Ever since I got back from Nashville, and even shortly before I got there, something has been on my mind, repeating itself like a mantra.
This isn't how it's supposed to be.
When I look at this book I've written, when I see how well it has done and how many people have gotten something from it, when I speak at festivals and conferences and bookstores about it, when I drive the ridiculous car it helped to buy and when I meet writers I admire because of it, when we get to put money away for Schuyler's future and rest a little bit easier, when all these good things happen to me because of this book, it still doesn't change what the book is, or why I wrote it, or what it means that it was ever a story for me to tell at all.
I look at the cover of that book and I see that innocent little girl broken by a bitter god, and for all the great things that have sprung from the book, it nevertheless is still true.
This isn't how it's supposed to be.
I have new friends, mostly because of the book. I have old friends, many of whom have disappeared, some of them also because of the book, others for reasons known only to themselves. I have a new town which isn't me but isn't bad. I'm far from people who mean a great deal to me, but I'm in the place a need to be for Schuyler, and I'm not just okay with that, I'm grateful. Very grateful that such a school and such teachers were here waiting for Schuyler.
But still. This isn't how it's supposed to be.
Most of all, I look at Schuyler. And I know this isn't the way her life was supposed to work out.
We go to parent/teacher conferences like the one we attended earlier today. We spend time just trying to determine how exactly Schuyler will even be able to take the standardized tests that her academic future depends on, tests designed to ensure a certain amount of conformity amongst kids in whose world Schuyler will never entirely exist.
She works so hard, and she succeeds a lot, but she still might not make it, she might not reach the arbitrary standards set by our educational system. Schuyler's life story remains mostly unwritten, and mine is largely written but not in the direction I would have ever chosen. And she's lucky, and I'm lucky, and I know that. I'm a different, better person because of Schuyler and what we've all been through with her, and I don't want to be the person I was before. I don't much care for him, either.
But sometimes, when the nights are unusually quiet like tonight, and when I allow myself to imagine the world the way I thought it could have been, Schuyler's world, the way it should have been, the way she deserves for it to have been, I can't escape the thought.
This isn't how it's supposed to be. And I'm sorry, but sometimes it pisses me off.
I understand the feeling completely. At the risk of sounding trite, it's the "door shut/window open" sort of thing. Some of the very best things that have happened in my life would never have happened if my kids hadn't died. And yeah, that wasn't supposed to happen either.
ReplyDeleteMaybe it shows that we have learned how to make lemonade from those lemons we are handed...but if given the chance to change history, we'd be thrilled to hand the lemons back and give up all that great stuff in a heartbeat.
I think every parent who ends up in Holland instead of Venice (the ones who are there know what I'm talking about) spend more time than they feel comfortable with thinking exactly that: This wasn't how it was meant to be.
ReplyDeleteMost days we just get on with giving our kid the best life they can have. But we wouldn't be human if we didn't wish that they had were "normal" - for their sake, not for ours. We continue to only want the best for our kids, even when we know that they might not ever have it.
Well, that post certainly resonates . . . you just can't have a broken child without thinking about the way things might/should have been, but for the "breaking." It's too bad we can't catch a glimpse of what a "bizarro" world would have been like -- and I wonder how many of us would still choose the broken road (in an "It's a Wonderful Life" type of way . . . ). What would my son be like as a typically-developing child? I'm never going to know -- but I DO know that he's a pretty incredible, well-loved kid who is doing well in school and with his peers and who has taught his parents some serious life lessons in his nearly 7 years of life. And sometimes you just have to stop thinking about it any further.
ReplyDeleteYou have every right to be pissed off. It doesn't make you any less grateful for chances that have come your way. I think when you work with kids with special needs (as parent, teacher, therapist etc) being slightly pissed off keeps you focused on what you need to do. There is a difference between being pissed off for a child and feeling sorry for her. When parents come to my room for conferences and just accept everything and carry on as if this is how it was meant to be and nothing can ever chancge, I worry. They've lost hope. We don't know how our children will turn out. We just do our best, day by day.
ReplyDeleteThis is exactly how it was supposed to be. You'll see.
ReplyDeleteI'm in grad. school to be an SLP and I was reading through your archives when I saw you were going to be at the ASHA convention. And now I am right pissed that I cannot afford to go to the ASHA convention. BAH I say.
ReplyDeleteRob, this resonates with me so strongly today. Thanks for giving a voice to the thoughts so many of us wrestle with and feel guilty for having.
ReplyDeleteAnger, ambivalence, the feeling that life is too frigging bittersweet? You're entitled. Go for it.
ReplyDeleteYup. "This isn't what I signed up for" is a phrase that runs through my head a bit too frequently.
ReplyDeleteI don't have much to complain about yet find myself thinking the same thing now and then. Depressed people tend to go there.
ReplyDeleteI thought about this entry for a day, I guess, and decided to return and say this: You knew writing a book wouldn't fix it, but when the book was successful you still had to digest that reality. Your status as a writer may have helped you, your finances, Schuyler and other kids and parents, but it doesn't change Schuyler's reality. Obvious and yet...
ReplyDeleteIf you didn't get pissed off about this once in awhile, you wouldn't be human.
ReplyDeleteYou'd be some kind of mutant alien being inhabiting a a Rob-skin in the middle of suburban Plano, snacking on the brains of your neighbors every now and then and reading up on human habits at the Borders late at night while plotting world domination.
And Plano's got enough of those.
Loud and clear, loud and clear.
ReplyDeleteIt just sucks sometimes. And smacks us in the face sometimes. Holland? Very pretty sometimes. But I certainly have no desire to be here.
My life? Not exactly what I expected when having my honeymoon baby at age 20...
Huh...you're human...who knew?! I think about this often and I think it's a sign of sanity...or so I tell myself. I would rather not be picking tulips in Holland...I'd rather be booking a flight to ANYWHERE else sometimes...I also used to think everything happens for a reason. I don't believe that bullshit anymore, either! I think it's reasonable to ask these questions, and I think it keeps us headfirst into the wind, slogging through the red tape and paperwork and messiness and sadness and drool and wetness and stinkiness that is our reality sometimes...and no one else will ever truly understand what we're talking about. I think a little non-compliance in the face of what is ahead of us is what keeps us moving forward.
ReplyDeleteHas both dads and the Eels:
ReplyDeletehttp://www.latimes.com/entertainment/news/music/la-ca-eels19-2008oct19,0,2307673.story
So how was it SUPPOSED to be>
ReplyDeleteIt seems to me you suffer from a lack of gratitude.
There are people languishing in unspeakably inhumane prisons because they said or wrote something that offended the ruling elite.
There are people with terminal illnesses who have young children to support and debts so crippling that they will leave their family impoverished and without a home.
There are people who are alone with no one to love them.
I could go on and on. There are thousands of people out there who would joyfully trade their lives with yours in a heartbeat and consider themselves eternally blessed.
But you don't see that. This wasn't how it was supposed to be. Boo hoo. Poor you.
Oh, but you're not just talking about yourself, you argue. (Really you are but you don't see it that way.)
Schuyler is exactly as she was intended to be. She will have the life she creates. She will make a place for herself in the world.
Sure, it would be great if she could talk and all. It would be great if my brother-in-law didn't have schizophrenia. He started out completely normal, had friends, did well in school went to a good college and then a monster attacked his brain. Now he believes Bruce Springsteen leaves secret messages for him in his song lyrics.
That's amusing, in a twisted sort of way. What isn't amusing is that he thinks my husband, his brother, is trying to "destroy" him and that's scary because we never know when he'll show up at our front door with a gun or a knife.
So, why not think about what other people have to put up with and try to appreciate the good things in your life.
Yeah, Rob! Buck up little camper! Turn that frown upside down!
ReplyDeleteJesus Christ, I hope you don't take offense, but sometimes you attract some stupid comments. Maybe you need to turn the anonymous comments off and let the idiots start leaving their names again.
People who aren't stupid and aren't dicks understand that even the best parents need to express some real emotions sometimes. When you show vulnerability, there'll always be someone small and anonymous who's ready to try and bring you down a peg. Don't let 'em!
-J-,
ReplyDeleteNo worries. I have been a much happier person ever since I learned to recognize when someone's issues are with me and when the issues are their own.
I respect your post. I appreciate how you are willing to tell the truth and search through frustration.
ReplyDeleteThere are so many reasons why I read your blog: your wit, the love you obviously feel for you family, your willingness to tell it like it is. And one other reason: your sense that life can be cruel.
I thank you for writing, but I wish there were no monsters...for any of us.
Melody Platz
Hey Anonymous, 10:31 am --
ReplyDeleteSuch an eloquent comment. But it needs just smidge of tweaking for clarity. Here, let me help you:
"How dare you complain about your daughter's condition on your own website! How dare you be ungrateful that she has it! Yeah, sure, so she can't talk--big deal! She'll be fine--you're just trying to draw attention to yourself!
You have it so much better than other people! Like people in prison! And stuff like that! Yeah!
You should stop thinking about yourself, and start thinking about ME! Because I have a schizophrenic brother-in-law. I'd make jokes about it, except he could kill me at any moment! So I have it much worse than you or your kid!
Boo hoo hoo! Everyone needs to feel sorry for me!"
You're very welcome.
Sue
@Sue - your version is much better.
ReplyDeleteSeriously, that was awesome!
There are going to be days (weeks, months) when you feel pissed and you know that "this is not how it was supposed to be", that's so understandable.
ReplyDeleteI do not see your daughter as "broken". She is smart, strong, confident and so lucky to have the technology that exists today to help her communicate. She is so lucky to have strong parents by her side fighting for her. There are so many positives, I urge you to focus on those.
I would never, of course, tell you how you feel or how to feel. You can't help those feelings some days.
I love your honesty: in your blog, in your book...
ReplyDeleteI used to work with a new a family whose daughter was born "normal". She had a seizure disorder and it changed her life at age 4 and theirs. She had multiple challenges;non-verbal,brain damage,etc.
They loved Kandi immensely and also spoke of the daughter they had lost and the pain.
p.S.
ReplyDeleteI used to work with children and families with Special Needs. Reading your blog and your book, I miss the kids, their families. I don't miss the school system.
I often fantasize about a bumper sticker for my car, "Schools are no places for children".
once in a while i look at my "special needs" kid alongside my typical kid, and feel exactly the same. keep speaking the truth!
ReplyDeleteI have one certifiably brilliant child and one who is still having trouble with reading at age 8. When I look at the adulations, the awards, the Gifted and Talented teacher who is so obviously the best teacher in the school (selected to train the best students to raise those scores), the effortless mastery of anything my brilliant child cares to turn her hand to (it's almost too unfair, but she also runs like a gazelle and took 2nd place in the 5th grade race last weekend), the talk of her taking college courses in a few years, the hints of Ivy League scholarships already wafting through the air, God I want to scream sometimes! And my youngest isn't special needs, just average. The educational system is designed to shower the already gifted with roses while benignly ignoring the less blessed. It just sucks.
ReplyDeleteI so appreciate this post. Some days when my own defenses are down, I wander back to the fantasy of the way things were supposed to be. I see Isabelle running around in our backyard and picture Hannah running right beside her. I only go there for brief moments; kind of like picking at a scab of an old wound. But even when I don't let my mind rest in this place for very long, it still exists in my heart.
ReplyDeleteEven after almost fourteen years of dealing with my daughter's disability, I still grapple with these questions and wonder when it'll ever stop. Perhaps never and that's sort of a weight that appears like a thud every now and then. When it lifts, I'm elated and "get it" all. Those times are few and far between, though, but it's great to be reminded...
ReplyDeleteIt just doesn't seem fair, does it? And yet, everything has a purpose. Some days it's easier to digest this than others. Obviously.
ReplyDelete