It’s like trying to speak those first words in the morning. Fresh out of bed, still stretching out joints, you open your mouth, and you sound like you’re auditioning for the role of Frog.
It has been a long, long night, and in the dark, I have forgotten how to talk.
So here comes some throat-clearing.
To write, one needs a beginning. I have no idea where to start.
I want to tell the story of the last year, mostly because I need to process what happened to us. But right now, I lack the courage. It still hurts too much, and I cry every time I try.
There has been joy in this year, here and there, all the brighter for the darkness. Let me tell where we are right now, because right now is beautiful and full of light as golden as an October afternoon.
On the last Tuesday of September, Tarica and I went to Children’s Hospital of Pittsburgh for an appointment. We sat in an exam room, as excited as first graders in August. When Dr. Welch and his team walked in, we greeted them with huge grins.
Dr. Welch did not disappoint us. “Tarica! What is going on? Last time I saw you, you were in a wheelchair and a helmet.” He looked at me for confirmation.
I nodded. “In May, yes. She had just had another regression.”
He studied Tarica, sitting upright in an armless chair. “You could barely hold your head up back then. Now look at you! What happened?”
This was the moment we had gleefully (and tearfully) discussed the night before: the big reveal. At the May appointment, Tarica could barely walk or talk. Her eyes were lifeless. I was dressing her and bathing her and sleeping with her. The seizures were destroying her, and no one could stop them.
Six months before that appointment, on November 23, 2020, an RNS device was implanted into her brain. The device could be programmed and trained to detect abnormal brain activity and respond to it. Think of it as a pacemaker, but for the brain. Best case scenario, the device would block abnormal activity from turning into seizures. But the device had to be adjusted slowly. It would take time to find the right setting for her brain—time she did not have. Every day pulled her deeper into the abyss.
In May, Dr. Welch and his team had analyzed the data collected by the device and tailored a new setting specific for her brain. I was afraid to hope, so I didn’t say much in the weeks that followed. Eventually, either Linford or I dared to say aloud to the other, casually, as if it didn’t much matter, “The seizures aren’t as bad right now, are they?”
We exchanged a long look and then shrugged. No more words were needed. She might be improving, but we had lost the ability to rejoice, because years of experience had taught us improvements didn’t last. Every lull in the storm would end, and epilepsy’s grip on her would only tighten.
But the facts revealed the truth even if our hearts refused to acknowledge it. For the first time in her epilepsy history, the seizures had become milder. She stopped falling during the seizures. Before long, the wheelchair was folded up in a corner. She no longer wore her helmet. Midsummer, she told me she was ready to sleep by herself, so after two years of sleeping downstairs I moved back up to my own bed. Her handwriting improved dramatically; her balance got better. Although she still seized at night, we were now counting daytime seizures by the week instead of the day.
And then weeks went by with only nighttime seizures. We forgot the date of her last daytime seizure. Although we still leaped violently whenever something crashed to the floor, it no longer was Tarica.
We had watched Tarica improve over the months, but when I saw her through Dr. Welch’s eyes—the startling difference between May and September—it finally became real to me.
I had to know one thing yet. I scooted forward in my chair and met Dr. Welch’s eyes. “The difference is amazing, but I find it hard to believe. I could hardly wait for today because the RNS data will give me an answer to a question I’ve been asking. Is she seizing less because her abnormal brain activity is slowing down, or is she seizing less because the device is blocking the activity from turning into seizures?”
This question had kept me awake at night. If her abnormal activity had simply slowed down, then the seizures would quickly resume if that activity picked back up. However, if her brain was as crazy as ever in there but the device was blocking the seizures, then we could hope this was the beginning of her second chance at life.
Dr. Welch pulled up the data. The graphs were simple enough to understand at a glance what was happening in her brain.
It was as crazy as ever in there.
I sat back, limp with shuddery emotions. The device was doing its job. That little machine in her head was all that stood between her and oblivion.
For a moment, it was as if a door creaked open somewhere on the edge of heaven, and through that door drifted an ethereal music, soaring and triumphant. It sang in my veins, ran down my spine—and then the door slammed shut. I fought back tears. Were they tears of joy or of sorrow? We had finally drawn a line that epilepsy could not cross. So much had been lost, but the line was holding.
Dr. Welch tweaked the RNS settings again, a slight refinement that we hope will stop the nighttime seizures. If the seizure count remains steady or improves in the next month, we will start weaning her from one of her drugs, the one with the worst side effects. When Dr. Welch said those words aloud, I felt a weightlessness in the pit of my stomach, as if I had leaped from a cliff and was free-falling toward the sea. We have never weaned without adding a replacement. Were we ready for this?
On the way home, after Tarica finished listening to Ralph S. Mouse, we talked. It is difficult to hear her in a vehicle. She can no longer modulate her voice, so she speaks in a quiet monotone. Certain sounds, especially d and t, are often missing. Her words come with far greater effort, like a non-English speaker learning how to shape words. She frequently has to say things three, four, even five, times before I understand her. But on the road, we had time to work it out.
Back home, supper would be already over. Sunlight had turned into twilight. As we approached Altoona, I pointed to a gap in the mountains where the city lights shone below us.
“That’s pretty,” she said.
“You know what’s amazing, Tarica?” I didn’t wait for a reply. “If you had been born any time sooner, the RNS technology wouldn’t have been available when you needed it. We live close enough to Pittsburgh to drive there. Dr. Abel and Dr. Welch decided to work at Children’s Hospital. They are the ones who started the RNS program at Children’s. You were the seventh patient to get a device, so this is still new. And here you are, talking, walking, going to school, and living again.” By now, tears were running down my face. “Do you know how easily it could have been different?”
She did.
I fumbled for a tissue and blew my nose. “I thank God every single day all day long that you are better. I can’t get done thanking Him. He’s given us a miracle.”
“I thank Him too,” she said and found a tissue of her own.
Some of what she has lost may never be regained. But she will build a new life with what remains.
It has been nearly a year since I wrote to you. Last fall, I intentionally gave up everything that didn’t pertain to our immediate survival. I whittled my life down to taking care of Tarica, washing our clothes, and feeding my family. Friends and family helped a lot with the last two. Nobody else could be Tarica’s mother, but others could and did fold laundry and make food.
Now that she has improved and is able to attend school by herself, I am rebuilding what has been destroyed. I had lived for so long in a state of hyper-alertness and emergency that I lost the ability to concentrate deeply. My mind often feels like a skipping stone skittering over the surface of a lake. So I’ve been keeping my hands busy while waiting for my brain to recuperate. There is plenty of work to be done, corners and closets and clutter that I’ve ignored while tending to what mattered most.
In April, I stopped believing she would ever return to us in any meaningful way, so far had she fallen into the abyss. But she is back—a little broken and fragile, yet still smiling. This has not yet ceased to amaze me, and I pray it never will. I want to be perpetually astonished at an ordinary life, because astonishment leads to gratitude and gratitude helps me remember we don’t deserve anything—not even the second chance we’ve been given.
How easily it could have been different.
And how beautiful it is to live again.
We live in a world full of grief and fear and tragedy. I am protected somewhat from it by a cocoon of joy, but the bad news still filters in. As I consider sending these words out to you, I flinch at the thought of those who will read this while sitting among ashes and tears. It is not fair that I should have joy while you do not.
I wish I could give you the miracle you are pleading for. Instead, I have only words for you, one small, heartbreaking truth I learned in the last year. Sometimes while you are pleading for one miracle, you are given another, straight from the Almighty: the ability to endure the unendurable.
Three years ago, if I had been granted a glimpse into the future and had seen the girl Tarica is today, it would have shattered me. We’ve fought all these years to keep her whole, to preserve the girl she was. In most measurable ways, we lost that battle. But the battle taught me there is something worse than being a little (or a lot) broken.
Fighting alone.
Next time, I want to tell you about all the warriors who joined our fight.
Here are a few pictures from the last year. |
