Still.....

Sad, negative, heartbroken, fearful...Just so many emotions.  I know I have never met this little boy but if you are a parent there is no way you can see a video of him singing his ABCs and not cry.  What a beautiful boy Samuel was and he surely have left his mark in this world.  Yet I cannot help but look at my own beautiful boys with tears of sadness that I will one day face the same fate.  There is not a choice, it is what will be.  Moreso with Avery as he has racked up more diagnosis than some of my patients in the nursing homes.  All it takes it one illness and he is gone forever.  I am sorry to sound so sad but it is what is in my heart and it breaks everyday for the loss that will be upon us one day.  I find myself driving in the car and crying my eyes out and going to bed with tears.  This is not me at all but this week it is.  I think after what we went through this summer we feel that we "got lucky" but luck does run out.

You know I went to the Mito symposium over the weekend and it was sad to see so many different people affected my mito.  There were adults in wheelchairs, parents, grandparents and relatives all affected by someone with mito.  I even had a man in his 70s come up to me after my presentation tell me that he lost his wife 10 yrs. ago from the disease.  It can affect anybody of any age and can overtake the whole body.  He told me how his wife suffered for yrs. from mito and she wanted to die b/c the pain and illnesses were too much.  It was dainting to hear from someone that can verbalize it.  So I did feel honored to be able to talk about my beautiful boys and show pictures of their smiles and how brave they are.  I also talked of how we cope as a family.  I think we do a pretty good job, but still there is no getting away from the ache in our hearts. 

You know I am normally a positive person but I am human.  I am not feeling it these days.  I know it will pass but I have so many friends that will be in the Knight's family shoes (some that don't have mito but other genetic disorders) and it is awful.  My heart goes out to all these families.  You are supposed to get married and have kids and they live long lives.  But in many of our situations, the kids live a life of pain and illnesses and are only here a short time.  It's just not fair.  So these days, it is really hard for me to hear people complain about the small things in life.  Maybe next week I will have more tolerance. 

So I take the tears of joy when I can and this was certainly one of those moments.  Isaiah trying out his new ride.