Musings of a Marfan Mom



I want my children to experience everything good in the world. I want them to share the aspects of childhood that their father and I look back on fondly. While I know their respective diagnoses will limit their ability to participate in certain activities, I do not want them to feel limited.

As a child, I loved fireworks. As a teen, I loved fireworks. As an adult, I love fireworks. I love getting there early to stake out the perfect spot. I love laying out blankets and unpacking a picnic dinner. I love playing games and walking around and listening to music and waiting for dark. I love the booms and the flashes of lights. It’s an American tradition!

However, I realize that all the things I love about fireworks can be all the things that make it an impossible situation for the Menininho. I’d planned to skip them again this year, but thought I’d ask his occupational therapist about it just in case.

“So, fireworks are probably totally out for M, huh?” I asked. “I mean, he loves lights but the noise would probably be too much?”

She thought a moment. “Well, if you did a lot of heavy work with him ahead of time, and maybe watched them from an off-site location, somewhere you could leave quickly, I think he could do ok.”

And just like that, we were planning for fireworks.

One of the dads at M’s school recommended a street from which we could watch a fireworks show in the city. I envisioned a grassy knoll and came equipped with a blanket to stake our claim with and toys to pass the time. We arrived there at about quarter to 9…in the parking lot of a mall. No grass, no park. Whoops!

M was getting restless, so Mark took him for a walk and we ended up at a frozen yogurt restaurant. Treats in hand, we made our way to a back parking lot, shared by two other families. As luck would have it, there was a lone shopping cart for M to sit in, which meant we didn’t have to worry about him running away. The entire show lasted only about 8 minutes and wasn’t anything spectacular, except that it was spectacular because M made it through the entire thing and enjoyed it. Mark called it “a pint-sized show for our pint-sized family.” It was perfect.

While there are a few activities that will always be off-limits to the boys, I will never stop doing everything I can to make adaptations to give them those experiences.

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  1. Thanks for sharing your family’s fireworks with me. It warms my heart.


  2. How wonderful! I’m so glad you guys had a good experiance. I think next year we are going to take Aurora to see fireworks. She’s not a fan of loud noises or bright lights but next year I think she’ll be ready!

    Happy 4th!!!


  3. Thank you for sharing your fireworks experience. It takes a wonderful mom to give them the magical childhood her children deserve <3


  4. I love this! You taking your kids to the fireworks inspired me to take mine! This is something I’ve been thinking about a lot lately as I grow in my understanding of my son. He may not experience things the same way and give the same input as other kids do, but he is still EXPERIENCING things… and that is kinda the point! I’m working on letting go of expectations and giving them all the opportunity to enjoy things.


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