The Littlest Pickle was helping me clear the dinner table the other day when she heard Ronan attempt to say something. Attempting to speak again, I deciphered what it was that Ronan wanted and then went back to cleaning up. I glanced over at my youngest daughter. She was smiling.
“Mommy, I wonder what Ronan’s voice will sound like when he talks.”
A favorite memory of mine instantly came to my mind. Chunky and with beautiful tan skin, Ronan was engaged. He was displaying perfect eye contact. He was sociable, happy and chatty. Ronan’s speech hadn’t yet vanished in this memory of mine and I remembered hearing meaningful verbalizations and that functional words were forming. At this time in his life, Ronan’s eyes were full of wonder and were stunning. His sweet voice captivated those whom he came in contact.
I miss that husky voice of his. I miss those bright brown eyes too.
I watched baby videos this afternoon. The image I had of Ronan and the sound of that husky voice flashed across the screen. I smiled. Then I ached. I wasn’t prepared for what would come next. I don’t mean what event that I had videotaped next in the home movie; I mean the onslaught of raw emotions that went through me.
I told myself to stop watching the videos, because I knew that the more I watched, the more I’d wished I hadn’t started.
Ronan was developing. Until he wasn’t.
Ronan was talking. Until he couldn’t.
Ronan was interactive. Until he cared more about pushing one button over and over and over and over again on one toy than he did about us.
Delays, lack of development and no development whatsoever. I could see it in the videos.
How did I miss this? How did no one else point it out? How did I let what happened happen?
I had no idea.
I had no idea what else was to come either.
I had no idea how difficult things would get. I had no idea how our lives would change. I had no idea the fighting I’d have to do for my son or for my family. People have asked me, if I could change things for Ronan, would I go back in time and change things? I absolutely would. Why wouldn’t I?
My child went from typically developing with emerging language skills and abilities to being completely silent. He went from playing with toys to fixating on pushing buttons that made noise. He went from sleeping well to having bizarre sleep patterns and habits that kept him and our entire house awake (and still do on a bad, bad night). Ronan went from being abled to being severely disabled. Of course I’d like to turn back time and change a thing or two.
I know of some people who wouldn’t, and I respect that we have differing beliefs and views. But for me, for my family, and especially for my children, we wish more than anything that things could be different for Ronan.
My children support their brother. They would do anything for him and have gone beyond my expectations to keep him, his health and his safety forefront in the minds, in their hearts and in their prayers. It’s those desires that keep us working hard for Ronan. That push us through the emotionally raw moments. That remind us that today may have been difficult but that tomorrow has the chance of being better. Even for the Littlest Pickle, who never knew Ronan before he got sick, who wants so much for Ronan to be able to talk, to play, to simply join in our family activities, she believes. She believes in the power of prayer and in always keeping hopeful.
That Littlest Pickle sat with me and watched Ronan’s baby videos with me today. She sat in my lap facing the screen. I’m glad she sat in front of me. That way she couldn’t see the tears welling up in my eyes. She couldn’t see the sorrow I carried in my heart as I watched the darkness slowly settle into Ronan’s eyes. She couldn’t tell that I ached when it was clear that Ronan was plunging deeper and deeper into the depths of silence. Her focus was on something else.
Ronan’s little sister saw that he could play, that he could do and that he could talk. She remarked how happy Ronan was and commented throughout the video. I’m glad she sat with me, because she picked up on the hopeful, on the happy, and on the possibilities.
At one point in the video right before Ronan went through a huge regression, when we heard Ronan’s husky voice, when that favorite memory I have of Ronan was right in front of me on the screen, she squealed.
“Mommy! He could talk!”
Yes, my love. He could.
How I long to hear his words again.