With the recent rulings of more test cases in the vaccine injury claims vaccine injury claims , my head is again spinning. It’s not like a perseverating spin that Ronan has started to do; it’s more like a spin followed up with some severe vomiting. Why is this “justice” and how did a generation of kids become so neglected?
My son turned seven on the first day of winter. By that birthday I had either expected him to be recovered completely or to be dead. Yes, dead. He has some super spectacular days of clear cognition and no physical health problem while completing tasks like a regular kid but then there are the ER-hospital runs and the high fevers that seem to bring him closer to death than to life. How can his lack of good health, caused by several proven factors, be dismissed just like the recent test cases? Couldn’t this all have been prevented?
His life has consumed every part of me: my thoughts, my actions and my own well-being. At one point last fall, I actually muttered to myself that I was bored. How could I, mother of five, home schooling two of them, worrying about a late-to-walk toddler while squashing the behavior of a three-year old, not to mention attending to Ronan’s many medical, behavioral and educational issues…be bored?! I hadn’t created a solid routine for our family and let one day slip into the next while hoping something or someone else would straighten us up. I was bored with the events I tried to plan for the kids. I was lazy and didn’t keep myself organized with explanation of benefits (EOBs) and claims yet-to-be submitted. I turned into a sourpuss dealing with little things that I let turn into big things. I was bored. I was frustrated. I was emotionally wrecked. I needed something better.
I tuned to my inner thinking and did some soul searching. We have a dynamic family, things constantly changing due to the sheer number of people living and breathing in my house. When Ronan went through some terrible illnesses a few weeks ago, right around the time we were due to see several specialists for some follow-up medical visits, no one felt the same urgency I had toward the cyclical viral something that keeps occurring. No one thought anything wrong with the constipation that continues to wreak horrid and disgusting diapering disasters. No one wanted to consider why there has been an increase in seizure activity. No one offered any hope. No one extended a supportive hand. No one thought to think outside the box for Ronan yet again.
They all wanted to push some kind of pharmaceutical though. Even the newest doctor, who had access to piles and piles of labs, evaluations, referrals and years worth of notes on Ronan’s life, wanted to push some drugs on Ronan. I had to remind her the drugs she was so ready to prescribe have contraindications to his mito disease. You should have seen her eyes pop out of her medical textbook filled head when I used that word contraindications.
Thank God I read. Thank God I listen to what other families share when they find a medical provider that listens. Thank God I have a voice now. I used to be so quiet and carefree. I used to be relaxed. Today though, with all that has not been done for Ronan and a whole slew of kids like him, I am no so relaxed. I am forced to step up and say what needs to be said. I don’t like it but I marvel at the fact that my personality has changed: now I question authority to protect my children. I can’t go backwards to fix what never should have happened. So I push to learn how to make the future brighter, better and more successful for us.
Two changes we made for Ronan after his seventh birthday have helped focus me, my efforts and Ronan’s progress. Of course, it’s all about Ronan that I do these things! We have new providers. They see more of what he can do and will do while teaching him how to achieve success. They have pushed him and what a difference it has made for him. Ronan’s speech is developing! His patience is growing! His skills across several categories are increasing! Ronan is on fire and I have no time to be bored while trying to keep up with his demanding schedule and these new-found developments. He doesn’t want to sit still in a quiet room by himself as much as before. He can read. He may not be able to speak clearly, but he can use his sign language to tell us what printed words say now! He interacts, labels objects and actions, follows a few more simple directs and he tells us what he wants. He tells us what he wants. He tells us what he wants!
I can celebrate the wonder that is Ronan. I dance a happy dance when he spontaneously shares something he hasn’t been able to communicate before. New skills and new emotions are part of life now. As hard and as painful as this very long experience has been, I have come to understand that some parts of raising Ronan would be difficult. When I look at our family as a whole and remember to be mother and wife to The Others , I still get completely overwhelmed. While I continue to dream of some kind of “perfect” for our lives and wonder where we will be down the road, I have to remind myself that the only constant we have are Ronan’s ever-changing needs that demand full attention.
One other part of life that I knew needed to be addressed was about me. I needed other Moms around me who are still chasing toddlers (who now walk!). I searched for other Moms who are home schooling older children, Moms who were also looking for a break from being super hero to many. I sought Moms who wanted ultimately to take care of the center of our family’s universe…ourselves. I found these Moms in a group to meet with, to talk to, to listen to and to pray with. It’s only once a week that we get together but it’s just the right amount of time for me after I finish taking care of everyone else to sit down for a few minutes to take care of me.
I find that I’m not so bored with my should-have-been and need-to-do lists. I want to tackle the household chores a little bit faster so I can catch up on the reading I’ve been meaning to do. I want to sit and be with the kids instead of plug them into a movie so I can vegetate and surf the net which has always been my escape. I want to continue to learn more about what makes Ronan’s phenomenal therapy with his new helpers work so nicely for him so we can bring that balance back to our home. I have a new-found drive to appreciate life a little bit more instead of settling for trudging through it.
I still want a do over. I still want all of this to be gone, erased, never-to-have existed. I yearn for the happy, little family I dreamed of when I got married in 2000. I still want behaved children instead of man-handling the one being carried out of a mall because it’s too sensory stimulating while strangers watch and judge. I still long for the days I can sleep through the night instead of being anxiety-ridden over EOBs, IEPs and those SOBs who don’t and won’t but could and should.
When Ronan had his last poop explosion during naptime that was detected a little too late and needed the heavy-duty cleaner to remove the mess, I didn’t cry. I didn’t yell expletives. I just cleaned it up. I grabbed the supplies, stripped down to shorts and a t-shirt and scrubbed the rug till my hands burned. I opened the windows and let the stench and my disappointment float out. My husband mentioned a few hours later how shocked he was that I didn’t freak out like I used to. I shrugged and said, “It needed to be cleaned up so I did just that. Swearing at the poop wasn’t going to make it go away by itself.”
During the last high fever and severe vomiting episode that has us with our ER bag at the ready, I stayed surprisingly calm. I monitored Ronan’s vitals with a sense of peace hoping we could manage his care in the comfort of our home. I didn’t think we’d be able to keep him stable much longer but after a prayer chain blast to family and friends, and watching the last bit of bile come up from Ronan’s gut, he fell into a deep sleep and was able to keep his fluids down. I started to get nervous as night fell thinking that the virus would come back so we got everyone to bed and kept the hospital bag by the door. Ronan slept between me and Steve that night, tucked in between two frightened parents at the thought of what could have been; but we slept…through the night, the three of us together.
The next day, Ronan woke up exhausted but was able to function and eat a bit. That night before was a turning point for me. I couldn’t believe I was able to stay calm and focused because previous incidents and illnesses bring out the worst in me—not only fear of a sickness but anger at the situation and how Ronan’s body is so fragile. I am overwhelmed by anger that has boiled inside me since we made a link to Ronan’s delays, tummy issues and more with that vaccine record so many years ago. What I feel on those very bad days are emotions that I have had to consciously turn around. I’m taking that anger and turning into perseverance. I’m taking that pain and turning it into a teachable moment for someone else. I’m taking that fear and turning it into a sense of pride that I didn’t give up or give in to people who failed us.
I have a long way to go to be more at peace and less of a crazed Mom. Since I can’t shove the bad days into a box and close the lid on them, I have to march forward and learn how to manage me with everything and everyone else. I will continue to learn as much as I can. I will continue to reach out and be reached for too.
Part of me died when Ronan stumble onto this path. My soul darkens with sadness when I run into people who refuse to help. But I’ve found a sanctuary the longer I hang around the autism community. I can’t believe the network of friends I have because of Ronan. A do over would whisk you all away too but it would be for so many right reasons. Until our children’s world stops spinning, until their pain is eased and until they are respected and offered the help they need, I know we—you, me, our children—are bonded for life, for healing and for hope.
Cathy Jameson wouldn’t wish a do over until after the Autism One conference though. She and Steve will be there to learn more about how to help Ronan, to meet friends, new and old, and to celebrate their ten-year anniversary! Cathy runs the Age of Autism FaceBook Page.