Living with Mito: The Struggle is Real

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This post was written for a contest that Dare to Hope is having on their Facebook page. If you would be so kind to head over there and give the post a “like” that would be fantastic!

Meet Karson.

He’s your typical six year old- mischievous, always hungry, full of spunk, and generally an all around amazing kid, albeit one that always seems to be getting into something that he shouldn’t be. He’s kid #2 around the Parker house in a line of four boys.

He also has a disease that is threatening to take his life at some point that is called mitochondrial disease.  And living with that is a struggle. Everyday life is a struggle, the future is a struggle and the struggle is real- but it is also light and momentary…

Life is a Struggle

Life with our Mito Man (our nickname for Karson) is a struggle. For while he is the size of your typical six year old in height and weight, he cannot walk. We are so blessed that he has learned how to crawl and can get himself all around the house (and into everything he shouldn’t be getting into), but he has to be carried everywhere- to bed, to the shower, to the car…that’s no easy task for a kid his size.

What’s more of a struggle in everyday life is the task of protecting Karson from himself. His mitochondrial disease affect his muscles and his mind so while he is the size of the average six year old, he is dramatically delayed developmentally. With that comes another set of challenges. He has no concept of danger so he is truly a hazard to his own health! We have had to put up baby gates all around the house to keep him out of the bathrooms and his brother’s bedroom for his safety and their sanity because one of the things that Karson loves to do is make a mess. There is little that gives him greater joy than dumping out a bucket of toys and spreading them everywhere- while he is laughing hysterically…much to the dismay of his brothers. The kitchen? Sheesh…it’s a complete danger zone. Because of his size he can reach things on the table and counters and has grabbed glass objects down before, shattering them all around him, and laughing- with no idea of the danger he is surrounded by.

He has very low energy so we have to plan accordingly with our daily schedules. He can’t stay out late, and travelling long distances has gotten to the point where it is nearly impossible. My family lives in North Florida and the last time we made a trip down there it took Karson nearly a week to recover. It wipes him out and normally makes him sick so we tend to stay close to home.

The Future is a Struggle

If you know anything about mitochondrial disease- you know it’s not a friendly disease. Many of those diagnosed at a very young age will not see adulthood (some stats say as high as 80% will not make it until 18). That idea literally terrifies me. The concept of losing a child is sickening to me. That this disease could steal my Mito Man from me infuriates me. It has already stolen so much, but to lose him entirely would be a devastating blow. And yet- it’s a real possibility.

One of the blessings of Karson is that he is healthy for a mito kid. He is not on any medications. He eats table food (and normally a lot of it!) He doesn’t suffer from seizures, a common symptom of mito. But that could change without any notice. Something about mito is that how it affects someone today might not be how it affects them next year, next month, or even next week. It could go from affecting his mind and muscles to affecting his heart, or lungs. The struggle of that future is real…

The Struggle is Real, and yet Light

Life with our Mito Man is a struggle, and yet we press on. What makes that possible? As a Christian these verses from Psalm 139 have had an incredible impact on our lives with Karson:

For it was You who created my inward parts; You knit me together in my mother’s womb. I will praise You because I have been remarkably and wonderfully made. Your works are wonderful, and I know this very well.

It’s reassuring to know that Karson is no mistake. He’s fearfully and wonderfully made. My God knitted Karson together and he is beautiful. Another passage that has is helpful for us is from Revelation 21 talking about Heaven:

He will wipe away every tear from their eyes. Death will no longer exist; grief, crying, and pain will exist no longer, because the previous things have passed away.

We know that Karson’s disease is an effect of the fall of man and sin entering the world. We know that one day all of creation will be set back into the right order- and there will be no more pain, no more death, no more mito and other terrible diseases. That’s reassuring to us.

Another way that makes our struggle seem light is to see the struggle that others are facing. While it’s no joke to say that life with our Mito Man is hard- there are so many people who have greater struggles. They have a child (or loved one) who is fragile, on numerous medications, or they may have even lost their loved one to a terrible disease like mito. We have two different friends who are living the reality of life without their precious child due to mito, and in comparison to that it makes our struggle seem like a walk in the park.

So what will we do? Keep pressing on…living life as best as we can, loving on our Mito Man- because while the struggle is real- the right perspective on it can make all the difference in the world!

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