I had the opportunity recently to spend some quality time with my college room-mates. Senior year we lived in a falling-down-stereotypical-college-campus-house, 8 of us total, all friends for the duration of our school days. They were some of the best days of my life.
As we all know too well, time moves on, adulthood settles in quietly, and before you know it, months, sometimes even years pass before you get a chance to see one another. Thank God for email which give you the chance to virtually keep up with all that is going on.
A few years ago we got tired of letting so much time pass, so we started scheduling annual girls’ nights or family barbeques. It was my turn this year to take the reigns, so I scheduled an overnight get-away to my parent’s lake house. We couldn’t wait.
At the last minute, a few of my friends had to back out, and slowly it became a small girl’s only get together rather than the big family bru-ha-ha I had intended. None-the-less, it was time well-spent.
After about 5 hours of catching up and 5 bottles of wine in the process, we started getting sentimental. Aren’t we so lucky to still have one another? Didn’t we have the best time together? Don’t you miss those days of having no responsibility? Yes, yes and yes.
But then someone said something that snapped me into sobriety.
“And aren’t we all so lucky otherwise? I mean, really, look at all of our lives. We’re all successful career women and moms. We’re happy and healthy. And granted, some of us have had a few bumps in the road, like you, Julie with Eve, but none of us have had anything really traumatic or awful happen to them. Really ,we’re so lucky.”
I didn’t know what to say. I sat there with my mouth open. A bump in the road?!
That’s what she was calling my experience with Autism? A bump in the road? A little distraction on the way to happily ever after? And weren’t we all so lucky? I couldn’t speak. I didn’t speak.
I must say my friend is one of the kindest, warm-hearted, sensitive, fun individuals I’ve ever known. I love her dearly and she loves me too. I know to my core that she meant no disrespect, no harm, and certainly didn’t mean to be insensitive.
But that didn’t make it bleed any less. I felt like a fish who had just been gutted right there on the sunroom floor.
A bump in the road?! I couldn’t get past it. As their conversation continued I sat staring into that dark, dismal place where all my nightmares past, present and future lie just below the surface waiting to come out and scare me at a moment’s notice. The monster in me that sleeps with one eye open woke suddenly as it always does when someone casually dismisses the profound suffering Autism causes.
I think about the video I have of Eve at 5 months old, laughing and cooing and making funny noises with the voice she had just discovered. She was kicking and squealing and delightful and full of life (which is what her name means) and just about to descend into her first ear infection that spiraled into 3 years of horrific illness after illness after illness, followed by developmental delay after delay; a spiral that she has never fully stopped being affected by. It was the last time Eve was ever herself.
I think about the $14,000 school loan I just had to take out, because even though Eve is technically recovered from Autism, she is like what Jenny describes when she says, “You can recover from getting hit by a bus, but you may never be the same.” Only Eve wasn’t hit by a bus; she was hit by a Mac truck.
Eve is reading years behind grade level, and it is becoming more and more apparent that the concept-imagery part of her brain is simply not recovering like the rest of her. Abstract ideas and thought are so very hard for her. There is a school here, an hour both ways from my house that works on just that, 4 hours a day, 5 days a week, one on one. Of course we’re going to try it, because hey, isn’t that what we warrior parents do? And so now my little 8 year old, instead of going out to play with friends all summer, gets to do what? You betcha, more freakin therapy! And I get to work all next year just to pay for it! Fabulous!
I think about the other tens of thousands of dollars we have spent, and then try not to think about it and how that and my husband’s depression over Eve almost caused us to divorce.
I think about constantly explaining to her brother and sister why she gets different treatment sometimes and how her brother in particular is really, really starting to resent her.
I think about how the little girls in the neighborhood don’t call as much anymore, and how I see them across the street every day swimming together, and how not one day this summer have they called to invite Eve. I realize how little girls age 8 are into dolls, and barbies, and make-up, and so much more, and how my Evie just can’t relate. You want to play goofy, watch TV, play a computer or video game, and ride a scooter? She’s your girl. But this year in particular, the others girls are changing and Eve just doesn’t fit in.
I think about seizures and hospitalizations and ambulance rides and putting her on the little yellow school bus as a 3 year old and how scared she and I were and that stupid harness that looked like a torture device that I thought for sure would kill her or trap her if there was an accident and watching it drive away and wondering if anyone could ever feel this awful.
I think about the moment I realized she hadn’t smiled or spoken in weeks.
I think about the shit leaking out of her in the tub and the pool because she was so constipated and how I was told this was typical and I think about being scolded for her not being potty trained at 3 years old by the very same people.
I think about the eczema and the yeast infections and how she only slept in a rocking chair and how she stimmed and how her joints were way too flexible and how her hair was like straw and how she drooled incessantly and how this crap went on for YEARS before anyone helped us.
I think about the fucking blood draw kit that I was supposed to send in that they didn’t centrifuge properly, and how the vial opened up violently in my kitchen and spilled all over me and the table, on face, on my lips, all over my hands and how I stood there screaming and shaking, literally with my daughter’s blood on my hands which is exactly how I felt metaphorically anyway, and how scared and confused and exhausted I was wondering if these DAN doctors really were charlatans and if I were hurting her and how I wanted to be a teacher not a doctor and what was happening to me that I was trusting people on the internet I had never met to tell me how to help her? Had I lost my mind?
I think about the ear tube surgery that didn’t work and the other ear tube surgery that we have to do because oh yeah, she’s got scar tissue and fluid in them again, which is not only why we can’t do HBOT, but also why she says WHAT? over and over and over to which I get annoyed and then feel guilty.
I think about what it possibly feels like to be poisoned to the point of losing your mind and the ability to use it to tell your mommy or anyone for that matter where it hurts and that you’re in so much pain and so scared and totally aware of what's happening to you and then I stop because that thought alone makes me want to faint.
I think about holding her down to be catheterized for bladder infections or urinalysis, and all the other times I have had to hold her down to be poked or prodded, including multiple EEG’s that showed us nothing so we were sent home.
I think about the time she wandered out of our hotel room while we were sleeping and how I found her by the pool in her footy pajamas.
I think about how I had to move out of the house where she had her seizures and slipped away from our lives because it was too painful to be in those rooms anymore.
I think about her baby book that I stopped filling out after the first year because there was nothing to put in it. No favorite toys. No funny sayings. No first steps. No crawling. Besides recording her immunizations and subsequent rounds of antibiotics the stupid thing was worthless.
I think about my poor aunt, God rest her soul, that told me while babysitting, Eve made a high pitched scream that she had never heard in her life and how it was right after getting 7 shots while on her 9th round of antibiotics and how Eve never woke up the same child again.
I think about falling to my knees and vomiting when I learned how and why Eve got so sick and how I held her down to let it happen.
I think about how everything I have ever believed in, from my God to my country to my family to my marriage to myself to my friends to my faith, has been forever changed by Autism.
I think about someone I know saying to me that even if it were true that 1 in 100 kids were injured by vaccines, doesn’t that still make it okay for the greater good and I rage with a fire inside when it is said and look him straight in the eyes and say GIVE ME YOUR LIFE THEN. Give me your life! If you love the fucking greater good so much, give it your life! Are you willing to give up your potential and your life for the God damned flu or hepatitis B or chicken pox? Please, don’t ever talk to me about that again unless you are! And by the way, I don’t want your life, I WANT YOUR CHILD’S. GIVE HER TO ME! I GAVE YOU MINE YOU SON-OF-A-BITCH AND I WASN’T EVEN ASKED, NOR DID I HEAR YOU SAY THANK YOU!
I think about the fraudulent studies that I now know so well and the bastards who put their names on them and how in my worst moment I wish them and all the vaccine deniers of the world would have a vaccine injured child just so I could say I told you so you asshole, I hope you hurt as much as I do, and I hope you burn in hell, ha ha, and then I ask for forgiveness because that’s a terrible thought and I really don’t mean it, I think.
And then I think about how I don’t know if I will ever get over the loss. My daughter is here, yes, and I have so much to be thankful for, she is recovered!, which only makes me feel more confused and guilty because I know so many of you would give anything, anything to have what I have, but how can I explain the constant pain I feel over it happening in the first place and the worry I feel over what has not recovered (a little thing called her intelligence) and how that will affect the quality of her life and the rage I feel over the loss of my baby girl, the one God gave to me on March 27, 2001? The one in the video at 5 months old, laughing and cooing and squealing and bright eyed?
She is dead. That Eve is dead, and I don’t care if people hate me for saying that because that’s how I feel and that’s how I will always feel and there is no closure and there is no comfort just because she can talk now. I want that Eve back! I want THAT Eve! I want to know who she was, damn it! I want to know who she could have been! Who she SHOULD have been! I want to know what she would have said as a toddler and if she would be an amazing athlete like her father and if she was funny or witty or serious and so much more. I want to know how our family would have been different and how my marriage would have been different. I want to know how my life would have been different.
And I hate the people that did this to her and I pray for the strength to forgive them for the anger I feel on IEP days when I get a big fucking pile of papers to go through that tell me exactly what she still can’t do or on the days I have to reorder supplements or analyze her stool or make a judgment call on whether or not we can have that ice cream because she’ll be the only one of the group not to get it and damn it hasn’t this child had to sacrifice enough?
I think about all of the people who have been able to benefit from my knowledge and our experience and my perfectly healthy nieces and nephews and how painful and wonderful it is to watch them grow and develop normally and how I can’t help but think, Where was my Julie? Where was my guru to save Eve? Fuck you, guys. Why do your children get to be saved? Where was my savior?
I think about the 86 weekends I have gotten up in the middle of the night on Friday, Saturday and Sunday just to give her medicine, and the 14 more I have to go.
I think about the money, God damn, the money.
I think about this upsetting radio-a-thon in Chicago every year for a local children’s hospital and how all these parents of children with cancer and other horrible conditions make me mad because they don’t know how lucky they are to have insurance to cover their children’s condition and how people feel sorry for them and have bake sales and doctors and nurses treat them with respect and how their children have medicine and a hospital bed and no one accuses them of just behaving badly or having bad parents and bad genes and how our children are the sickest on the planet and they are left to fend for themselves and fuck you all, too.
I think about the stupid people in this world who have nothing better to do than bother parents trying to help their children and wonder what the hell their problem is and for crying out loud just go the hell away and mind your own business. What do you care what I do or do not for my child? Get a life!
I think about my cousin making a comment in the exact same room about how it was only when my other cousin’s child had to have surgery that she realized how it feels to have a sick child and how awful that must have been for them and I want to punch her in the face thinking, surgery? Really? I mean, yes, it was scary and serious, but it was over, and she is fine and she’ll be fine and it was covered by insurance and she was in the hospital for a week. My daughter’s MIND, HEALTH and LIFE’S POTENTIAL were stolen and I’ve had to figure out how to pay for them and get them back on my own! Don’t fucking talk to me about surgery! Where was my basket of cookies and flowers, Sorry about the Autism, Get Well Soon? Oh yeah, didn’t get one.
And I think about all of the affected children around the world and how no matter how hard I try not to I see them everywhere. Everywhere. Everywhere I go, there they are. There's the Autism. There's the speech delay. There's the ADHD. There's the asthma. There's the diabetes. There's the peanut allergy. I envision them in one big group standing in this vast open area hovering above them in a helicopter trying to envision the level of destruction we have created and I’m overwhelmed with the loss. I am completely overcome at our stupidity and ego and ignorance and I wonder if God cries when he sees what we have done.
I think about all of this and more in what is probably only a few seconds. I realize I’m about to explode and make up the excuse I have to go to the bathroom where I stare in the mirror and compose myself. The monster in me is about to rear her head and I know I have to put her away because that’s not who I think I am or who I want to be or who I want them to see.
Truth be told I have haven't been as happy as I am right now in my life in years, and in spite of the pain that lives inside me, I am actually full of gratefulness and compassion. I am perfectly well aware of how much worse it could be and there isn't a day that goes by I don't thank God for the fact it's not. I'm not dismissive about my cousin's surgery (or anyone else's hardship or sick child for that matter), it was terrible. And I'm nothing but thrilled for the healthy children of my friend's and family, just jealous. This is the path I was given and I live everyday to try and make it right. I pray for strength and guidance and the ability to fogive the unconsciousness and ignorance in others, and truly, I think I'm doing a great job. I have dedicated my life to being the kind of person who takes lemons and makes lemonade.
I know my friend meant no harm, and in her defense, I’m sure our experience has looked like a bump in the road. I am a master of hiding my pain, a combination of needing to and having to.
I learned quickly people don’t want to hear you go on and on about Autism, especially if you think vaccines are involved, and that they almost always severely underestimate it as this mysterious little genetic speech disorder so what’s the big deal anyway and that you have to be careful about who you say what to. I’m keen to the swift change in conversation by someone when the topic comes up.
Plus, I can only think of 3 times I have actually broken down anyway, the blood incidence included, convinced that it’s fine to do, but not something that will help heal Eve, so move on. In fact, the day my daughter was diagnosed, actually the minute she was diagnosed I said these words aloud: I will cry about this later right now there’s work to do. When the house is on fire you don’t stand inside crying about it; you get the hell out. I also only break down to 2 people, my best friend and my husband, so how could she know?
So maybe her comment is in part my fault for not giving her the gory details of what Autism has really done to my life. Maybe I deserve an Oscar for people actually thinking it only was a bump in the road for me. Maybe that’s a compliment.
A bump in the road though? Gosh, is this what people think?
How can they ever know it was more like crashing into a brick wall going 100 miles an hour, and never waking up the same if at all?
I guess they can’t. And the rational side of me knows, that’s a good thing, but damn it, the human side of me wishes they could.
Julie Obradovic is Contributing Editor for Age of Autism.