She knows no different

The other day, I brushed my hand against a corner, and it scraped a tiny chunk of skin off. And it HURT.

And I wondered if that's what Brenna's skin feels like every day or every time she has a tear or a scratch. It made me so sad to think about how often she hurts and how much discomfort her skin causes her.

But she knows no different. She doesn't know how much better her skin could feel; she doesn't know how uncomfortable her skin truly is. She doesn't know what it feels like to not have thick lotion on all day every day.

Connor knows no different. It's not unusual to him that Brenna takes a 45-minute bath and cries the majority of the time. It's not strange to him that when he kisses Brenna's cheek, he is left with "sticky" on his face from her Aquaphor. It's not weird that we wear medical gloves when we change her diaper.

But me? I know different. I know life before Harlequin Ichthyosis; I know life without Harlequin Ichthyosis.

I know that skin isn't supposed to hurt like hers does. I know that bath time is supposed to be fun and painless. I know that kids are supposed to be able to sweat so that they don't overheat. I know that babies are supposed to be able to open their hands and crawl and stand up without crying because it hurts so much.

Last week, I was feeling really discouraged and upset by how sore Brenna's skin was as she was fighting her skin infections. I feel so helpless when she's in pain like that. And then I was reading my blogger friend Ramee's blog about her daughter Mabel, who has Batten Disease, a terminal brain degenerative disease...Mabel has been declining lately and Ramee's writing has been so raw and heart-wrenching as she watches her daughter struggle every day.

I talked with Ramee over the weekend, and I told her that I cried through her entire post about their family making cement handprints - a rare art project for the whole family and something that meant so much more than just an art project...creating a memory as a family of five.

I understood completely. I took photos of Brenna by the dozens when she was born because I thought that might be all I had of my sweet girl. And ever since she has come home, I have been so deliberate about savoring all of our togetherness, our memories as a family of four. If I'm totally honest, I'm still terrified every time she get sick that she won't get better.

As I told Ramee, sometimes it's really hard to understand why our babies have to suffer and get sick. It's not something I dwell on very much, because there are a lot of things that aren't easily understood in life, and I really do count my blessings every day.

But sometimes, on rare occasion, I have those days when I ask God why Brenna has to hurt, why she has to go through so much.