Last week we walked out of Children’s Hospital for what appears to be the last time. I hadn’t realized the burden on my shoulders, until it was lifted off. A burden lifted by a few simple words, “Your child looks great. I have no further concerns.” Words that are so often taken for granted. Words that so many parents in that hospital are desperate to hear. Words that God was pleased to give unto us last week.
But it wasn’t these words alone that lifted my burden. It never is that simple, is it?
Our Pearl was born six weeks early, a stress-filled ending to a stress-filled pregnancy. We spent two weeks in the NICU, and then we went home, with oxygen tanks and cannulas and the promise of twice-weekly visits to the pediatrician. We’d been home about a week when I was holding Pearl and she did some funny twitching. I eyed her curiously, watching her arms and legs contracting rhythmically. After a minute or so she stopped, and I chalked it up to an immature newborn nervous system.
A week later she did it again. And I watched it again, kind of like how you’d watch water pour out of an electrical outlet–with a vague sense of uneasiness and curiosity at how such a thing could be taking place and wondering what it meant. I remember thinking, “I’ve had three babies, and I thought I’d seen the gamut of funny baby-twitching. I guess there’s always something new.”
During our next visit with the pediatrician, he was checking her oxygen levels, looking her over, everything looked great. He was writing up his notes and getting ready to dismiss us for two whole weeks (glory be!) when I remembered the twitching. I mentioned it in this casual “oh, by the way” sort of fashion. He stopped writing and asked for more information. I answered his questions and noticed his expression had taken on that look that I’d become so familiar with–the one that doctors get when their mind is spinning with horrible possibilities but they don’t want you to know about it.
“Those are seizures. I’m going to recommend that you take Pearl to Children’s Hospital immediately. I’ll call ahead to let them know you’re coming.” And we spent the next three days in a little cubicle of the NICU at Children’s Hospital. Mostly, we sat and waited. Every few hours someone else in a lab coat would turn up to draw some kind of fluid or poke some kind of needle or hook Pearl up to some kind of machine. Every fluid that was in her body was cultured, every detail of her brain was mapped (no small feat on a baby who by that point was still 2 weeks pre-term), and after three days we left with more questions than answers.
And for the next two years we would trek to Children’s Hospital to visit with Pearl’s neurologist and go over genetic test results and blood labs–all of which inevitably returned as “not quite normal, but not abnormal enough to be what we were testing for.” He was cautious in giving us information, and I only had the vaguest sense about what disorders he was fearful of. And for those two years I watched, and worried, and wondered. As difficult as it would be to have Pearl diagnosed with a genetic disorder, it felt twice as hard to be left not knowing. To always feel like I was waiting for the rest of the information to come in. Waiting for the next bit of news, the newest development.
“She looks great! I don’t know what those doctors are worried about!” was what friends and family often said, and I tried to enter into their confidence. But I was never encouraged for long. Because I could see the tiny minutiae of her development, and wonder….
And so, last week, as we sat in the waiting area I found myself feeling nervous. Afraid that Dr. B. would tell us that this was not the end, that we needed to continue coming, that Pearl was not doing as well as he had hoped. And then I realized I was afraid he’d say the opposite. That Pearl was fine. That we could leave and never come back. How was I supposed to just suddenly shut off all of the vigilance of the past two years? How could I just drop the concern and worry that had been the mantle on my shoulders for two years and walk out like none of it mattered? Like everything had changed?
I was fearful, and I prayed for some bit of reassurance. And He answered me. The conversation went something like this:
Me: God, I’m feeling afraid. Please send me some comfort?
Him: Consider the story of Naaman.
Me (puzzled): Um, okay. What am I supposed to be considering about that?
Him: I show you what you need to know, when you need to know it. Trust me. And trust what I tell you through this doctor.
And that was all I heard. So, I obediently considered the story of Naaman, reviewing the facts of the story as well as I could remember. Naaman, who went to Elisha seeking healing. Elisha told him to do something very simple, “Bathe in the Jordan River and you’ll be healed.” Naaman thought this advice quite simplistic and ordinary, and he turns away in a huff. His servant says to him, “Look, if the prophet had asked you to do something really great and difficult and showy, you would have done it. But he told you to do something simple, and you refuse to do it?”
And then it all became clear.
I don’t have the greatest repertoire with doctors. In fact, I don’t trust them very much at all. I have a lot of old wounds surrounding this, and I can assure you that this mistrust has deep roots in my soul. I was prepared to be asked to do more hard things, to stick more needles and tubes into my little girl, to do more tests and studies. And I would have submitted to these things if her doctor had felt them necessary.
The words that would be harder to hear, the words I needed to prepare for, were the easy ones. What if he told me that everything was fine? How could I trust that?
I remember: He shows me what I need to know, when I need to know it. If this doctor says that everything is fine, then I can rest in that.
And if things turn out to be not fine? If seizures surface again? If she never strings two articulate words together in communication? It doesn’t negate the assurance of this moment, of these days. Maybe that’s what waits for me down the road. Maybe not. But the fear has lost its weight. And for now, I am resting in the lightness of my load. I am trusting in the firmness of His arms. And I’m learning that they do indeed hold.