I watched my 17 year old daughter type her college application essay on a borrowed computer in the hotel manager’s office. Across the lobby, on a couch, sat a little blonde girl sucking her thumb and caressing her doll.
Comparing the girls side-by-side felt like I was sitting next to an invisible wall that was seamlessly blending and contrasting my universe of yesterday with my universe of now. I was seeing my daughter’s yesterdays paralleled with her todays. Her yesterdays sat in one chair sucking a thumb and her todays were furiously typing the procrastinated final version of her college essay.
It felt like one of those times when I was a kid and I would stand perpendicular to the mirror on the bathroom door. By stretching out a hand and a foot to the side I would appear to be suspended in the air with both feet spread wide – doing the impossible. My eyes could not tell which mirrored image was reality, so I had to rely on my brain to be the smart one.
This hotel scene was much the same as the mirror trick. I was longing for the little girl’s reflection to be my current reality, but my brain was telling me that the true reflection was the grown woman typing her ticket to leave home.
This ticket would take her to a parochial college 3000 miles from home – a far distance both geographically and theologically. The distance will force me to reluctantly and abruptly relinquish the fantasy reflection I was seeing in this time warp mirror.
There comes a time when you have to trust your children to plan their own future – even if they are planning a very short future like the Cystic Fibrosis patient I met years ago in our Intensive Care Unit.
CF patients are experts on planning short lives. It is the most common genetic defect of its severity in the United States because it compacts life’s plans into fewer than three decades as it slowly nullifies future plans.
It is a disease that takes the cliche out the common question “What would you do if you had only one day to live?” The CP patient is constantly finding answers to that question.
This young woman had answered that question for every day of her past 21 years – especially her last day – and sticking with those plans was now the challenge of the staff and family.
With medical advances increasing the life expectancy of CF patients, she had recently moved out on her own. She was successfully tackling a new set of problems–going to college, getting a job, finding health insurance, building permanent relationships–all while keeping up the physical therapy and medications.
I was paged to the ICU that day because the question was finally being asked – What would she do with the last day of her life?
While end-of-life decisions had been made, mom and dad were entangled in an argument with the attending physician that was ignited by a potent mixture of pride and anticipatory grief. The definitions of death that are so pronounced in esoteric discussions, become faded and stretched in a clinical environment and the doctor was clinging to his definition of life.
For more than 18 years the family knew this day would come and the daughter had become an evangelist for the organ donation denomination. Her community activism urging people to sign donation cards was well known throughout our community.
Choices well known by most, but not by the physician upon which the family was now relying to sign the harvesting paperwork. A conflict of choices had arisen between the young woman’s family and the training to which the doctor felt so bound.
Now in a comma for several days, life signs were fading and time was running out for the organ donation to be feasible. With the doctor reluctant to sign, the parents and their lawyer wasted crucial hours with the hospital administrator and the papers were finally signed.
The philosophical question of what to do with her last day became a mute philosophical point when the wait became too long for the organs to maintain viability.
The Christian scripture tells a parable about a man who had planned to be a successful farmer. When his crops had surpassed all expectations he filled his days making plans to build bigger barns, but Jesus called the man a fool. He pronounced that this “very night” his soul would be required of him.
Some might have called this girl a fool too, because the remarkable thing about this girl was that she refused to live life in a waiting room. Even though she was able to predict the approximate time of her death, she made choices each day as if it would be her last. While her heroic choices. at first, seemed squelched, her choices were fulfilled many times in the potential donors she encouraged to sign donor cards.
We know that one day we will all die, but plans never seem to be forthcoming. We are blessed with the same knowledge this girl had about her life and death. What plans will we make?
For more info on CF and what you can do to help, go to www.cff.org.