Today is Sunday. Last night I was up all night waiting for and this day. I sat at my desk all morning in anticipation of Brandon waking up. Would he, or wouldn't he...
For the last four years my sweet son who is significantly affected by vaccine induced autism, gastrointestinal disease, immune dysfunction, and a host of other things, has also battled relentless non-stop seizures. Four years we've lived through those with Brandon. Four years of praying, crying, begging the medical community for the help it knows not how to give for this new man-made disorder called autism.
But today, Sunday, with the help of a doctor we pay out-of-pocket for, would be fifteen days seizure free. We haven't had that in quite a while. Once so far this year we've had 28 days, but not since March have been been able to get close to that mark again. Brandon's immune system is just too weakened from numerous assaults and numerous years of neglect by the very medical community who created his autism with their vaccine spree equal only to our Governments spending spree. I sat at my desk with Brandon asleep down the hall....waiting. Typically his seizures occur upon waking, which is why for the past four years, we dared not wake him. Not to be on time for school, to be at an appointment, to go to church, -- nothing. He was having enough seizures other times of the day, we dared not do anything to increase that number. We have added that as yet another thing autism demands that we must not argue about, because as we have learned, in those instances, autism wins, leaving Brandon to pay the price.
Then I heard it, his feet hitting the floor. No, not in a seizure, but in waking up. I grinned so wide. I thanked God so greatly. He did it. Made it half a month seizure-free. God did it, Brandon did it, his doctor who is 'in it to win it' did it.
This day was a day to rejoice. Finally, tears of joy for however long they last. Tomorrow, he can have a seizure. I can't worry about that. I'm too excited about today's victory. If we made 15 days, we can make 20. If we make 20, we can equal that 28 day record. If we can do that, we can do just two more days and make a month. I live my "Life with Autism" seizure-free day by seizure-free day. Seizure-free record by seizure-free record.
Hopeism by Hopeism.
Which is why my jubilation of joy in today's record, today's hard fought record for Brandon, for his doctor, for us, was marred by having had the unfortunate displeasure of reading yet another blog trashing those in the autism community who have done, who do, some pretty darn good things for autism. For my son.
After I read the blog, I was so crushed, so disappointed. It was like the fourth or fifth such blog from this individual on a seeming vendetta in public. I've read them and can make no sense of it, except that it creates further divide in a community with way too many divisions already. I don't want to make sense of it either. I am too busy working each second of each day trying to hit those seizure-free milestones. Trying to reclaim what they took. They who are outside the autism community, not they who are inside it. I can't believe we've slain all the jabberwocky's there are to slay outside the autism community, to have time to behead anyone in the autism community.
I look back at my autism journey with my soon-to-be twenty year old son, and I think of all who have helped me get him to where he is today. Who has helped me most. And it's been the very people who have been trashed recently. If it weren't for the editors of Age of Autism I would have never known about Dr. Wakefield's work and Thoughtful House Center for Children where I scraped my pennies for months to drive my son there for a scope. A scope that changed his life, and ours. Finally, someone saw very real medical issues that weren't called, "It's just autism." Finally someone treated our son medically. Finally, after a decade, our son didn't live his days diarrhea episode by diarrhea episode. If it weren't for Adventures in Autism I would have never known all the information I know about vaccine links. I would have continued to blindly believe my doctors who said there was no link.
I don't care who didn't do what or who didn't play fair with who at the last hearings on autism. They were hearings on autism that we so desperately needed. I didn't get to speak on behalf of my son either, and I guarantee that what I would have had to say would be just as controversial as anyone, but I'm not blaming anyone. I made sure his voice was heard in the letters I wrote to those in that committee. We all have that opportunity. The opportunity to beg of them to hold more hearings, so more can have the opportunity to speak. Not nit pick and blame and point fingers for whatever reason. I sat glued to my computer screen all day watching those hearings. I didn't see anything hijacked. What I saw was a hearing on autism. What I heard repeatedly was members of that committee asking about the autism/vaccine link. Asking questions of the CDC that the CDC could not answer. I whooped and hollered all day watching that. I cried tears of joy that maybe, just maybe we were getting somewhere. But ever since then instead of capitalizing on that momentum, I've unfortunately read negative blog after negative blog about it. And let me tell you, if all of that makes those members of Congress not want to mess with it again, I'm going to be one very angry warrior mom. How dare anyone do that to our kids. My son needs these hearings to happen this November. My son needs everyone in our community and who claims to write about it, serve it, investigate it, and speak for it, - to be on the same team of us versus them. Not us versus us. When we win that fight, then by all means fight each other.
I am a veteran in this "Life with Autism" who has seen it all so to speak, yet it still stuns me when I see us acting as "The Angry Family" as portrayed in a story written by a little boy in Everybody Loves Raymond.
That's how they'll see us. Those in Congress who must help us. Anyone really. They'll only see us as the angry family and not want to be a part of that.
Watch this video clip below:
Click here for video
That is us. Today, when I should have been rejoicing all day, I was instead equally saddened by that blog. That hurtful, hurtful blog against those who have done the most to help us. And when you think at how few actually help us, it's even more heartbreaking.
After that clip, in that episode the family met with the Reverend of their church. They all sat there and blamed each other for why the little boy wrote about the angry family. That is us. Everyone blaming each other, except for who is the true blame. Them. Not us.
The Father sat there and listened to them all make fools of themselves, then very calmly said this:
"Nobody wins in this game. Least of all the children, which is what I got out of this book - The Angry Family." He then pointed to each adult in the room and said, "It's not about you or you or you or you, or even you. It's about this little guy and his sweet simple way of giving you a message."
My son is that sweet little adult guy who is silently screaming that message. Begging us to help them. And how do we answer? By hurting the few who actually have helped. Who continue to help. I'm reminded of a few lines of my favorite song, and how I've prayed all day long that our community has something better for my son while he's alive... That it's not only until this generation has died, drowned, or have been murdered by their mother's when people stop listening to their pride and start listenin' to the plight of the 1 in 50...
A penny for my thoughts, oh, no, I'll sell 'em for a dollar
They're worth so much more after I'm a goner
And maybe then you'll hear the words I been singin'
Funny when you're dead how people start listenin'
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