A Visibly Beautiful Family

When beginning this blog, I didn't know what direction it would take.  After a decade of hospital work there were so many stories to tell, an endless backlog of small, moving moments. It was hard to start with anything, for fear of missing out something, or perhaps, for fear of being overwhelmed.

I'm really not into the maudlin.  Honest.  I'm not trying to make anyone cry, and I learned awhile back that Survivor's Guilt, in its various guises, has nothing positive to offer.  But now that it has a venue, the here-and-now campaigns urgently to reveal itself.

Here is today's story.

M lies in her mother's lap, her eyes nodding, sometimes rolling, upward and back, trying in vain to focus ahead of her.  Her limbs are heavy, flopped down beside her flaccid body.  She loves attention but cannot maintain eye contact, cannot lift her arms out to reach another. She does not talk, can barely form a smile.  A rare genetic illness has robbed her nervous system of control over her body, and her muscles have atrophied.  She is nearly five years old.

I enter the outpatient waiting room.  M's mother catches sight of me and we share a moment, both our faces lit up in mutual recognition.  How nice to see you, I begin.  It's been so long.

Actually, it hasn't.  She gives a sad smile.  This month we've been here every Sunday. Nobody sees us.  We're the invisible family.  M is the invisible girl.

I'm stunned.  I try to think back...  How could I have missed them all this time?  I make a quick calculation.  Last Sunday I didn't come in to the department.  The week before that? Too long ago to remember.    I'm sorry I missed you before, I tell her.  There's not much else to say.  Lame excuses certainly won't do here. 

It's no use.  Murphy's Law has demanded that I be called away at that moment on urgent staff business. I excuse myself, privately committing to return and sit with this "invisible" family before the day is through.

Sometime later -- but not much later -- I make my way back to Outpatient.  It's a Sunday, and the department is overflowing with hematology patients.  Before I can be pulled aside by a familiar kid requesting a puzzle, or a concerned mother inquiring after her daughter's studies, I beeline it for a smallish patient room at the end of the hall.

So, how are you these days? I ask M's mother, as I reach out to take her hand.  She is doing all right, she tells me.  Her life is taking care of M.  That's all she does, all she wants to do.  I listen, and the questions takes form inside... I hesitate, but something inside pushes a question out. What happens when you need a break? Who relieves you?  She smiles.

My sister, if I need to go somewhere for a few hours.  Or if M can't fall asleep at night, I wake my sister at 2 a.m. and she takes over so I can sleep a little.  But that's it.  That's all I need.  No one else knows how to take care of M like I do.  

I don't need a vacation.  Seeing her smile at me, knowing that she's comfortable and free of pain, that's my vacation.  The only one I need, for as long as she needs me.

M's mother continues.  She has four daughters -- the oldest is in medical school, the second youngest still in high school.  I am a mother of girls, she tells me.  I love being a mother of girls.  Once, there was a son.  He left them seven years ago, at age four.

G-d gave him to us, and then He took him back.  We pray for him, and he is Up There, praying for us, all the time.  We celebrate his birthday, every year. We pray and we have a cake.  I am very proud, that we had him, and that we could give him back.   I know he takes care of us from Up There.

M's mother relates all of this clearly in a sincere expression of love and understanding, devoid of irony or sorrow. Her life is full of meaning, as her son's death continues to be.  

I listen.   I am awed and bewildered by her clarity of purpose.  

And then, at that moment, life goes on.  Two women come into the room to say hello, and a mother's conversation ensues.  A joke about M's diaper peeking out from over her pink jumpsuit flows into an earnest discussion of the deplorable popularity of low-rise jeans that do little to cover one's undergarments.  No one is embarrassed these days, they lament. What is the young generation coming to?

I excuse myself to go on with my workday, and, eventually, M returns home, still in her mother's arms.

Keep the balance,

ALN