shares this label with many disorders like, Chronic Disease Syndrome, fibromyalgia, depression and more. To the outside eye, people with these disorders may look as healthy as you or I. When you look more carefully, however, you see all the effort it takes to look so "healthy".
Mito is sometimes called "invisible" for the same reason. With careful attention to diet, stress, hydration, and various other interventions, mito kids often look very healthy for long stretches of time. Often it only takes a small cold or virus to bring the house of cards tumbling down. And it's often a hard crash. A crash with lasting results. Sometimes it takes much longer to REbuild the cards than it took to build the house the first time.
I think that's the scary part. Watching and celebrating all the accomplishments with the fear that it'll come crashing down by a simple fever or virus. I try so hard to appreciate each new skill Asa learns without the fear of tomorrow. He's experiencing a huge developmental boom right now and I want to savor each moment. It's a good perspective to have overall though. None of us are promised tomorrow, after all.
Another aspect of the "invisible" mito is the siblings who watch their brother or sister battle mito. I think they often feel "invisible". Some kids are better at getting those feelings out than others. I know at our house the siblings think Asa is spoiled. I assure you, he is no more spoiled than they were but he does require extra attention and time that does interrupt their lives. It's a tough balance.
And I'm sure some siblings have to grieve the healthy sibling they thought they were getting. As parents, we spend time comparing our babies progress and the pain when those delays add up is awful. We learn to love the gift we've been given but there's still a longing for the child who fits the standard mold. Siblings must feel a similar longing. Instead of watching their brother play soccer or T-ball, they sit on the sidelines of therapy and doctors appointments. I'm also certain that having a brother with special needs can affect friendships. No loud sleep overs or late night movies. No picking up and running out the door at a moments notice. And how do you react if you have a brother or sister with delays and your friends use the "retard", as kids often do without thought or in ignorance?!
And lately, I've been wondering about the future. The far, far distant future I hope, but what would happen if Asa outlives Barry and I. Would his siblings work together to provide and care for him? Will one or more consider him a burden or just live too far away to help out? Will anyone give up a dream so they won't be too far away to help out? Oh the worries! I know God is in control and Asa will be fine but I'm convinced Satan uses those worries to distract us from focusing on God's providence and blessings!
And that is where I end my Mito Awareness Week! In the care and love of the Great Pysician! My God is an awesome and powerful God. He is capable of healing and He is more capable of comfort and shelter when there isn't healing. After all, He knows better than anyone what it's like to watch a Son suffer and die. He gave His only Son to die as a replacement for us. It doesn't get more comforting than that! And with this assurance I know that cure or no cure, our family will be alright, no, even more, BLESSED to be covered and protected under the Mighty, Everlasting, Loving grace of God, the creator and designer of all things, even Asa's mito! He knows what the doctors or science can ever figure out. That gives me peace to battle on as long as I'm blessed to hold Asa in my arms! After all, none of us are guaranteed tomorrow!