Thursday evening was not a fun evening. Ronan began to have seizures right before dinner. As the night progressed, they grew in intensity and then in frequency. Coming one right after, I didn’t have to tell the kids Ronan was under seizure watch. They’d observed the tell-tale signs themselves. Ronan kept dropping things. He kept tripping over himself. He kept having erratic arm and leg movements. Ronan caught a little break after dinner, but with how many seizures he’d had, and with how quickly they would start back up, I had an awful feeling that we’d have to resort to using emergency meds.
Seizures terrify me. I know they terrify Ronan’s siblings as well. During situations like this, my typical children worry. I don’t blame them. Watching Ronan’s body be wracked as it is isn’t an easy thing to observe. Desperate to make them stop, but feeling absolutely helpless, the siblings start to pray when he’s has multiple seizures like he did Thursday night. Sometimes, they pray together.
Mommy, I don’t know what to say…except maybe asking God to heal him? Yes, honey. Ask that.
Dear God, please help Ronan.
Lord, make them stop. Please. This isn’t fair.
Their innocence, as well as the mountain of faith they possess, carry them through these scary moments. Where I feel like I’m about to crumble on the floor in a heap, the siblings do everything they can to stay brave. I try my best to not let them see how worried I am because they need my reassurance that things will get better. Things usually do get better, but on Thursday night, things would go downhill first.
As the seizures ramped up, my husband tended to Ronan so I could talk to the others. Barking orders, I told them to get themselves ready for bedtime. They each had a few things to do before we’d start family prayers and before I had to make the decision to give Ronan the meds or not.
Get jammies on.
I felt like a mean ol’ mom, but each of my children understands that in these moments, ones we wished would never happen but do, Ronan has to come first.
Within minutes, they were ready. In that same amount of time, though, Ronan had had three more seizures. It was time to prep the meds. Ronan’s little brother could not hide the fact that he was crushed when I told him. Trying to be upbeat he replied, “Okay, Mommy.” Without hesitating, he added, “Do you need help?”
“Yes, actually, I do,” I let him know.
Proud of how calm he was, I said, “We’ll lay Ronan down, so sit near his head. You can try to distract him. Try to make him smile. Maybe sing him one of his songs or say one of the pages you’ve memorized from his favorite book?”
“Okay,” he said.
Sensing uneasiness coming from his little sisters who’d just joined us, Willem looked at them and said, “If you don’t want to watch, you don’t have to.”
They didn’t want to, but they didn’t want Ronan to go through this alone. And because one day, if they have to administer the rectal dosage themselves, they watched.
Once the meds were administered, we prayed. Going from one family member to the next, Izzy asked each of us who we were praying for. Ronan got the most intercessions that night.
Scooting them out the door so that I could get Ronan under his covers, Fiona walked Ronan to his bedroom. I told the kids, “I’ll tuck you in as soon as Ronan falls asleep,” and got Ronan into bed. The younger siblings expect to get tucked in right after prayers, but they understood again that their needs were not number one on my list. Dozens of seizures had wreaked havoc and literally gripped their brother’s body. They’d get a good night kiss, but only after Ronan got settled.
Once the seizures stopped, Ronan was able to rest. Once he was relaxed, he was finally able to fall asleep. No longer at the mercy of the seizures or feeling the fear that falls over me in times like this, I, too, relaxed. Reflecting on how quickly this and previous situations have gone from bad to worse, I remembered that we always get a fresh start. After the rash of seizures ends, after the meds kick in, after our heartrates go back to normal, we get the chance to start over. I thank God that we have been able to start over as many times as we have. Not every kid with seizures gets that chance. Not every family dealing with what we’ve dealt with does either.
Friday morning was uneventful. So was the rest of the day. But with the events from Thursday evening still fresh in their minds, the kids simultaneously fired off questions when they came home from school.
How is Ronan?
Any more seizures?
Did he have a good day?
Is he going to be okay?
I let them know that Ronan was tired but was doing great. He didn’t have any more seizures and he got to have an easy day all day long. Pleased with that news, they smiled and then they cheered.
I thought the conversation was over, but both Fiona and Willem let me know separately that they were still kind of worried. While at school, Fiona told her friends what had happened. Understanding how frightening seizures can be, her friends offered to pray for Ronan and for us. Willem let me know that he spend some quiet time praying during the day, too.
I asked, “Who’d you pray for, Little Buddy?”
He said, “Oh, for Daddy and for Ronan.”
“You did?” I asked.
Still praying for a miracle – that Ronan be healed, that he have no more seizures, that Ronan can talk and play with his siblings, and that other kids like Ronan can be healed too, I said, “You’re such a good kid, Willem. Ronan’s lucky to have you for a brother.”
I did, too.
Right after he’d shared that he spent time praying, I sensed a peace come over Willem. No longer worried, Ronan’s little brother finally relaxed. Not showing him that I’d started to tear up, I quickly asked how the rest of Willem’s school day was. I had hoped his first day back after being out sick for a few days would be a good one. “Mom, it was great! Some of the kids said they missed me. Oh, and there was a pep rally today! I cheered for the 8th graders. They were playing against the teachers.”
And just like that, life returned to our normal once again. I’m so glad for that. Nights like the one we’d just had so clearly remind me that this life with autism that the siblings observe and live alongside is not easy. The siblings didn’t ask to see what they’ve seen. They did not ask to be haunted with things like seizures. They did not ask to be as responsible as they have had to become or to grow up as quickly as they have had to. These siblings didn’t ask for any of that, but they somehow, and somewhat effortlessly, fulfill their sibling role with honor.
Instead of complaining, because easily they could, my children continuously and magnificently do more for Ronan than I expect. With no training, with no warning, and sometimes with no fear, they and the other autism siblings we know do far more for their brothers and sisters than I ever imagined a child would be able to do. They do it with hope, with grace, and always with love. It’s an inexplicable love these siblings have. I pray that it guides them wherever life with autism takes them.
Cathy Jameson is a Contributing Editor for Age of Autism.