Six years ago today we were welcoming a little (8lb 15oz) bundle of joy into the world- the little one that would quickly be known by his nickname- Kar Kar. He was the second boy to be added to our family- something that we were ecstatic about!
Oh the roller coaster that it feels like we’ve been on with him over the past six years. We’ve seen him become to be known by a new nickname- Mito Man, after his diagnosis of mitochondrial disease- a disease that affects the mitochondria of the DNA. For him, it affects his mind and muscles so while he is the size of a typical six year old- his mind is way behind. He doesn’t walk, doesn’t talk, along with a host of other things he should be doing.
On the flip side- we’ve seen him go from a baby who laid on the floor and cried all day- to a kid that gets into everything. He has figured out how to open doors, which is a mixture of a blessing and a curse. It’s a blessing because he has learned how to problem solve and get past obstacles. It’s a curse because the kid is a hazard to himself and doesn’t recognize the inherent danger that’s present! He can crawl around on his hands and knees, he can walk (some) when he is in his walker, so he has made amazing progress! He shows preference for things- and even greater he gets quite excited when I get home from work! He’ll come from across the home jabbering and laughing. There’s really nothing like the feeling of joy that this gives me!
Have there been bad days? Yes. But the good far outweighs the bad. Our Mito Man has made this verse all the more powerful to us:
“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. My bones were not hidden from You when I was made in secret, when I was formed in the depths of the earth. Your eyes saw me when I was formless; all my days were written in Your book and planned before a single one of them began”. -Psalm 139:13-16
That’s what gives us such a peace about him. The fact that the Creator of the Universe and knew him before he was made gives us a sense of rest. The same One who spoke the Universe into being knitted our Mito Man together. And he is fearfully and wonderfully made!
For the past several years there has been an event that happens to fall right around the weekend of Karson’s birthday, and this year is no different. The Dare to Dash 2k and Family Fun Day is this Saturday at Thrasher Park in Norcross. It was started by Lisa Higgins several years ago. Lisa’s precious angel Ainsely lost her battle with Mito last year. It is a great day, full of fun events for the entire family. All of the monies raised to to benefit Children’s Healthcare of Atlanta and The Ainsley Paige Higgins’ Dare to Hope Foundation, Inc. The monies specifically go to the Palliative Care Team at CHOA. The Palliative Care team focuses on relieving suffering, slowing the progression of disease, optimizing function, and improving the quality of life at any stage of disease.
We’ve created a team (named Mito Man of course!) and would love for you to join us! You can visit their site to learn more about the day, sign up to join us, or just donate to help fund these incredible causes!
So Happy Birthday to my Mito Man! I love you pal!