Recalling Memories Proves Helpful for Parenting

There’s something special about each day of the week. I enjoy Thursday because my weekend begins at the close of the day. I enjoy Wednesdays because it’s the middle of the week, and the weekend is closer (I think there’s a pattern here). Sundays are special because, as a United Methodist pastor, I lead worship and visit with my congregation (and an afternoon nap is always on the schedule). However, the best part of Sunday happens on the drive to and from church.

I’m grateful for my Sunday morning drives because my youngest son, Caeleb, comes to church with me, as he is always the cameraman recording the worship service. That 40-minute drive is the best part of my week. We listen to music, crack each other up with stories and jokes, and reminisce about the previous week.

At 16, Caeleb is transforming before my eyes. His wit and humor are quirky and charming, and how he views the world is extraordinary. As an artist, he sees the world through a different lens than I do. He notices the slope of the mountains, the orchards as they sprout new life, and the movement of the clouds with pure wonder. I’m often amazed at how we end up on particular topics of conversation.

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Caeleb’s recent struggles with arm pain prompted our latest discussion. He told me that one of his biggest fears is losing control. I immediately thought back to the days of daily infusions. With Caeleb’s fear of needles, accessing his port was a big undertaking. It was a frightening time for my son. My husband, Joe, and I were often at our wit’s end when trying to help him understand that infusions were necessary.

Caeleb would lie on a table in those days, and Joe would wait for him to give a thumbs-up. This was how he knew it was time to proceed and put the needle into the port. Unfortunately, it was not a quick process, often taking up to an hour before the infusion was completed. While this was tiresome and frustrating, Joe and I discovered the actual problem.

Caeleb’s fear was less of needles than it was of losing control. My then-8-year-old son had lost control of his body. With constant bleeds happening in his knee and ankle, his body was not cooperating with the lifestyle of a little boy in third grade. Caeleb wanted nothing more than to go to school without using a wheelchair or walker so he could run and play with his friends.

Caeleb is afraid that his arm pain will not improve. What will that mean as he hopes to have an art career? He finds clever ways to hold his trumpet in jazz band rehearsals so he can keep participating. I’m proud of him for his ingenuity. However, his fear is realized when he must stop drawing because the pain is too intense. He flashes back to the days of waiting to give a thumbs-up.

While controlling a bleeding disorder is not always possible, I’ll do whatever I can to help my son find ways to do the things he loves. I hope our Sunday conversations allow us to continue revisiting the past. It’s a good reminder of how far he has come.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.