Silent Sunday
By Cathy Jameson
One of my best friends started a blog a few weeks ago. I’ve never followed blogs religiously, but I’m checking in daily to her spot on the blogosphere to see what’s new in her world. In the past I’ve bounced from one blog the next never staying too long with one before being attracted to another. I wasn’t aware of a blogging tradition called Wordless Wednesday until I started keeping up with my friend’s blog. That title is pretty self explanatory: no words are used on Wednesday’s entry. Instead, a picture or image is posted with an invite to readers to offer a caption describing their thoughts or feelings of the picture. What a keen idea!
Why on earth am I telling you all this? Well, I sat down to do some writing for this Sunday’s post and nothing came to me. I’m mentally and physically exhausted. I’ve had a very busy summer which has tapped out all of my creative writing juices. I’m also a little distracted this week as my kids are getting ready to start school. I’ve been running around trying to get school supplies bought, a better night time routine started while also trying to find time to get myself to some meetings. I’m beat! My brain just can’t squeeze out anything more this week.
It’s not like I didn’t try to write something. I’m always thinking about my next piece. It’s so therapeutic for me to put on paper the thoughts that swim through my head. I’m thankful for the chance to share Ronan’s story and to document the progress he’s been able to make despite his vaccine injury. I sat down on Tuesday hoping to get a story started. It was fruitless. I sat down again on Wednesday and actually got something on paper. But, by the time I was done writing it at 12:38 a.m. I wasn’t feeling any love from the piece. It sounded too much like a post I wrote a year ago. It didn’t tug on my heart strings like I’d hoped, so I filed it in my “later-rewrite” folder.
I walked away from the computer and went to bed way too late that Wednesday night thinking, good grief! This isn’t like me. I have had writer’s block before but something usually catches my ear in a news report to trigger a reaction worth writing and sharing. Not so much this week. I’ve got bubkas. Nada. Nothing.
I went hunting for a topic on the internet Thursday evening. That gave me ample excuse to check out those blogs I sometimes bounce around on. That Wordless Wednesday blogging tradition popped up as again I searched. I thought, Viola! An idea! My stories are usually well received on Sunday. What if I did something similar like a ‘Silent Sunday’ post? It could buy me some time now in order to come up with a really great story for next weekend!
My idea sounded super easy—pick a picture, slap in on the document, keep the writing content to a minimum, send it to Kim Stagliano before the end of the week… and success, there’s my post! I’d have something to submit, and you’d wake up to on what we all hope is a quiet, meltdown-free Sunday. But, I couldn’t figure out which picture to choose. I’m using an old computer of ours this summer. It’s really, really old and has been the “extra” computer the kids are allowed to play on. It has some Disney games, some sign language files and a few family documents I’d forgotten about. The computer is a beast and not like the faster, newer, snazzier computer I like to use.
This computer has another feature we don’t use on our newer one—it has a screen saver set to scroll through some of Ronan’s baby pictures. I’ve already come to grips with the pictures as I see that fat, happy baby who used to be so typical in my eyes. Fully coming to grips with my son’s past is something I haven’t gotten around to yet. Too many “if onlys” get in my way when I think about Ronan’s early years. Some days I stop the slide show before those pictures flash across the screen. Other days, I sit in silence and think, My Gosh! Where did that baby go?! I have no time to look for that baby because I’m chasing an 8-year old child with delayed listening skills hoping to redirect him to do more appropriate things.
I know I can’t physically go back in time. Lord almighty, I certainly wish I could. What I would do differently! What I would say more affirmatively! What I would demand most definitely! But, here I sit staring quietly at pictures that capture what was lost so many years ago. Ronan’s eyes changed from bright and happy to glazed over. As he aged, that glazed over look even shows moments of a strange emptiness. Those pictures capture the whole child Ronan used to be. I can’t help but sit in silence-- my own blank stares are full of disbelief.
For this Silent Sunday post I want to be able to sit in silence and be thankful for that fat, happy baby who used to be. I want to sit in silence and appreciate the hundreds of friends and family members who have supported me so as I continue to walk down this path with Ronan. I want to sit and silence and try to let go of how great a wonder it still is to me that Ronan started to slip away all those years ago. I want to sit and silence and be thankful for my chance to write about Ronan because that writing helps to release some of the deepest pain I’ve ever felt. I want to sit in silence and say to myself, Damnit, this sucks. But, damnit, I’m going to make sure Ronan gets what he needs and when he needs it. I want to sit in silence and read the thoughts you’re going to leave after the post because I want to cling to how you found your strength. Without that strength, where on earth would we all be?
I want to sit in silence and try to enjoy the changes Ronan now experiences—a mostly non-verbal child riddled with intense issues I’m unable to wish away. He does have some language so I do say he’s pre-verbal, but his mostly silent day is still so hard to sit through. Even all these years later, I haven’t fully accepted the fact that something man-made turned that fat, happy baby into a very dependent, mostly delayed and sometimes despondent individual.
So, I leave you with a picture that I can go back to look at and enjoy. I’ll leave you with my thoughts of a peaceful memory--a memory of a fat, happy baby I remember oh, so well. Ronan had an entire future ahead of him that changed right before my eyes. That baby boy pushes me the hardest. He does this even though through his silence; a silence that sneaks into every day of my life. I won’t let that silence stop him. I won’t let it slow me down. I’m proud of everything Ronan does because it’s through his struggles and his pain that my silence has been broken.
Cathy Jameson is a Contributing Editor for Age of Autism.
Thank you, Dave. That was beautiful.
Posted by: Cat Jameson | September 03, 2011 at 10:16 PM
beautiful baby Ronan.........just like beautiful baby Jack, where did they go? What HAPPENED.
xoxox
Posted by: Jack's mom | August 29, 2011 at 01:34 PM
He is so beautiful, Cat! As are you my dear friend!! Straight from the heart. xox
Posted by: Lin Wessels | August 28, 2011 at 11:45 PM
Hi Cathy,
I must admit that I don't have a clue what life is like for you but you have given me a look into your world and I appreciate you for doing so. You have given me a different perspective on life in general and I thank you for that. Ronan is a picture of joy, and potential. Please don't ever settle in your heart and mind that what is today will always be. For those who believe in God let's ask God to give Ronan a special touch so that he can share with Cathy what's on his mind and heart. That he will laugh, cry and create memories that last a life time. Also, that Cathy will have the wisdom and strength that she needs to manage this season of her life. I believe that the God who created this massive and complicated universe can give Cathy the desires of her heart. Would one or two of you join me in asking God to intercede? Please!
Thanks
Posted by: Dave | August 28, 2011 at 11:32 PM
Thank you for your beautiful and poignant writing. I, too, shared a silent Sunday that was produced by my 17 year old Joshua. He shuts down and retreats when there is stress and stays in his world. His speech is usually peppered with his jokes, phrases and routines.
The threat of the impending hurricane here in New Jersey and the stress of accompanying both me and his twin brother Matt on a frenzied shopping excursion on Saturday rocked his world. See, he is like a sponge picking up any ambient stress in our environment and internalizing it. Josh, lacking the hurried speech and response time that we have, can't keep up the pace. He simply zones out.
I am happy to report some words this evening.
He is truly the flower that is described in his favorite poem. Maybe Joshua has the right last name, Rose...
somewhere i have never travelled,gladly beyond
by E. E. Cummings
somewhere i have never travelled,gladly beyond
any experience,your eyes have their silence:
in your most frail gesture are things which enclose me,
or which i cannot touch because they are too near
your slightest look easily will unclose me
though i have closed myself as fingers,
you open always petal by petal myself as Spring opens
(touching skilfully,mysteriously)her first rose
or if your wish be to close me, i and
my life will shut very beautifully ,suddenly,
as when the heart of this flower imagines
the snow carefully everywhere descending;
nothing which we are to perceive in this world equals
the power of your intense fragility:whose texture
compels me with the color of its countries,
rendering death and forever with each breathing
(i do not know what it is about you that closes
and opens;only something in me understands
the voice of your eyes is deeper than all roses)
Posted by: Peggy Rose | August 28, 2011 at 07:21 PM
Beautiful post, beautiful picture. I have a nearly identical photo (albeit a Scandinavian version of Ronan!) on my fridge of my son, at that very same age.
Where did they go??
What a tremendous loss we've all endured...and continue to endure.
Posted by: Donna L. | August 28, 2011 at 06:41 PM
What a handsome chap he is Cthy a picture is worth a thousand words that one talked a million..thanks to you and still counting.
Angus
Posted by: Angus Files | August 28, 2011 at 05:45 PM
oh my God!! If I came over as judgemental I apologise wholeheartedly. It was never my intention. After my experiences I was convinced I could never be.
Posted by: Clare | August 28, 2011 at 05:33 PM
Just have an autistic child and you can have wordlessness all week!
Posted by: Theodore Van Oosbree | August 28, 2011 at 05:25 PM
I have thought a lot on if I could go back and warn myself. What could I have said to myself that would have stopped me in my tracks to question vaccines?
I was warned.
That little nurse that was trying to get her degree to become a registered nurse sat right in there in one of my college classes and spoke up to the microbiolgy professor and told all of us what was happening out there in the real world.
And that time that there was a big old scare about swine flu. I asked my mother to go with me to get one too, and she said she had had her flu shot years ago and that was the end of her good health.
And then weeks later they were withdrawing the swine flu vaccine becaue it was doing great harm.
Or after my duaghter had Kawasakis and my husband said he had heard that it could be the vaccines - I thought back iand it was almost, somewhere in the last couple of months - too far ago I said.
Nope, I guess the only way to make a rebel is too burn the house down around them.
Ronan sure was a pretty baby!
Posted by: Benedetta | August 28, 2011 at 04:00 PM
Clare, your comment comes off as judgemental. Not sure if it is just sincere and from the heart, or trying to make a point. The feeling of having been cheated of something is certainly not "totally selfish"; it is also worry on behalf of the child. Yes, acceptance is very important -- I certainly understand and appreciate that. It is important both in terms of how we love and enjoy and help our children, and in relation to how we respond to life events in general -- there are some things we have to make peace with, that we just can't change. Life really throws us some zingers. But I think one thing that is hard about vaccine injuries like Cathy describes is that she is not only mourning the child she imagined, but the child she knew, whose personality shines through in the photo above.
In my case, our son showed signs of autism from infancy. He would sit in his little infant chair and stare at his hands like someone on LSD. We used to call him the "mad scientist", partly because even as a baby he had lots of long curly hair and he hated hair cuts. He began receiving shots containing mercury on the day he was born, and then at 2 months, 4 months, etc. The more I have read the more likely I think that his autism was triggered by vaccines. But I can't imagine how different the experience would be to have a typically developing toddler who dramatically changed and regressed after a round of vaccines. We had to accustom ourselves to his not being as we had imagined, but we never knew my son without autism. I can't imagine how many more feelings I would have if he had changed from a typically developing path, from a sociable talkative toddler to a child without language etc. Yes, even then we would have to deal with our feelings and accept what is, but part of dealing with those feelings is expressing them, as Cathy has so eloquently here. And it is clear that she loves her son very much just as he is now today.
Posted by: Twyla | August 28, 2011 at 02:55 PM
This is a beautiful post, and such a beautiful, adorable photo!
Posted by: Twyla | August 28, 2011 at 02:36 PM
"It's just hard sometimes when you see others planning for their kids futures when just an independent life for my son would be amazing!."
Yes, indeed.
Posted by: John Stone | August 28, 2011 at 11:06 AM
From a reputable source I promise! child had cerebral palsy not autism but yes it's true. She published the article in a Sunday newspaper in UK and she told social services if they didn't remove the child she would end up harming the child or herself.
She was totally frank about it. I must admit that the pangs of "if my son was not autistic I wonder what he would be?" definitely surface but as I have not had one night of respite in nearly 9 years bears testament that I have truly accepted what he is and he is the sun in my life. It's just hard sometimes when you see others planning for their kids futures when just an independent life for my son would be amazing!.
Posted by: Clare | August 28, 2011 at 10:28 AM
Clare
I have to admit I find that hard to believe. I can imagine a parent with few alternatives having to give up through sheer mental and physical exhaustion. But it is the stero-type of parents who are trying to help their autistic children that somehow they don't accept them - in general I don't believe that's true: it is just people trying to do their best for their children and to give them the best lives they can.
John
Posted by: John Stone | August 28, 2011 at 10:00 AM
I read about a parent once who finally gave up her disabled child for adoption. No longer able to cope with the endless screaming and self harming, day and night she made her choice. As she watched the foster carer with her daughter she saw the acceptance she could never have shining on the carer's face. She asked her how she had achieved this state and the reply was "because I see her as she is not as what she could have been". How hard is it for a parent to let go of the hopes and dreams we have for our children? All those "I wonder whats" and "I bet he/she will be's" that disappeared before our eyes. Almost impossible it seems.The feeling I have been cheated of something is totally selfish and not all relevant to my son ....and yet I still torture myself with them
Posted by: Clare | August 28, 2011 at 09:34 AM