Making Lasting Memories While in Isolation

Making Lasting Memories While in Isolation
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As an introvert, coronavirus isolation is not problematic for me. I have plenty of projects to keep me busy. My graduate schoolwork is online, and the normalcy of school has been nice during these uncertain times.

I hear about people who have a hard time in isolation, and honestly, I don’t empathize. There is always a closet that needs to be cleaned, clothes to be washed, and yes, quilts to be made. But for people who feed off the energy of others — like my son Caeleb — this is not an easy time.

My son is a gamer, and as much as I hate that he spends more time than he should playing games, it says quite a bit that not even games make his isolation time fulfilling. Fortunately, his school begins online classes this week, so I hope his boredom quickly becomes a thing of the past.

I knew we needed to get out of the house while staying safe, so I tried to make exercise part of our daily routine. But something happened.

It was a beautiful day, so I stopped what I was doing and asked Caeleb to join me on a bike ride through the neighborhood. The 80-degree weather was perfect, with blue skies and a slight breeze. We were solving the world’s problems while biking down the road, when suddenly he had to stop.

“I’m sorry, Mom. My ankle is really hurting,” he said.

We were so caught up in the beauty of the day and our great conversation that we didn’t pay attention to how far we had ridden. It wasn’t far according to most people’s abilities, but it was for Caeleb’s.

I had been so excited that my son and I were being active and sharing a wonderful moment together outdoors that I forgot about his limitations. He did, too, but I still felt terrible.

Caeleb apologized, but I told him it wasn’t necessary. I needed to apologize for not keeping an eye on how far we had ridden. We managed to slowly make our way back home, taking several breaks and walking our bikes. Caeleb leaned on his bike for support much of the way.

The experience was disappointing. I wasn’t upset that we couldn’t enjoy the entire ride, but rather that the pain from Caeleb’s joint damage always appears when we least expect it. But I won’t let this setback prevent me from finding ways to engage with my son.

Now, we play more games as a family, including our favorite, dominoes. We also are making our way through the Marvel movies.

As for bike rides, we keep them pretty short. I cherish those rides, not for the distance we travel, but rather for our conversations. Those are the golden moments for me.

Whatever your isolation situation looks like, be sure to make connections with the people you love. It’s not about what you do, but rather whom you are with.

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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.

Cazandra Campos-MacDonald is an author, motivational speaker, and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (13) in Farwell, Texas. Her book, “Dear Hemophilia” will be coming out in November 2019. You may follow her blogs and view her TEDxABQ talk at www.cazandracmacdonald.com.
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Cazandra Campos-MacDonald is an author, motivational speaker, and patient advocate for families with bleeding disorders. She blogs about the journey of her two sons with severe hemophilia and inhibitors and has written articles and blog posts for numerous publications. Cazandra’s older brother, Ronaldo Julian Campos, died of complications from hemophilia as an infant. She lives with her family, Rev. Joe MacDonald, Julian (22) and Caeleb (13) in Farwell, Texas. Her book, “Dear Hemophilia” will be coming out in November 2019. You may follow her blogs and view her TEDxABQ talk at www.cazandracmacdonald.com.

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2 comments

  1. Dagmar says:

    For all of us who live with a rare disease, this challenging period of time pushes us to discover deeper relationships with family and friends. I love your sentence:

    “Whatever your isolation situation looks like, be sure to make connections with the people you love. It’s not about what you do, but rather whom you are with.”

    So true! Thank you for sharing your story. And best wishes to you and your family.

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