@mackenzies_eb_journey — 43x breakout

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Epidermolysis Bullosa means that after she has fun playing in the water...

@mackenzies_eb_journey

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Why it worked

The video likely resonated with viewers due to its raw and emotional portrayal of a rare medical condition, fostering empathy and raising awareness. The creator's vulnerability and focus on the child's resilience likely contributed to its shareability.

Summary

The video creator shares the challenges of caring for a child with Epidermolysis Bullosa (EB), particularly after water play. It highlights the painful process of changing dressings and the emotional toll it takes on the family, while also emphasizing the child's resilience.

Structure

1Introduction to EB and the impact of water play
2The difficult process of dressing changes
3The emotional and physical toll on the family
4The child's resilience despite the condition
5The reality of summer with EB

On-screen text

Epidermolysis Bullosa means that after she has fun playing in the water... Comes a dressing change. This is our second one of the day. We didn't plan for Mackenzie to have any water play today. So we did a dressing change like we normally do in the morning. It was a really hard one. Lots of new blisters, lots of blood. Lots of crying. Lots of us trying to comfort her from the worst pain. I'm so happy to give Mackenzie opportunities to play and have fun. And she loves the water, so she had the best time. But her playing in the water can't just be playing like her sisters. And I'm really not looking forward to putting her through this again. But this is summer with EB. Playing outside in the water, having typical summer fun has a trade off. Her dressings can't stay wet. They have to be changed to clean and dry to protect her. So as much as I hate it, and as exhausted as I am, we do it again. Because you don't get to be too exhausted to care for EB. And as always, she continues to prove that she's the most resilient person I know. Summer nights look different with EB.

Original caption

Summer nights look different with EB. I spent today prepping for my nephew’s 7th birthday party. My sister and I set up decorations and food, spent hours making 7 year old magic come to life. In between hanging balloons and decorating a cake, I did a dressing change for Mackenzie with my husband. We held her down while she screamed, performed care on bleeding new wounds. It was an especially bad change, and Tyler and I had to force ourselves to move on with our day when it ended. And I went back to party prep. During the party Mackenzie kept asking to go in the water. She couldn’t be distracted with other toys or people, she just wanted to play like her sisters. And since her cast is off, we let her. I have zero regrets about this, she had the absolute best time playing. She spent hours filling up and dumping cups of water. She smiled and laughed, and got to experience the magic of summer. No regrets for summer joy. But, as always, life with EB complicates things. And water play means instant dressing change after. So after hours of party prep and party hosting, while others were leaving to go home and kids were ready for bed, we got ready for Mackenzie’s second dressing change of the day. And I hate it for her. I hate that when she enjoys herself fully and lives spontaneously like anyone else, I then have to put her through another hour of pain. I have to expose her wounds to air, meticulously clean her bleeding open wounds, for the second time in a day. This is life with EB. And as much as I hate it for her, I love that she got to experience the joy of summer. Both feelings are true. #epidermolysisbullosa #woundcare #Summer #griefjourney #fyp