What They Said

My girl is in pain. Constant, unrelenting pain. And there is not a damn thing I can do about it.

I am angry. Furiously, overwhelmingly angry. And I try to control it, but it's a battle I'm often losing.

It's been more than four years since I first pointed out to a doctor that she had some weird shaking in her legs. It was from an ankle sprain, they told me, and suggested using some ice and tylenol. It didn't help. The shaking was because she has low muscle tone, they told me, and suggested physical therapy. It didn't help. One night, her feet locked into position, and her brother had to carry her to the car. It was because her shoes didn't fit right and she stood too long, they told me, and suggested a warm bath. It didn't help. After ice skating one New Year's Eve, she spent the next day having full-body tremors, scary enough to send us to the ER. Her spine was too tight, they said, and she should have surgery. So she did. And less than 48 hours after the surgery was over, the tremors started again. I told everyone who would listen - every doctor, every nurse, every physician's assistant - that this just didn't seem normal to me. It was interesting, they said. Maybe a side effect of medication, though no one seemed able to decide which one it might be. I made phone calls. I sent pictures and videos by email. See a neurologist, they said, and so we did.

Dystonia. Myoclonus. That's what we think, they said, though we're not quite sure. More meds. But they didn't work. Give the medication time, they said, and so we waited. And we added more medication. And yet another one. She slept. A lot. Slurred her words. Missed school and plays and chorus concerts and swim lessons and parties. Try more meds, they said. And still, there was pain. So. much. pain. Walking hurts too much, she says. I need my wheelchair, she says. And the school nurse calls, again, to say she needs to go home.

Next week she will get shots in her leg muscles. We'll try Botox, they say. It helps, they say. I want, desperately, to believe it will. I want her legs to be still, her muscles to stop pushing and pulling and twisting her feet. I want her to walk to class without pain. I want her to be awake for an entire day, to stop having to take medication in the middle of the night.

There is more, of course. There is always more. More specialists to see, more tests to run, more questions that have too few answers.

The only answer we have is this one: WDR19. That's the "bingo" to the genetic lottery she seems to have lost. It's the answer to the "what" question, but not a single answer to "why". There's no one else. No other child, or teen, or adult, that's listed in any journals or papers or articles or in some random email from one geneticist to another. No way to know what else there is, or whether it gets worse or better. No other mom to talk to at midnight, when google shows me only the same information I've read hundreds of times, when all the scientific terms blur together and I'm trying to make sense of microbiology and chemical pathways. No super specialist doctor in some tiny European country who knows just what to do. There is only the super specialist doctor here, the one who is doing all the research, who can't offer anything more than what I've already found on my own.

I am not an angry person, by nature. I've never quite been an optimist, either, but more of a "silver linings" kind of person. A "find the gratitude" kind of girl. And oh, I am trying, mightily, to dance in this miserable rain, to believe there is a shiny coat of silver under these storm clouds, to trust that we will keep our heads above these crashing waves. I am trying. That's the best I can do.

Christmas Kisses

Jillian’s skin was warm, her face flushed, and the sound of her cough was enough to have my nerves on edge.  I’d bundled her up and trudged over to see her kidney doctor (I’ll call him Dr. Kelly). Standing in his office, I held her close and hoped he would say it was a cold, or an ear infection – anything but what my mommy-instincts were telling me it was.  But he sat down on the little round stool, looked at me, and said, “I think she has pneumonia, and she’s going to need to go to the hospital.”  It was Dec. 23^rd, 2002.

Since her first Christmas, the one spent in the ICU, Jillian had received her kidney transplant, and while there had been plenty of bumps in the road, she had been mostly doing well.  I was excited to spend Christmas at home, and Kate and Tom were eager to have a “normal” Christmas, too.  The presents were wrapped and tucked away in closets, the stockings were hung by the chimney, and I had every intention of making up for lost time.

“She’s going to be home for Christmas, though, right? Please don’t make me have to tell them she won’t be home for Christmas,” I pleaded.  But wishing doesn’t make it so, and Dr. Kelly – then and now, one of the most compassionate and dedicated I’ve ever met – knew that my deepest, darkest fear was not only that she’d be sick for Christmas, but that she’d need the ventilator, again.  I was, in a word, terrified. 

By the afternoon, Jillian was in the hospital, feverish and needing extra oxygen to keep her breathing steady.  I watched as all the not-quite-too-sick kids were discharged home for the holiday, and I listened to the nurses chatting about how the snow was falling outside.  I talked on the phone with Ken, and my parents, and tried to figure out whether or not to bring the gifts to the hospital.  Mostly, though, I sat with Jillian and tried not to stare at the wavy lines of the machine that monitored her breathing, tried to ignore the fact that steps away from this room was the place we’d spent last Christmas, tried to smile at all the nurses stopping by to visit. 

I heard a knock on the door, and a petite, smiling woman with two children stood in the doorway.  “Hi, I’m Dr. Kelly’s wife, and these are two of our children.  We’re so sorry Jillian has to be in the hospital again this year, and we wanted to stop by and give you these.  We hope it helps, a little.”  She stepped into the room, holding four brightly-decorated gift bags. One for Jillian, one for each of the older kids, and one for me.  The children’s bags had toys, and crayons, and Christmas coloring books, and I started to cry a little.  Then I opened up the bag for me, and simply started to laugh.

Dr. Kelly had been with Jillian for nearly her whole life, and he inevitably saw me at my worst when she was in the hospital.  He knew I pretended to read “real” books while I was actually reading trashy romance novels.  He knew I owned a pair of slippers that looked like cows.  And he knew I couldn’t survive 24 hours in the hospital without chocolate.  And so, nestled in tissue paper in the bottom of the gift bag, was a supply of Hershey’s kisses, with a note that said, “For Mom”.  

25 Days of Christmas

Every mom (and dad) of a child with special needs knows there are days that, just by their location on the calendar, are harder than others.  Diagnosis day is often one of those, certain anniversaries can be others.  Many of those days, for me, happen to fall at this time of year.  In the past, I've struggled to set aside the memories of darker days and tried to focus on the moment, with varying degrees of success.  So this year, I'm going to purposefully remember those days, and all the small blessings that came with them.  So, here's Story #1 on my own "25 Days of Christmas" Hallmark list…

Ice Cream in the ICU

Christmas time in the Pediatric ICU is exactly as depressing as you would imagine it could be.  There are ringing bells and colored lights, sure, but they're all attached to monitors that track every little breath and sigh and heartbeat, making sure that your small, fragile child is still silently sleeping. 

In December of 2001, exactly one week before Christmas, Jillian went into respiratory failure.  She was rushed to the hospital by ambulance, pale as new snow and in desperate need of a blood transfusion.  Within hours, she was on a ventilator and headed for emergency surgery.  She was not, we were told, going home anytime before the holiday.  I haven't yet found a "Baby's First Christmas" ornament that has a hospital crib, dialysis machine, or IV's on it…and yet, that's the one we would have needed.

Late one night, while Jillian lay quiet and still, surrounded by tubes that provided her with life-saving medicines I couldn't pronounce and nutrition I could no longer provide, I put my head down on her bed and cried.  I didn't dare leave her side, still terrified that she would disappear if I so much as walked down the hall, but I was just so tired and hungry.  After a moment, I felt a hand on my back, and someone asking, "Are you okay?"  It was Jillian's nurse, a young man who'd spent most of each night that week caring for her.  "Oh, I'm fine.  Just a little overwhelmed," I said.  He nodded, and went about checking all the numbers and lines on the machines that beeped and buzzed in her room. 

A little while later, I woke to someone tapping me on the shoulder.  I'd fallen asleep in the rocking chair.  It was Jillian's nurse, again, this time holding a giant plate of french fries and a large bowl of ice cream.  He smiled and said, "I know you haven't eaten anything all day.  The other nurses told me so.  And I know you don't eat at night, because I've been here.  So, what'll it be?  French fries or ice cream?"  And then he smiled, and said, "I figured you'd like chocolate the best." 

September 11

In the fall of 2001, when J's condition was rapidly deteriorating and my own emotions were raw and intense, I wrote the following in my journal:

My life as I knew it, myself as I defined it, ceased to exist on that December day (when J. was diagnosed in utero).  It is a terrifying feeling, to not know your own self.  And to feel deeply that there is no good way to come out of this, that "out" does not exist.  I had built a life, only to watch it crumble into oblivion.

Perhaps it is that feeling that pounds through me each time I watch the tape of the towers collapsing. That there is no way to undo the damage, no way to return to what was before.  Rebuilding the towers will not bring back the people who inhabited them.  The brick, steel, concrete will be similar, but never, ever exactly the same.  Leaving the space alone will only stand as a stark reminder of what we have lost.

Even turning back the clock, stopping the terrible thing from happening, would only cover up our knowledge that it did actually happen.  Our memories could not be so easily deceived.  Only marching forward - sometimes stumbling, sometimes resting our weary feet - will do.  There is no way out, under or around.  There is only through, bearing witness to the trauma, ingraining it into ourselves, so that the rebuilding looks newer, stronger, taller, prouder, fiercer than before.

(Editor's Note:  These are my own reflections, at a time when everything inside of me felt painful and vulnerable.  I didn't know anyone personally in the towers, Pentagon, or planes, and I know with absolute certainty that my pain at the time would in no way equal the pain of their families and loved ones.  What I take from this today, 13 years later, is that we can look back - I can look back - and see that we continue to come through this, to rebuild, to be a stronger, prouder, fiercer nation.  And that I am a stronger, prouder, fiercer mother.)

The Story of Us

Now that J. is a teenager who could, at least theoretically, read this blog and her medical website, I’m grappling with the reality that this journey we’ve been on for thirteen years is no longer my story.  Or, at least, it isn’t only mine. 

When she was a baby, I was the one who told the stories about the events that were shaping our world.  The story was shaped by the things that happened to her, but it was told in a narrative about how those things affected me.  In an effort to seek out other parents with similar experiences, I told our story a lot.  I shared it in hospital hallways in the small hours of the morning when I bumped into another bleary-eyed mom seeking the comfort of coffee.  I shared it in Parent Group, looking to both give and receive advice.  I shared it in emails with a parent across the globe when I thought our daughters shared a diagnosis (turns out they didn’t).  I shared it on the special websites created for families going through medical challenges.  And I shared it with friends, and family, and co-workers, and sometimes just in random Facebook posts.  I shared it because I needed to connect, to find support (both for her and for myself), and to keep people updated on her ever-changing medical situation.  Until recently, I believed that her story and my story were essentially pages from the same book.

But they aren’t.  Not really.  Her experiences of the world are, for better or worse, incredibly different from mine.  Even when I am right beside her, trying my very best to understand or help, I simply am not living the same moment that she is.  Hers is a world of sounds I don’t always hear, smells I don’t often notice, and people who are not always kind.  It’s a world where I can hold her hand but I can’t feel the needle going into it.  It’s a world where people talk to her and about her, but they very often don’t talk with her.   It’s also a world full of triumphs that happen outside our four walls – the excitement of doing well on an exam, the thrill of learning a new dance step – and that are celebrated with friends and teachers rather than with me.  It’s also a world in which very personal things must be shared with a select group of people in order to keep her healthy and to help her grow as a person.  But in a digital age (and, frankly, with a mom who talks as much as I do!), that “select group” of people can quickly become a large community of friends, family, and even strangers who know an awful lot about her that perhaps she’d prefer they not know.   

And so I am becoming increasingly cautious about what, when and how I share the pieces of her story.  Before I write something down or share information while on the phone with a friend, I have to think about whether or not she would want me to talk about it in that setting.  Maybe it’s okay for me to talk with my friends when we get together at someone’s house, but it isn’t okay for me to post a picture of her at the hospital on my Instagram page.  She’s made it clear that talking about her medical issues in public places is no longer comfortable, and she wants to find polite ways of saying, “I don’t want to share that right now.”  She’s learning the importance of personal space, both literally and figuratively, and it’s my job to help her set those boundaries.

I have my story to tell, and I believe it’s still important for me to do that.  But when that story is really about her experience, then I need to learn to step back and ask, “Is it okay for me to share that?”…and to respect her if she says no.

Little Miss Attitude

Over the past few months, the Little Miss has developed what I kindly refer to as “sass” (but which is probably better described as “teen with an attitude”). 

Now, I’ve done this teen thing twice already.  I’ve been through the “I hate you” phase, the “don’t talk to me because you totally don’t understand” phase, the “Whatever” and “Nevermind” phases.  And I’m currently deep into the 17 year old “When can I drive the car and why do I need to actually talk to people” phase.  So, I get it.  This is what teens do, and they’re supposed to.  It’s one of those ‘developmentally-appropriate’ things that while annoying, is also necessary.  Independence isn’t easily achieved, for teens or their parents.

So what’s the difference now that Little Miss is 13 and full of her own brand of sarcastic remarks and frequent “whatevers” ?  Simple.  I didn’t expect it.  For a long, long time, I didn’t even think we’d see her be 13.  (Years and years of words like “life-threatening” and “uncertain prognosis” tend to put a damper on imagining your child’s future).  And when I started to believe that we would, eventually, have a teenager on our hands, I couldn’t quite imagine what that might look like for her.  She’s still dependent on us in a lot of ways, and she’s always been a little behind when it comes to social and emotional development.  She misses the visual parts of being a teenager – like knowing what everyone else is wearing, or who the cute boys are – and I wondered if she would even care.  And I didn’t really know any teens with disabilities, and certainly none with her particular set of challenges, so I had basically no frame of reference. 

Turns out she’s pretty much like all the other teen girls.  She alternately wants to curl up next to me on the couch or spend hours in her room away from me.  She loves to shop and would happily spend hours in a shoe store.  She hates when I pick out her clothes, and she’s informed me that parts of her wardrobe are not middle-school worthy.  She struggles with homework, but balks at any offer of help from me.  She can remember everything her friend said in math class, but has 5 coats stuffed in her locker because she keeps forgetting to bring them home.  She handed me a detention slip one afternoon, and casually informed me that “all the kids got one, so it’s not like it was my fault”.  She’ll turn any argument with her brother into a chance for all-out war, and when it’s over, she’ll ask if she can have some of his chocolate bar.  She wants to help with the dishes and put away the laundry, unless I ask her to, and then she suddenly has lots of homework to do.  She knows what WTF means, and she cracked herself up when she dared to actually tell me.  And, despite the fact that she can’t see – has never seen – the typical teen facial expressions, she’s managed to perfect the sarcastic eye-roll, the I’m-so-much-smarter-than-you smirk, and the if-I-cry-will-I-get-my-way pout.  She’s also a master of the exasperated sigh. 

She’s 13.  At least once a day, she drives me crazy.  When I told her tonight that it was time for bed, I got a snarky “whatever” in response.  She is, as I’ve pointed out to her, just like her sister was at this age. 

And isn’t that just the most amazing thing? 

The Great Weight Debate

I spent the day with a group of intelligent, articulate, educated women who work hard as teachers and spent their summers doing lots of interesting things.  And do you know what they talked about?  Diets and exercise.  So, here's my rant of the day: 

I don't care what you eat.  I don't care if you ate a whole sleeve of Oreos for breakfast this morning, or if you baked a gluten, dairy-free, organic muffin.  I don't care if you're vegetarian, or vegan, or if you're trying to break a world record for eating the most bacon.  I don't care if you're going Paleo, or if you've been on Weight Watchers for 5 years.  I don't want to know how many points are in the sandwich you brought for lunch, or if you made a beet and spinach smoothie instead.  If you like what you're eating, if it works for you, keep on eating it.   

I also don't care about your exercise plan.  I don't care if you walked 5 miles, did Zumba 10 times last week, or achieved a new CrossFit goal.  I don't care if you've run 12 marathons this year, or if you sat on the couch all weekend watching chick flicks.  Really, I don't.  If it makes you happy, if you're loving it, great - keep on doing it and have fun. 

I don't care how much you weigh.  I don't care if you lost 4 pounds last week, or if you weigh 50 pounds more than you did before giving birth.  If you're happy with your weight, great - I don't need to know what it is, because if I like you as a person, I don't give a damn what the package looks like.  If you're unhappy with your weight, talk to a doctor, or a nutritionist, and let them help you.  Because if I like you, I want you to get good advice from people who know what they're talking about to help you be the healthiest you want to be.

Here's why I don't care:  Because you're more interesting than that.  You probably have a hobby that I'd love to hear about.  Maybe you raise miniature horses, or go cave-diving, or knit sweaters for shelter dogs.  Or maybe you read a really great book lately, or saw an interesting play.  Maybe you connected with an old friend, or had a long talk with your grandfather.  I can practically guarantee that you did something far, far more interesting than having a nervous breakdown about eating ice cream with your family. 

The men I know don't do this.  They don't bemoan the fact that they ate a bag of chips while sitting on the couch watching 6 football games on Sunday.  They don't sit around in groups talking about how much they weigh, or the latest diet craze.  I know, for the most part, they care about their bodies and about taking care of them - but they aren't obsessed with it.  Maybe they're obsessed with cars, or movies, or sports or micro-brewed beer…and those are the things they talk about.  On Facebook, men don't post a whole lot of self-loathing things like, "I can't believe I went to Starbucks.  Gonna have to spend 2 days at the gym!"  Women do.  All the time.

My women friends have fascinating lives with lots of amazing stories to tell.  So tell them.  Share them.  Let's do lunch, and talk about everything except the food on our plates.  Let's have coffee (or green tea or hot chocolate or ice water) and watch our kids play tag on the playground.  Let's tell those stories about the that one time when we (insert embarrassing adventure) and laugh ourselves silly.  Let's do those things, instead.

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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The Refugee Years

When J. was an infant, on dialysis, receiving daily intensive Early Intervention services, our family lived what we now call the "refugee years".  My husband and I took turns sleeping on a recliner in J's bedroom to monitor all her medical equipment (dialysis machine, feeding pump, and assorted positioning pillows).   On a good night, we'd each get about 3 hours of sleep in between alarms. Her brother and sister, then ages 4 and 6, slept on mattresses on the floor of the 2nd bedroom.  We were sleep-deprived, frightened, and coping with untold levels of stress.  At the time, of course, I thought we were coping well.  The older children made it to school every day, dressed and with at least most of their school supplies in a backpack.  Dinner was on the table at night -- mostly pasta, or pancakes, but dinner nonetheless.  We even made it to the library for story hour once in a while.  But one day, I took out the pictures from that time, and I saw my son's face staring out at me.  It was Christmas morning, and he was standing by a brand-new bike.  What struck me first was his smile -- a tremulous, tentative smile, that looked like it could just as quickly turn to tears.  It was his eyes, though, that led me to dub that time the "refugee years".  His eyes were full of sorrow, a boy trying so hard to believe in the magic of a new bike under the Christmas tree, while struggling to understand why his baby sister was spending *her* Christmas in ICU.  He looked, truly, like a child who'd lost all he'd known -- and in many ways, he had. 

Lately, as J's illnesses and hospitalizations have accumulated in both duration and intensity, I've been thinking a lot about those "refugee years".  We're all certainly older, wiser, and more experienced now.  We've developed strategies to cope with tough times -- family movie nights when J. is too sick to go out, Sunday football while her treatments run -- and we've developed an irreverent, unique sense of humor about the situation.  And yet, despite all that, there are days that I see that look on a face, the look that says, "I'm lost, and I don't know what to do".  Sometimes I see it on my daughter's face, the anxiety when she sees me grab the thermometer, or hears parts of a conversation with a doctor.  Sometimes, I see it on my son's face, when he wants to read to J., but she says, "I'm sorry, I'm too tired today."  And sometimes, I see it on my own face, in the mirror, when I put on the make-up to hide the evidence of another sleepless night.

We're no longer refugees, forced to flee the "Land of Normal" with our meager resources.  We're stronger now, and we've built a life and a home on this, the Other Side of Normal.  I'm proud of that, proud of what we've all faced and fought, proud of what we've learned.  And yet, we've come to realize that it's never a good idea to get too comfortable in your spot on the Other Side of Normal either…because just when you think you're all settled down, change comes along and forces you to move just a little further past your safety zone.   

A Life Fully Lived

As I write this, I'm sitting on the window seat of J's hospital room, staring out into the darkness of a city that's seen more than its fair share of my tears.  I've spent part of this evening reading other mom's blogs, the ones who write gushing, sweet stories about how they've risen to the challenge of their child's condition, how they love their life *exactly the way it is*, how they wouldn't change a thing about their child with special needs.  Well, that's all wonderful and heart-warming…but this blog isn't going to be like that.  Not today.

I've spent the last 5 days watching J. battle fevers that raged, unrelieved, for hours.  And I've faced, yet again, the discussions with the doctors about how "complex" she is, how difficult it is to diagnose and treat her ongoing illnesses.  Mostly, though, I've spent the last few days pondering what it means to have a child with a condition (or, in J's case, multiple conditions) that are defined as "life-threatening" or "life-limiting".  Clinically, those terms are simple – terrifying, of course, but also easily understood.  J's diseases – separately or together – have the power to threaten her physical ability to survive.  But J., like all of us, is more than just a physical being.  And a life-threatening disease poses danger to all of her life – the whole of who she is, or who she could be.  J's diseases steal life from her in little ways every day.  J's life is threatened, and limited, because these diseases take away the moments that should make up a childhood – Easter egg hunts, birthday parties, summer days at the beach and exciting first days of school.  This year, all those things have been taken from her.  And that doesn't include all the stolen days, weeks and months that have come before – Christmas at home with family, sledding down the hill with brothers and sisters, fireworks on the 4^th of July and school field trips.  Individually, each thing is small, and some easily forgotten.  But taken together, the limits placed on her life are overwhelming.  At 10 years old, J. is beginning to understand that she ought not to anticipate an event, an outing, a party, or even a lazy Sunday at home, because all of those things can be taken away with the smallest of symptoms.  On those days, it isn't her body I worry about so much as her spirit.    

For 10 years, J. has fought to have a life.  Not just to live, but to have a *life*.  And when I see what these diseases do to her, what they take from her, I find myself waging a wild, internal temper-tantrum at the unfairness of it all. 

I am grateful beyond measure for the life she's been given, and I revel in the moments when she does get to live that life the way a child should.  But as I looked at the pictures friends shared of their children climbing the steps to school this past week, or enjoying the last days of summer this weekend, I had only to turn and see J., covered in cold packs and cloths, IV tubing running from her hand, to realize once again the reality of a threatened life.

A Reason...or an Excuse?

I've spent the last few weeks trying to juggle work issues, plan for back-to-school and tackle the unending list of activities, fundraising, and meetings required of me as the parent of two active high-school students.  During this time, J. has also been ill, necessitating numerous phone calls and visits to the doctors.  And while I'm busy doing a lot of things, I don’t feel like I'm doing any of them well. 

The question I continue to ask myself daily is:  Am I using J.'s disabilities and medical issues as an excuse to "get out" of time commitments, or is the fact of her issues a real reason why I can't commit to things the way other parents might?  I don't know the answer to this, and I suspect it's a bit of a gray area on any given day.  When the theater production needs parents to build sets for the play, and I say, "Sorry, I can't, it's J's treatment day", that feels like a reason, not an excuse.  But when the youth group needs another mom to chair the fundraising committee and I say, "J's been sick lately, and I'm not sure I have the time,"…well, that feels a bit more like an excuse.  And when I look around me at the moms of children with special needs who are lawyers, and doctors, and those moms who speak to their Senators, campaign for change, and travel to Washington to make sure legislation relevant to our kids' gets attention, I feel like I'll simply never measure up.  I sit and wonder how it is I could carve out more time for these important activities, yet just the thought of adding anything more to my plate exhausts me.  But somehow all these other moms manage it…so why can't I?

At the heart of it is my fundamental belief that nothing I do will matter as much as spending time with my kids, and that J's needs are significant enough to warrant my full attention and dedication.  There's also the secret worry that my time with J. is limited, and I fear regretting moments spent away from her.  But is that perception real, or just the product of a decade spent in and out of hospitals and clinics?  There are days when I feel the full impact of J's many diagnoses and disabilities…and days when I think that her issues pale in comparison to the many other children with special needs I know.  Some days, I feel consumed by the level of time and energy it takes to manage her care, and on those days adding one more thing – however "normal" it might be – is beyond me.  There are other days, though – days when we are swimming in the pool, or playing games at home – that I think just how very normal our lives are, and on those days, it would seem simple to take on a bit of extra work. 

So perhaps the answer is that there is no answer.  Some days, I have a good reason…and some days, I'm just making an excuse.

Ordinary Joy

Like any self-respecting mom of a child with special needs, I know all about Holland.  I know there are supposed to be tulips and windmills -- I can't often find them, but I know I'm supposed to discover them somewhere amongst the syringes, IEP notices and medical binders that litter my child's room.  I know those tulips and Rembrandts are supposed to remind me that there is still joy to be found...but where?

For me, joy is in the ordinary moments.  Watching J. drink her favorite vanilla milk at Starbucks while the teenagers chatter about frappacinos and lattes.  Cranking up the radio in the car while we all belt out the lyrics to a silly Broadway showtune -- how could I not grin like a fool when I hear the three of them singing "Popular", in harmony?  Sitting around a campfire with her on my lap, cuddled in warm blankets, eating gooey marshmellows and melted chocolate.  Listening to the sound of her brother's voice, the way he describes each scene for her, as he reads to her from his beloved Harry Potter books.  Peeking in her room to find her sister patiently showing her how to put on strawberry lip gloss. 

Those moments aren't about special needs or chronic illness.  These moments, these ordinary joys, are the ones I store carefully and neatly in my memory. 

     

Balance and Chaos

Years ago, when I was first trying to make sense of the life I'd been thrown into, I found myself scouring the library for the book that would tell me how I could make it all work. What I found was Barbara Gill's Changed by a Child, and the story of the box.  In this small book written by and for parents of children with special needs, one mom wrote: "We live our life in a box.  When our child is well, when her health is stable, we can move freely in and out of the box.  We can visit family and friends, enjoy the park, and live our lives as normally as possible.  When our child is sick, though, the lid to the box slams shut.  We can see out through the small holes in the box, and know that there is a world beyond the box.  But we cannot live in that world."

In the years since I've read that book - one I come back to often, when I need to remember I'm not alone - I've discovered the truth of that life in a box, and the struggle that comes from trying to live both in and out of it.  When J. is well, especially when she has long periods of what I call "baseline health", life feels surprisingly normal.  She and her siblings go to school, we plan vacations to Maine, and I settle into a busy-but-typical routine of work and home.  I'm lulled into thinking that I can do it all -- work full-time at an intense-but-important job and keep up on all the myriad tasks of managing her care.  And then, when I least expect it, the lid of that box slams shut.

When the lid is closed, the idea that I can do it all -or do any of it with any kind of success - seems like a ridiculous joke.  Whether J. is in the hospital, as she is so often these days, or just too fragile to attend school, someone needs to be with her at all times.  We have no nursing care (by state standards, she's not "sick enough"), so the responsibility of that falls to us.  And as her mother, my instincts, my driving need, is to be with her.  So the precarious balance of work-family-chronic illness collapses, and I'm left with trying to explain to my boss and my clients why I'm not available, again.  Why I can't just "find a sitter", or just send her to school so I can work.  More importantly, more intensely, though...I'm left trying to figure out if the balance was ever achievable in the first place.  I'm left with the reality that, no matter how much I love my job, or how important it is, it's always going to be outside of the box, and when the lid slams shut...the things inside the box, my family, are what matter most.

"Breathe First, Cry Later"

As a kid with complex medical issues, J. has been subjected to literally thousands of needle-sticks over the years.  As an infant, she'd rail against this invasion in typical baby fashion, with ear-piercing screams, kicking legs and howls of protest giving way to angry sobbing.  Around age 3, she became resigned to these incessant pokes, and began calmly holding out her arm for the needle, sometimes even directing the unlucky phlebotomist on how to do the procedure: "Don't do that 1-2-3 thing, it annoys me.  And use a little needle, because my veins are really small."  Once, after being subjected to multiple attempts to collect blood for labs, she sighed loudly, and exclaimed, "Oh, why don't you just let me do it myself!"  She's been described as mature, stoic, patient and brave.  Because she's what's politely referred to as a 'difficult stick' (otherwise known as "oh, god, are we even gonna find a vein in this kid??"), she's mastered the art of yoga-breathing her way through the pain of needles in her wrists, thumb, arms, fingers, back and legs.  But even she sometimes reaches a limit.  And so, when the tears well up, and I know she's inches away from a well-deserved scream-and-cry, when the needle hurts too much and the nurse is on her 10th attempt to find a vein, I tell her that we will "Breathe first, and cry later".

It's a good strategy for me, too, I've discovered.  Because while I don't feel the pain of the needle, I feel the pain of not being able to help her, and I worry about what the results might show, what scary bacteria or viruses might show up this time to try and steal my baby from me.  And I want to cry, and fall apart, and yell that it's too unfair.  And at 3am, when I'm staring at the screen monitoring her vital signs as she lies in the Intensive Care Unit, I want to give in to the panic and weep.  First, though, I remember to breathe.  To sit, and just be in the moment, however hard it is. 

When I can be alone though -- in the hospital bathroom, or the garden, or even in a resident-free stairway -- then I can cry.  I cry for her, and all that she suffers.  I cry for me, for the overwhelming sense of fear that I live with in those moments. And I cry, too, knowing that this isn't the last time I will have to remember to breathe first...and cry later.