Some days I speak only for myself and of my own experiences. Other days it is my hope to speak up for others.
I believe that our children’s vaccine-induced autism has given us a lot in life. First encountered through an unfortunate series of events, the autism of today can destroy families and yet build relationships like no other. Some of what we’ve gotten with the diagnosis is rotten, stinky and horrible while other aspects have an element of positive that includes the tiniest hint of a silver lining peeking through.
As much as an autism diagnosis is part of a spectrum, so are the various emotions we experience in return. From naivety to hope, it is not too hard to quickly go from one extreme to another! As each child is affected differently, our own days might vary quite drastically. As can each emotion. And how we react to them. We are liable to yoyo through extremes from one day to the next. One day is even keeled with everything running smoothly. The next, we only wish it would remain smooth. Instead, it has the potential to become a full-on fight for survival as every hour ticks by.
Fighting and survival. Who starts out parenting thinking that their child-rearing days will be a fight? Or that they’ll have to “survive” it? With what we’ve witnessed and with what we’ve been forced to handle, it does come down to a fight. Like for the thousands of families who filed in the US Vaccine Court. But who were later forced to walk away. Or for the many who face special educational battles yearly. After we’ve seen what we have and heard what we’ve heard, fighting and surviving has become second nature. We’re on edge. We’re ready to say ‘no more’, ‘no, you won’t’ and ‘no, you just didn’t!’ We’re not just ready because those thoughts don’t remain thoughts for too long. They become words that quickly fly out of our mouths directed at someone who offered another injustice. Or lie. Or worse, apathy toward our child. Since it’s been a long time that we’ve lay on the floor curled up in the fetal position wishing for a redo, we are much quicker on our feet. We know how to respond at lightning speed. Ready to fight. Willing to do battle. And to fight as long as we need to. We fight for the kids. For their rights. For their lives. To survive. And survive it is and will be so that we can be ready to fight all over again.
Over and over again. For those kids who seem to be stuck (like mine sometimes is) in a cycle that doesn’t show signs of an end. A cycle of slow development. Of sicknesses. Of sadness and sometimes despair. Will it never end? Can we skip over it? Or kick start a new cycle? Slow or lack of development stalls progress and the chance to hope. To hope that something good will come around again. Or that something, just one thing, could get a little bit easier. If I can just push through this. If Ronan can figure it out. If we can bypass this funk. If we can get in sync again.
If. If is a big word. A lot rides on. If. If we didn’t even have to think about it. But we do. If we can get through it, it can lead us to recovery. What if we can change the affects of the past? Ahhh, if there was never a What If. Or What Would Have Been. And A What Should Have Been. Or a What Could We Have Done Differently. Days should not be full of ifs. They don’t accomplish much and can make us weaker. Finding strength to think ‘Yes, I can, and oh, yes, I will,’ might turn into ‘I most certainly will.’ Our children are vulnerable. So we are too. If we knew then what we know now. If only. If ever again. No, never again. We are so much wiser now.
The knowledge we possess could fill volumes. More volumes than the pharma-funded medical literature and textbooks that are passed out like candy. We put ourselves out there because of what we have seen, because of what we know and because we have long tapped out of our What If scenarios. We do what we have to as many times as it takes. We speak, write and share the truth while brushing off the emotions and people that want to bring us down. We turn away and move forward. We have to in order to again survive what was done to our children. For someone else’s greater good. We constantly face our fears head on. We do this because we have quickly discovered that if we don’t, no one else out there is willing to do what we have to do.
No one knows our children like we do. No one listens to their cries, to their pain or to their suffering like we have. We hold, we hug and we wish it could be different. No one celebrates or cheers for our children like we always will. Our children may never know the efforts we have made on their behalf. Our children may never know the mountains we have moved. They may never see the emotions we quietly express, but it is for them that we hold it together. It doesn’t matter if our children know or later find out how their needs became our mission. We do what we have not for recognition or for awards. We do it because these children are ours. Because we want nothing more than peace to fill their lives. And of course for them to be blessed with better health. And to be given every chance to grow into happy, independent and successful individuals.
Cathy Jameson is a Contributing Editor for Age of Autism.