Child Warrior: Ronan

Happy birthday to Child Warrior Ronan, so named for Jenny McCarthy's book, Mother Warriors.  Another gorgeous smile. Ronan's Mom is Cathy Jameson. She wrote this Warrior Mom piece for us. Enjoy!

Don’t Stop Believing

By Cathy Jameson

I was in a particularly bad mood when I went out grocery shopping one day.  I needed some space from my house, my kids and my own thoughts. 

Heading to the grocery store was not the ‘retail therapy’ I really wanted to do, but I was thankful to get a bit of a break.  The shopping was uneventful for the most part but I did find two products that I can experiment with for Ronan’s dietary needs. 

I was still walking around with a little black rain cloud over my head when I headed to my van with a cart full of food.  I glanced at the few cars surrounding mine and shook my head. So many people advertise on their bumpers causes they are fighting:  the pink ribbon for breast cancer, the purple cystic fibrosis ribbon, the yellow ribbon for the U.S. troops overseas and of course the puzzle ribbon like mine that says, “Think Autism. Think Cure.”  I muttered to myself knowing that no research group or medical grant money were in the parking lot, “Find a cure? Find a CLUE, bozos.”  Why is it that only parents of vaccine-injured children have the proof that vaccines aren’t so safe?

On the way home from my outing I knew I needed to shake the negativity out of my overtired brain before I got back to my family.  I decided to roll down all the windows, drive with the wind in my hair like I was a teenager again, and had the radio blaring at one of the highest settings. I found some cool 80s music to jam to, always a plus for me, and belted out some good tunes at top speed.  I didn’t expect to start crying to one of my favorite Journey songs, but I did.  The lyrics and title couldn’t be more appropriate for who I am and who I’ve become through the life of my son.  Don’t Stop Believing hit my heart like a ton of bricks.   

I’ve never been into the lyrics of songs ever. I know a chorus pretty darn well but the actual words or messages escape me.  This song though, when I really stopped to listen to what I was hearing, made an impact.  I missed a lot of ground-breaking news in the autism-vaccine world when I had a baby this spring. I feel like I’m still catching up on the scientific research, understanding why there was flawed CDC information as well as studying the newly exposed mitochondrial links.  I think the hardest news to watch was from the Green Our Vaccines Rally in early June since I had wanted to be one of those thousands of parents in attendance. 

The song on my radio brought me back to a reality that I’m still struggling to grip.  Hearing the words made me proud of the BioMom club I belong too. This is the one that started my writing ‘career’ back at the Rescue Post a year ago. This is the club Jenny McCarthy talks about at the rally—how we thank God it exists, but we don’t want any more members.  This is the club that keeps me going every single day of my son’s life! 

With the wind blowing on my face, my hair flowing in the hot breeze, I sang,
 
“….Strangers waiting, up and down the boulevard
Their shadows searching in the night
Streetlight people, living just to find emotion
Hiding somewhere in the night….”

Pictures from the news reports of the Rally came rushing to my mind.  I saw parents who looked just like me. I saw kids who reminded me of Ronan. I saw swarms of former strangers banding together.  They want to tell America just what was going on with our ridiculous vaccine schedule.  I so wanted to be there with that group of people who became one loud and necessary voice on a very hot day in D.C. 

I thought, “My gosh!  There were a bunch of strangers, waiting, at the Mall in Washington, D.C.  They are searching for something, anything, to make their child’s misfortunes make sense.  They are living through unbelievable emotions that they can’t control.  Holy cow, my music is speaking to me!”

The next verse was another heartache too—I’m one of those Moms waiting for the magic bullet cure. I’m hoping my degree in Googology will lead to Ronan’s healing, to a recovery story.  I’m a Mom who sees a gain and thinks I am winning and beating this thing called autism instead of fighting over and over again to make progress:

“Some will win, some will lose,
Some were born to sing the blues,
Oh, the movie never ends,
It goes on, and on and on….”

I was about five minutes from home when the song ended. I’d turned the radio up as loud as it could go as Steve Perry and I finished the last few lines to the chorus, “Don’t stop believing….don’t stop believing….don’t stop believing!”  That’s it!  It’s us Moms and Dads that know something horrible happened to our children. It’s us Moms and Dads who are fighting the authorities that are supposed to be helping us. It’s us Moms and Dads that will not stop believing in our instinct, our cause and our children.

When I finally got home from the grocery store, I tiptoed in the house. It was the middle of naptime and I wanted my sleeping babies to enjoy their naps. I felt so much better about jumping back into my responsibilities and rallied myself for whatever the afternoon brought me. My husband was playing computer games with the big kids while the ‘little ones’ slumbered. We still put Ronan in the ‘little ones’ category as he typically requires a short nap even though his younger brother has long outgrown them.  I thought for sure Ronan would be up though and bounding around looking for some weekend outdoor fun.

Instead of finding an energetic child, Steve said Ronan was fast asleep. I couldn’t believe it—my endless eager enigma was still sleeping, passed out cold and wrapped up in his Thomas the Tank Engine blankies.  Oh, my sweet child, I will save my energy and my believing for when you awake.  I crept into Ronan’s room and lay down next to him on his bed. I stared at my son’s face, so innocent and serene.  I marveled at his beautiful skin and gently stroked his cheek because I just had to touch him, to know that he was safe and sound.  Ronan stirred just a bit, opened his sleepy eyes and then went back to sleep.

I am just like any other BioMom in the world. We want so badly to make this all go away.  Until we can clear out the last invading metal, virus or pathogen du jour, we will never stop believing that we can capture our once-typical baby.  We will never stop believing that this autism is just a temporary speed bump to get over.  We are going to persevere through the perseverations, the stimming, the diet modifications, the supplement dosages, the poop analyzing and middle of the night laugh-a-thons.  Don’t stop believing, don’t ever stop believing! 

People tell me all the time that they don’t know how I do it: raise five kids including a vaccine-injured child. They don’t see all the sadness or the intense pain I go through in thinking of what could have been. They don’t know that I can and do sometime still kick myself saying, “If I’d only known more…”  Thankfully, these people do see me fight for Ronan. They do see me sheepishly smile after an unfortunate tantrum out in public. They do see me rally my own strength to forge through today to get to a hopeful tomorrow. Thanks to these pieces of hope, I will never stop believing in Ronan.

Cathy Jameson is a fan of the 80s one-hit wonders who loves dancing with her children while getting down with her bad self.  Ronan loves to see Mommy get all kinds of silly to her songs and giggles when certain ones are played. The Jamesons pray for Ronan’s recovery nightly because they do believe things will get better.

 

Comments

[Danielle Manglis]

What a great story. You are a great Mom with an amazing son.

[Jennifer Santee Bitzkie]

Merry Christmas, Cat! Your piece was so beautiful and real. Your heart must be twice as big for the words, emotions, and love that pours from it are blessed. Ronan is such a fortunate boy to have received you and Steve as his parents! I think of you often and admire you more than you will know. How appropriate that "Journey" is the name of the group for that is your life with Ronan...may you never stop believing in all avenues of your life.

[Julia]

Hi Cat,

Happy Birthday, Ronan!!!! I'm so glad to have had the honor of "linking" up with you and your family via our emails. Always know you will never walk alone again in your efforts to get Ronan's educational needs met! Enjoy your time with family over the holidays and r-e-l-a-x -- you deserve it! Thanks for sharing such a beautiful story of your journey thus far and always remember: "In the confrontation between the stream and the rock, the stream always wins, not through strength but by perseverance."

[Bridget N.]

Excellent column, Cat! I know how hard you have been working for and continue to work for Ronan, and I couldn't be more proud or love you more. Keep it up - don't ever stop believeing!

And happy belated birthday to Ronan (though I did sing quite loudly to him yesterday!)

[Patti Nolan]

Hi Steve & Cathy,

I just finished reading your article and was compelled to comment. My younger sister Gena has an autistic child. He turned 8 in June. It's definetally an emotional roller coaster. He is beautiful, just as you describe Ronan. His accomplishments are small to some, and huge to us. Keep up your inspirational articles!! Your always in my thoughts.

Love, Patti Nolan

[Cathy Jameson]

Kim Spencer,

The BioMom story was my first submission on Rescue Post. I just noticed about a month ago you need a password to access the archives there. I can email you the original if you'd like. Send Kim Stagliano your addy to send it to me so we can chat.

Cathy Jameson

[Ben's Dad]

Happy Birthday and a special prayer for Ronan!

Nice read – thanks. It great to hear the parent recovery stories too! - although not only recovered, I think many autism parents come through as stronger people who can not only work on a problem as difficult as autism and see success, they can work on anything and see success.

Of the few things Ben asks for more of, songs from his Mom are pretty high on the list too. If there is a compliment to the list of autism symptoms, perhaps music is on the list of things that still work.

[kim spencer]

Thanks Cathy, for a great article. So glad Ronan's birthday party was great!

What's this BioMom link you need a password for? I'm feeling left out!

[Truman A. Moore]

Cathy,
Glad you can let your hair down and listen to the music occasionally. Thanks for this and all you do for other mothers and fathers...and kids!
TAM

[Pattie]

Happy Birthday!

[Avery's mom]

I've also found myself hearing the lyrics to songs in a new way. I'm more of a punk rocker myself, here's my contribution:
http://www.youtube.com/watch?v=_AX5FNJyPPg

And another, "Stand Tall"
http://www.youtube.com/watch?v=pAoao9FkHwE

Wouldn't it be great to talk some of these bands into doing a fundraising concert, something like Farm Aid was?

-Sierra

-Sierra

[Stephanie]

HI Cathy,
Just wanted to say Happy Birthday to Ronan.
Also, have a wonderful Christmas together.
I always keep you in my prayers.
Stephanie Earnhardt

[Bobby B]

Happy Birthday Ronan - Cat and Steve, you are a truly a gods gift to your children as they are to you, God bless and have a very Merry Christmas, Love Uncle Bobby !

[Alison Davis]

Dear Cathy,
You WERE at the Rally! I carried your incredible letters and hand delivered them to our senators the next day...thank you for your powerful words of your son's story. You were heard. Ronan is as beautiful as you write about him. I also won't stop believing- there are three wonderful boys in my home and heart who help me keep my faith. You and other moms and dads help me, too. We're in the thick of intense biomed now. Recovery is not only possible, it's real.

[Joe]

http://www.youtube.com/watch?v=ip1zsUIosoA

Happy B-Day Ronan!

[Kristin]

Happy Birthday to Ronan! I find myself crying to songs too these days. But, hey, we need to get it out! It's funny how now you hear the words that you have been singing for years and these songs take on a whole new meaning. Keep on fighting and "Don't Stop Believing!!"

[Amy in MA ;)]

Happy Birthday, Ronan! Very eloquent, Cat!

[Cathy Jameson]

Thank you for the wonderful comments. Ronan has "such potential" and the drive to do many things. We hear this a lot by those who get to work closely with him/us. The eyes do capture the 'who Ronan is supposed to be or could be' and in a lot of other children. Funny enough, when Ronan starts to get sick or run down, his eyes get very droopy, one has exotropia pretty badly, and we start to lose him to a bit of regression. At least we know the warning signs and can prepare ourselves for a hard couple of days.

We enjoyed a quiet sixth birthday celebration today with our own little family and a very good friend (thanks, Charity!). We're winding down the day's festivities and have much to be thankful for. I never knew how much one child could give strength, hope and a reason to believe. As much as being a Warrior Mom is the hardest thing I've ever had to do, it's an honor to be surrounded by such a community that cheers for Ronan, me and thousands of others seeking hope.

Cathy Jameson

[Michelle]

Happy birthday Ronan, you have the most beautiful smile!

[Gatogorra]

Thank you for sharing your thoughts and a bit of your son's story.

I'm always struck dumb whenever I see pictures of injured kids like my own. In the recovering children, it's so easy to see who they could have been (and will be if we parents have anything to say about it). You chose this wonderful, unique name for your boy and clearly this represented all your wishes for him to grow into that name, to be his own person. But then along came a spider...And now you have to fight to get him back.

No, most people don't see the pathos that goes into this journey and many would look away if they caught a glimpse of it, thinking they can outrun the cloud of tragedy if they just avert their eyes.

They also don't understand how much hope and how much recovery is possible, can't share in the evolution of wisdom, understanding, the sense of universal struggle that makes all the "small stuff" in life (that can be so much a source of overblown and unnecessary pain for many) fall away. They are, in many ways, disabled. What these eye-averters also don't know is that, because we fight, they may only have to read about this debacle in a book one day instead of having to go through it themselves.

Your son is gorgeous and glowing and I don't see how anyone could wonder that he was worth fighting for.

[Lin]

Happy birthday dear, sweet, Ronan! You have been blessed with a warrior mom who is nothing short of an angel. I am proud to call her my friend! A blessed and happy day to the both of you!

Lin

[Gayle]

What an adorable little boy! Happy birthday, Ronan.

It's funny. Sometimes I think that what "genetically" links our children is that they are the most beautiful of all. We really do have some gorgeous kids amongst us.

Ronan is lucky to have such a strong advocate in his mother, and so are his siblings.

[Beth Sutton]

Happy Birthday Ronan! Keep storming the gates of heaven Cathy....

[Angela Warner]

Cathy, You are an amazing writer! Everything you've written for AoA has been wonderful, but I think this takes the cake as your all time best.

There is something magical about reaching out to stroke our children's faces and touch their hair when they are sleeping. You can have had the toughest day ever with your child, and those moments just wipe it all away. It's just a yummy feeling :)

We can't stop believing. If we lose hope what do we have left?

Happy Birthday Ronan!!! You are a Warrior Child! May this year be your best ever!!!

[Gabby DeVelbiss]

Happy Birthday to a wonderful child born from such an amazing mom!!!

Love, Gabby. :0)http://stemcellforautism.blogspot.com/

"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport

[Mimi]

Happy Birthday, Ronan. I've been thinking of you all day today. Hope you've had a good day and enjoyed all your birthday surprises.

[Jen]

WOW. Amazing MOM. My sister in law works with Austistic children and I know she doesn't stop believing either.

[kelly]

You are one amazing and strong woman. An inspiration. HAPPY BIRTHDAY RONAN. Don't stop believin'!!!

[michele i.]

You did a great job with this story Cathy. Your words are beautiful and touch my heart. I understand completely.
my best to you and happy birthday to your beautiful boy~

[Gayatri]

Dear Cathy, it is always a pleasure to read about your life. It is familiar, all those emotions. Thanks for putting them down so eloquently.

Happy Birthday Ronan, I hope this year brings many wonderful gains for you. You have a mom who does a fantastic job of keeping the spirit alive.

[Holly M.]

What a beautiful boy and a beautiful story.