By Cathy Jameson
Last year for the Fourth of July weekend I wrote a piece called Freedom. I’ve been reflecting on something different because this year I’ve been running around a lot more. In my haste I’m trying to find something, catch up with something else or simply trying to move. When I can get the momentum to go forward I sometimes stumble on my own two feet. That happens as I run toward something in a full-on sprint. It happens when I’m running like heck away from something, too.
Like any parent raising a child on the spectrum, I’ve had an eventful year that’s pulled me in several directions—from managing Ronan’s medical and educational needs to keeping him, as well as my whole family fed, bathed, clothed, entertained and safe. When I can slow down from doing everything for everybody else I try to find some freedom to do my own thing. It would be nice to eat a meal by myself without little people asking for a bite of this or a sip of that. What I wouldn’t give to get one chore done from start to finish with no interruption! I might actually have evenly painted toe nails and be able to finish an email in one sitting instead of three. No interruptions would be ideal, but that isn’t life as I know it.
I’m constantly pulled here or there to do this or fix that. I don’t have the freedom others might have because of the massive responsibilities that stem from Ronan’s needs. My regular household chores and the needs of my typical kids get added to my overflowing To Do list and I find myself again running all over the place. I can’t say I appreciate all the moments that fill my days, but I am growing accustom to the many balancing acts I have to perform to get through them. The small amount of “me” time I do catch alone (like when I hide in my walk-in closet to a return phone call) is a great luxury. It sure beats the crazy moments in my house that you would have to see to believe—while one child accidentally pees on the floor another is spilling the salt shaker on the table just because. As I chase the pee pee child into the bathroom, the smoke detector goes off because I’ve forgotten about the gluten-free waffles that have toasted four minutes too long. Oh, yes, it happens. And, in my life, that sort of stuff happens all at once.
I’ve gotten used to running around, but it doesn’t make things easier for when the next moment of crazy creeps up. I’d rather enjoy less of the stress I run into on a daily basis. Who wouldn’t? I’ve always thought life would get a little easier the longer I’ve had a chance to live it. As anything in life though, what I predict won’t happen, does; and, what I wish I could happen remains a far-reaching target. Take some new protocols and therapies I’ve wanted to try with Ronan. We’ve done the gamut of “usual” stuff (rounds of chelation, dabbled in homeopathy, stocked a cabinet full of supplements). While everything sounds so promising after hours of researching and asking others for advice, we inevitably run into a snag. When it comes time to move beyond a dead-end treatment to start a new one, there always seems to be a hiccup in my plans. It’s an uphill climb to get something new started or paid for or covered by insurance. I end up losing years of life as I race to find just the right provider to support Ronan’s treatment while also hoping a stash of cash to pay for what I think will be Ronan’s cure can magically appear.
I work tirelessly to find and keep consistent help because managing my son’s vaccine recovery is more than a full-time job. Some days we have stellar helpers who strive to see Ronan cross the finish line toward recovery as well. Other people act more like road blocks and look at me quizzically answering, “Do what now?” to what I thought was a well thought out question. I feel ten years more tired than my chronological age (and have the matching wiry while sporting the baggy eyes of an old lady), but I wan’t be stopped by someone else’s ignorance, excessive dollar signs or lack of availability. When it comes to helping my son, I firmly believe in “Where there’s a will, there’s a way.” I just wish I didn’t feel like I was constantly walking uphill both ways to get started in the right direction.
What’s a frazzled over-tired, understaffed and grossly underpaid parent to do with all of this? Well, in all honesty, there are moments that I just run away. I hole myself up in a room unpopulated by my little people. I extend my internet searches and social networking longer than necessary. When I find a link to the outside world with cyber conversations full of high fives and ‘you can do it’ messages, I linger longer than I should. Why leave that positive place when those on the other side of my computer screen clearly understand what I’m going through? I may never in my life lay eyes on the person who just sent me that timely electronic hug, but I appreciate their sincerity as I quietly slip out and run away from my reality. Once my household discovers I’ve taken a mental step away from their madness though, I’m doomed to running toward a disaster I could have helped avoid. I will once again though, pick up the pieces and move on.
It’s a lot of hard work to do this running around I do. It hasn’t given me the freedom to think clearly, to breathe easier or to do everything better. But, it has given me an unstoppable inner strength to continue to stand up for Ronan. I may not be standing up as straight as I used do years ago as I pull my back out while having to lift Ronan up during a meltdown. But, I do get up. I get back on my feet still hoping to go forward. Ronan, as well as my other children, have the right to better health, to an appropriate education and most importantly, to be treated with dignity. As their parent I will run from here to the ends of Earth because it is for them that I inch forward picking myself up again and again.
I want to stop running in place with the doctors who don’t listen, with the teachers who can’t educate and with the politicians who won’t lead. I want to say enough is enough because they’ve been leaving the rest of us behind used, abused and stranded because of their greed for far too long. Our children have been gypped by the unjust masked as professionals with unethical agendas. It’s a daily challenge of mine to try to stop some of the madness that my life. Ronan’s life and chance to heal is worth it. Most days I can still see the target of Ronan’s recovery in my heart and in my mind. Even though it isn’t as close as could be, I will still keep running toward it.
May today as we celebrate the freedom of another day to live life, be full of hope and healing. So we can one day stop running around and instead be protected, respected and given dignity to live, this is my wish for you. May those of us who never feel like we can slow down be given a chance to stop and breathe. I want to breathe in and out and feel that sense of freedom won for me so many years ago. I’ve got a feeling that fight for freedom is similar to the type of fight I do each and every day for my children.
Cathy Jameson is a Contributing Editor of Age of Autism.