I could have asked a friend to watch Ronan yesterday, but I decided to try to get all the kids to the late Mass on my own. Izzy wasn't so sure it was going to be a great idea. "Mom, don't you think we should do Mass at home? You know, because...after last night?"
Ronan had been up in the middle of the night. Wide awake. Loud. Happy. Laughing. For hours. With how long he'd been up Saturday night, we knew that Sunday was going to be a long day. Even knowing that, I reminded Izzy that before we resort to watching Mass on the computer, we had to at least try to get to actual Mass at our church. She remained skeptical but got herself ready to go while I made sure that Ronan's backpack was stocked with snacks, diapers and a change of clothes.
It's always a mad dash to get all five out the door, but we did it and got to Church fairly close to being on time. On the way to Mass I looked in the rear view mirror. Ronan yawned. Oh, I'm sure you're exhausted, buddy, I thought. He yawned one more time while we were pulling into the parking spot. In that moment, I wondered if I'd made a mistake bringing Ronan. When Ronan willingly got out of the car without putting up a fight, I put my worrying aside.
The processional song had just started, so we slipped into a pew toward the back and got ourselves settled. I had carried Ronan in, but as Mass continued, he made no indication that he wanted to stand on his own. I didn't mind. Ronan isn't a big fan of hugs or snuggling for too long, so holding him in my arms a few minutes longer was heavenly.
The last time we went to Mass, Ronan made it to the Homily before Izzy and I took him to the narthex. There, we kept him as quiet and happy as we could without drawing too much attention to us. That's sometimes hard to do, but this little sister has a way of keeping Ronan focused. Since she'd been so helpful in the past, I promised Izzy that if I Ronan was unable to stay in the sanctuary for the entire Mass, she'd get to help again.
Yesterday, we never had to leave the pew. Right before the First Reading, Ronan fell asleep in my arms. He stayed asleep for 30 minutes. When the kids looked over at him, they were all smiles. I was, too. There is nothing more comforting than holding a sleeping child in your arms.
Ronan woke before the Eucharistic prayers. Content on my lap, he remained there until it was time for me to receive communion. He stayed quiet and in the pew from the Processional song to the last note of the Recessional song. Words cannot describe how overjoyed we all were. Since past Mass experiences have been quite difficult, when Mass was over, we left the church feeling like we'd completed a marathon. I love it when we as a family can celebrate those baby steps.
The rest of the day was relaxing. Until the seizures started.
That evening, one seizure after another, they were getting bigger and lasting longer. Staying close to him, holding his hand when he'd let me, making sure that if he went down, I could quickly protect his head, I was right there next to Ronan. Realizing himself that he was getting more and more unsteady on his feet, Ronan tried to find a cozy spot on the couch to rest. He had started yawning, so his little sister went to find Ronan's favorite blankie for him.
Once he got cozy, in between the seizures, I found myself cradling Ronan in my arms. The seizures were gaining in intensity and frequency, though, and hugs and encouragement would not be enough. I knew that the next step would be to administer emergency medicine. As worried as they were, two of Ronan's sister offered to sit with their brother when it was time for that. They put on brave faces despite being as worried and scared as I was and stayed with him. 20 minutes later, Ronan fell asleep.
Scooping him up to carry him upstairs, I carefully brought Ronan from the living room to his bedroom. Watching me getting him in his bed, Ronan's little sister gently placed the blankie over her brother. Sadness filled her eyes. I smiled at her, but she could tell that my smile was not full of hope and happiness. It was masking a sadness that had fallen over me.
With Ronan safely tucked under the covers, the kids tried to go back to what we were doing, but how? They had all been playing living room. The kids were keeping Ronan company while he did his own thing, but they were all having fun. To jump right back into playtime felt disrespectful. After hugging the kids and holding them a bit longer, I assured them that Ronan would feel lots better when he woke up. For now, he needed sleep. They agreed.
As we cleaned up, the kids and I talked about the seizures.
They tried to make sense of them. They let me know what they thought of them. They tried to not be resentful toward them, but they were resentful. Before we sat down for dinner, the kids told me that they don't like that seizures creep in and ruin Ronan's day. I told them that I don't like that they do that either.
We're pushing the easy button today. Ronan slept 14 hours straight. After last night, there's no way he's ready for the two therapy sessions I had scheduled for him today. So, we rest. We relax. We gain strength and energy for tomorrow while enjoying the day off today.
While Ronan is enjoying a day off, I'm not going to veer too far from him. His latest seizures have not been predictable. He may have one one day and ten another day. Not knowing when he'll have one let alone several of them in a row is hard. Being unable to determine a trigger hasn't helped me be able to manage the seizures as well as I'd like to.
For as long as Ronan's had them, I don't think I'll ever get used to the seizures. The siblings won't either. But for as long as he needs us to, we'll be ready to scoop him up, to cradle him in our arms, and to always be there for him.