Love Over Fear: Caring for My Child in the Middle of the Night

We’ve had some rough nights with Chiara, walking the hallway as we take turns to try and soothe her little body.

Running baths at midnight to help her feel comfort when she can’t find calm.

I mix medicine’s under soft lights and watch the clock tick over from 12 a.m. 2 a.m. 3 a.m. and more.

I carry her body as she drapes over my arms, so delicate, fragile and full of mystery.

I reposition her limbs and try to help her find that space of comfort where she can rest and heal, beyond the labels of her medical conditions.

So thankful my husband is with me through these twilight testing hours.

Through this haze of broken sleep, exhaustion and ongoing physical care, we keep choosing to love over fear.

These tiny micro-milestones of choice in the long run turn out to create some of the biggest shifts of our life, one small midnight moment at a time.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Polymicrogyria

Hudson in his pilot costume.

How My Son's Classmates Without Disabilities Also Benefit From Inclusion

“He’s not going to need to be in a special needs preschool.” That’s what I was thinking about five years ago when someone told me when my son Hudson turns 3, he’ll transition into a special needs preschool. I remember it vividly. It was early on in our journey with his disabilities — he has [...]

What the Unknowns of Our Special Needs Journey Teach Us About Love

Yesterday, we went shopping for organic food to make Chiara’s meals. We jam pack as many nutrients into each of her meals to help feed her brain and body. And when I look into her crystal clear eyes, I know it’s all worth it. On our drive in, I asked my husband, Mauro, what he [...]

To the People Who Tell Me I Caused My Daughter's Disability

One of the toughest and funniest and scariest parts of writing is the feedback. When I started this journey, I was documenting everything for people who wanted to keep up with my daughter, Adelaide’s, special needs. Mostly friends and family. It branched out from there, but I was still getting free therapy from sharing her [...]

He's 23, Blind, Nonverbal. And He Started His Own Successful Business.

Patrick Lewis has an affinity for specialty foods and beverages. The 23-year-old also has cerebral palsy, is unable to verbally communicate and is completely blind, but that hasn’t stopped him from doing something that would be extraordinary for any 23-year-old — he has his own business doing something he loves. Lewis, who lives in Stowe, Vermont, [...]