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Best of: Only In My Dreams

Beautiful dreamsRonan's been popping up in his siblings' dreams lately. He was in some of my recent dreams, too.  Each of us have seen Ronan playing, interacting appropriately, looking genuinely happy and also talking.  Since those dreams mirror our everyday hopes, I thought I'd share an older piece today.  It's about one of the first dreams I had about Ronan after he got sick.  In it, he spoke. He spoke clearly, and he spoke confidently.  It's been a long time since I've heard his voice, but someday, I hope that I can hear my son speak again.   Enjoy this "best of" post.

By Cathy Jameson

Does it count if my non-verbal son spoke in my dream?  Does it count if I asked him to repeat the sentence to make sure it wasn’t a fluke and he did?  I don’t know what it meant, but Ronan said to me, “I saw the white car going down the road at 15 miles per hour.”  He said it twice.  He said it to me while looking me straight in the eyes. He said it to me like any typical 4-year old would.  He said it.  Then, I woke up.

This is not the first dream I’ve had about Ronan using his words. I asked God one day if I could please just have a sign that we were doing the right thing by walking down the biomedical road with all the supplements, all the doctor visits and all the research it was going to take to heal Ronan’s body.  That night, I had a dream that Ronan spoke. I was holding him on my hip as I would hold any typical kid of mine.  That was the first sign that things were hopefully getting better—Ronan’s sensory issues would never allow for that kind of snuggle. 

Back to the dream, Ronan and I were walking down a beautiful dirt path near the Potomac River that I have only walked down once before in my life.  I looked at Ronan and said, “Ronan, can you say Mommy?”  He said Mommy.  I kept on walking, “Ronan, can you say Daddy?”  He said Daddy.  I know I had to try to trick him since these were words that any typical kid should say.  I then looked at Ronan while we were walking under the tree branches that met over the middle of the road with the sunlight filtering in and said, “Ronan, can you say chocolate chip cookie?”  Well, the sweet little boy said chocolate chip cookie just as plain as day.  I know we kept walking down the road a bit more and then I woke up. 

That was two years ago as we were starting Ronan’s road to recovery.  Back then, the few words Ronan said were quickly taken over by his silence.  Only once in the last two years have I heard him say Mommy clearly.  We hear Daddy about every 3 or 4 months, but only a gruff Daaaddddy and then nothing more.

Reading about children who are late talkers gives me mountains of hope.  I want to be one of those parents who reports that their non-verbal child all of a sudden said, “The cat walked under the table,” or “I want juice, not milk.”  Wouldn’t that be so awesome! 

One day, Ronan was holding my hand coming in from outside playtime. He’d flicked his fair share of sand for about 20 minutes before it was time for dinner. As we walked across the backyard, Ronan looked up at me and started to speak.  I know he asked me a question since his eyes were inquisitive and his inflection clearly was addressing a possibility.  The hardest part was deciphering the jumbled words that were spilling out of his mouth since I could not understand one consonant or vowel in any of it.  I did not want Ronan to think I was a complete dummy so I looked right back at his big brown eyes and said, “Wow, Ronan.  That was a great question.  I don’t know what to say.”  It could have been any number of things he asked—are we going to take a bath? Is Daddy home? Did you make me those nasty GFCF noodles again? Do you love me? 

When Ronan doesn’t want to do whatever it is I have set before him, he is verbal.  Sounds do come out of his throat—on bad days they are muffled and full of angst.  It has to be so hard to want to say, “Mom, I just don’t want to play with that peg board. Can’t I please go outside instead?”  We say that when Ronan finally does speak, he’s going to say, “Gosh, why did you send me to that school where it’s just so loud?” or “Mom, why don’t you give me more ketchup—there’s barely any on these French fries!”  or “Daddy, it’s just a slice of Heaven when you walk in the door after work every night.”

I keep reading about other families and their amazing recovery stories: how their child came out of the non-verbal world.  The trials of daily living become so much more manageable.  The triumph over a professional’s misdiagnosis is celebrated as the once aloof, moaning, flapping, bloated, self-injurious child becomes an active member in his family, with his peers and in his community.  It’s those stories that I cling to.  It’s those parents I look up to.  It’s those children I want to put on my shoulders and do a victory lap with them and for them.

Nights that I can’t sleep I start wondering why all of my typical son’s development started to go wrong.  I know I can’t go back in time.  I know I can’t wish this all away.  However, I do know that I can try ever so hard to bring Ronan back to our reality.  I know I can help him with every daily skill he just doesn’t comprehend.  I know I can still go to bed at night and dream that one day, with all of the hard work we are actively doing, we will hear Ronan’s words again.  If only in my dreams, I believe there has to be some good in all of this.

Cathy Jameson and her husband have 4 children. Their two boys are vaccine injured. They celebrate any sounds that come out of Ronan’s toxin-filled body.  One day, some day, they will all finish that long road to recovery.  cathy@stphilomenagroup.org

Comments

Sylvia

Oh how I know that feeling of joy at hearing your son speak to you in words, only to wake up to find it was just a dream. It hurts, but the memory of those dreams spur you on as well. I know my Nick has SO much to say!

Thank you Cathy for sharing your journey with us. You are able to put into words what so many of us feel and live day in and day out.

kws

Your words resonate Cathy, thank you for writing this beautiful, touching piece. After years of doing biomedical with substantial progress, I still yearn to hear:

"Dad, can I go over to Bobby's house to play ?"

That hasn't happened, ever. Now, our moments come when we watch national geographic together or struggle through a haircut. Thanks again

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