"What is Tessie's diagnosis?". That is the most asked question we get in regards to The Toots. The reality is...we do not know. We only know that it is genetic and probably very rare.
For nearly seven years we have been on the hunt for an answer that will help us understand what happened. And for me, an answer to the question, "What is her life expectancy?". In other words, is her disease or syndrome terminal?
That question haunts me. And the fact that no one can give us an answer is both a relief and completely frustrating all at the same time. I think I want to know what she has, but do I really? What will it change?
The reality is, no matter if we ever get a diagnosis or not, I do not believe it will change anything for us or for The Toots. Will we care for her any differently? I don't see how. Will we love her any differently? No way. But I stubbornly refuse to give up the search. I make calls, I Google, I grasp at straws.
My hubby is better at handling the unknown. I need answers. Maybe it is because I wonder if I did something wrong. I knew I didn't feel well during my pregnancy but should I have yelled about it until a doctor listened? Or maybe it is for self protective reasons. In the back of my mind, I wonder if I should be preparing myself for the worst. But I can't go there. No good can come of getting lost in those questions.
Then there is Blake and Ellie to consider. I need to have answers for them. Is this a gene that they could pass on to their children? Or was this a fluke? A chance in a million? No one can tell us.
So we continue to hunt and research and draw blood and take xrays and go to genetics appointments all in the hopes of finding this elusive answer. An answer I'm not even sure that I want.
And when I feel like I am going to go crazy from the not-knowing, I remind myself...Tessie is Tessie not a disease or a syndrome. She was given to me because I needed her just as she is and I wouldn't trade any of it, the good or the bad, for anything.