On February 14, 2004 at 7 PM, my family’s world divided into Before and After. There are many events in life that make this division — birth, marriage, and yes, death. Even each moment of the day carries a breath of Before and After, but it’s smaller — before and after. Before and After worlds are filled with tasks and routines that change forever, due to the addition or removal of a key player in one’s life. Some changes are welcome and dear and others are painful and harsh. I find this happens whether the Before/After moment itself is glorious or painful. For example, each of my daughters’ births were also Before and After moments. Before their births, we had lots of sleep and less concern over the manner in which we spent our time, among other things. We also didn’t have the love and richness they brought with each of their births. After their births, we had a lot less sleep and a lot more to worry about, but the scales were more than balanced with the experience of being parents. Jasmine’s death is, to date, the same, an After world with both pain and moments of gratitude and knowing.
Jasmine’s birth brought us a gift that grew stronger with each passing day, and that gift was the realization that people are basically good and that, given the chance, they will show this through generosity, both of spirit and action. Jasmine was born with cystic fibrosis, a genetic disorder that affects the viscosity of fluids in the body. This mostly manifests in problems with digestion and repeated lung infections. While she had many of the classic signs of CF from the start, she was not diagnosed with until she was just over a year old.
Jasmine had her first lung infection when she was about 9 months old. Jeff and I were ignorant at the time of her CF and we were also dirt poor students, struggling to make ends meet. We knew she was sicker than a normal cold and that she needed to see the doctor. Problem was, we had neither insurance nor money. Jeff had recently received some antique watches from his grandmother and decided he would try to sell one or two to finance the doctor visit. He visited a local antiques dealer and spent some time trying to get the watches evaluated. It turned out they were in too poor condition to be sold, but the dealer sensed there was a reason Jeff was trying to sell them and asked. Jeff told him about Jasmine and relayed that we were trying to raise the money to take her to the doctor. The dealer insisted on paying for Jasmine’s doctor visit, and asked only that we do the same for someone else one day as repayment.
This event set the stage for the next ten years of kindnesses visited on our family. We have experienced kindness from individuals, from corporations, from family, friends and community members. Most everyone who met Jasmine seemed to be touched by her, deeply. She seemed to reach people in a special way, with her quiet and resigned acceptance of all the pains of her disease, and her intelligence and sharp wit in conversation. I can’t count the times someone remarked to me that Jasmine seemed to be an “old soul” or that she was inspiring in her handling of the discomforts of multiple hospital visits full of pokes and prods.
Last March, on the 27th, we had another Before/After event when Jasmine received a double lung transplant. The eleven months that she had After that were largely filled with activities that were impossible Before. She was able to run, to shout, to laugh without coughing. While we were still intimate with the medical community, and while we knew Jasmine’s time with us was still limited, we packed a lot of living into that time.
We are still exploring this After world. Right now, it is hard to find any light in it, but the moments that do come are in the spirit of life with Jasmine in the Before world — they are moments of kindness, both from strangers and familiar faces alike. I have an aching sense of something missing. When we go out, I constantly feel like something is missing, or I’m forgetting something, and I think it comes from the sense of “right” that my mind created around having three children and a husband when I looked around. Every fun, interesting or painful moment makes me wonder how Jasmine would respond. I scrutinize every vaguely metaphysical event for a sign or communication from Jasmine, and then, if I see something, I immediately doubt its credibility, fearing instead that my mind is providing comfort via misperception. I read everything I can about grieving, wondering if I’m “doing it right” or if I’m not feeling deeply enough. Then, when I’m seized by a spasm of grief, I worry that I’m feeling too deeply and that I will never surface from the depths of pain I feel. There is a hole in our family fabric, a hole that used to be occupied by a vibrant, intelligent girl who was full of promise and life. I don’t think we will ever fill it, but I do hope we can at least heal it, so we can carry the mark but bear the pain. I think about firsts that Jasmine will never have — kiss, driver’s license, apartment — and about things we were in the middle of — books, fourth grade, learning to play the guitar. Moments leading to her death are burned into my memory with painful clarity and visit me often when I lie in bed at night trying to sleep.
Still, we have also experienced deep and loving support from our families and communities, Jasmine reaching to us over the distance, reminding us that people are basically good and that, given the chance, they will show this through generosity, both of spirit and action.