Schedules, Worry, and Pain: Listening May Be the Answer

Spiral notebooks, pencils, glue sticks, and highlighters make my heart happy. These items signal the beginning of the school year.

I have fond memories of buying new pencil boxes and the perfect backpacks for my sons. I always look forward to taking them shopping for school supplies. Now that my youngest son, Caeleb, is a sophomore in high school, the most important item on his list is the perfect laptop bag, without Thomas the Tank Engine emblazoned on the cover.

While he is growing up and advocating for himself, I continue to carry a healthy concern for my son.

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Caeleb is preparing to embark on a hectic school schedule. Four days a week, he will participate in marching band after school. The program is strict because marching band counts toward a physical education credit. Therefore, it is imperative that he fully participates.

Stamina is a concern for Caeleb. His right knee and ankle have sustained a great deal of joint damage from years of repeated bleeding episodes. Some would say he needs to “toughen up,” but it’s not that he is lazy and needs to work through his pain and exhaustion. In fact, working through pain can do more damage than good.

I need to help Caeleb find ways to adapt in various situations instead of simply stopping or giving up.

Thankfully, marching band practiced for a couple of weeks during the summer. After a tough practice, I sat with Caeleb to find out what made things more difficult. After describing some of the physical exercises he was doing, I immediately understood his struggle. We thought about which parts of the exercises caused pain and developed alternative movements.

Fortunately, some solutions enable my son to participate without being singled out. His band family is understanding and compassionate, as he is not the only one who needs to make adaptations.

More than anything, I realize that I am the one who needs to slow down and listen. Now that Caeleb’s hemophilia is under control, the worrying part of my brain is out of practice. Yes, that is a beautiful thing, but I must take time to listen intentionally.

I am a mom who can manage a bleeding disorder crisis well. I am calm and coolheaded in the heat of an active bleed, hospitalization, or pain episode. Yet, in a time of blissful peace with hemophilia, it’s the little things I sometimes forget.

To be a better parent and advocate, I pledge to be a better listener. If I can listen with open ears and an open heart, perhaps I can help my son have a successful year. Finding the root of a problem regarding Caeleb’s mobility and pain is different than helping him recover from an active, painful bleed.

Today, I give great thanks that the issues Caeleb deals with are not as painful and devastating as they were years ago. I now have time to be the parent who sends their child to school without constantly worrying that he will not make it through the day. Now, I’m focused on helping him find ways to keep his pain under control so he can participate fully.

There was a time I thought Caeleb would never be able to participate in an activity like marching band. I am grateful I was wrong.

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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 Services, and are intended to spark discussion about issues pertaining to hemophilia.