letting go and saving lives

I have a special post from a childhood friend today. One month ago today, she said goodbye to her mother. A mother who was dedicated, loving, and faithful. A mother who left this world far too early. Yet, in the midst of shock and grief, Helen was kind enough to reach out so that she could share her journey from the other side of organ donation.

On March 29, 2017, Christine Adele Jackson was supposed to turn 60. Instead, my four siblings and I were seated around a cramped table in a funeral home planning her services. As I write this almost three weeks out from her accident, the shock has not worn off and the tasks of wrapping up the administrative aspects of her life have really just begun. It may seem early to reflect, but my mother was an organ donor and April is National Donate Life Month. Through this entire ordeal, I kept thinking of Kelly and little Matilda and how much organ donation has affected hundreds of lives linked to one bitty girl. Until her death, my mother’s life had meant life for us five kids, but now it potentially means life for five more people and maybe enhanced quality of life for dozens of others.

Vibrant and energetic, mom ran circles around her friends and family. She was part of three different church groups, a women’s hiking club, she volunteered for Special Olympics, taught summer school, taught homebound students, and worked as a special education teacher. She hiked more mountains than me, kayaked more rivers, and loved more deeply than anyone I know. I always thought that mom’s soul purpose in life was to have children and love the heck out of them. Then my niece, Skylar, was born, and I realized that mom had five kids to increase her chances of having as many grandkids as possible. She understood kids, got right on their level, and could play with them unexhausted for hours on end. She was brilliant.

On March 26, 2017, I answered the phone even though it was an unknown number to a breathless woman telling me that mom had been in a horseback riding accident and she was in the ER. My fiancĂ© and I began packing our bags and making phone calls as we waited to find out if it was just a concussion or something worse. My older brother and his girlfriend were traveling in the Philippines, my sister was living in southern California, my other brothers and I were three hours away. A nursing friend called me from the hospital and told us to come now. It’s weird how you can know the worst yet remain hopeful. The nurses and doctors were very honest with us, but that didn’t stop me from staying up all night talking and pleading with her to stay.

My fiancĂ© and I just moved to Ennis, MT (mom’s Happy Place), with the intention that she would retire and come live with us. We had decided to have kids and she would be the best free childcare a person could ever ask for. We hadn’t told her about the potential for more grandkids yet, but she was ecstatic that we had moved. My mother was a devout Catholic and her faith and family were the two most important things in her life. I remember quipping to my brother, “The real trick will be to convince her to stay on earth when she has the chance to be with Jesus.” We laughed a little but I honestly worried that maybe if I had told her that she might have more grandkids, somehow, she might have decided to stay, as if this were her choice. In the end, biology and God won. Her bleed was too big, the swelling too significant, the ventriculostomy inadequate. We watched as they performed all the tests to determine brain death, nodded our heads as they described each test and what they were looking for, and held our breath as each reflex failed. The doctor just shook his head and said, “I’m sorry but this is diagnostic for brain death. This is the time and date of death.”

As the doctor left the room, I stopped him and asked if she was an organ donor. He hesitated. This is the part of organ donation that gets tricky. Doctors and nurses are instructed to NOT bring up organ donation. If a family brings it up, nurses are instructed to say something like, “I will let the doctor know you inquired” and note in the chart that family initiated the organ donation conversation. They do this to keep people that aren’t specifically trained for these situations from saying the wrong thing and confusing grieving families. Organ donation teams are notified every time a person dies in the hospital, but rarely do those calls amount to anything. The criteria for meeting donation eligibility are incredibly strict, especially in terms of whole organ donation. They don’t want to get people’s hopes up or start unnecessary family arguments. Donation teams are trained to know the legal aspects of the states they are in and how to communicate with families that are in the middle of chaotic, emotional, and traumatic events. The doctor knew I was a nurse, so he told me that mom had opted in on her driver’s license and that the organ donation team had been notified.

The “team” was an exuberant nurse named Dan and a quiet, soft-spoken social worker named Valerie. They took my brothers and I in a room and just let us cry and talk about mom. I kept catching myself trying to play nurse and daughter all at once. I was surprised that mom was an organ donor. She had told me she believed that someday God would return to earth and raise the physical bodies of all who believed and restore them to be with him in heaven. She wanted to be buried. The team listened. They never corrected me or reprimanded me. If someone in Montana registers to be an organ donor, that wish is legally binding. In the end, the team didn’t have to correct our fears or educate us because, despite our initial surprise, we weren’t surprised at all. Mom believed in the sanctity of life and demonstrated that through endless generosity.

What I want people to know the most about this process is how incredibly kind the donation team was and how incredibly gently the nurses took care of mom’s body while they found matches for her lungs, heart, liver, and kidneys. The process added four more days in the hospital. While those extra days were stressful, it meant more time for family and friends to come visit mom and say goodbye. Everyone was welcomed. When Skylar tucked a picture she had drawn for her grandmother in the blankets of the bed, they worked around it, always leaving it tucked in the sheets or up under her pillow. They fed us, gave us hugs, and let us cry in their arms. They listened as we told stories of our goofy little mother. And every step of the way they kept us updated on the plan and informed us of what they were doing and why it was important. They provided mom with a quilt to keep her body warm and hide the lines, drains, and tubes coming from her. The donation service paid for everything after the official declaration of death and even wrote us a letter reminding us that if we received any bills from the hospital during that time to please notify them and not worry about paying.

We were still able to have an open casket at her rosary service and luckily the dress my sister and I unanimously chose (she had looked radiant in it at my sister’s wedding) covered her incisions perfectly. Although I did not want an open casket and was out voted by my siblings, I was thankful for the opportunity to see her one last time without the ventilator tubes in her mouth.

The donation team said they would keep in touch with us. All they could tell me at the time of organ recovery was that her lungs were going to a 30-year-old woman with cystic fibrosis and they were able to successfully recover her heart, liver, lungs, kidneys, long bones, corneas, and tissues. We also received notice that two people successfully received her corneas. They told me that if our family wants to connect with the recipients that all communication starts off anonymously until both parties agree to reveal their identities. I want to know who these people are, but most importantly I want them to know who mom was. I’m scared that maybe their surgeries didn’t go well. I’m scared that this was their last hope. But I’m remaining hopeful that mom’s heart is still beating for someone else, that a part of her is still alive. Her willingness to donate life has given me the chance to have her light still shining on earth a little longer. Organ donation is about giving hope as much as it is about giving life. After all, what is LIFE if it is not HOPE?

Thank you Helen for sharing your beautiful words with us. Your mother will be missed, but she is also living on in such a special and unique way.

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