Sloan

On April 9th, 2019, Sloan LouElla was born! After 9 years of marriage + fur-baby-parenting, we were adulting to our max capacity (joking, haha, does anybody actually do that?)...and we were excited for our little human-baby. We had prepared, prepared, and prepared. We started a ‘baby box’ in 2016 - just collecting little things for our future human while we were out traveling, shopping, etc - and we were ready for what we thought was going to be a very typical birth/baby experience. After an extremely intense, traumatic, beautiful, life-altering year - we’ve learned that while preparation is wonderful, some of the most amazing, life-altering experiences come from the moments you least expect.

share your storyMacy GilsonSeptember 30, 2019CHARGE Syndrome, disability advocate, share your story, special needs parenting, special needs, cleft lip, cleft lip and palate, NICU, NICU baby, NICU fighter, medically complex, tracheostomy, deafblindComment

Liam

The woman said to me, “Just a few more shots of his face and then you are all set!” I didn’t think anything of it. I thought he was just being stubborn, as always, during our ultrasounds. She finally got the pictures she needed and took us back into our patient room. Normally my midwife would be in the room within a couple of minutes, but it was taking longer than normal. She knocked, walked in and had this uneasy look on her face...I knew something was wrong.

share your storyMacy GilsonJuly 22, 2019cleft lip and palate, cleft lip, cleft palate, craniofacial, cleft surgery, craniofacial surgery, craniofacial awarness, cleft awareness, the story behind two smilesComment

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