Mid-week last week I got a phone call from the nurse at Ronan’s school. It hadn’t been more than half an hour since I’d dropped Ronan off when I saw the school’s phone number flash across my caller ID. The worst emotion comes over me when I see that phone number: heart-pounding, drop-dead dread.
Of course, I shouldn’t think the worst. It could be Ronan’s teacher calling to ask me to pick up snacks for Ronan while I’m out shopping. Or it could be a reminder about an upcoming IEP meeting. But, I always know when it’s the school nurse. And, I can always tell when something awful just happened.
Barely audible, I answered, “H-e-l-l-o?”
Please don’t be anything wrong. Please don’t be anything bad. Please not an accident. Or a seizure.
“Hi, Cathy. It’s the school nurse.”
I braced myself, my body shrinking as I unconsciously curled up waiting for her to continue.
I pressed the phone as close to my ear as possible, “Yes?”
I already knew in my heart what happened, but I still prayed. Please, oh please, oh please! Please don’t let it be serious.
“Ronan’s just had a seizure….”
In my mind, I’ve already put the car in drive, have raced to the school and am holding Ronan in my arms.
“Oh, no!” I exhaled. As I release the air I’ve trapped inside, new emotions fill me—sadness, fear and worry.
“I’ll be right there.”
As I drove toward the school, the nurse shared more. She described the duration of the seizure, what Ronan did before, during and after, who was with him and how he’s responding now. Thankfully, Ronan is okay, but I still need to see him. To hug him. To tell him that I love him. And to say how sorry I am that he had another seizure. I asked the nurse to tell Ronan that I was on my way and that I’d be taking him home for the rest of the day.
The closer I got to Ronan’s school, the harder it was to keep from crying. This wasn’t his first seizure or the first seizure at school. I’ve gotten calls like this before and go through a mix of emotions. Sometimes I manage to hold it together until hours later, and other times I silently cry while the nurse is still on the phone with me.
As scared as I am when I get these calls, this one had me worried, but, I still didn’t cry right away. I could have easily burst into tears the second the nurse told me what happened. Or while she described how this seizure seemed different than the last one Ronan had. Or while I pictured Ronan’s teachers gathering around him to help him through it. Or how I imaged how they stayed very close to him afterward. Thinking about Ronan did after this seizure is what started the tears.
Ronan is usually either confused after a seizure or jumps right back into whatever he was doing prior to it. This time, immediately afterward Ronan was able to sign that he wasn’t feeling good. He signed his response which is something Ronan’s never done with me after a seizure. When he was asked if he was okay, he was able to tell someone that no, he wasn’t. So, when I imagined Ronan and his teachers who asked, “Ronan, are you okay?” and he signed, “No,” I was overcome. Not only did he respond quickly, but when they asked him a few minutes later if he was okay he again signed, “No”. He knew, and he was able to express himself clearly. This was a first, and was also a breakthrough in his communication.
As I approached the school grounds, through the tears I wondered why. Why Ronan? Why now? Why, after these last few weeks? He’s made some really neat progress, and he’s been happier. He’s been willing and able to do more. Why? Why after frequent successful school reports and after advancements at therapy. Why now? And, why again?
Pulling into the school parking lot, I composed myself and walked quickly into the building. I hugged Ronan as soon as I saw him. His teacher recounted the morning’s events, and I thanked her for being so quick to know what to do and for keeping Ronan comforted. I promised to keep her updated with how Ronan was doing and got him home to rest.
Ronan’s seizures are unpredictable. The last one we saw was well over 6 weeks ago. In those six weeks, Ronan’s made some good gains. He got into a good groove, built on old skills and made solid improvements. Six weeks. It was a good run. One of our longest ones in recent months. When Ronan’s seizure-free life is good. It’s great! We both move forward. He learns and develops new skills, and I feel like I’m on top of the world watching miracles happen. Then, just like that, BAM. A seizure happens. Ronan stops dead in his tracks. He hits a setback as the seizure strips him of hour’s worth of skills that he’s worked so hard to achieve. Seizures take away strengths and momentarily throw them away. Work becomes difficult. Activities are now cumbersome. Ronan’s pace needs a kick start and it feels like both he and I are back to square one. All of it makes my worry increase and my confidence plummet.
Ronan didn’t bounce back from last week’s seizure as quickly as he has before. His one day of rest now needed two days of quiet time with limited demands in order for him to fully recover. In the time it took to make sure Ronan could get up on his own again, I went from somewhat anxious into full-on worry mode. I wondered how many more. When will they happen? Who will be there to catch him when they knock him literally off his feet? And of course, I wondered why. Why? Why? Why?
I know why. Other parents of vaccine-injured children know why. Seizures are one of those awful side effects that vaccines offer. Seizures are things we never expected but are scary reminders of how fragile our children’s lives and bodies are now. They creep up and ruin plans and our future. They take away every positive thought we dared to think. Just when I hoped that Ronan could finally break out of some of the autism that’s gripping him so tightly, seizures brought us back to the starting line all over again.
But, with each setback Ronan has, he somehow picks himself up. He figures out how to get up. That’s the beauty of Ronan—he always tries, tries again. It’s no coincidence that this song was playing on my radio just a few minutes before I got that phone call from the school nurse last week. I sang along with it thinking about all the successes Ronan and I have overcome in the last eight years, “Yea! We’re gonna do this, Buddy! It’s you and me—Ronan and Mommy. We’re going to get you to recovery. We’ll get there together!”
How that song haunted me after that call and throughout the next 48 hours as I monitored Ronan’s every movement, breath and more. The longer it took Ronan to recover from the seizure, the farther away from hope I got. How was I ever going to get back up again?
It took awhile, but Ronan got back to his normal activity and energy level by the end of the week. He finished his school days with flying colors. He breezed through therapy without any struggles. He proved yet again that he is a fighter and that he is going to keep on going. Even with these setbacks, he always seems to be able to figure out how to get back up long before I think I will be able to. Ronan attempts the impossible and triumphs time and time again.
Despite all that he’s got going against him, Ronan is my rock. I must remember to look to him for strength and encouragement, because he’s the best example I have. He’s proven that over and over again. Ronan’s needs are great, but they are also worthy of every effort of mine. Because of that, I will get back up again. I have to—to make sure that Ronan is given every chance he can get to do everything he wants to do.
Cathy Jameson is a Contributing Editor for Age of Autism.