Someone told me once that some of my writing sounds like I’m angry. While that is sometimes true I will say that my writing includes real stories. Those stories are from my personal experiences and those of my vaccine-injured son. They are full of honesty, emotion and 100% mine. Everything I write is original, and for the most part, is received well by other parents and those who support families such as mine.
I received a message that one of the most emotionally charged posts I have written to date called “Forgive and Forget?” was referenced a few days ago. My piece was so full of emotion that what I felt while writing that piece stayed with me through the week. I wrote a follow-up post titled “Old Wounds and Righteous Indignation”, written as the result of me having to cope with several triggers and another layer of emotion. I couldn’t suppress the feelings from those triggers, so I shared my thoughts in the hopes that could move through them. It worked. People responded to both posts and told me they too went through similar experiences. They thanked me for being so honest in my writing and to keep at it. That kind of feedback is typical from other parents, and I truly appreciate it.
But, why share such intense posts? Why bother putting Ronan’s story out there for so many to read? Why make public such private parts of my family’s life? I expose the highs and lows of many aspects of raising Ronan. I question what some consider controversial topics. I continuously contemplate what topic to write about next as a steady flow of ideas flood my thoughts daily. Since Ronan’s needs encompass much of my day I always consider writing about him. When I do write about Ronan it is always with love and devotion. So, why so some people question what I’ve shared as the honest truth?
Maybe because I’m just a parent. Maybe because I’m emotionally invested. But there’s a reason for that: it’s because I’m a parent.
I’m a parent whose emotion brought me strength I needed to piece together my child’s life. As it crumbled in front of me, I first found, and then drew on my own strength. Ronan’s life started to crumble in front of others too, but they didn’t see the need to react. I wouldn’t accept it when they surrendered their efforts and allowed Ronan to continue to flounder. When Ronan needed help the most I was offered nothing useful or hopeful. Instead I got answers like, “Let’s just wait and see,” and, “Don’t worry; he’ll catch up.” Then, when more time was wasted, “He’s going to be like this for a very, very long time,” because it was easier for them to do nothing than to admit they should be doing something.
No way was I going to allow someone to write off Ronan’s life like that. No way was I willing to say we’ve exhausted all options when “we” didn’t include me, my thoughts or my opinion. No way was I ready to let someone else make such dead-end decisions like that for child. I picked up where they left off. I had to. I did it because it was what I had to do as Ronan’s parent.
So, yes I’m just a parent. But, a lot has shaped who I am as that parent. A lot has changed because of how I have to parent all of my children, especially Ronan. His needs are greater and require more focus. Because of his vaccine Injury. Because of the autism. Because of the lack of support. Because of trial and error to make things better. Because of the struggles. But also because of the gains. The successes. Our faith. And hope. And, of course, because of Ronan. All of that makes me who I am.
Something else makes me who I am, too: layers and layers of emotions. So many emotions run through me. They are mostly raw. But, they are all mine. Just like the stories I write. What I’m doing is telling the truth and how real this life is, which includes sharing that some of it could have been different for Ronan and for all of us. I won’t stop even when others think I am lashing out, ranting or bemoaning our situation, or later still when others misuse my words or ideas in their speeches or blogs that have nothing to do with Ronan.
To that I say you have no idea. You have no idea and no right to twist the truth. You have refused to walk in my shoes and see what has happened to my child and so many others. You have no idea what children like my son go through, what we parents do day in and day out, how much we have sacrificed and how we will always find strength to fulfill the extraordinary efforts we must give for our children. You have no idea how much my child is loved, cared for, prayed for, and believed in. You have no idea, and you have no right to bring any of our children, including Ronan, into your conversation.
I, like so many other parents, am determined. Not desperate. When determination rules your every effort, like it has mine good will come. Ronan is that good. He is a reminder of all that I do, and all that I hope for. He is and will always be a reminder of who I am as a parent and that what I am doing is right. I can’t say that much for some others who are so adamantly against our community as they refuse to see, refuse to listen and who constantly attempt to create a divide that shouldn’t exist.
Cathy Jameson is a Contributing Editor for Age of Autism.