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.