The last episode of the Red Band Society slapped me in the face and got my attention. You see, one of the young patients has Cystic Fibrosis and finally received his pager to be alerted when his new lung would be available. He took it appreciatively, but told others that he wasn’t sure he wanted to have the surgery. Then the words that grabbed me, “If I have the surgery, it would only be for my parents.” Alex had been through a series of surgeries and procedures throughout his life and I was aware that he was becoming tired of his ordeal. But, I don’t know what could prepare a parent to hear the words that he spoke to me that warm summer night as we walked out of the Emergency Room. We were going to the car and he was still feeling the effects of the pain medication he was given and the breathing treatment he took. He looked at me and calmly told me that he didn’t want to go on anymore. My mind wasn’t sure what he was saying. Finally I just came out and asked him if he meant that he wanted to die. He answered, “Yes.” ‘Shock’ does not come close to what I was feeling. “How dare you say that.” I said back to him. Was I shouting? Maybe. He abruptly turned around and asked me how I dared to tell him what he should do about his life and his body. After all, He was the one who had gone through all of the pain of multiple surgeries, endoscopies, narcotics for pain from adhesions, who had lost one hundred thirty pounds, had a permanent G-tube in his stomach and could not swallow food. This was without mentioning the narcolepsy, asthma, and ulcers with blood transfusions that he suffered on a regular basis. But, all that I could think was all of the work we had both put into his health and to let it all go now didn’t seem right.
I thank God that I made an immediate appointment with my therapist. That session did not turn out anything as I had envisioned it. She basically told me that I had a nerve to make it about me. Alex was the one who was enduring his existence since he was three years old. He was twenty-five now and was able to make his own decisions. Then she gave me the best advice I have ever received. She told me to go home and tell him that my husband and I were going to respect whatever decision he would make and that he was not broken. No, he wasn’t my project to fix. That he was perfect just the way he was. And, of course, that I was sorry for my spontaneous reaction. He was so grateful that night especially to hear that he was not a defective version of himself, but he was splendid the way he was, no fixing necessary.
I heard that gratitude for that talk once again after an Emergency Room visit, and we returned home. Alex gave me one of his huge bear hugs and told me that he loved me, thanked me for everything I do for him, and he brought up that conversation. He said that was what turned him around and allowed him to live for the past five years.
The next morning I went in his room to get him up for a doctor’s appointment. One more doctor had told us that he had the answer: One more surgery. I, as usual, was excited and hopeful, Alex not so much. I slowly walked toward his bed when there were no answers when I called his name. His lips appeared blue, His skin was cold. I knew he had chosen this time to go and he found peace, well deserved peace. He is now my bright shining star and my inspiration to help children with chronic diseases and their parents.