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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.

"Friends Support and Ease"

About a year ago, I was going through a rough and chaotic time in my personal life (above and beyond the normal chaos inspired by three kids, job, etc!), and a friend said to me, "Friends support and ease".  It stuck with me, and has often reminded me that getting through the hard times means reaching out, asking for help, and being vulnerable...even when I wish I didn't have to.

This isn't a road I would have chosen, for myself or my child, but I have been amazed by the wonderful friends I've met along the way.  Many of them -- most of them -- are other mothers of children with special needs, or serious health issues, and they've kindly shared with me their stories, their courage, and their collective wisdom in navigating systems designed to frustrate even the most persistent among us.  They are the ones who understand the sigh on the phone that means, "I can't do this anymore", the ones who give me space to vent, to cry and to laugh.  They celebrate with me when a milestone is reached, no matter how delayed that milestone is.  I've met them in hospitals, at Camp, in clinic waiting rooms, at conferences and in the grocery store, and our bonds are formed fast and firm.

I'm often astounded, though, by the other people I've met who "support and ease".  The ones who choose to walk beside us on this road, even though they don't have to.  B., the sweet and kind volunteer from Camp whose perky blond ponytail and captain-of-the-cheer-team beauty pale in comparison to the spark of caring and compassion in her heart.  A., my co-worker whose combination of irreverant humor and spiritual focus has helped me find new ways to cope with the day-to-day uncertainty.  M., who asks all the hard questions, never lets me give an easy answer, and whose midnight conversations often guide me through some rough waters.  There's so many more -- the best friend from high school who has shared 25 years of sorrow and triumphs big and small, the cousins who've become friends and remember to bring chocolate to the campfire, and the friends-of-friends who've brought meals, babysat kids, or just picked up the phone when so few would.

It would be easy to see only the darkness on this path -- the worry, pain, anxiety and fear that are our constant companions.  But these friends, these ones who support and ease, help me to step out of the shadows and remember that joy, laughter, kindness and compassion can also be found along the way.

Anger

One of the dirty little secrets of this world -- the medically-fragile, complex kid world -- is that as moms, we are not martyrs, or saints, or goody-two-shoes who wake up each morning and happily go about the business of keeping our kids alive.  We are, quite often, completely pissed off about it.  There is simply so much about which to be angry in this world!  Anger at the doctors who so rarely bother to hear us, and even more rarely bother to give us answers.  Anger at the way the rest of the world can go out to dinner on a whim, or plan a vacation, or even find 10 minutes to clean the bathroom.  For me, though, the thing guaranteed to set off my increasingly-short fuse is the innocuous comment of "gee, she looks great".

Let's talk, for a second, about how my child (and the ones like her) actually "look" on any given day.  J. is overweight -- a big, pregnant-looking belly that's the result of too many meds and too many illnesses that lead to far too little ability to run around and play.  She's also "dysmorphic", which is fancy genetic speak for "funky looking".  She's totally blind and has a habit of rocking her head that, despite the best efforts (and occasional "you have to try harder") of therapists is still incredibly obvious.  So even dressed in her prettiest clothes, with her hair in a shiny braid, she still looks different.  But that's not the part that makes me mad.  No, what makes me mad is what those "gee-she-looks-great" people don't see.  The way that they can so easily dismiss the 48 hours we spent in the hospital after her 20th (or was it 21st?) surgery, where J. was flushed and feverish, and at almost 10 years old, wanted only to watch repeat episodes of Dora.  The way that those same people can ignore the 15 minute conversation we just had about the 18 meds and 4 treatments she has to have each day just to stay alive. The way that those people can somehow think each surgery will be the one that "fixes" her, each antibiotic will "cure" the disease.  What I hate is what is behind the "she looks great" -- because what they mean, often times, is "what the hell are you complaining about, she's a great kid, she's alive, and she's in school, so how bad can it really be?" 

How bad can it really be?  Well, in the past 10 years, I've learned it can be really, really bad.  And that even when it's awful, even when she and I are both crying during the treatment, even when she's screaming at me that she doesn't want to do this anymore, even when she's so exhausted she sleeps for 12 hours at night....if we can get up in the morning, put on a polka-dot dress and tights with the sparkly red shoes, and make it to school on time...everyone still thinks "she looks great".