More Thoughts From Hospital Beds

The room is quiet and dark. Sage just finished one of her classic crying fits and is finally sleeping calmly on my arm.

Light from the nurses station shines through the large glass sliding door despite the flimsy curtain that has been drawn shut. I sneeze into my elbow trying not to wake Sage up. My head feels twice as big as normal. It hurts to swallow. I just want to be home in my own bed.

Why did I rush Sage down here again? Frustrated with myself, I run through the events that led here. The five days of vomiting and not tolerating her Gtube feeds, the congestion and rattly cough, the seven days without pooping while on a laxative. They ran a bunch of tests in the ER which all came back normal. But they don't want us to leave until she starts tolerating her feeds again. It sounds like we might be here awhile.

As I sat in the ER earlier I found within myself a shocking desire: I wanted something to be wrong. With each test that came back normal I felt discouraged instead of relieved. Something is wrong with my baby - she spends most of the night crying, she is nearly always constipated, she struggled to gain weight and now that she's on the Gtube she struggles to tolerate her feeds. There's got to be something wrong.

So I wanted them to find something. I wanted it to be a bowl obstruction that they could fix and suddenly make everything better.

I actually sat in the ER hoping that something was wrong, so that it wouldn't be a worthless trip, so that they could just fix her, because I feel like she's broken.

How messed up is that?!? I mean I'd rather have it be something serious, something that they can give her medication or a surgery for, than something non-serious that will resolve itself in time.

I want a quick fix and an easier life. I want to suddenly have a child who sleeps perfectly at night and gains weight normally and doesn't throw up a couple times a week. But life isn't perfect.

And when it comes down to it there is something irreversibly "not right" with Sage and there is no quick fix. She might never sleep well, just like she might never talk or walk. She might regularly end up in and out of the hospital for feeding problems. She might never out grow this or out grow needing this much attention. She is not ever going to be that normal perfect child.

I look down at her, so peaceful and calm, and large tears roll out of my eyes. A sob catches in my throat and she stirs. Arching her back, as if to try and crawl out of her own skin, she cries. I try to calm her, but she pushes away from me in pain. I pick her up and stand beside the bed, tangled in the IV tube, I rock her slowly in my arms. She arches her back again and pushes away. I set her on the bed and she wiggles and thrashes as she cries, and then, just as suddenly as it started, she rolls on her side in perfect calm and sleeps again.

This, crying in hospital beds, sleepless nights, feels like its my life now.

With my son, Thaddeus, I was not this mom. I was not the mom that rushed to the emergency room. I trusted my intuition, I trusted my son's body and his ability to heal and grow out of things. Even in the midst of two long years when he didn't sleep at all, I trusted that it wouldn't last forever. Even in the midst of bad fevers and illness, I trusted that he was capable of healing and that I was capable of helping him to heal. But with Sage I have lost that trust - that confidence. I don't know what her body is capable of doing and isn't capable of doing. I don't know if she will ever out grow the sleepless nights - she might not.

The understanding of what my daughter's diagnosis will mean has come upon me slowly. It has sunk in one step at a time, comprehension dawning on me more and more at different points in our journey. Today it all sunk in a little deeper. And it's hard. It hurts.

Sometimes I feel like it's not that big of a deal that Sage has special needs. For the most part I feel like I've handled her diagnosis in stride, but there are moments when it all catches up to me. Moments when the only identity I feel any ownership for is that of "caregiver". Moments when the reality of her situation, and mine, as her mom, really hits home. Today was one of those moments.

Sage isn't fixable. There is no quick easy fix for her diagnosis. Her issues with sleep and eating, her developmental delays, could very well be life long. I can't magically make her perfect. But she doesn't need to be. She is broken, but God is perfect. And that's the truth for all of us, isn't it?

Rejoicing in the journey, Bethany