Hurry up and wait.

Last week Cody and I made another trip to ACH Little Rock. We're always hurrying to get there. Hurrying up to get there and then to wait. But, I love this time alone with my boy. He is always having to work so hard. Things that come naturally to some kids take extra hard work for Cody. Always being told what to do. Always being directed this way or that way. He just wants to be heard, loved, enjoyed, so that is what we do when we make our trip to Little Rock. We jam to good music, we throw peace signs to passing cars, we take silly pics. I soak up every mile because I've blinked and it's already been 8 years. It seems like yesterday that he was wheeled around the hospital in a wagon versus a wheel chair. It seems like yesterday that he was in the little infant hospital gown instead of the pants and shirt that ties in the back. Now, he engages with the nurses, he asks questions. They remember him. They love him. I walk back with him and help him on the bed. The anesthesiologist puts the mask over his face and he breathes slowly. His eyes start closing. I rub his hands and tell him how much I love him and I'll be there, waiting, when he wakes up. He is out cold. It's a simple MRI, but it hasn't always been a simple MRI. There have been MANY of those exact moments where the surgery was intense and difficult, hours long. Nerve racking. The anesthesiologist says, like they always do, "We will take good care of him, Mom.". I hold the tears back until I get out the door and into the hallway. Then they pour and I feel like I can take a deep breath. I always go to the cafeteria to wait. I like looking out the big window - watching the sky, the Capitol building, the traffic. You can always point out the mothers in the cafeteria. We all have the exact same look on our face...kind of a deer in headlights look. Worry. Intense worry. Heartache. And we're all looking out that same window. Aside from asking God to give guidance to his doctors, (and to keep my teary eyes out of view from someone that can't help but hug me because THAT, the kindness of a stranger, brings on the alligator tears and once it starts...it doesn't stop) :) I try to spend that time putting myself in my son's shoes. In my son's heart. I can't possibly know what it feels like to be him although I so desperately want to know. As I sit here time and time again and type out my feelings and thoughts about this journey (because if I didn't, I would probably go further insane...) :) I take for granted that I can do that. I can process all of this. How does Cody deal? How does Cody process? How does he sort out his feelings and thoughts? I wish I knew how to help him there. I can't imagine how isolating that must feel.

This time was an MRI of his spine.

So far, in 2011 we've checked out his brain stem, heart, lungs, kidneys and now spine. All of it checks out. All of it is 'normal'. As his Neuro Redevelopmental Specialist's nurse calls me and says his spine is normal, we sit there for a minute, complete silence. Bittersweet. Happy he does not have a form of Spine Bifida....but now what? Now, we are stumped. "We keep on trucking", she says. We hang up and I sit. I keep a smile on my face. I am so unbelievably honored to have been given the gift of my children. But it hurts so much to see another door closed. I feel defeated for a moment. Defeated for Cody. I love my son just the way he is. We aren't looking to change him, he doesn't have a disease that can be cured. But, he deserves to live the absolute best life possible and I'll keep on truckin' until my dying day to find that for him. Because hey, that's what mommas do! :)

As for an update as to what we're looking for... We have done all the possible testing to figure out his CO2 retention. That is top priority. There are no tumors or malformations in his main organs, etc. So, it is most likely neurological. Next stop is another pulmonary doc, this time in Little Rock instead of Lowell. Dr. M's mentor is going to be seeing us. I'm excited about this. Then, genetics in July and back to Dr. K in Lowell in August. At this time, we'll most likely start the process for getting into Chicago. I'm ultra pumped about this opportunity. I have a feeling...this team of doctors is definitely our winning team. I am beyond grateful for these people. His doctors believe there is a unifying diagnosis - these are not just developmental delays from having so many surgeries as an infant. And that is what my search is for, answers. Because of Cody's journey, another child can be helped. Another family can have peace. And most importantly, Cody can understand his beautiful, different, amazing self.

Keep praying and keep believing. :)