Living with sickle cell has taught us how to make really good lemonade

I tell my children that we are a family that makes really good lemonade. Meaning, when life gives us something difficult or sour, we have an uncanny ability to turn it into something positive or sweet. I believe that is mostly due to the skills we have acquired while battling sickle cell disease.

Years ago, when my children Tyson and Jordyn were around 3 and 4 years old, there was a snowstorm here in metro Atlanta. The kids wanted to go outside and play in the snow so badly, but we knew they couldn’t because it could potentially trigger a pain crisis. But my husband was determined that our kids would still have fun.

He surprised us when he walked in the door after work, throwing soft, white, fuzzy “snowballs” at us. The kids and I ran through the house, and we had our very first snowball fight — sans actual snow, of course.

I’m not sure we would have been so creative and fun if the kids didn’t have sickle cell.

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Another time, we were planning a big beach trip with extended family, but about two weeks before we were scheduled to leave, Tyson had one of his worst pain crises ever. He ended up in the hospital for several days, and we had to pass on the trip because he hadn’t fully recovered.​

So what did my husband and I do? We brought the beach to us! We moved all the living room furniture out of the way and turned our front room into the beach. We had beach towels and toys, and even let the kids build sandcastles with kinetic sand. We pulled up a YouTube video of the beach on TV and watched the waves. We had a great time playing games and relaxing together.

A different kind of lemonade

Before I share this last experience, I want to preface it by saying that while it might not be “fun” lemonade, it’s an example of how our disabilities don’t have to keep us from accomplishing things.

In 2022, two years into the pandemic, my husband and I were considering putting our children back into in-person school. But then Jordyn experienced two severe acute chest infections, and the doctors told us she would not be able to attend in-person school due to her compromised immune system.

So we followed the doctors’ orders and continued with virtual school. But we ran into a problem during the 2023-2024 school year. Jordyn was in third grade, and here in Georgia, that meant she had to take a state milestone test in person.

I requested a 504 meeting to inform the school of accommodations I felt comfortable with. I decided it would be best to have Jordyn take the test in a room without any other children. She had one teacher supervise her, and I requested that they wear a mask. I was also allowed to sanitize her space and bring in an air purifier for the room. The school was very accommodating, and when it was time for Jordyn to take her milestone test, we had no issues and her health was not compromised.

I believe anyone can benefit from the ability to pivot, adapt, and keep moving, though not everyone has developed the skills to do so. Life can get rough, and living in an ableist society makes it even harder, but I am happy that my children are learning from a young age that life throwing you a curveball doesn’t have to stop you from hitting a home run.

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.