The unexpected purpose and perspective of EB motherhood

Like many of you, I recently celebrated Mother’s Day with my two munchkins. We had a nice, relaxing day, and I even managed to fit in a little yoga and R & R. It also gave me time to reflect.

Mother’s Day has become more expansive over the years. There’s growing awareness around grieving mothers, women longing to become mothers, and the many complicated emotions tied to the day. But one group I still think is often overlooked is mothers of children with rare diseases.

I didn’t have children until later in life. I was 38 when I had my daughter, Demah. By that point, I didn’t know if motherhood was even in the cards for me. So when I found out I was pregnant, I was thrilled — and honestly a little awestruck. She felt like an unexpected gift from the very beginning.

But motherhood hasn’t looked the way I thought it would.

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When you get ready to welcome a new baby, there are baby showers, conversations around breastfeeding, sleep schedules, and nursery themes. No one prepares you for the possibility that your child may not be traditionally “healthy.” No one prepares you for the words “rare disease” attached to your newborn baby.

The first time many families hear about epidermolysis bullosa (EB) is in the hospital after their child is born. Suddenly, they’re trying to absorb complex medical information while also adjusting to life with a newborn — something already overwhelming on its own.

I didn’t just become a mother the day my daughter was born. I became a caregiver, advocate, researcher, and reluctant medical student overnight.

Instead of nestling into the cozy newborn phase, I found myself researching EB late into the night, reading about clinical trials, and reaching out to specialists. Instead of dressing my daughter in cute ruffled outfits, I donated most of what I’d bought and replaced it with soft bamboo onesies. I spent nights sewing fabric over seams to protect my daughter’s skin.

Everything had to be viewed through the lens of EB.

Spit-up wasn’t just spit-up; it was reflux and something to monitor carefully. A small friction point could become a wound. Every product, every fabric, and every routine had to be reconsidered. And yes, postpartum anxiety was real. But when your child has a rare disease, hypervigilance also becomes part of the job description.

The adjustment for me was bumpy at best.

Clarifying what matters

I have two beautiful children with EB. But I will never know what it’s like to raise a traditionally “healthy” child. Even now, when I see babies with bare legs exposed or toddlers running around in just a diaper, a part of me instinctively panics. Don’t they know how delicate that child’s skin is?

But of course, their child’s skin isn’t delicate in the way my children’s skin is.

I will never know what that is like. But what I do know is something raw, real, and profoundly life-changing. I know what it’s like to love my children fiercely while also confronting the possibility of losing them. I know what it’s like to travel across the world searching for answers, and to keep believing in hope even when the evidence is limited.

EB stripped away so many things I once thought mattered and clarified what actually does: not the ruffles on an outfit, but the happiness of the child wearing it. Their laughter, stories, humor, grit, creativity, and joy.

Demah is feisty, strong-willed, and endlessly creative. I love watching her mind work and seeing the worlds she creates through art. My son, William, loves cars more than any child I’ve ever met. He is the silliest, most cuddly little guy. He is the calm to Demah’s storm, and together the two of them are unstoppable.

I never wanted my children to have EB. But the EB community has also become one of the most meaningful parts of my life. It gave me purpose, perspective, and relationships I never could’ve imagined.

I want there to be a cure. I wish my children didn’t have to experience pain. But EB is something they have — it is not who they are, and it does not define them. If given the choice, I would choose them again and again, exactly as they are.

Some people may look at circumstances like ours and feel pity. But please don’t pity us. Our life is beautiful. It’s joyful, meaningful, challenging, chaotic, exhausting, and full of love. It just doesn’t look the way I thought it would.

Motherhood changed me completely — not in the way I expected, but perhaps in the way I needed most. I am grateful for it all.

Note: Epidermolysis Bullosa 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.