medically fragile

The Others

I've written a ton of emails, updates and blog posts about Brynna and how she has touched our lives; about how we've learned some great lessons; about how amazing she is. This one is different.

Tonight we took the little boys to see Wonder, a story of a boy with Treacher Collins Syndrome which causes major craniofacial deformities. As the parent of a child born with a serious and profound facial deformity, I fully expected to identify with this movie and with Auggie, the main character, which I did. I cried the whole movie, literally. Big, ugly crying sometimes. But not for the reasons I expected.

As it started, I cried in the opening scene, I won't spoil it for you, but we've done exactly what happened there. I recovered, and did ok until the story focused in Via, the big sister.

The point of the film that touched me the most was how it addressed the impact Auggie had on his sister. Suffer me a few minutes to indulge.

Tammy and I are very familiar with the impact the stares of others have on parents. Before her lip repair we've had people run up to the baby carrier in Wal-Mart only to recoil in horror. We've fielded awkward comments, condescension, and gawking. We forget that our other kids have endured it too.

It's true that the child with the needs is the sun, and everyone else are the planets. There have been so many times our kids have necessarily been served the leftovers of our time and attention, yet they march on like champs. We can't go to restaurants like others, jump in the car on a whim and do things, and let's not get started about how many nights they've spent with others while we've been in the hospital.

Then there was that time Austin got in a fight at school because a classmate made fun of her. Erika is far and away the best nurse we've ever had (and we've always had GREAT nurses). She's even taken Brynna on dates!

They can give meds, do tube feedings, and know when we need a break. They've never complained, ever. Seriously. They have embraced her differences and grown as a result. They love her, and love others better because of how she loves them.

Parents of special needs kids are often called superheroes. The real superheroes are their siblings. I love you guys, you rock. Here's my shout out to Austin, Erika, Eli, Shaun, and even the littles. I love you guys for loving Brynna the way you do.