Mitochondrial Disease Awareness Week

 Each year for the past 15 years I have met this week with a bit of dread. I don't really want to be a part of Mitochondrial Disease Awareness Week. This isn't really what I thought life would be and it is a diagnosis that has robbed our family and so many we know from so much. So I will give my quick blurb and then I am going to move on to the blessings in our life which I would much rather focus on. 

Mitochondrial Disease (Mito) is a progressive, genetic disorder that effects each individual differently. Mitochondria are found in all of our cells except our red blood cells. The degree to which any person is effected depends on how many cells are defective and the extent to which they aren't working. Our mitochondria are responsible for converting our food and oxygen into energy to allow our bodies to function. 

This is my favorite graphic because I think it is an analogy we can all understand. Most people cannot begin to imagine our day to day...Both kids take dozens of doses of medications, are sustained by nutrition they do not eat (Maddy through feeding tube; Alex through his port) and are stuck with multiple needles a week. Maddy is followed by 13 doctors and Alex 15. Their care is around the clock and disrupts all of our sleep more nights than not. They have missed out on so many activities, holidays and "rights of passage" through childhood. This disease robs children and families of the life they should have...and yet there is so much more!

My greatest joy and blessing is being the mother of Alex and Maddy. I have no idea how or why God chose me to share these kids while they are on this earth, but it is an honor. Maddy and Alex have the most beautiful relationship I have ever seen. It is pure love and trust and friendship. They help each other and encourage each other. They console each other on the hard days and laugh through the good days. My kids show more strength, courage and perseverance each day than many do in a lifetime. They smile through chronic pain and push themselves to truly live life rather than just exist. 

If you had asked me 15 years ago about hope for the future, I'm not sure how I would have answered. But Monday Alex and I spent our whole day at TCU visiting a university he hopes to attend full time in the fall. I did not believe this was a possibility even two years ago. Instead of worrying about life and death we are talking through majors and realistic expectations as he thinks abut careers. 

Maddy is also pushing beyond expectations. Maddy's joints, bones and muscles are greatly effected by her disease. She also has several GI conditions that make gaining weight and with it muscle almost impossible, however she has chosen to ride thousand pound plus animals. She has shown us that she has a huge heart and a warrior spirit that allows her to excel beyond what she should and is an amazing equestrian. 

And so as I think about this week and the path we walk. I am once again reminded that life holds no guarantees for any of us. But I also live knowing that this is not our forever home. We are just passing through. And so I will continue to look around and see the many blessings around us and praise God that he allowed me to borrow these precious angels for however long they walk this earth. 

Ali