She’ll Have a Good Life
“She’ll have a good life,” she said, reassuring me that everything was going to be okay.
The emphasis was on the good, not in a way that stressed “awesome” “great” or “fantastic”, but in a way that expressed “satisfactory”, “acceptable”, or “decent”.
It was meant to be helpful, I know. It was meant to remind me that things could be so much worse. It was meant to make me feel better.
It didn’t. In fact, it just made me angry…and then sad.
When I look back on my life thus far, I’m relieved to find that my feelings about it are overwhelmingly those of joy and gratitude. I have had a great life, I believe. In fact, I feel like one of the most blessed people on the planet. I really mean that.
It’s only when I really start to think about the tragedy that befell my daughter and our family that I begin to question it.
My child was poisoned. Her brain and body irrevocably damaged. Her life’s potential stolen. Her suffering and experience denied by those who caused it, the same people needed to fix it. Betrayed by our country and our media. Our marriage fragmented. Our lives cracked in half. The pain coming this close to breaking us. Breaking me.
Great life? Really?
And yet, the answer to that is still the same, beyond any shadow of a doubt. Yes, I’ve had a great life. One of the greatest I know.
For I have lived in Spain and danced in the fountains of Madrid and on the shores of Ibiza at midnight.
I have celebrated in Wembley Stadium with over 100,000 people singing in unison…including Prince William.
I have completed a marathon…in Alaska…while pregnant. And I swear I’m not making that up.
I have married and stayed married to the most perfect man on the planet for me, twenty years together this November, teenagers when we met.
I have excelled in academics and have never really had to work hard for anything…until marriage…and then Autism…and then marriage again.
I have the most loving, supporting, amazing, and hilarious family anyone could ever ask for.
I have had the same best friends since I was 7 years old, and we are still as close, if not closer, than we ever were.
I live in Chicago.
I have been able to use my favorite creative outlet, writing, to actually make a difference.
I have marched on Washington for what I believe in. Thrice.
I have stroked my children’s hair while I have rocked them to sleep, breathed in the scent of them as newborns just placed in my arms, and in those moments, have repeatedly experienced true, unconditional love.
I have learned what it means to be willing to die for someone if it would mean an end to their suffering, no questions asked.
I’ve had the privilege of teaching at two of the best schools in the nation.
I’ve been healthy and active, running and exercising my whole life without injury or difficulty.
I’ve learned I’m stronger, smarter, and more powerful than I ever could have imagined. And I’ve been really frightened by the responsibility that brings.
I have seen my favorite band in concert five times, and once, I even got chosen from a crowd of tens of thousands of people to sit in the front row while they shot a video.
I have been honored by Oprah Winfrey as one of America’s best teachers, showered in her “Favorite Things” on television (only to come home hours later and receive a diagnosis that would change my life forever).
And most incredible…she recovered.
I could write this list for hours, days perhaps. I well with tears just compiling it.
I am one lucky, lucky lady. I know this to the depth of my soul. There’s not a day or second that I take that for granted.
So of course, I want the same for my children. Good just isn’t good enough for me.
I don’t want them to experience an adequate life; I want them to have the best one possible.
I don’t want them to be tolerated; I want them to be treasured.
To go to the best schools and on the best vacations, and more important, to make the best friends they can.
To pursue their dreams and goals with all the enthusiasm they can muster.
To attack life, grab it by the horns, and savor all of these moments…like the ones where you find yourself splashing in a centuries-old fountain to celebrate a World Cup victory.
THAT’S what I wanted for my children. That’s what I still want for them. To love hard. To live hard. To play hard. To go after whatever they want with all that they have.
To be afraid of no one and nothing, and to take a stand on what matters to them most without caring what anyone else thinks.
To try and to fail. Repeatedly. And then win.
To walk along the beach holding their lover’s hand, soaking in the red sun as it sets beyond the horizon.
To kiss someone so deeply and so passionately that they are momentarily lost in space and time.
To laugh so hard with their closest friends they can’t breathe…every time they are together.
To make my life look boring.
This is what I think of when I think of what it means to live. For me, this is at least in part the definition of a great life.
Am I grateful my daughter has recovered to the extent she has? There are no words to express how much so.
Am I grateful for how much more of life she’ll get to experience than most who shared her fate? Ditto.
But am I devastated by the limitations it has left her with? Is a “good” life really good enough? Is that what any of us really wants for our children?
Not me. And I don’t care who hates me for saying it.
What was robbed from my daughter and those like her cannot ever be replaced. How do you measure friendship? Inside jokes? Piano recitals? Baseball games? Solving a math problem? Going on a first date? Winning a race? A homemade card? Getting an A? A college acceptance letter? Insight? Intellect? First love? Sleeping through the night? Health?
You can’t. You just can’t. And there is no amount of time, comfort, apology, or money that can ever, ever make it better.
In fact the only thing that ever really comforts me as she struggles to remember simple things and handle the increasing demand of academics she just can’t understand, is this:
Yes, her life may be good, but most important; it was for good. In a way that I cannot perhaps ever understand, and even if I do, cannot perhaps ever accept.
For she is here to teach us. To warn us. To show us what happens when we put profits over lives, fear over freedom, and ego over truth. To remind us that when you know better, you do better…something humanity must learn quickly before it’s too late.
All of our little canaries are here with the same message. Mine is not unique.
Still, I admit it; I wanted her to myself. I’m sure she wanted her to herself. The world took her as theirs instead. The ultimate sacrifice for a child and parent to make, without even being asked.
But maybe, just maybe, because of that…or even in spite of that…her life and those of the children like her truly are and will be greater than I could have ever possibly imagined.
I certainly hope so. Because those are words I think I can actually live with.
Julie Obradovic is a Contributing Editor to Age of Autism.
To Autistic Twins - Dear Friend, You really need some help. If there is no person to help you, you need to slow down , reduce your responsibilities as much as possible, pare housework to the minimum, and focus on your kids and your health. You must take care of your health. Can you give us your email so that we can give you some tips for reclaiming your own health? I really relate to what you say, because just yesterday I was recalling how I had my little baby and I did not know that I needed help and I did not know to ask for it. Somehow that is part of American life for many. Other cultures are far more compassionate, and I think more aware of infant needs. I observed a Nepali couple take care of their infant . The child was continually held for nearly a year! - by either the mother or father. That child was never heard to cry. How I wish all those stupid medical "professionals" who think it is normal for a baby to cry for hours could see something like this.
Posted by: Cherry Sperlin Misra | September 22, 2012 at 03:24 PM
Madvocate
Thanks!
Posted by: John Stone | September 22, 2012 at 04:06 AM
Julie, You are authentic. You have integrity. You have the ability to just say it as it is and more or less accept it. And that makes you a leader. I'm thinking of these things because I am about to do an inauthentic thing. I am giving a party for a candidate (not out of choice but snookered into it the way those things happen..no...please, please, etc.). You see I was ambivalent about this candidate because I wrote her a letter to oppose a vaccine bill that makes it harder for parents to get exemptions--a police state sort of bill, that is medical police state. In other ways, I think she is a good candidate, and maybe better than the upstart opposition who being a military man probably endorses vaccine mandates as well (he has got to have had a zillion). But she had the chance to save parents from ruined lives, from unbearable grief, from all consuming rage... and she chose instead to follow the party line (Democrats, no less). It was easy to just listen to the doctors and authorities rather than the parents, and she did. What an inauthentic thing I'm doing. What do I say if there is a moment (maybe at the end of the party) when our eyes meet and I imagine her saying lightly--well, vaccines are important for public health and the studies don't support your anti-vaccine position. Then, I say, "You might be right. But what if you are wrong. Take that into your very heart and soul. What if you are wrong."
Posted by: Kapoore | September 21, 2012 at 11:48 PM
Yes, Julie, and yes, Sarah! I agree with both of you. And I get so angry when even others who are close to my daughter say things like, "She is happy, though, a content child." And I just want to scream that she may seem happy because she is trapped in her own world. Yes, she is happier than most Autie kids, but she was already fighting for a "normal" life with her Down Syndrome. And then to add Autism on top of that just makes me so angry! Our kids are just treated like throwaways. They're just "retarded" anyway, right? Why bother?! Ugh!
OK, I'll shut up now. I just get so angry.
Posted by: Julie Leonardo | September 21, 2012 at 10:36 PM
A totally inspiring article. Notice friends, how many medical professionals do NOT KNOW what autism is. Its up to us to correct that, difficult as that may be because , like the host family of the holocaust survivor, they dont seem to want to know about it.
This reminds me of a neonatologist, watching an autistic boy run, in his odd way- at a distance of about 100 feet. The doctor was very curious and I guess that was a nice safe distance from which to watch . The emotions I usually feel are anger and bitterness. Recently it has appeared to me that the autism incidence is plunging in New Delhi (and I know what this is due to- changes in vaccine usage). My first thought was elation. Now I may get free from this obsession and demands on my time.My husband said "Now, do we get the dining table back?" (It is covered with papers) Then a deep bitterness set in.
And friends, why are we not demanding some action from doctors.? Why arent we accosting them, saying, "Why arent you speaking up about the rising disorders in children. Not even the leukemia? "
Posted by: Cherry Sperlin Misra | September 21, 2012 at 10:31 PM
AUTISTIC TWINS
I hear you and I know what you mean.
I am so sorry about it all. To have one is bad, but two!
Does family take any time to care for them?
Nothing is more eye opening than to spend the day with them.
It will help you too.
Posted by: Benedetta | September 21, 2012 at 10:23 PM
JBO, simply outstanding you are. love, lj
Posted by: LJ Goes | September 21, 2012 at 09:08 PM
@John Stone,
Great castles, great gardens, great shopping, great people, great beauty - I say Britain is great. (Even if it treated a great doctor like crap.)
But thanks for the history lesson.
I think we agree that good is the enemy of great, and that every child deserves great health and a great future.
Posted by: Madvocate | September 21, 2012 at 08:52 PM
What angers me most is FAMILY!!! I have twins and I am drained and unequipped... I have to work to pay for medication and before they were 3 years old I had a chronic illness that caused fatigue and depression. So my family keeps telling me I am doing somehting wrong... I am the problem, they act like that because you are spoiling them.. I am so angry and mad because I have NO help. the government doesnt help. but a life criminal that gets shot up in a drug fight can get Social Security Benefits and Medicaid for life but I can't get anything! This is ridiculous! Public school arent educated to treat them, it is a guessing game.
Posted by: AUTISTIC TWINS & I AM PISSED.. FAMILY DON'T CARE!!! | September 21, 2012 at 05:21 PM
John your right it reminds me of the Portonaccio sarcophagus
http://en.wikipedia.org/wiki/Portonaccio_sarcophagus
If one looks to the bottom of sarcophagus it depicts , crushing all women and children,beasts and men who are deemed needing to be crushed..in the name of ROME.....but the top depicts the loyal ,upstanding family man ..which is a calm white wash of his murderous life ...and it makes it all OK in the name of Rome.
I make this comparison between Offit(see him on Facebook family man) Blair,Gates et-al .
Just as the sarcophagus depicts but, they really have been good guys !!because they are loyal upstanding family men.!!!.never mind the vaccine train smash, they have all imploded on the populations..and the suffering for years to come...
The only plus point is ...if you look at the Roman period and its massive control it came to an end ...just like Pharma one day it will end..
SHAME ON THEM
Angus
Posted by: Angus Files | September 21, 2012 at 05:17 PM
Madvocate
I fear that the term "great" as in "Great Britain" probably signifies "large" more than anything, coming about through the union of England and Scotland in 1707. But as to Julie's story announcincing "She'll have a good life" it is an infernal impertinence when you know that most likely the best bits of it have just been removed, said just to make the speaker feel good, even great. One of the most sublty sick things I have ever heard uttered and perfectly designed to increase the devastation of the recipient.
John
Posted by: John Stone | September 21, 2012 at 04:46 PM
Sarah,
I totally agree with your comments and feel the same. The majority of children don’t have autism yet, but such a day is coming. However, majority of parents already have children seriously damaged or crippled by toxic vaccines, medications and GMO food, as over 60% of US children have some kind of chronic disease, which may kill them. We must appeal to the parents of these 60% and unite with them in fight for freedom from medical holocaust, prepared for US population by Nazis in pharmaceutical companies. We must inform everybody around about dangers of vaccines.
Posted by: no-vac | September 21, 2012 at 04:08 PM
Good is not good enough. If it was, they would have called the country across the pond "Good Britain."
Thanks for writing such an inspiring piece. It captures my thoughts exactly, and confirms how destructive those people are who say us wanting the best for our kids is all about us. No, it's all about our kids.
Posted by: Madvocate | September 21, 2012 at 03:57 PM
When I hear comments like that I feel the urge to blurt out "My child was poisoned you moron" sometimes I feel like spray painting that message all over sidewalks and buildings, scrawling it across "Get your flu shot" posters. I don't want good intentions. I don't want people telling me how strong I am or that my son will "find his way". What I want is for people in this country to wake the hell up to what is going on. Are people collectively stupid? Are they in denial? Brainwashed?
I recently heard a lecture given by a Holocaust survivor. A man from Czechoslovakiawho who at age 12 was taken to a concentration camp outside Prague. He described his experience after the camp was liberated and he moved to Canada to live with a host family. He said noone there wanted to talk about the Holocaust. Noone understood the atrocities other than the other survivors. His take is that it didn't effect them personally so they could ignore it.
I totally related to what he was saying. Other than the parents, noone wants to talk about autism either or the fact that so many American children have been poisoned. If you do you will be labeled a "conspiracy theorist." or you'll be given odd looks. So many similarities. I see our country quickly becoming a medical police state-- when the transformation is complete and our rights are gone perhaps that is when the others will understand and by then it'll be too late.
Posted by: Sarah | September 21, 2012 at 01:31 PM
We were told by one member of the "team" that first diagnosed our daughter: "You have to face the fact that she may never be any better than she is now."
No, I definitely do NOT. Some years later, she is much better than she was then. She is still a very long way from recovered, but she is improving. I still believe that she will be able to function independently one day.
Posted by: Carolyn M | September 21, 2012 at 01:18 PM
"Vaccines are unavoidably unsafe" - declared the Supreme Court. Based on this, we should be taking the corrupted state legislators and governors, who push for mandatory vaccinations, to court one by one, as they are planning with premeditation to injure or kill our children. They are planning American holocaust. Our life is a life of fighters for survival of our and all US children.
Posted by: no-vac | September 21, 2012 at 12:51 PM
Wow! I do know one thing and that's that a mom as passionate as you will give your daughter the best shot possible at a great life.
Posted by: jen | September 21, 2012 at 12:47 PM
Julie, beautifully stated: a life that's not just good, but for good. In whom did I see you hungry, or naked, or in prison? In Ben, my son.
At the last graduation, I hope look back over the great, grand human enterprise, a sacred partnership, and standing beside Ben, say, "We did our part."
Posted by: Dan E. Burns | September 21, 2012 at 12:43 PM
Julie - This article truly touches my heart. We seem to be very similar in so many ways in our journeys with your daughter and my youngest son. I've struggled lately with feelings of gratitude and guilt, both blessed and wronged, fortunate and frustrated. Thank you for sharing this.
Posted by: Meleah | September 21, 2012 at 12:26 PM
Thank you for writing this. It rings so true to me.
Posted by: Ginger | September 21, 2012 at 11:38 AM
I felt as if I had written this myself. Thank you for sharing!
Posted by: KDenton | September 21, 2012 at 11:23 AM
When we got his official diagnosis of autism we were told "go home and have a cup of tea nothing can be done"..were still trying to sort the vaccine train smash mess out..
Angus
Posted by: Angus Files | September 21, 2012 at 10:21 AM
Yes, in our case someone rang up from a government office to tell us our son was autistic, but it was alright because there were plenty of excellent special schools in the neighbourhood!
Posted by: The Lottery | September 21, 2012 at 10:08 AM
A good life will be determined -- in the very end --- if someone will miss them, and they are not found homeless.
Makes my blood run cold and I try not to think about it.
Mine is wanting to go to the movie all by itself, to watch the third or fourth in the series about Raccoon City - and how a big bad pharma company invented this medicine the "T cell virus" to cure everything -- but it caused them all to become zombies instead. And then they made a G virus off the T virus --for a cure -- it changed the person on the genetic level - to monsters-- but a least they had a mind of their own. It is called "Resident Evil"
I told him it was like going to a restaurant and eating by yourself.
Posted by: Benedetta | September 21, 2012 at 09:40 AM