@mackenzies_eb_journey: Adaptability. It’s one of the biggest learning curves as a parent of a child with EB, and also the biggest blessing. Initially when we found out about Mackenzie’s EB, we learned about how her body would be covered in wounds. We learned she’d need dressings covering nearly her whole body. We quickly found out that she needed those dressings to stay on always- without them blisters and skin tears inevitably tore apart her skin. I remember the grief of thinking that she’d never be able to have “normal” childhood experiences, that she wouldn’t be able to play with her sisters in the backyard, explore the water, go swimming. But with the months of parenting this beautiful girl who has EB comes months of learned adaptability. I’m constantly shifting what our “normal” looks like. And this weekend we adapted what outside play got to look like for Mackenzie. Yes this is more challenging with her EB. We had to do a dressing change twice yesterday to allow her to play in the water. But her joy was so worth it, and we learned that just because it’s different doesn’t mean it’s impossible. #parenting #medicallycomplex #raredisease #poolday #mindsetshift

Jill Hansen :

What about like the cast covers. But with the gasket on each end so her hands are exposed. They have to make them.

Monarch :

She’s so happy😭❤️

af63he6289ashg0037 :

Smiling seeing ur daughter smiling ❤️👏 she has the best mommy in the world

. :

She's soooo precious 😭❤️I love herr smmm❤️❤️❤️❤️❤️

💛Renie 🦋🐚Marie🩵 :

She’s so beautiful & her smile is priceless 🥰🙏

. :

hope she is okay

kellyroyer61 :

She does look so happy, it’s great to see , there is life with eb 😍🥰😍sending love and hugs

Drex :

God will heal Mackenzie 🙏

kimmy73 :

❤️❤️let her have a blast like you are

ga. ypt💀(RETIRADO) 😔😔 :

Your okey and baby?

ioanna.b_ :

Πόσο όμορφη ❣️

Orcas at Peace 🌊(Courtney) :

I love this. I love how you allow her to be the beautiful child she is and to let her experience life.

mommaofsix :

Such a strong brave girl 💜

Alisherrka//ªhuennii tip :

I'm so glad that everything is fine and that she lives happily.

✨فاطمة زهراء✨ :

She’s a so strong and beautiful girl hope she doing good❤️🥹

Scarves Vendor.SierraLeone🇸🇱 :

She’s brave 🥹❤️

Kami :

💝💐🎈🧸💝🥰

:زهـ𐙚ـࢪاء ⋆𔓘˚⋆🇮🇶♍ :

Nero :

Gina :

She is getting so big 🥰

laur.galp :

You are incredible parents. That is all ❤️

🌺ЛУЧИК СВЕТА🌺 :

...

Maryline 🫶 :

Super elle a eu la chance de pouvoir toucher l’eau et de s’amuser avec ses sœurs elle est si mignonne 🥰 💓💓💓

Paige :

Aww miss ma’am is getting so big! I hope you and your family have a wonderful summer! 💕

Laura Rae :

OMG her joy! I miss her so much, and you guys too!