By Raising a child with as many medical issues as my son has is no easy task. That’s why we celebrate each and every little gain as they happen. Those are some of my favorite days. Other days, like one we had last week when we hit a medical setback, I’m reminded of how this all started. I’m not fond of those memoriesnor of the emotions that creep in when they resurface.
My youngest was helping me clear the dinner table when she heard Ronan attempt to say something. Attempting to speak again, I deciphered what it was that he wanted and then went back to cleaning up. I glanced over at my daughter. She was smiling.
“Mommy, I wonder what Ronan’s voice will sound like when he talks.”
A favorite memory 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. Hisspeech hadn’t yet vanished in this memory of mine. I remembered hearing meaningful verbalizations and knew that new functional words were forming. At this time in his life, Ronan’s eyes were full of wonder and were stunning. His sweet voice captivated many whom he came in contact.
I miss that husky voice of his. I miss those bright brown eyes too.
After cleaning up, I watched baby videos and looked through digital photos on the computer with my younger kids. A special request of theirs, they love to see their tiny little selves on the computer screen. They love it even more when I have time to sit down with them during this activity. Mom! Look at how small I was! Oh, Mommy. I remember that toy! Tell me the story again that goes with this picture. I love hearing it. It’s always a treat to hear my children giggle and reminisce about the “old days”. Midway through that afternoon’s slide show, 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 again on one toy than he did about us. I didn’t see my cute, happy child in those images. One photo after another, I could only see delays, lack of development and then no development whatsoever.
How did I miss it?
How did no one else point its 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 of the level of fighting I’d have to do for my son or for my family. Witnessing the changes and knowing the pressure we’ve been under all these years, people ask me, if I could change things for Ronan, would I go back in time and change anything. My answer is always the same.
I absolutely would.
And why wouldn’t I?
My child went from typically developing with emerging language skills and abilities to losing skills to becoming 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 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.
Given the chance, I believe others would also.
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. Daily, they go beyond my expectations to keep him, his health and his safety forefront in their minds, in their hearts and in their prayers. It’s their desires that keep us all working harder 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 my youngest, who never knew Ronan before he got sick, who wants so much for Ronan to be able to talk, to play, to join in our family activities, she believes. She believes in the power of prayer and in always keeping hopeful. I saw that hopeful look in her eye again while we sat and looked at videos.
As she and my other daughter sat and watched Ronan’s baby videos, they only noticed the cute, the cuddly, and the happy. I’m glad Ronan’s youngest sister sat in front of me. That way she couldn’t see the tears welling up in my eyes the more photos she paused to admire. 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 at one time. She remarked how happy Ronan was and commented throughout the videos she watched. 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 that I remember so well, 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.
Cathy Jameson is a Contributing Editor for Age of Autism.