Brain GPS

My job is equal parts teaching and driving.  Of course, I'm completely directionally-challenged, and so to have any chance at all of getting to a school or home to see my students, I invested in a GPS.  Nothing fancy, just something with pictures and a voice (I like mine to speak in a British accent) to get me from "I don't remember a barn on this street" to "Oh, look!  A school!"  When I am lost, GPS helps me find my way.  Simple.

So why doesn't my brain come equipped with one of these handy gadgets?  Oh, sure, there's that whole spatial awareness thing, landmark-recognition and all that.  But what I really need is an "I'm lost and I don't know what to do next" kind of system in my brain.  Something that will tell me how to get from Point A in the City of Overwhelmed to Point B in the Land of Calm.  If it had one of those handy "avoid routes" buttons, I could save myself a lot of time bypassing the I'm-Having-a-Breakdown lane.  

In the last few weeks, I've had dozens of decisions to make.  Not the familiar kinds of decisions that all moms make every day, but new, scary decisions with consequences I can't imagine.  College-payment decisions, job decisions, health care decisions...basically, my mind is on decision-making overload.  When that happens, I have a tendency to overthink everything - especially those things completely unrelated to the real decisions.  Suddenly, choosing between bagels or cereal for breakfast is monumental, mind-numbing, and completely impossible.  I'm stuck.  Lost.

This is where that GPS system would be really great to have around.  Type in the destination ("College Finances") and get specific directions, in a cheery foreign voice, on how to get from here to there.  I could get un-stuck, and I'd know exactly what I needed to do next.  I could go to sleep before 3am, because I wouldn't have to attempt to plan every possible route, figure out how to avoid every potential pothole and roadblock and cliff.  

And if my brain GPS had a "Points of Interest" button, maybe I'd even be able to find out the location of the nearest Margaritaville.

Spiritual Growth

I read a book today.  And it pissed me off.

I love reading, and for me books are as essential as air and water for my survival. I love bookstores, and libraries.  I love the cozy chairs, the little café with overpriced coffee, and the sounds of turning pages.  I love all kinds of books, and have a pretty eclectic collection.  I love using books for research and to learn the ways in which other people live.  I love reading books that connect me with other people living with the same challenges and joys. 

Which is how I found myself in a little wooden chair, feet propped up on a windowsill, in the quiet of the bookstore, reading about a mom and her experiences with her baby girl with special needs.  And it's where I found myself getting really, really angry. 

It should have been a good book.  One of those inspirational books that remind me that I can do this, too.  And I guess it sort of was.  Except for the whole, "my baby is my path to spiritual growth, I was chosen, and I'm totally cool with it" parts.  Which, unfortunately, was pretty much the entire book.  Glossy pictures of mom and adorable newborn baby in the knitted-by-grandma cap.  Lyrical prose about the girlfriends who sit up all night by mom's side, bringing lasagna and beer to the hospital, and saying just how perfect this baby is, and how it's all going to be just fine.  A stoic, but of course perfectly sensitive, dad who doesn't want to learn anything about the baby's condition, but tells mom, "I'll just love her.  When there's things you think I should know, you tell me."  And the mom is perfectly happy with that arrangement. The very worst part, though, is the message:  acceptance takes a year.  That's it, that's enough time.  After a year, you should be doing fundraisers and flying across the country to conferences and advocating at support groups.

Uh, no.  Maybe it's just me, and I hate to think I'm bitter, because I absolutely, positively love J. with every molecule in my body.  But I don't for one single second think she was sent to me for my own "personal growth".  How can that possibly even make sense?  That somewhere in the universe, God took a look at me and said, "You know, I think it's time to shake you up a bit.  I've got a great idea - I'll create this baby with all sorts of complicated medical issues who will have to suffer lots of physical and emotional pain - and I'll send her on down so you can learn some valuable spiritual lessons."  Nope, I don't think so.  Have I learned some of those valuable lessons?  Sure, of course.  But to think that my child's sole purpose on this earth is to make me a better person feels like a major insult to her.  If I don't learn the lessons, does that make *her* a failure?  If she isn't sweet as chocolate cake every second of every day, does that mean she isn't quite living up to her spiritual job?  What if she hates being sick, and doesn't want to struggle in ways other children don't have to?  What if one of the lessons I learn is that this totally sucks?  And if I was "chosen" to have J….does that mean that people without kids with disabilities weren't special enough?  That those moms don't have enough love, or kindness, or strength?  Or does it mean they don't have any spiritual growing to do?  Sure, I can buy that (insert dripping sarcasm and intense eye-rolling).

I believe with all that I am that you can deeply, truly love your child - disabilities, illnesses and all -- and still feel like she got cheated.  I love her, always.  But if you gave me a magic wand and the chance to make her well, I'd grab it out of your hands faster than you could blink.  It isn't her job to help me grow up to be a better person.  It's my job to do every single thing I can to make sure she knows she is loved. 

Anxiety: Applications, Admissions, and Aid

I usually use this blog to write about J. and the medical journey we've been on.  But since September, our household (okay, mostly me) has been consumed with one thing:  COLLEGE.  

My oldest daughter graduates this June, a fact which makes me feel about 1000 years old, with the gray hairs to prove it.  Last year, the reality of this upcoming graduation also ushered in the Era of College Search.  For those unfamiliar with this period of time, there are zillions of books, articles, websites, blogs, and discussion boards that will happily enlighten you.  I'll summarize for you:  unless you are independently wealthy, the Era of College Search is a time-sucking, insanity-provoking, sleep-losing year...give or take a few months, depending on your kid.   

The College Search Basics:

Disclaimer:  Some of the college search is fun.  Most of it sucks.  I'm tired, and cranky, and it's the middle of the night, so I'm focusing on the suckish parts.

Anxiety:  Get used to this feeling.  It will haunt you for the entire process.  You will lose more sleep than the parent of a colicky infant.  You will begin to loathe the word "college" and feel dizzy and nauseated at the mere mention of it.  You will use more swear words than you imagined possible.  You will probably cry at least once (or a dozen times...just saying), and you'll find yourself believing with all your heart that this is your very own circle of hell.  Which, depending on your circumstances, it probably is.  

College Visits: If I could give just one small piece of advice to parents entering the Era of College Search, it would be this:  don't visit schools your kid won't get into or you can't afford.  Because those will be the schools they love.  They will be the schools you love.  And they will break your heart.  When you do visit schools (and you should!), pretend you're not interested in a relationship, that you're just "playing the field".  That way, you can look around, find the "cute" schools, drool over the ones with the fabulous sports field/lab/dorm rooms, all while recognizing that there are, in fact, other schools.  There isn't a perfect school, and anyone who says otherwise is either the copywriter for the school's glossy brochure or a member of College Confidential, the world's cruelest college search website.

Applications: I was one of those parents who swore up and down that I would never, ever, not in a million years, write my child's college applications.  By the 2nd one, I was ready to sneak into the account and finish them all myself.  I didn't...but I wanted to. Even if your child is the brightest, most motivated student you've ever seen, they will likely turn into a procrastinating sloth when applications come due.  Consider the fact that the introduction of the Common App (if you don't know what this is, you clearly haven't entered the Era yet...Google it) means your child gets ONE essay that goes to every single college on their list.  ONE essay.  Which is supposed to demonstrate their amazing writing skills, showcase some heretofore undiscovered unique talent, and impress admissions officers across the country.  No pressure, though.  

Admissions:  Otherwise known as: "They love me..they love me not".  Some schools will accept your child. And some will deny.  (Somehow "deny" is supposed to sound better than "reject".  I'm pretty sure it doesn't.) It used to be that an envelope would arrive in the mailbox, and if it was fat, you could rip it open with some assurance that it contained positive news. If it was thin...well, the only decision was whether to open it now and get it over with, or postpone the inevitable.  Now, many schools are using Portals for admissions announcements.  So your kid -- who probably hasn't had a whole lot of experience coping with rejection -- gets to open an email or a link to a webpage.  There's no warning of what might lie within the mysterious Portal, which makes the opening of it that much worse -- even, believe it or not, if it's good news.  A word of warning about admissions:  if you visit any Barnes&Noble, you will find hundreds of books that tell you how to get into college.  You'll learn about "reach" and "safety" schools, and you can spend entire nights scouring the internet for your child's chances of acceptance at a particular school.  But an acceptance letter is just a piece of paper, and unless your family can pay a hefty amount, or your child has miraculously received a full-ride scholarship, that paper may very well end up in a recycle bin after discovering that "accepted" does not equal "attend".  Which brings me to...

Aid: Imagine yourself in the hotel in The Shining.  You know, that scary movie with Jack Nicholson and the creepy kids in the hallway?  And imagine that somewhere down the hallway -- past the crazy guy with the ax and the "Redrum" girls -- is the money for college.  Basically, financial aid is your worst nightmare.  First, there are dozens of forms to fill out, and they all have acronyms.  Make friends with FAFSA and court the CSS Profile if you have any chance of getting funding.  Also, make sure you have an accountant, a secretary and the numbers of all your off-shore bank accounts before you get started.  (You think I'm kidding, right?  Yeah...I'm not.)  Second, there's a fun thing called a "package" that you'll get from every school.  This isn't like an all-inclusive vacation package (which you will probably want very badly after this process -- preferably a package that includes free alcoholic beverages).  It's more like the gift that keeps on giving...to the college, that is.  Colleges can, and will, mail you thick, watermarked letters telling you how very happy they are that your child has been accepted and how much they want to see your child on campus.  And then they will give you a number -- one that may be enough to buy a nice used car, or even a new one -- and expect you to pay that in the next 10 months.  My only advice here:  Be realistic about what you can afford.  And buy Kleenex.

The moment you enter the Era of College Search, every single person you know will ask, "So, where's (insert child's name) going to school?"  If you are smart, you will never, ever answer this question until your child is safely tucked into their extra-long twin size bed in the dorm room of the college they liked and you can afford.  After that, feel free to post pictures to your Facebook page, buy a t-shirt at the college store, and add those plastic stickers to your car.

Loneliness

What if I dared to count up all the days and weeks spent sitting just as I am now, in a too-large but really comfortable sweatshirt and sweatpants, on the window sill that passes for a bed, with the sounds of IV pumps and squeaky nurses shoes in the background? What if I had to imagine all the days and weeks that lie ahead where I will do exactly the same? To put it simply, I would break.

When the fever spikes, and the pediatrician calls back, and I just know we are headed to Boston again, sometimes it isn't the fear for J. that overwhelms me, but the sadness of time lost. Because every trip here means days apart from my husband and my teenagers. Days that I don't get to sit and watch movies with them, days that they aren't sharing funny Facebook pictures with me, and days when my husband sleeps on the couch because our bed is too lonely.  Sometimes those days inevitably fall on important events. This week, our oldest daughter is heading of on her very first ocean scuba diving trip...an amazing accomplishment and a big step towards her future goal of studying marine biology. And I'm missing the "what do I pack" and "can I borrow her shoes" and the assorted drama that comes with an unknown adventure. This week, my son is continuing to come to terms with the severe injury sustained by his friend, and the fact that she now faces months of rehab. And I'm not there to listen, or explain, or even just keep him from hiding out in his room where worry doesn't have to be shared.  School starts in about 10 days...and I'm not there to check schedules and find textbooks online and remind them about summer reading. And there is no way to resolve the fact that texts and 10 minute phone calls -- most of them spent bitching about doctors or stressing over treatment plans-- don't count much in terms of connecting with your spouse.

And so I worry, and I wait, and I fight off the loneliness and isolation. And I hope that, when we get back, there will be time enough to make up for the days and weeks spent away.

Real or Not Real

(*Spoiler Alert:  I'm about to reference critical scenes from Mockingjay, the final book in The Hunger Games trilogy.  If you don't want to know what happens...skip this post)

I read The Hunger Games trilogy in a matter of days, captivated not only by the exquisite writing, but also by a story that drown me in a particularly evocative sorrow.  I wept as Katniss lost so much, and found courage in her willingness to push forward despite the pain.  I found myself relating to the characters and the story, set in a world where happiness is fleeting, where every decision carries potentially desperate consequences, and where nothing is as it once was.

In the final book, Peeta -- Katniss' fellow victor and friend -- returns to her, but he's broken nearly beyond repair.  Tortured and psychologically tormented by the Capital, he no longer remembers that he loves her...in fact, his every memory of her has been altered so he reacts to her only with fear and hostility.  To help him remember, Katniss and the others create a game of "Real or Not Real".  Peeta asks a question about his memories, and they answer "Real" or "Not Real", to help him begin to unravel what the Capital has planted as lies, and what his true memories and feelings really are.  It's a sad and painful passage in the book, this agony of watching Peeta struggle to know which parts of his world are real and which are only nightmares created by someone else.

So what does Peeta's game have to do with me?  Simple.  I want someone to tell me this is "Not Real".   I want to say, "I remember they told me she needed a new liver"...and I want someone to say "No, that is not how it happened.  That is Not Real".

I've read everything the Google search engine can turn up about J's liver disease.  I've spent countless hours reading other parents' blogs about their child's liver transplant -- some wonderful, some horrifyingly sad.  I've had meetings and appointments and phone calls and email conversations with doctors and nurses and transplant coordinators in two different states, trying to make sense of what I'm being told.  And I hear them, and the part of my brain that is able to intellectualize everything understands them.  I can spit back detailed information about studies and transplant protocols, and I can tell you in minute detail how, exactly, a liver transplant happens.  What I can't do is look at J. and say, "This -- this thing they tell me you have, this transplant they say you need -- this is Real."

And until I can do that, until it feels Real...I am still angry and afraid.

Through the Looking Glass

There's a lot of things parents "lose" when they have a child with special needs. Sleep, disposable income, the ability to be spontaneous...those things are often the first to go, and I can say that over a decade later, I don't expect to find any of them again (though finding some sleep is always a priority!) Still, for me, the loss of those things isn't as great as the loss of perspective. Like Alice falling down the rabbit hole and suddenly finding herself big, and then little...and then utterly lost and in danger of losing her head altogether...I realize that I've completely, entirely lost my sense of perspective about many, many things.

"Rare"...well, there's a word. For people with perspective, rare is a pretty obvious term. It means "uncommon, seldom occuring". Winning the lottery is rare. Getting struck by lightning is pretty rare. But what if, all of a sudden, you were surrounded by people who had both won the lottery AND been struck by lightning? Suddenly, "rare" doesn't mean so much anymore. Most of my friends are parents of children with some kind of special need, many of them children with "rare" conditions. I know that J's condition is "rare"...but I don't know what that means anymore, or if it matters. Some days, it matters a lot -- on those days, I wish she had something "common", something with a website and a support group and a walk-a-thon, something the random woman in the supermarket had heard about once, on a made-for-TV movie. But other days, rare is what's common, because all my friends have rare stuff too.

"Sick"...another easy word, right? Well, not in my rabbit hole. See, when you lose all perspective, than anything other than "in the ICU on a ventilator and dialysis" starts to look an awful lot like "healthy". Some days, when I line up the morning medications and realize they take up the entire counter, it seems like J. is a "sick" kid. And then some days, the doctor calls to say all her bloodwork looks normal, and I think...okay, not so sick. If you've already needed one replacement organ, and you're waiting for another...are you sick? Or not? If you're too tired to go to school all day, but you can manage an hour of ballet...does that make you a sick kid, or not? And what happens when you're the teenage sibling who suddenly gets "sick" (you know, the regular kind of sick, with runny noses and coughing and fevers)? Without perspective, it suddenly becomes a kind of bizarre episode of Mystery Diagnosis, with mommy (that's me!) worrying about all the possible complications while the teens just want someone to bring Kleenex and some fluffy pillows.

"Normal"...that's the big deal word. That's the one I always think is "I'll know it when I see it". But what if you don't? Spend enough time in a Children's Hospital, and you may forget that it isn't "normal" for kids to need to breathe through a tube in their neck. You might forget that the rest of the world doesn't have a vocabulary that includes things like "microarray" and "trough levels" and "durable medical equipment". Despite the fact that I have two teenagers who are, by all accounts, completely typical (special-needs-mom speak for "not diagnosed with anything"), I still find myself stunned speechless by the sight of babies who can walk before their first birthday, and amazed by children who can see well enough to grab the glasses off their mom's face. I marvel at kids who can run, and jump, and swim and speak and write and sleep in on Saturday without having to roll over and take meds at 7am. In my world, it's perfectly normal to discuss major surgical procedures over dinner and to simultaneously pour my coffee while holding an inhaler to my child's face. It's all a matter of perspective...

I think, if it weren't for the Mad Hatter, and the creepy Cheshire Cat, and the Queen who is forever trying to chop off someone's head, Wonderland wouldn't be such a bad place to be. It certainly keeps things interesting, after all! But perspective is a good thing, a necessary thing. It gives us a sense of order and understanding about the world. Losing perspective -- when the big things are suddenly too small, and the small ones too big, and some things are missing altogether -- makes it hard to find your way.

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