I wanted you to know I love the way you laugh
I wanna hold you high and steal your pain away…
Broken, from the band Seether
Those are the first two lines of a song I haven’t heard before. Ronan played that song on his iPad last night. Some of the Youtube clips that Ronan chooses and frequently goes back to are from shows and movies he watched before he got sick. I like it when Ronan rediscovers those memories. It reminds me of a time when he was healthy, active and on track with his development. But every now and then, we’ll hear Ronan play something on Youtube that he’s never played before. Sometimes they are songs I’ve never heard before either, like last night, Ronan played Broken.
Remember yesterday when I wrote that Ronan had gone back to an old habit? He loves his old habit. He plays clips of favorite lines of his favorite movies over and over and over again. I find that when Ronan gets “stuck”, he’ll plays those movie clips over and over and over again.
That old habit of Ronan’s tends to be a bothersome habit because not only is Ronan hearing the line of a movie over and over and over and over again, but so am I. They are his favorite lines; not mine. But Ronan tends to pick up that old habit of his to soothe himself. He used to not know how to soothe himself and would tantrum instead. Having the ability to self-regulate and to cope are important skills for all of us to have. Ronan’s coping skills are emerging, and as I reflect on some of the struggles Ronan had yesterday, no wonder he spent so much time stimming on his Youtube videos at the end of the day. It was a tough day for him.
Ronan woke up yesterday very tired. He fought me at wake up. He also fought his sister as she tried to help too. Ronan did everything to not cooperate with us. He eased into the day with his dukes up. He also showed some behaviors that typically warn us that a seizure is coming. Ronan was incredibly slow during the day. He needed more physical assistance moving in and out of the car, up and down the stairs, to and from the dining table. He pushed on his eyes and gently stroked his hair—two signs we know are precursors to seizures. When we were all home at the end of the day, and as Ronan got more tired, I asked the kids to be on seizure watch.
When Ronan was done with dinner, he found his iPad and went back to playing his favorite clips. But, in between watching his favorite movie clip, he found that Seether song. I didn’t think anything of it at first. Until he played it again. And then one more time after that.
‘Cause I’m broken when I’m open
And I don’t feel like I am strong enough…
Those lyrics fit right in with how some of Ronan’s day play out. He was weaker than usual. He was exhausted. He was worn out. I wondered if that song wasn’t so random after all.
At the end of a tiring day where it took Ronan much more effort to just get through the day, that song and some of those lyrics, spoke to me. Ronan is technically non-verbal. Yes, he can sign, write and say some words, but he is not yet able to have conversations. Deciphering what he is going through and what he is feeling can be difficult. But Ronan is trying to communicate. He is trying so hard to find the right words. He is communicating with me. Over and over and over again. I promise to be right here always ready to listen.
Listen to the song Broken.