Katherine Draper

This year, I walk for Joe.

Joe passed away at the age of 21 on September 27, 2019. 

Below sums up why I walk for Joe.... and not only for Joe, but for all those born, growing up, and living with Cystic Fibrosis.

I wrote (and read) the following at Joe's funeral in 2019.

I met Joseph back in 2011, when I was still a student nurse. I can remember it like it was yesterday… I think he was in room 5, actually. I can remember it so vividly because he nearly killed me that day. You see, my first memory of Joe is as a scrawny little preteen with a wide smile and warm eyes, laughing hysterically as he sat in the doorway of his hospital room and aimed his remote control car at the ankles of the innocent nursing students. I remember glaring at him and wondering if I’d get in trouble if I scolded this kid. But if you knew Joe, you’d know it was nearly impossible to scold him. His smile and giggle were infectious… you couldn’t stay mad at him. That was my first impression of Joe.  I knew when I was eventually hired on to LCH 10 full time, that he’d be one to watch. I was right.

He liked to tell the story a little differently.  He loved to tell people that when I first started taking care of him that he couldn’t stand me. I gave him too many rules. I enforced bedtimes  on school nights, I lectured him about taking his medicine and doing his treatments, I fussed at him when he wasn’t eating enough. I will never forget one night he was INTENT on rolling around the unit in a wheelchair. I put a stop to it pretty quick, because he was supposed to be EXERCISING and all he was doing was goofing off in a wheelchair. Walking and moving was good for his lungs. (I lectured him about that all the time too). We ended up compromising that night: he walked and pushed ME around the unit in a wheelchair. Often on two wheels, I might add.  I think that is how I became Joe’s “Mama Kat”. That nick name wasn’t always a term of endearment… ;)

Joe was a bright spark. There wasn’t a person that he couldn’t charm. Everyone that met him, loved him. And he loved them back. Nurses. Doctors. Nurse Practitioners. Administration. Dietary workers who would drop his meal trays off. The Environmental Service workers who cleaned his room at the hospital. Respiratory therapists. The guys down in the Pulmonary Function Lab. Child Life. Volunteers. The Lab workers who came to take his blood. Other patients in the hospital. The PARENTS of other patients in the hospital. If you were in the hospital for any amount of time… you knew who Joe Clark was. And you loved him. It was that simple. When he moved over to the adult world, I’m sure it didn’t take long before they all started to love him, too. We weren’t very keen to share him, to be honest… it hurt us when he left the children’s hospital. But I’m so glad he had those nurses and others over there in the adult world…. So they could love him and be loved by him. It is a privilege, to be sure.

Not many people can make that claim, that everyone loved them. But Joe could. Of course, if you asked him about it… he’d deny it. He was humble like that. (Unless you were talking about his facial hair or his man bun, he was not HUMBLE about those. He was, in fact, very vain about those!)  As I was browsing over all the social media posts following his passing, one stopped me because it was a name I didn’t recognize. It was from one of his online friends who he “gamed” with while he was in the hospital. I reached out to her this week, and was shocked by her grief.  This was someone who had never had the opportunity to meet Joe in person… but they had played that game together nearly every day this summer, and countless number of times prior. They spoke daily. She told me she woke up right after midnight on her birthday to a stream of messages from Joe wishing her a happy birthday. Because that is who Joe was. An amazing bright spark who had so much love to give.

Like I said before, I have so many Joe memories. I will cherish every single one forever. I can’t possibly share them all here, or even pick my favorite. I will selfishly keep them all tucked away in my heart. I know each of you have those memories tucked away as well.

I know if Joe were here, he would be worried about me. He would worry about this grief that I carry. I have found so much comfort over the last week, reminiscing with coworkers and friends about the awesome kid that was Joe Clark. The kid that never let Cystic Fibrosis define who he was. He was the laughter in rooms 5, 6, 7, and 8. He was the smell of salmon being warmed up in the unit microwave at midnight. He was origami flowers. He was chocolate milk stashes and hot cocoa. He was a warm hug and a bright smile. I know that is how he would want us to remember him. He would want us to smile and carry on.

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