@mackenzies_eb_journey: It’s October again. It’s amazing how sometimes your body remembers before you do. The tension in my shoulders, quickening of my heartbeat. The fidgeting with my fingers, unable to keep my hands still. And then it hits me like a wave in the car line at school. A memory of her first scream, of the stark quiet of an empty delivery room. I close my eyes and I can see the hallway in the hospital as my nurse wheels me to the NICU, my resolve to stay okay and not feel the extent of own wounds. That’s when I realize- it’s October again. I thought this year might be different. It’s been two years, the EB isn’t new. This challenging life has become our normal. I’m not shocked by blood, blisters, deep wounds, pinning her down while I do wound care. This truly is our normal now. I didn’t think I’d be as affected this year. But it’s October again, and my body remembers the fear, pain, heartbreak of those first few weeks of her life more than I thought it would. And I’m finding that 2 years isn’t long enough for the wounds of that time to escape my subconscious. The memories come back to me in tiny moments, like a flickering old film. The words from the terrified nurses and doctor when she was born. The look on the neonatologist’s face when she came to explain her suspicion of Epidermolysis Bullosa. The heartbreak of saying goodbye to my baby and husband as they left me to go to the children’s hospital. The collapse into the arms of my mom as she came to take care of her baby. The tiny moments I remember in the whirlwind of the NICU- the walk to the bathroom down the hall with my postpartum supplies in hand, the determination to stay standing bedside to my infant during wound care even when I felt like passing out, the uncomfortable rocking chair in the corner where I exposed myself to pump while endless doctors and specialists came in to talk about this nightmare we were living. The perfect, sweet coos from my tiny baby girl, already finding peace in my arms despite unbelievable pain. The moment I decided I was determined to take her home, recognizing that I could care for her better than the constant shift of new nurses who had never heard of EB. The love I felt for her bursting out of my chest when I learned to wrap her wounds and lance her blisters. My body remembers it before I do. And now I know, this October I’ll be finding time to give myself grace and honoring the fight we went through. And in 2 years I’ve learned that sometimes I just need to allow myself to grieve, feel, and remember. And then we keep moving forward. #grief #nicubaby #medical #MomsofTikTok #fyp

Mackenzie’s EB Journey 🦋

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Saturday 03 October 2026 15:09:13 GMT