Our Butterfly is a Beach Bum

July 5, 2016 epidermolysis bullosa, Skin Conditions, Whitney 5 Comments

(Alternately titled: Taking a Child with EB to the Beach)

Our family loves the beach.
The sun, the sand, the salt-water burning in our eyes.
The souvenir shopping, the jellyfish spotting, the ritual of going to eat ice cream on our last night of vacation.
Taking that first glimpse of the ocean at the end of the boardwalk, casting off shoes and digging our toes into the sand, night walks where we collect bits and pieces of sand dollars.

We love it.

When we brought our daughter home from China in February of 2015, we knew that our beach days as we had known them would need to look a little different. EB is, after all, a skin condition, and being at the beach with EB was going to require some different approaches to make it something she could enjoy.
Our first summer home? I chickened out. Totally chickened out. I asked questions and researched ideas, but when it came down to it, I was afraid. I was afraid she would get hurt, or that her skin would fall apart completely. I was afraid of the sand rubbing new blisters. I was afraid she would be terrified of it all. I was afraid that the stares and comments of strangers would completely undo me.

This summer? I took a deep breath and dove right in.
And as it turns out? This butterfly girl is a total beach bum.


It wasn’t like packing up a typical family of six, so I wanted to share a little bit about how we made it work.

Expectation adjustment

Things aren’t the same as they used to be. They aren’t. They haven’t been for quite some time. And yet, when we head off to an experience that we’ve only known in our pre-adoptive state, it’s easy to forget that things will be different. I had to refuse to wear my rose-colored glasses, which tend to speak untruths about how easy things were before we had EB to contend with.

Bottom line: the beach with four young children and EB was challenging. But you know what? The beach with three young children and no EB to contend with was challenging, too.

Wound care supplies

I had a box packed to the brim with “just in case” supplies. Wound care supplies for EB kiddos are not your typical Band-Aids, and so I thought in terms of her worst-case scenario when I was packing. It was way too much, but it brought relief to know we had the things we needed should we need them.
We also brought her own set of super soft sheets and a blanket she loves to help her feel more comfortable at night.

What to wear

Julianne’s legs tend to be a hot spot of activity for her. A typical swimsuit does not provide the type of protection I knew she needed, but since she doesn’t often need to be completely wrapped, I thought a wetsuit might be too constricting for her. I ended up finding something called “swim tights” that worked perfectly for her. They kept the sand off of her legs and prevented chafing and rubbing new raw spots. They also protected her legs from the sun. Bonus: the swim tights protected her from being stared at by everyone who walked by. I will be ordering these again.

Keeping Cool

Heat is a problem for kids with EB. Heat = blistering in our world. So, we planned ahead to rent a cabana so she would have a place to be shaded and cooler. We brought a cooler with ice cold water and her Chilly Pad to lay across the back of her neck should she feel too warm. She already knows her limits pretty well by age five, so she came back to the cabana to sit and relax when she needed to. There may have even been a little bit of dozing off in a chair.


Here’s what we learned about taking our butterfly to the beach….

She loves the water.
She loves the sand.
She was not scared at all.

She loved finding shells.
She loved building her first sand castle.
She was not a fan of the seagulls.

Salt water and pool water work wonders for her skin.
Having EB doesn’t mean missing out on summer fun.


Prospective parents considering EB often have many questions about climate and heat tolerance. And I am here to tell you, as a mom who lives in South Texas, you can do this. Your vacations may look a little different, you may have to plan for contingencies you didn’t have to think about before, but adding that extra bit of crazy to the planning is really what we all say yes to when we walk into the world of medical needs adoption.

For a while, I let my fears about what the beach would look like hold us back from experiencing something our family really enjoys doing together. As it turns out, going to the beach with Julianne cemented her even more firmly into our family dynamic. We love the beach, and she does, too. Just proof that even though it seems a little crazy and maybe not logical, we are meant to be together.

5 responses to “Our Butterfly is a Beach Bum”

  1. Kelly says:

    Loved reading this. Such a testimony to your bravery and hers. Way to go for figuring it out and doing it.

  2. Ally Roscoe says:

    This is perfect. You have made a perfect haven for your girl, one that she can explore from and come back to when she needs a rest. So happy!

  3. Tracy Dise says:

    What a wonderful story! Do you know of Nicholas Zahorcak? He is a young man with EB & his mother has written a book about him. She has a blog on FB. If you don’t already know of her, she may be a good resource for you in your journey through EB.

    • Whitney says:

      Hi! I have not heard of him specifically, but I imagine that I’m in some of the same online groups as his family! The EB community is so supportive of one another. 🙂

  4. Amy says:

    Thank you! I loved the pictures and her happy face. Would you be willing to contact me? We have Sullivan’s file. 🙂

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