He was the best I could ask for

A picture of Keith riding on a pontoon boat and smilingsmiling

Dad passed away about a month and a half ago. I’ve been struggling to write this ever since. Many of you knew dad, at least in a way, but probably didn’t realize it. I’ll talk more about that soon.

He was 70 and fighting liver disease. He responded well to treatment for a while. But after a few bumps in the road, he didn’t bounce back the way anyone hoped, and his quality of life suffered. Another turn for the worse, and it went downhill quickly after that. Of course, we miss him terribly. But if it’s going to happen, quickly is best. He was at peace letting go, and so were we. My sister and I didn’t want him suffering, and he wasn’t uncomfortable for long.

If you would like to offer support, we are asking for donations to Children with Diabetes via https://cwd.is/ForKeith. Please add “Keith Johnson” to the “In Honor Of” field after choosing a donation amount. The “In Honor Of” field is on the second page.

Life lessons

When I lost my mom in 2005, I shared an important lesson she shared with me while growing up with diabetes. She taught me never to use diabetes as an excuse, or others may extend that excuse without my permission.

Mom and dad dressed up

Mom was a career nurse and was amazing at it. She was so good that she spent many years at the hospital on a team called the “Flying Squad.” That meant that wherever they needed nursing help in the hospital, she would step in and take over. Can you imagine the amount of stuff she had to know? It amazes me.

Her being a nurse also gave her an above-average familiarity with needles and shots upon my diagnosis in 1980. I bet that was helpful. But nursing probably also exposed her to patients in the hospital dealing with long-term complications of diabetes. That must have been terrifying. 

Dad joked that he was the original “Mr. Mom” because he was home looking after us and cooking dinner while mom worked the second shift. Now you know where I developed my love of grilled cheese sandwiches. That also meant he was doing a lot of diabetes management for me until I got older.

Dad had a quiet, kind, and steady way about him. I learned just as many important lessons from him as I did from mom. But his lessons came more in the way of observations and examples. Those examples taught me a lot about patience, hard work, optimism, and unconditional love.

While mom was usually a bit more cautious about decisions and change, dad’s approach was, “It might be great – you’ll never know until you try.”

Looking back, the balance between the two of them was perfect. 

He was a gifted gardener. He and mom transformed a city lot in South Minneapolis into a beautiful garden oasis. A few of you have even seen it. I didn’t know until going through his stuff, but he and mom won several gardening awards from the city over the years.

Dad was a learner, he had what today would be called a growth mindset. He was also a great writer, though he didn’t share much of what he wrote. Dad helped raise four amazing grandkids, taking over daycare duty and pouring himself into them after mom passed. 

Dad and the diabetes community

You might not know it, but dad was so connected to the diabetes online community. For those of you with blogs, he loved reading them.

He was the first in the family to get an iPad – before me even, the early-adopting techy one in the bunch! He wanted an easier way to sit in his spot and read blogs. It helped him get even closer to me and my life with diabetes after losing mom. You all really drew him in, though.

Before long, he started telling me about new diabetes blogs he found that I should follow. He’d fill me in on the latest events before I had a chance to read them for myself. He even started following #DSMA and would watch diabetes conference hashtags on Twitter. 

You wouldn’t know he was there unless you got an email from him on a special occasion or maybe a fundraising donation when he could afford it. He just quietly and consistently rooted you on from afar and brought you up with me when we talked.

Breaking records with the 2019 #SpareAFrown campaign

In the fall of 2018, dad had an idea. Are you familiar with the annual Spare a Rose efforts that support Life for a Child? If not, I’m linking here to a great post from Renza about it. She is a key part of this story with dad. Another character in this story is Chris, who is better known as “The Grumpy Pumper” or “Grumps.” He is famous for never smiling on camera. Well, almost never.

Dad asked me to reach out to Renza. She describes the rest of it beautifully. Here’s a snapshot from her original blog post:

An image from Renza's blog explaining the idea of SpareAFrown 2019
Renza describes the pitch, the pause, and the agreement!

It was a terrific campaign, and dad was right. The idea of getting Grumps to smile in front of a camera was a great incentive. With lots of help from friends like Frederik Debong, Bastian Hauck on behalf of #dedoc, and many other generous donors, big and small, the #SpareAFrown goal was met and we have Grumpy smiling – on camera. Something many of us thought downright impossible.

Dad sparked an idea that put huge smiles on more faces than just Grumpy’s.

2019 was the most successful year for Spare a Rose yet, raising $56 thousand dollars and providing 1 year of insulin and education for 939 young people with diabetes through IDF’s Life for a Child program. 2020 was even more successful, and I hope the trend continues. 

#SpareAFrown is one of my favorite stories of dad quietly working his magic within the diabetes community, but there are many more. There are probably a bunch that I don’t even know about. That’s the kind of guy he was. Quietly and steady supporting and boosting wherever and however he could. He loved you all so much.

Pictures and memories

Sitting together as a family
A fun oldie with mom, dad, and my sister

Mom and dad were amazing parents and I have nothing but great memories from growing up. Thinking about them being thrust headfirst into my diabetes diagnosis at the age of five, I am so grateful for everything they did. Like so many of you parents of children with diabetes. I have so much respect and admiration for all of you.

Me and my sister with my fifth birthday cake
Me and my little sis. Based on the birthday candles, this is 15 days before my diabetes diagnosis.

Mom and dad bent over backward to help me never feel different because of my diabetes while growing up. They went the extra mile to help me do the things I wanted to do. I struggle to think of a specific example to share. It’s more the principle of collectively doing the best we can to figure out a way to accomplish our goal safely. I learned so much from that process because they involved me as much as possible.

Me and dad standing together in the living room
Me and dad when I was about 15 or 16.

Dad was a great man who taught me many lessons. I’ll treasure his influence on me forever, and do my best to continue spreading his generosity and kindness with the world. Thank you, Dad. The difference you made in the world continues to grow.

If you would like to offer support, we are asking for donations to Children with Diabetes via https://cwd.is/ForKeith. Please add “Keith Johnson” to the “In Honor Of” field after choosing a donation amount. The “In Honor Of” field is on the second page.

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Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

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