How my cousin showed resilience in facing her physical limitations

Playing sports can cause complications for those with sickle cell disease

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by Sylvia Amuta |

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As my little cousin Ada voiced her desire to take part in her school’s sports competition games, a surge of concern washed over me. Her recent recovery from malaria had left her in a delicate state, and the thought of her training rigorously during this time troubled me.

I’ve witnessed Ada’s struggles with sickle cell disease, a condition that often subjects her to bouts of pain and fatigue. As her caregiver, I understand the importance of supporting and encouraging her to pursue her passions. However, I was uneasy about the physical demands such activities could place on her body.

Despite my concerns, I recognized Ada’s unwavering determination and her burning desire to participate in her school sports games. Since she spent her childhood watching from the sidelines as her friends enjoyed sports and other activities, I knew the ache she felt at being left out.

When she approached me about her desire to participate in a relay race and assured me she’d be careful, I hesitated to dismiss her outright. I felt torn, not wanting to hurt her feelings, so I promised to consider it. I wasn’t ready to face another crisis merely to please her, yet I comprehended the significance of this opportunity for her self-confidence and social life. I recalled the joy I felt as a child from participating in school games. This race would undoubtedly be a chance for Ada to showcase her abilities, feel a sense of belonging, and build her self-assurance.

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The challenges of being a caregiver to my cousin with sickle cell

Thus, I chose to have a heartfelt conversation with her about the potential risks she faces with sickle cell and the importance of taking extra precautions. I also engaged in a discussion with Ada’s school sports coordinator, elucidating her condition and the precautions she needed to take. The school was understanding.

Observing Ada’s training in the following days led to numerous shifts in my emotions. On one hand, I was anxious about her well-being and the potential hurdles she might encounter. On the other hand, I admired her resilience and determination.

Working around physical limitations

After I allowed her to begin practicing, unfortunately, she returned home one day with joint pain throughout her body. She had pushed herself too hard during practice, disregarding the pain she’d felt.

I was furious with her, having emphasized the significance of proper hydration and sufficient rest to sustain her energy levels and overall well-being. She explained that she’d felt the pain, but chose to remain silent to avoid being removed from the relay team.

I was disappointed, both in her for not following my advice and in myself for allowing her to participate when, deep down, I knew the probable consequences.

The following day, Ada couldn’t attend school because she was ill. In my anger, I firmly declared that I’d no longer entertain the idea of her participating in any rigorous sports. I didn’t want to bear the responsibility for any harm that might befall her health. She cried that day, but I remained resolute, convinced I was acting in her best interest.

After my temper cooled off, however, a pang of remorse tugged at my heart. I made a phone call to the sports teacher, explaining the predicament and inquiring if there were any other activities she could participate in that would be less strenuous. He suggested she join the “march-past parade,” as it was called, and even offered her the role of princess. The idea struck a chord with me since Ada cherishes everything associated with princesses, from the gowns to the tiaras.

As soon as I hung up, I broke the news to Ada, and her eyes sparkled with delight at the idea. Like magic, she asked if she could wear a tiara, and when I replied affirmatively, she leaped for joy.

On the day of the sports games, Ada participated in the march-past parade and radiated grace, adorned in a princess gown she’d initially purchased for a friend’s birthday party — one that she couldn’t attend because of a crisis. The support she received from her friends, teachers, and family bolstered her confidence and motivated her to give her best, despite the physical limitations imposed by her condition and recent recovery.

It turned out to be a day filled with joy. Although she couldn’t run, she cheered on her friends as they did and twirled around in her princess dress, urging me to capture countless photographs.

Ultimately, Ada’s participation in the sports games transcended mere physical activity. It stood as a testament to her resilience and the power of determination.


Note: Sickle Cell Disease News 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 other 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 Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.

Comments

Jay avatar

Jay

This column beautifully captures the conflicting emotions and tough decisions faced by a caregiver of a child with a health condition. It showcases the importance of balancing concerns for a child's well-being with their desire to participate in activities that bring them joy and a sense of belonging.

Sylvia's initial hesitation and subsequent attempt to find a compromise that prioritizes Ada's health is commendable. The disappointment and anger expressed upon Ada's decision to push herself too hard reflect the genuine concern and responsibility felt by the caregiver.

However, the column takes a heartwarming turn when the caregiver realizes their mistake and finds an alternative way for Ada to participate. It serves as a reminder of the transformative power of encouragement and finding creative solutions to overcome challenges

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