I have pictures of my kids on the refrigerator like any parent does. I have magnets for the local pizza joint, a couple of letters from a plastic alphabet that haven’t been lost or thrown out and a few magnetic words that have survived several moves and small, sticky hands. Magnetic words used to define my love for any piece of literature I could get my hands on. This past weekend, while cleaning out my bathroom, I found a lone magnetic word and slapped it on the fridge. It happened to be next to another word hanging over Ronan’s picture. The phrase “silent frog” stared with steely eyes. My son who struggles is in fact very quiet. Many days, he’s almost too quiet.
I received a comment on my last article on AoA that brought back a lot of self-inflicted grief. Ronan’s name, one that we didn’t look for but just landed in our laps six years ago, means “Little Seal” in Scottish Gaelic. It was a perfect tribute to my husband and to his family’s heritage. From the comments, Gatagorra says, “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.” The fight to bring Ronan back is one that hasn’t seemed to let up. It’s one we didn’t know we were fighting initially and now, it seems like it’s going to take longer since the gains have again reached an unmoving plateau.
For those that know my family intimately, you’ll catch on to the frog stuff quickly. My husband is a Frogman. Even separated from the Teams, he’s still got that stealth know-how and MacGyver intellect. Steve is a former Navy SEAL who has collected over the years tons of frog and seal memorabilia from friends and family—a reminder of who he was in the military. When we started having a family, baby toys, onesies and picture frames included some frog or seal (for Sammy the SEAL). Of course we had dreams of our first-born son to somehow follow in his father’s footsteps. Maybe we would cheer for Ronan on the soccer field or as he raced down a track. Maybe Ronan would be able to scale those tall obstacle course walls with a muddy face and steel-toed boots. Maybe Ronan would be banging nails on a miniature wood working bench or even assist Daddy on his motorcycle rebuilds. The farther away we get from the initial vaccine-injury symptoms though, the closer we are to realizing that this life Ronan is living now may be for a lot longer than we expected. It doesn’t mimic Steve’s successes as we’d hoped.
I feel that I’ve faded in and out of the autism community. For years I refused to even link the word autism and what Ronan was going through. I never, and I mean never said that Ronan was autistic. To describe him, I’d say my son was vaccine-injured or had autistic-like symptoms. It killed me to even think of using that label on my child. One well-known DAN! doctor told us so matter-of-factly that, “Ronan was so NOT autistic…look at the way he communicates!” Yea! You can’t fool a DAN! Can you? We drove hours to see her and got such a great report while in the office. A little black rain cloud found us later though. The good ol’ doc went ahead and used a diagnostic code in the medical file that labeled Ronan autistic. I cried when I saw it as I was filing papers weeks later. Who do you trust?
It’s been years since Ronan received his childhood vaccines. These vaccines were supposed to help him get through childhood. They were supposed to give him immunity and to be strong while working on milestones and growing up. Instead, coupled with a recently discovered mitochondrial disease, Ronan’s body is far from getting through childhood. He’s far from having strength to get over certain illness, he’s far from growing up and he’s got no immunity to several of the diseases his vaccines were supposed to give him. Ronan may have his good days, but there’s far more bad days that leave me in shambles.
The once happy and beginning-to-chatter child I played with still exists. Ronan’s skills are more like my two-year olds’ skills though. Even my 8-month old has more babbling than Ronan some days. I’d much rather Ronan be able to hang with his typical age mates instead of continuously trying to get the star-shaped puzzle piece into the square-shaped hole. I’d rather see Ronan playing with his 4-year old brother than walk past him as if he wasn’t there. I’d rather Ronan use his words he used to have than struggle with sign language and fingers that have no fine motor control. I’d rather make this all go away but there is no way to turn the clocks back.
Instead, I continue to read. Some days I learn more and hope more. Other days, I’m down in the dumps again asking Why? Why? Why? Jenny’s latest book, “Warrior Mothers” was one of the hardest books to read. It took me weeks to get through it for Ronan’s story could have been written on many a page. I cried between several chapters always hoping something good will come of our generation of kids being taken advantage of. I’m in the middle of Dr. Jepson’s book “Changing the Course of Autism” which is another heavy read for me. There’s so many more questions I have about what happened and always with a follow-up question of why.
I know I will wipe more tears before returning yet another novel or magazine article to the shelves. I will continue to ask questions. I will reread journals that may have told me more if I’d read it sooner. I will ask my fellow Warrior Moms questions hoping they have conquered and climbed out of the plateau of Ronan’s lack of development. I will be the strength for others while I continue to find support for myself.
Steve accepts more than I do when it comes to Ronan. He gives Ronan the benefit of the doubt when I get my Mommy microscope to overanalyze something. Steve grounds me and helps me celebrate the baby steps since they truly are huge, gigantic leaps in Ronan’s world. Last week, while the kids were playing in the backyard, Steve took some fallen limbs and tossed them over our fence. Ronan was on the other side of the yard and must have watched Steve. Ronan walked over to a lone stick and a pinecone. He picked them up and threw them over the fence just like Daddy did. It took Ronan a good 2 or 3 tries to reach up and get the stuff over the fence, but he did it. He did it like his Daddy. He did it because he could.
This week, Ronan is going through a surge of cognitive gains. He came up to me and said something. He used no words but grunted. He grunted clearly, with great eye contact, with determination and then offered a sign language request. He signed “help me” and help him I did! I got up from where I was playing with the baby and held my son’s hand. He led me to the tv and signed, “Mommy, help me. Movie. Please. Cheese.” Cheese? Ohhhh, Ronan wants to hear the “Silly Pizza” song from Signing Time!! Quickly, while in the moment, his request is fulfilled and we danced silly dances in the living room. He just loves the sign for cheese! Thank God for the Signing Time team—Ronan taught himself sign language and will use them appropriately.
Another moment to warm my heart happened late one afternoon when we were snowed in. My typical kids had had enough of each other on this cold day. The movies weren’t entertaining anymore. Snacks weren’t tasty and it was time for the snow to melt so we could go back to a normal schedule. Just when they were reaching their boiling point, Ronan emerges from the playroom with a stack of blocks. He dumped them on the floor close to his siblings and plopped himself down. Ronan can stack a mean stack of blocks, any texture or size but doesn’t love to knock them down. It’s part of a sensory thing I think so he builds, runs away and expects someone else to do his dirty work of knocking down the tower. Ronan has learned to stick out his pointer finger for me to start the counting I do before I knock down his tower. I watched Ronan start this amazing parallel play situation and quietly cheered for him. All of a sudden, Ronan turned around, stuck that pointer finger out to initiate my count, “Ready….one, two, three, four…..five….” and HE knocked down the tower! Ronan squealed with delight and immediately rebuilt his tower. I stood in awe and prayed he could do this again. He did, three more times.
Ronan is quiet. Ronan is my hope. He is my reality and my dream. He makes me laugh and cry all in the same instant. He does what he can at his pace which is hard for me since I wonder how much more he might be able to do. Ronan tries to be. He tries to talk. He tries to play. He tries to be heard despite his silence. He is happy nonetheless and he is loved. Ronan gives me strength and he is a hero.
Cathy Jameson continues to look for answers and reads everything she can. Simple tasks give her hope that one day, someday, Ronan will be recovered.