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Diane Shader Smith

Updated: Oct 8, 2018

In May my mom died, last week my daughter. This has been a very difficult year. While our hearts are broken, I don’t want today to be about grief. Instead, I want to share a few memories of Mallory and hear stories from some of her closest friends and family.


Mal called herself a cockroach, saying CF keeps trying to kill me but I don’t die. She knew dying was a real possibility and in fact, left written instructions. These are her words:


- I want my family to lean into each other, not shatter, while dealing with grief.

- I want my parents to support and embrace Micah and cultivate a rich family life with him despite his making choices they might not agree with.

- I want to be remembered – all the stages of my life, NOT just me as a sick person at the end.

- I want my death to bring positive change, by spurring people to love more fiercely, take advantage of opportunities, enjoy their lives, and to give back and make an impact in healthcare, social justice, and the environment…these are issues about which I was passionate.

- I want my mom to read my journals, and edit them to get rid of anything that’s mean or hurtful. I want my journals to provide insight and material for people to feel like they have something left of me to hold onto. I wouldn’t want it to be something that hurts anyone because of something I wrote when I was emotional or upset years ago.


When Mal was getting ready to leave for Stanford, I told Maria that with Mal gone we didn’t need live in help. She was part of our family and so I would do whatever I could to her find another family for her to work for. Mal interrupted me to say that if Maria wasn’t welcome to live with us, when it was time to come home for Thanksgiving vacation, Mal wouldn’t be coming home. Maria is still living with us 7 years later and is here today.


A few years back, when it was clear to me that our beloved Dewey, 11 year old white lab, was struggling to get up because his hips were bad, I told everyone it was time to put him down. Mark and Micah weren’t happy with this but seemed to understand I didn’t want him to suffer. Maria called me a murderer. Mallory simply asked, are you going to put Grandpa down too because he has a bad hip?

There are so many stories of Mal and her instinct to protect the underdog, or in this case, the dog.


As many of you know, I was Mal’s Wingmom. Got the nickname years ago, when we were on vacation in Hawaii and I would troll the beach for her finding kids to play with, and in later years, when we were out and about with her friends I’d call out CBAs, which stood for cute boy alert.  As the years passed, and her health declined, my job as wing mom was about creating a life for her inside our various homes with dinner parties and movie nights so that she wouldn’t be isolated. Through all this I’ve come to care about Mallory’s friends with the same love I do my own amazing friends and often say I channel my inner 25.


A few weeks ago, right before Mal went into the hospital for the last time, Mark surprised me with this Wingmom license plate.  I thought it was super cool but wanted it as a work of art, not for my car. Mallory looked at Mark and quietly pulled me aside to say that Mark had been working on getting this for me for a year and she was afraid I’d deeply hurt him if I didn’t use it the way he’d hoped.  This was vintage Mallory – always reading social cues and worrying about people’s feelings.


On one of my visits to LA, when Mark was in Pittsburgh, I tried repeatedly to reach Mark but he didn’t answer. Mal had had a bad bout with hemoptysis and I was worried sick. After four tries I gave up. About 15 minutes later Mark tried to call me but I was so upset he hadn’t taken my calls I decided to punish him and not answer. He was completely on to me (I guess it’s hard to get away with anything that transparent after 30 years of marriage) and said if I was going to be so childish we should just get a divorce. Mal was a witness to this exchange and gently told Mark he was overreacting. She explained to him that I was distraught at leaving her and to cut me some slack.

How Mallory was so wise, so caring is still a mystery, but it explains why she was so beloved … as she always put the needs of others before her own.


Mal’s friends are too numerous to name. But I can tell you she had great taste with regards to whom she chose to hang out with. In all the years she made her own plans, I never ever had to suggest that someone was NOT a good influence. Same for the boys she dated. Starting with Julian and ending with Jack, we came to care about each one of them and saw them through her filter – as kind, caring and beautiful people. When friends would complain that their moms didn’t approve of their boyfriends, she would thank me for accepting each of her choices. I told her it wasn’t hard to do as she had impeccable taste. Especially with Jack.


I had planned to tell you more about this amazing young man and the beautiful relationship he shared with my daughter, but Jack is going to speak and since he’s the ONLY non-family member who gets a pass on the time limit, I suspect you will understand why we have grown to love him and consider him family.


Just want to share one moment, this past summer when Mal, Jack and I were hanging out on the couch in Pittsburgh. Jack turned to me and asked if I would ever let Mal live with him. I was incredibly touched by this respectful and mature gesture but something inside me said I’d better not answer. I took a pause and in that moment, Mal jumped in and looked at Jack incredulously and said, why are you asking HER. I can decide with whom I will or won’t live. Despite her easygoing nature and skills of diplomacy, she knew when and how to assert herself.


After transplant, in the brief period between when she’d finally gotten past the unbearable surgical pain and before she wound up back in the hospital, we spent MANY hours talking about Jack, their future and what she wanted for herself. She so wanted to live with him at the beach but said he might be moving to the East Coast for work or grad school. I said whatever she wanted to do was fine with me but the one thing I didn’t think she should do is have a long distance relationship once she was FINALLY able to live with some semblance of health. Mal said she would never do that. Her words, Mom, Jack has made so many sacrifices to be with me I will support him in whatever he wants to do. Always unselfish, always putting the needs of others before her own. That was Mallory.


Mal was also an overachiever. In addition to being a 3 sport athlete in high school and winning Athlete of the Year, she was a straight A student and Prom Queen. This last accomplishment became a running joke between us as I would always list it when talking about her and she would say, mom, no one cares, always accompanied by a very dramatic eye roll. But I maintain that it speaks to her popularity as she wasn’t the prettiest girl in the senior class but rather loved by so many.


Two sports stories about Mal. The first was when she was on Bruce Resnikoff’s basketball team in 6thgrade. The tallest on the team, Mal was usually in a position to shoot the ball but would often get fouled. She’d head to the free throw line and then almost always miss. But in the final playoff game, with the score tied, she went to take the buzzer shot, and was fouled one last time. She found herself back on the free throw line in the swim gym at Beverly High. The entire season was on the line and I remember looking at her and noticing across the court that on the other side was Jack Nicholson, who was waiting to watch his son in the next game. In that moment, I thought I was going to barf, so worried that Mal would carry the weight of the world on her shoulders if she missed. She picked up the ball, threw it straight into the hoop and secured the championship. Her competitive spirit, fierce determination and natural talent would serve her well for the rest of her short, sweet life.


The second story was when Mal was a sophomore in high school. It was the day before CIF volleyball, the start of the championship series and Mal got really sick. She wound up in the ER all night on an IV morphine drip. The next day she wanted to be released so she could support the team. Her doc said no so Mal checked out AMA, Against Medical Advice. She told me she wanted to suit up to sit with her team. I was worried she’d be too sad not to play but she insisted. Next thing I knew, she was her on the court warming up and then when the whistle blew to start the game she was in the starting line up. I freaked out but she was determined to play and was on fire that day. Her team advanced to the second round, the first time they’d done that in 14 years. Mal’s grit never ceased to amaze.


Hawaii was always Mal’s happy place. Our vacations were either to Maui or Oahu. About one particular trip she wrote this in her journal:


When I’m there I’m in my element. I’m in the sunshine, I’m happy, I sleep well, I’m not stressed, I exude confidence, I’m in the water, playing volleyball, surfing and doing these things WELL. There’s some combination of factors that makes me stand out in some way, and it makes it really easy for me to make friends and talk to people (because they start talking to me first, or smile at me and show that they’re receptive to me talking to them). By the end of each trip I am friendly with all the people who work at the rental place (who give out the surfboards, towels, waters, etc) and with people I meet on the beach. This trip I wasn’t with a friend and it was nice to not feel alone and still have plenty of people to talk to. It struck me as I was returning to California and realizing that a lot of times at Stanford I feel like an anonymous person; I have some very very close friends who are so loyal and who I love so much, but in terms of the class as a whole, I think I’m pretty unknown and don’t get out that much and never meet new people. So it’s nice for once to feel like people notice me and care that I’m there and know who I am, instead of me just being a random person going about my life independently while everyone else goes about their own lives separately. 


Mal was always humble, always modest, never understanding how many loved and admired her or how many were inspired by her life.


Until we started the transplant process, life seemed manageable. But when it came time for Mal and me to move across the country, we were both scared of the unknown. The best part of this process was meeting the new medical team and finding the most amazing place to live. We set up a life there and many of our friends and family came to visit. We were happy and hopeful. I would sing to Mal, somewhere over the rainbow there are lungs. It was my version of prayer. When transplant finally happened, I change the lyrics to, somewhere over the rainbow there were lungs. And the dreams that we dared to dream really did come true. The rainbow became symbolic for all our hopes and dreams.

So many people cared about Mal and asked me for updates during the end. It was not possible to respond individually and so I chose Facebook as the way to share her story. All the time people took to comment was and continues to be such a gift, as I would share them with her. In the beginning, she would smile and we’d talk about the comments but as things progressed I would read them to her and she’d muster a little smile.


Now that she’s gone, in private moments when Mark, Micah and I are alone with our grief, we will look back at everyone’s pictures and posts and relive the magical moments of her life. These memories will be a blessing.


Near the end, Mal said, Mom if I die you’ll get your life back. She also said her biggest fear of death was what it would do to me. Even facing death, she was thinking of others. Mallory, you put up the most amazing fight and lived so much longer and so much better than anyone hoped after you were colonized by cepacia. You deserve to let your beautiful body and soul rest in peace. I love you and will hold you in my heart forever.




About

The diaries of Mallory Smith, a remarkable young woman who was determined to live a meaningful and happy life despite her struggle with cystic fibrosis and a rare superbug—from age fifteen to her death at the age of twenty-five.

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