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.