How'd We Get Here?

I know that we dropped off Ethan and Ella at Kathy and Jory's house last night. I know that we woke up at 4:00 this morning to catch an early flight from Pasco. I know we had a layover in Minneapolis where we had breakfast bagels for lunch. I know that we tried feeding Cannon from a medicine binky, one teaspoon at a time, to get him to eat something. I know that we caught a flight that brought us here to Baltimore. I know we rented a car and drove to the N.I.H., where we had to evacaute the car so it could be searched for bomb materials.

I know we are now staying in the "C" wing of the Children's Inn at the NIH where we share a kitchen with the "E" wing.

I know all of these things, yet my question remains,

"How'd We Get Here?"

Taking a moment to myself to do a self guided tour through the Children's Inn Facility, I walk a little slower. I let the stars on the walls, with names of generous donors and sponsors sink into my heart. My slow pace turns into a standstill as I let the spirit of this place wrap me up. Pausing a little longer, I think about the many lives, the many children, these stars hanging from the ceiling have seen. I think about what diseases they must have in order to be at the National Institute of Health. What genetic disorders, or otherwise, do they have that they travel from wherever they live, no matter how far, to be able to be seen my doctors and researchers that dedicate their lives to studying and testing and researching and re-testing and studying some more to help find an answer, a treatment, a cure!? My heart breaks for each one of these children, and their families.

Then I look inward. My Cannon boy is one of these rare and special kids. My family is one of those families traveling from far to see the doctors, to get an answer, a treatment, dare I say my impossible wish aloud...

A cure.

It hits me.

My child is one of the worst. One of the sickest. A "Menkes Mommy" friend said she was at a "Make a Wish Foundation dinner" and realized her child was the sickest one there. It's true. All diseases and disorders are sad and tragic but some are treatable. Some have a cure. Some have hope. Some you can fight. Some you can beat. Since a lot of babies don't get diagnosed within the early weeks, as in Cannon's case, Menkes does not seem to offer hope. I literally felt a punch to the stomach when the reality hit of the weight of this situation.

We have been from coast to coast with doctors and specialists of all kinds. Tomorrow is a big day. We are thankful for the chance to meet with Dr. Kaler. I feel grateful to be meeting with the researcher that knows so much about Menkes, but trying to remind myself he is not going to be our "Magic Wizard behind the curtain." meaning- we are trying to stay realistic yet hopeful at the same time- which is a fine line to tell you the truth.

As these thoughts, and many more, flood my mind, I walk slowly back up to my room. I come in to find my little man sleeping peacefully on the bed. He is beautiful. His body is imperfect but he is perfect. The best part of all- he is mine.

Kent and I had some time tonight to talk about where we are, where we have come from and where we want to go. We are thankful for this time of reflection. Cannon has been sent to us for a reason. Cannon deserves so much, more than I feel we have been giving him, but not more than we can give him. We are determined and dedicated to give him the life he needs- the life he deserves and we will do everything in our power to get the answers we need to bring comfort and peace to him. My goal is to listen to Cannon, know Cannon. I want to do what is best for HIM. I love him so much and pray that we can continue to be guided by our Heavenly Father, the only one that knows what is best for Cannon. We are thankful for our family and our dear friends that make this journey bearable, possible and enjoyable. We love our Cannon and the joy he brings to our lives.