Christopher's Miracle Story: Opportunity knocks

Friday, August 16, 2013

Opportunity knocks

I was embarrassed. My baby had been admitted to the hospital with a horrible infection, and I was hundreds of miles away at a conference. I should be with him. I shouldn't be here, but circumstances beyond my control had intervened. I still felt guilty. I couldn't help myself. Is he scared? Is he wondering where I am?

Today was the last day of the conference. I had traveled a long way and left my sick child just for this moment, this opportunity, to ask questions of the international panel of doctors. Opportunity was knocking, and I had every intention of answering the door! I readied my list of questions, and we made our way to the conference room.

As we sat down at the table, I hoped no one would ask me about Christopher. I didn't want to have to explain how my baby had been rushed to the emergency room, but that I was still here. These parents probably wouldn't have let a little thing like the airlines stop them from returning home to their sick child. They would have rented a car and drove home. They would have walked home if they had to, but here I was drinking coffee and eating a muffin while my child was sick in the hospital. I must be the worst mother EVER! Can they tell how guilty I feel, how embarrassed I feel?

Apparently, the answer to that question was yes. I barely had a chance to get comfortable in my chair, and I was asked about my son. Should I just tell them about his digestive disorder and leave out the part about him being in the hospital? I really didn't have time to think about my answer too much before I heard myself saying that he was sick with an infection in the hospital. I waited for the condemnations. After all, I deserved it. I shouldn't be here. I should be with him, but they didn't come.

I was surprised and confused. Surely, they were looking at me and wondering what in the world I was still doing here? Instead, they comforted me! These were parents who understood the bind that I was in because they were in the same one too. Several of the parents even told me that their children were already in the hospital when they had left to come to the conference. One mom consoled me by telling me that if you waited for your chronically ill child to be perfectly healthy before you went anywhere, then you would never go anywhere. That's why they call it chronic illness. I felt better. I appreciated the support, but I still felt conflicted inside.

The panelists filed in and took their spots at the front of the room. As the days events began, I scanned the room. There were a lot of people in attendance. I was getting concerned that there wouldn't be enough time for everyone's questions. The moderator began the question and answer session, and instantly hands went up all around the room. This was going to require patience and persistence, but I was up for the challenge.

After what seemed like an eternity, I heard it. Was that opportunity knocking? The moderator pointed to me and indicated that it was my turn to ask a question. I stood and began to explain my son's situation, including the fact that he had just been admitted to the hospital with a very critical infection. Occasionally, the panelists interrupted my commentary with specific questions, and then they gave me what turned out to be LIFE SAVING recommendations about how to help Christopher.

All the doctors agreed that the current medical plan for Christopher would eventually lead to his death. It was just a matter of time before an infection killed him. The fact that he was currently in the hospital seemed to support their argument. They had some ideas on how to help Christopher. A couple members of the panel offered to meet with me after the question/answer session in order to design a specific plan.

How the plan looked on paper.

Not only did they give me specific instructions about what to do, but they gave me written step by step instructions. They even drew some sketches of what his new feeding tube would look like. One of the doctor's who was based in Texas offered to talk with our surgeon and GI specialist about the plan. He gave me his address and phone numbers at the hospital where he could be reached.

Knock, knock! Who's there? Opportunity! Come on in!!! I was ecstatic. My mom and I were giving each other high 5's. The heaviness in my heart suddenly felt a little bit lighter because there was hope, and that made all the difference.