So, it's been a while. . . well it seems like an eternity but really only a few months. Writing is my outlet but it is also the first step of me admitting the truth to myself. If I put it in writing, than it is true. If I have enough courage to write it in black and white then I have the courage to face whatever is going on. . . that I have the strength to accept all things good and bad, relishing in the fact that all things are controlled by MY sovereign and loving GOD. This is me trying to, I suppose, cope with the last few months. Carter as far as his EE has been progressing marvelously. . . better than any one expected. So, for this, I give thanks and believe me I am so thankful for the grace and healing of God. It seems however, that his journey may be leading us down yet another, unexpected road.

Tomorrow, we start down a new and different road. We begin the work up of diagnosing Carter with Mitochondrial disease. While I hear what the doctors are telling me, I don't listen. I see my child. He is amazingly perfect. I can't bring myself to a place where I can accept that he may have something that could take his life early. I get that he has ALL the symptoms. I get that when I read the description of Mito, they are describing my son. I suppose I have already come to terms with it in a sense but the reality will not hit me until I know for sure. Until I see it in black and white.

I talked to Dr. P 2 weeks ago, he says, "so far, I have not misdiagnosed even one child with Mito by looking at symptoms alone." Wow! Amazing! I am amazed by his abilities and thankful that parents have someone like him. He then says, "I think Carter needs to see a Neurologist." WAIT. . . I am one of those parents. But Carter has all of the symptoms except for mental delays. . . so maybe, just maybe, they are wrong. . . I will hold on to this hope no matter how small it may be. And I will push ahead. I will talk to the doctor tomorrow. I will listen and hear him. I probably won't believe him until I see a Doctor in Cincinnati but at least I am starting down the road.

It is amazing, people have always told me I am a natural care taker. . .I agree. I will do whatever it takes. The last five years, while, intense, have been "easy." I take what I get and deal with it. However, I have been able to hold tightly onto the fact that I will see my baby as a grandpa. What if that changes? What do I do? I already hear myself, and it scares me. . . "Scott maybe we should look for a one story house. . .something we can use a wheel chair in." "When Carter gets officially diagnosed, we need to think about moving to Ohio." "Maybe we should get a yard trampoline, to help Carter's muscles." I don't like that I have to go there. I don't like what this all encompassing disease has done to my son. I don't like that so many EOS families have to deal with Mito everyday. This is not just a "food disease". . . this is a whole body disease.

We just had Carter's ISP meeting. I know I was there. . .it was at my kitchen table but at times I felt like they were talking about a different child. How to get oxygen in, when is it time for a full wheel chair (not just the special needs stroller we are using now), how much in home nursing care does he need. . . Is this my child? Is this my life?

At the end of the day, I have to realize that it is. I can honestly say that I wake up thanking God every day and go to bed thanking him too. I know and am comforted in the fact that he is in control. I feel amazingly blessed that for some reason, I was given Carter. I will not wish for something different I am just scared. My mind goes places that I don't want it to but it is reality. So, I guess, I will deal with it.