"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".

The Dark Side

One of the things I wish people could see is what it's really like to live with and raise a child with complex medical issues, especially when that's combined with a disability.  J. has to get treatments every week to help provide her with an immune system.  "Treatment" seems a fairly innocuous word, but what it really means is four needles -- 2 stuck in her back, 2 on her inner thighs -- and about 3 hours of lying around while blood product is infused.  It also means wrestling her in to a nightgown, fighting about where the needles are going to go, and explaining to the teenagers, for the ten thousandth time, that no, I cannot make dinner because right now I am busy.

J. is nearly 10 years old, and in many ways, is just like every other ten year old girl -- a little bit of attitude, some push for independence.  But in lots of other ways, she's like an overgrown toddler.  She still needs help to get dressed (try putting a leotard and tights on a very large sack of potatoes, and you'll get a general idea), needs help bathing, and can't have unsupervised playdates with new friends, because she can't navigate stairs on her own, needs help in the bathroom, and doesn't always understand social cues.  She also has meltdowns much like your average 2 year old.  Trying to calm a screaming, sobbing, snotty-nosed 90 lb. girl down in the middle of the mall is pretty much guaranteed to elicit lots of stares, reminding me again just how NOT normal my life really is. 

Most moms I know are completely exhausted between the demands of caring for their homes, their children, their spouse/partner, and their jobs.  Moms of kids with special needs live with a level of exhaustion that literally defies explanation.

Letting Go

Everyone has to learn to let go, at one time or another.  We let go of a hand to take that first step.  Let go of home so we can travel.  Let go of freedom for the gift of having children.  Those of us raising children with complex medical needs sometimes have even more to let go.  We let go of the dream of a healthy, rambunctious child, of the ability to live as others do.  And sometimes, we let go in the deepest, saddest sense, too, when "letting go" means "saying good-bye". 

It's been a year of good-bye's for me, all of them difficult in ways I never could have imagined.  A year ago, R., a beautiful 9 year old boy with a smile that defined the term "imp", suddenly died of his disease...a disease he shared with many of the children I know, including my own child.  R's death was my first experience with the loss of a child, and it tore at me.  The sight of his parents, and baby sister, making the words "grief-stricken" seem immeasurably inadequate.  The shock of seeing a little casket lowered to the ground, the days I spent weeping for a boy I knew only from summer camp.  And then Y., 10 years old and my best friend's daughter, a girl who shares so much in common with my own little girl, died in June, at home in the arms of her family.  A more expected death, perhaps, but no less agonizing in its reality.  I learned, again, how to grieve for a child, this time one I'd known since she was a darling 2-year-old in a charming pink hat, holding court in her hospital bed after the transplant where we met.  I learned how to sit with a mom who has lost her child, who has known, always, that she would lose that child...and who now must cope with the fact that knowing doesn't ease the pain.  And through both of these experiences, I've had to face again the reality that my child, too, has a life-threatening disease.  She has survived so many times when doctors said she couldn't...but there is always, always the fear of the time that they are right. 

Death is not the only loss, though for me it has been the hardest.  But saying 'good-bye' to a friend as he moved away brought a different kind of sadness.  The sadness of losing someone who understood the fears, and of seeing that change, even when we least want it, is inevitable.

It has been a year of grieving, of trying to find the small moments to celebrate, of discovering that faith alone is not enough.  A year of trying to understand the impossible, a year of learning to let go.   

Worlds Colliding

For those of us who parent medically fragile children, the world can shrink to the size of hospital room quicker than you can say "flu season".  Having lived in this world for the past almost-ten years, I'm familiar with its rules, its social norms, and its language...everything from where the best cafeteria food can be found to how to speak medical-ese without sounding like a know-it-all doctor.  I'm comfortable here, resigned, if not content.  I know my fellow citizens -- the other mothers of children with transplants, and tubes, and diseases-you've-never-heard-of -- and I've learned my way around the often scary landscapes.

Enter the normal world.  I don't understand it anymore, but as the parent of two perfectly typical teenagers, I'm required to spend at least part of my time navigating this world of "normal".  In that world, moms do not talk about their kids' latest blood levels, or use phrases like "that's a PRN med for her left lower lobe pneumonia".  Moms in the normal world volunteer to build sets for the school play, to count money at the bake sale, to host impromptu pizza parties and sleepovers for unknown friends of the teen.  These normal-world moms do not precede every sentence with, "As long as Jesse isn't sick..." or ask the vaccine status of the friends.  And so in the world everyone else inhabits, it is I who am the alien. 

Like my teenage children, I want quite desperately to fit in.  And so I show up at the parent meeting, hoping to "pass" as normal.  But amidst talks of the family vacation to Europe (impossible, since international healthcare is a system I'm not willing to navigate) and college financial planning (my kids' college funds were long ago spent on thrice-weekly travel to the transplant clinic), I feel like an absolute outsider.  I crave the familiarity of my alien world, the companionship of those who understand, while at the same time waging a internal battle of wanting so very much to belong in this land of normal, too.

And so I watch the clock tick yet another midnight as I wonder, again, how to balance a life lived in two worlds...

Why Midnight

There's something about midnight that makes it the perfect time for thinking deep thoughts.  As the parent of a child with a chronic illness and disabilities, I find myself awake in the wee hours of many nights, attempting to catch up on all that remains undone or just to catch a few moments of silence in the otherwise chaotic hours of the day.  There's something about midnight that allows us to say things we might not otherwise, to reveal our thoughts and feelings, certain that the secret moments between one day and the next will somehow protect us.  And so this blog is a place for me to say the things I might not otherwise, to speak my mind, share my fears, express my joys and sorrows.  Perhaps no one else but me will care what dreams, wishes and secrets float through my mind in the darkness, but perhaps there's a few like me, who find themselves alone in the dark, wondering how they ended up in this particular life.