It’s true that many parents like me have trouble finding adequate services and assistance for our children. Describing the troubles parents encounter as difficult is an understatement. Avoiding delays isn’t always successful so I try to learn the ropes as quickly as I can from those that have come before me. Thankfully I’ve have gotten some advice which either shortened Ronan’s wait time for services or tipped me off at the right moment to avoid an unnecessary detour to receive other assistance. Since that advice was so helpful, my mission to learn and do for Ronan includes paying it forward. Sharing that useful information with another family is critical for me because I’ve always said I hope that no one else ever has to go through the suffering Ronan has had to endure.  Knowing that I gave another family the chance to slay their own seven-headed dragon as I ultimately destroy mine is a gift.   

Telling Ronan’s story is part of the new M.O.M. I prefer to be. It offers a peek into the life of a vaccine injured child when other sources say vaccine injured children simply cannot exist.  Ronan is real. So is his injury. Sadly, the vaccine injury didn’t have to happen. The medical choices I made for Ronan could have been different and even avoided. If I’d only known what I try to share with others now, what a different life Ronan and I would be living! 

When I started to write a few years ago, I realized I could put on paper what was screaming at me in my head.  It started with, Why me? Why my son? Those questions were and still are the biggest questions I have. As Ronan grew, and when his medical specialists outnumbered the fingers on my hands, the more I was yelling at myself.  While questioning how this all happened to him, and to understand Ronan’s situation better, I began to seek out other people who had special needs children. I asked about their child’s experience and onset of delays. I wanted to know how they discovered it and did it have a name – was it Kanner’s autism? Was it Asperger’s? Was it that vaccine injury information I just discovered? I compared how those children with Classic autism had a few similar traits as Ronan but then, not so much. I contacted families with vaccine injured children who were willing to share their story with me, too. How the similarities grew!

While looking for specific answers for Ronan’s increasing medical problems I contacted his medical providers hoping they’d be able to offer more information outside of the exam room. I wrote a lot and read even more. I later discovered that Mito disease terminology and thought, Bingo!  While researching mitochondrial issues, I actually thought I had more answers about Ronan than questions.

Over time, I turned all of my wondering and learning into stories fit to print. Writing allows me to lose the fear that’s building inside me. Before I blow a gasket or cry my eyes out, I find some quiet time to write so I can get my negative thoughts out. I’m no different than the next parent--typical or special needs parent--because we all have bad days. Our children do also. Those are the tear your soul into shreds kind of days.  I find I crave writing on those days.  I won’t always write about the hardships I force myself to push through since it’s easier to retell the good stories. Sharing those parts of life help quell my own anxiety which brings back my mostly upbeat attitude.

Refreshing reminders of Ronan’s development are what I desire to share—the fact that he did start to walk when others didn’t think it possible; the fact that he can read when others wouldn’t give him the chance; the fact that he can say a few words when others said more speech and language therapy probably wouldn’t make a difference. 

As much as I’d wish for purely easy, forever happy and always hopeful days, it’s not all butterflies and rainbows floating across my front lawn.  Ronan works incredibly hard to gain bits and pieces of his missing and delayed skills. It’s a strain on him physically, mentally and emotionally. I feel those same physical, mental and emotional burdens as well as financial and spiritual struggles.  It all comes down to how I resolve to keep one foot in front of the other in how I survive every day. As I work toward understanding and then balancing all of Ronan and all of me, I feel like I’ve paved a better path on my mission of truth and hope.

If you lined me up with a bunch of other parents, I’m sure we’d all be able to share a few stories about how unsuccessful we’ve been with our kids and their needs. We’d all have really enjoyable memories of the good times while also being frustrated and cranky a time or two during the bad. We’ve all dealt with some sort of struggle that made us stronger though. Through it all, we’ve all walked along side one or all of our children wanting to be their brightest beacon of light. During the times we’ve faltered, some parents might handle their stress better than others. Me? I’m a work in progress. Among those parents lined up you’d be able to pick me out of the crowd--I’m the one with kids who have mix-matched socks and unbrushed hair who scarf down the store-bought snack while saying they are still hungry. I’m probably clinging to the end of the proverbial rope saying that the only way left to go is up so hang on tight, kids! 

I’d much rather be the new and improved M.O.M.  Transforming from mean and old to positive and directed gives me the energy to get up and celebrate Ronan’s growth while standing at the ready to conquer anything that attempts to knock me or Ronan down. I have dreams for all of my kids—to be successful in whatever path they chose while having compassion for those less fortunate. That dream includes Ronan’s successes, too.  My kids are grateful to feel the renewed spirit I have once I get a chance to stick to my mission instead of watching me teeter off to the edge when I’m stressed.

Mom on a Mission. It’s a lot of work. It makes going forward toward Ronan’s hopeful recovery more meaningful. I’ve picked up new ideas, meet new friends and discovered new coping skills for myself along the way. I know we’ll get to a place of recovery, Ronan and I. I’ll still arrive at least five minutes late even though I was ready an hour beforehand. I’ll still have children with un-matched socks (and shoes on a really bad day) but we’ll make it to wherever we need to go. My kids probably think I’m nuts as I run here, there and everywhere to make life happen. I know they sense when I’m about to breakdown so I try desperately to shield them from the special needs emotional Mommy meltdown I sometimes have. They want to kick Mean Old Mom to the curb when that side of me emerges. In their young minds they think I’m the Cat’s Meow who has nothing but love and hope for each of them. They tell me they think I will be cool forever. I really hope so.

Being physically, emotionally and spiritually strong to help my typical children while walking Ronan’s path with his needs is the biggest challenge I face as a Mom. Taking care of myself and my husband while we are outnumbered by children, stressors and future what ifs adds to my life’s purpose. Despite my own heartache and the unfortunate lessons learned I have the chance to make life better. I know one day I’ll be able to say mission accomplished because in all of this, I’m determined to give Ronan the ability to regain his true potential.

Cathy Jameson is a Contributing Editor for Age of Autism.