Maggie had a poetic verse that she always kept in a frame in our family room. I believe the source is “anonymous,” but it always gave me comfort after Maggie died. I can’t recall if I shared it with you in earlier posts. If I did, I apologize. I recall it now because it speaks so perfectly to how I feel:
One of my daughters and her two sons were here yesterday to celebrate Maggie’s birthday. Every year since Maggie died, the four of us go to a steam near my house and place four blue carnations (Maggie’s favorite flower and color) in the water and watch them float out of sight. I love it.
I did want to return to my last post and continue with what happened after the doctors told Maggie and me that our son, Mike, had limited choices to extend his life. I also wanted to point out that although Mike was now 22 years old and enrolled in a post high school training program for the blind in a neighboring state, he was not functioning at his age level. The repeated surgeries and radiation treatments to his brain throughout his life did affect him. Although 22, he was probably functioning more as a 13 or 14 year old.
There were no longer any realistic hopes that Mike would survive his current condition. Both shunts would continue to clog, making it impossible for his body to drain the fluid from his brain. The cranial reservoir could only prolong his life for a matter of months before an infection would definitely occur and, according to the doctors, would cause Mike significant pain.
As born and raised Catholics, Maggie and I were always taught that all life is sacred and one should never give up on the possibility that God could intervene. In fact, from the time I was ten years old and all through high school, I wanted to become a priest; that’s how steeped in Catholicism I was. However, Maggie and I had already decided that this idea of holding on, hoping and praying for a miracle, didn’t make much sense. Maybe that’s giving up or maybe it’s just facing reality. Anyway, it wasn’t our decision to make; it was Mike’s. And we would honor whatever he chose.
The 45 minute ride home from the hospital was quiet. Mike was asleep in the back seat of the car, exhausted from all the tests he endured. Maggie and I remained in a daze. We were lost in our thoughts and weren’t sure how soundly Mike was sleeping. He hadn’t been told about the results of the testing and seemed too tired to ask any questions about the results. We didn't want him to find out half asleep, speeding down a highway. So, we all rode home without a word spoken – Mike slept, Maggie stared out the window, and I simply focused on the traffic surrounding me.
After we arrived home, Mike went straight to bed and was asleep within a few minutes. Maggie and I went to the kitchen, where she made a pot of coffee and poured a cup for each of us. We sat at the kitchen table staring straight ahead, hesitant to begin the conversation neither of us wanted to have. A long time seemed to pass, although it was probably only a couple minutes, when Maggie placed her hand on mine. Then, turning her head to me, she clasped both of my hands and with quivering lips, broke the silence, “How do we tell him?”
I didn’t know how to answer that. It was such a simple question, yet I didn’t want to think about it. “You’re dying Mike. And there’s nothing more we can do.” That’s the stupid answer that kept racing through my mind. How do you tell your son that it’s over; that your mom and I are helpless, and that you have to decide how your life will end?
I turned my head from Maggie’s eyes, afraid of the emptiness I might see. Staring down at the table, I muttered, “I don’t know. Maggie, I don’t know what to say to him. I’m not sure that I can tell him the truth - that he’s going to die soon. I…I don’t know that I can be that honest. I’m afraid.”
Maggie squeezed my hands tighter, “Do you think he already knows?” I mean, don’t you think that at some level he knows that it’s different this time. This past year’s been terrible. His headaches have been more frequent and far more severe.”
I slowly pulled my hands to my face and burying them in my palms I mumbled, “Maybe you’re right. But if he doesn’t, this is going to scare the hell out of him. I don’t want his final days filled with fear. Maybe we can give him a little hope? I don’t mean lie to him. Just not tell him that he’s definitely going to die.”
Maggie agreed and we spent the next few minutes agonizing over the details: What exactly should be said? Who should be the one to tell Mike? When and where should this happen? When do we tell our other children and what part should they play in this? And so many other questions.
This was one of the most difficult conversations Maggie and I ever had with each other and we didn’t necessarily agree on the fine points of all the issues. However, we both agreed that we would wait at least one more day.
Mike had gone through enough in the past 48 hours.