It was if I had known her for years. I was speaking on the phone with Angela, a woman that I had never met and yet we immediately clicked. We both were moms to kids with special needs. She had adopted her autistic brother when her parents passed away and she struggles herself with chronic illness. Despite the busy commitments of our lives, we both shared our passion to advocate for the rights of the disabled and their families.
I called Angela after I reached out to Allyson Scerri of New Beginnings, whose local advocacy for brain injured patients and their families hits home as we eagerly watch the progress of Brendanʼs House on Sound Avenue. Allyson directed me to Angela when I offered to contact some doctors who I thought might be willing to advocate for Jahi McMath, the little girl from Oakland, Calif. who was declared brain dead after she suffered a heart attack during a routine tonsillectomy. Angela is a lawyer who helped to advocate for the transfer of Jahi and now finds herself, along with Allyson, advocating for many other patients and families across the U.S.
This case really hit close to home because of the age of the little girl and because of the lack of consideration of the parental rights. While most families canʼt imagine being in that position with their loved ones, I can. Not so long ago, my daughter suffered a near fatal hemorrhage in the major artery of the brain. While it was initially thought that she died on the operating room table, she made a miraculous recovery that defied all odds. Thankfully we had the professional support of the doctors and nurses who worked diligently and successfully to save Johanna and give her brain time to heal. However, I recall one friend, who we thought understood these life issues better than most, asked my husband if we were simply “postponing the inevitable” and suggested that we remove life support and let her die. Needless to say, that was a dividing line in our relationship with that person.
The whole notion of brain death was a definition that was developed in recent years and the criteria is somewhat vague. Opponents of the term include renowned doctors and experts in the field of neurology and medicine. There is much controversy over pressure from organ donation advocates to declare a person brain dead. In the midst of this controversy, I believe we should always err on the side of respect for all human life. Organ donation is a beautiful gift and so is giving a person time for recovery and/or natural death.
I spoke with Angela a few times over the last few weeks and connected with Allyson as well. Angela invited me to attend a meeting of health care professionals, lawyers and advocates in Washington DC. They were meeting to discuss how to help support families who find themselves navigating these precarious roads of decision when a loved oneʼs life is held in the balance. Both my husband and our pediatrician encouraged me to go.
As I packed up to head out the door and into that snowstorm on Tuesday morning, I had a last minute thought. I decided to ask my son if he wanted to drive with me to DC and stay with some friends from college. Since he had two days off of work, he decided to make the trip. As we drove, I got to hear a little bit more about my sonʼs trip to
Guatemala and how touched he was by the warmth and generosity of the families they visited there. He listened to me as I shared my concerns for people whose lives are in jeopardy because of this brain death diagnosis and the pressure to end their lives. I listened intently as my son shared his perspective to remind me that those doctors arenʼt all adversaries, but rather are professionals who are considering the lives of other patients, whose lives could go on only with the organ donations. We covered alot of philosophical ground, but it took seven hours to get to northern New Jersey.
Thinking I was invincible, we literally plowed through the snow. I was supposed to pick up Allyson at a hospital where she was visiting with a family in need. When we got off the exit, it was clear that we werenʼt going any further. We all checked into hotel rooms and decided to look at our options in the morning.
In the meantime, my son and I hunkered down with pizza and beer and wine. We played pool in the hotel bar. Then he rented the movie “Guilt Trip” with Barbara Streisand and Seth Rogan. Itʼs about a mother and son who drive across country. I was laughing so hard that I began to cry. There were way too many parallels to our snowbound trip in that movie!
We never did make it to the meeting. On the ride home, I got to know Allyson and her passion for helping children and adults with brain injury. I heard the story of her Dadʼs accident and the stories of some of the families she has gotten to know, like Michael Hubbard, all miracles in the making if they have someone who will believe.
In this society, we want things to be measured to be meaningful. We quantify and qualify things that we do to place a value on their importance. We want to quantify results to insure success. Life is rarely like that; especially when you live with a person with disabilities. If I carefully weighed all my options that Tuesday, considered the time, the money and the snow, I probably should not have even attempted to drive to DC for this meeting. But I have a passion to advocate for life, my daughter was well cared for and my son is great driving in the snow! If we hadnʼt gone, I would have missed the opportunity to spend 24 uninterrupted hours with him. We had time to talk, to laugh and to play pool in the hotel bar. On the way home, sharing with Allyson and hearing the stories behind her journey into advocacy was such a blessing for all of us. Even though we missed our goal, and time didnʼt seem well spent, we all learned more about each other, about people with disabilities and simply had fun.
It is a difficult thing to qualify the value of human life and even harder to quantify it. Psalm 90:12 says, “Lord, teach us to number our days correctly, that we may apply our hearts to wisdom.” If we allow, the Lord will show us the quality and the quantity of our lives and we will grow in wisdom to see the value and purpose of every life.
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