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.