“I have learned over the years that when one’s mind is made up, this diminishes fear.” -Rosa Parks
This post has been difficult to write. I’ve started and walked away several times because it’s about my son’s Type 1 diabetes diagnosis last week, and I know that I have only just begun to scratch the surface of my emotions.
Last weekend Ken and I took the kids to an indoor climbing gym to try out rock climbing. As we continue to backpack, and encourage the kids to get outside, I thought it would be fun to add rock climbing to our adventures. I have not been able to go on many hikes lately. We have done some nature walks, but between my 40th birthday taking up time, family visits and life, I have not made it to any good trails lately. My itch to get out and do something became so uncomfortable, that I realized we also needed some kind of indoor winter activity we can all do together other than a regular gym. I am scared of heights, and I knew this would be a good way to face one of my fears because I wasn’t going to chicken out in front of my children. Overall the climbing experience was great, we all loved the trial climbs, and then bouldering. Not being aware that two days later I would be in the hospital with my oldest son, having to face a small fear with a good reward on Saturday had in fact helped prepare me for what lay ahead.
Last Monday morning my oldest son James woke up and said he felt terrible, and that he had to get up in the middle of the night several times to pee. I was diagnosed with Type 1 diabetes in 1985, my youngest Charlie was diagnosed in 2015 when he was only 2 years old, and I knew instantly that James had developed diabetes, too. Although it runs in the family, I often talked about how difficult it would be if both of my kids got it. I could have had James’s blood tested to see if he had the antibodies to insulin, but I didn’t want to know they were there and then just wait to see when diabetes showed up. I was in denial that he would get it too.
James watches his younger brother Charlie
“Anger is a healthy response to injustice. Grief is a healthy response to loss. Fear is a healthy response to the unknown. What’s not healthy is suppressing that response until it warps your ability to decipher your own intuition and respond. There is nothing wrong with you for experiencing negative emotions. There is only something wrong with a world that is invested in you continuing to deny them.” – Briana Wiest
I recently finished The Mountain is You by Briana Wiest and there is a good section in there about trusting your gut, but how that can often be confused with fear. In short, irrational fears are intrusive thoughts that come out of nowhere, uninvited. Instinctual nudges come from sitting with your feelings and choosing the path that serves you, not the one that is scary and unknown. I know that between myself and their doctors, my kids are getting the tools they need to successfully manage their diabetes, but the irrational fear thoughts keep coming in loudly – their blood sugars going dangerously out of control, the amount of shit we will have to pack with us now, to the insane costs of insulin, CGMS (which monitor blood sugars 24/7 and are the best thing ever invented) and what happens if I lose my job, or find myself without insurance for some reason. There was a moment on the last trial climb when I was about 40 feet up, inches from the top, but my arms were tired and I was shaking and I felt this rush of fear flow down from the top of my head. I said “I have had enough. I want to come down.” With encouragement I made it to the top, but if I didn’t have an audience, I wouldn’t have. I find myself right now in a similar spot. If it were possible to just stop I would. But I have an audience – my children, my boyfriend, the students in my classroom – and I have to keep going.
Charlie, the fearless one, jumping from the top of a climb
“‘Attention is the beginning of devotion,’ writes poet Mary Oliver, pointing to the fact that distraction and care are incompatible with each other: you can’t truly love a partner or a child, dedicate yourself to a career or to a cause – or just savor the pleasure of a stroll in the park – except to the extent that you can hold your attention on the object of your devotion to begin with.” – Oliver Burkeman
When we were rock climbing it was Charlie who was first harnessed in and up the initial wall. He climbed quickly and without hesitation. James, 11, was next. He was more reticent about it, since like me he is scared of heights. I By the time it came to me I was more assured that the ropes were going to hold me, and that I wouldn’t fall. Even still, I was much more cautious climbing up, making sure I found secure grips and larger foot holds. Later, I struggled trying to boulder, and reflecting on this it is because I did not spend enough time staring at the wall, mapping out the route (something other climbers there told us to do). If I stretch this thin comparison, it is like what I have to do now. I need to take the time to step back, and give my attention to how I can advocate for children with diabetes, starting with my own. Like with Charlie, immediately after diagnosis I had to push hard and advocate for him in the hospital and at his school. Maybe from there it turns into doing something for other type 1 diabetics, particularly children, because I really hope that I can turn this anger, grief and fear into something positive.
-Liz