Ronan had seizures soon after waking up on Christmas Eve. Far from home, the last thing I wanted to worry about were seizures. Taking turns early in the day, someone in the family stayed close to Ronan and sat “seizure watch”.
Extended family was also close by, so we had more sets of eyes and ears to keep watch over Ronan. The extra set of eyes and ears were most welcomed. Everyone generously took time to check in on Ronan.
Family is important to me. They always have been. I welcome their presence and look forward to seeing them. Since we go long stretches in between seeing each other, I also welcome observations they make regarding Ronan. Where I see the baby steps Ronan painstakingly makes, extended family tends to see great strides in his development.
As in the past, their recent observations have not been disappointing.
Extended family notes that Ronan is more aware. He is a bit more vocal. They see an incremental increase in awareness to what others are saying to him, too. They see that he understands and complies more readily to requests being made of him. They like that Ronan is responding to what others are asking him to do and that he’s participating more in group activities, like family prayers. Before, he wasn’t fully cooperating or showing any interest in joining us. He’d wander off, either physically or mentally, showing no interest in what the rest of us were doing. Some say it’s as if there’s more of a family feeling about him.
Something else that some family is noticing is a change in Ronan’s facial expressions. His expressions and his demeanor seem more typical. It’s only after Ronan tries to express himself, and fails to, that Ronan’s difficulties become observable again. While those difficulties still exist, our extended family is encouraged by what they see. I am, too.
We knew that this journey would include hurdles and detours.
We knew that it would be a marathon and not a sprint.
We knew that it would require hard work and determination.
I knew that, and Ronan’s extended family fully understood it. Of course, we’d prefer for it to be a bit easier, but each trial, each roadblock, and each struggle has strengthened our family ties. Together, we’ve helped get Ronan through another round of seizures. Together, we’ve navigated through the unending medical issues. Together, we’ve worked through the unknown. With as many seizures that Ronan’s had recently, we know that this journey is far from over, but we continue on it the hope that we’ll be lead to something positive and promising.
Last week, while driving hundreds of miles to be with extended family this Christmas, I thought what a joy it was for us to be able to go away. I’m grateful that we could because I know that not every family with a child on the spectrum is able to manage a trip like the one we took. We’ve had to cancel our own trips in the past, most recently a beach trip we’d planned to take this past summer. After we had to cancel that much-needed vacation, by December, we desperately needed to get away.
Despite the seizures, this quick getaway has been an enjoyable trip for us. Ronan’s been happy. He’s been a little bit more interactive. Ronan’s been able to do a little bit more this Christmas than previous Christmases. He hasn’t joined us in all of our family traditions, but I hope that someday he will. When that time comes, I know that it’ll happen because of hard work, because of determination, and because of the continuous love and support our extended family have showered upon us.
Cathy Jameson is a Contributing Editor for Age of Autism.