You walk back and forth across the room, over and over. Between my arms and Lauren’s, you cross the space between us again and again, as she and Bud watch your feet, your legs, your knees.
“Keep going,” Lauren encourages you. “Back to Mom, okay? Slow feet, Luisa, slow feet.”
You sigh with exasperation and fall forward into my lap upon arrival. “But I’m TIRED!”
I can tell that your patience is starting to wear thin, but the impish gleam in your eye tells me that you’re not too tired just yet. “Come on, walk back to Lauren again – just a few more times, Lulu. You can do it,” I cajole.
“I’ll give you a surprise when we’re all done,” Bud’s jolly voice booms out, matching his Santa Claus-like appearance. All he needs is a red suit.
“What surprise?” you demand to know, with glee.
Bud isn’t listening, though; he and Lauren are murmuring their observations aloud. I can hear them, but I don’t really know what they’re saying. I hear words like “heel lift”, “rotation”, and “hyper-extended”. They don’t seem to be in agreement, or maybe they’re just both confused.
“Can you walk back to Mom one more time?” Lauren asks.
Finally, the one-girl parade comes to an end, as Bud turns to Lauren and they begin to discuss the possibilities in earnest. I lift you up onto the examination table to rest, and Lauren leans over to squeeze your little legs and rumple your hair. “Good job, goof,” she says with a smile.
Not for the first time, I feel a rush of gratitude for her, this physical therapist whom you love so much. I’m so thankful that she is here at the orthotist’s office with us today. We need her input on your new ankle/foot orthotics, i.e., leg braces.
This will be your fourth pair. When we first had you fitted for braces, you weren’t even walking, at two-and-a-half years old. Now, three years later, we can barely keep you from running, but that doesn’t mean everything’s fine and dandy. Cerebral palsy isn’t a condition you can outgrow or heal from. It’s here to stay.
We do spend a lot of time trying to fight its effects, though: physical therapy twice a week, occupational therapy once a week, daytime braces, nighttime braces, electric stimulation therapy daily. The brain can’t heal, but it can be re-trained, or so they say. Our hope lies in Jesus and neuroplasticity.
Of course, you don’t know life any other way. This has always been your story; it has always been an uphill climb for you. I watch you struggle to do things that come naturally to other children, even those quite younger than you, and I don’t wonder at the occasional frustration you express. I do wonder at your joy, your laughter, your ability to take a tumble and get right back up on your feet again, completely unfazed.
And me? I’m your advocate, your number one fan. I’m the one who spends hours of my life dealing with doctors and health insurance, in special meetings with your teachers, sitting in therapy waiting rooms or at my kitchen table, on hold with Muzak playing in the background, gearing up for a fight with the billing department.
I thought, when we first got the diagnosis, that there would be someone who would be “in charge” of your needs, someone who would tell us what’s best and advise us on all major decisions. But it turns out, that someone is me. Not that your dad doesn’t help – he certainly does. He’s MY number one fan, thank God (we all need one). He loves you every bit as much as I do, and we couldn’t do this without him. But when it comes down to it, I’m the one who gathers and sifts through all the details from all the doctors and specialists and tries to make sense of the data so that we might form some halfway cohesive conclusions. In my head, and in my heart, I carry the gravity, the weight of it all, and I bear it gladly, most of the time. I am the center and I must hold.
I don’t complain. You’re my kid and I love you, and we do what we have to do – that’s all there is to it. I don’t want any accolades either, for the exact same reason. But I think some people have a hard time understanding that, so I usually don’t talk much about your disability either way. It is what it is, and we can’t live our lives as a lamentation. We press on.
But today, we are at Bud the orthotist’s office, and he and Lauren are talking to me, and I am trying to listen and make sense of their words, but I can’t comprehend them.
Finally Bud pauses, then says, “It’s like a car. When Luisa walks, she’s like a car with a stick shift. She’s got a manual transmission. But everyone else is walking around with an automatic transmission. They don’t have to think about how to do it – their body just does it. But Luisa has to think about it and make it happen.”
Listening to Bud’s words, something clicks – maybe for the first time, or maybe the first time in a long time. My breath suddenly catches. I can feel the thud of my heart, the whoosh of the blood in my veins, and the room seems to get very still. Tears prick behind my eyes.
I am the center and I must hold, but sometimes, I cannot. Sometimes, my heart cannot hold it all. I silently pray, “Oh God, please don’t let me cry now. Please.”
I am not the center. He is. He holds it all.
After a moment, I take a deep breath and blink rapidly. The room comes back to life, and I can no longer feel my pulse at my throat. The conversation continues, nodding and listening and going back and forth. The moment has passed.
Before we leave, Bud brings your surprise: a Slinky and a bottle of bubbles. You are thrilled, even though you don’t know what a Slinky is. A shameful hole in your childhood, now filled – thanks to Santa Claus Bud.
You hug Ms. Lauren and pummel her cheeks with kisses and she hugs you back, then I take your hand as we head out of the office and down the hall to the elevator. You run toward it, both feet turned in and dragging your left foot in your signature style, and press the button triumphantly, then look back at me with that “did you see me?” exhilaration on your face.
I see you, my sweet girl. I see every bit of progress that you make, every bit of ground that you lose. I see your struggle and your frustration, and I see your joyful spirit that captivates everyone you meet. I see when you get tired, and when you persevere. I see all of you, and there is so much love, it bursts forth from your smile and your laughter and comes and fills me up inside. And sometimes, it overflows there, too, and my love is a river bounding over its banks after a hard rain. Sometimes, my heart cannot hold it all.