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The Moment You Face Your Child’s Mortality

You just read that title and thought “I know my kid is mortal.  I’ve faced this.”  And I would agree with you before my daughter was diagnosed with cancer.   But I didn’t realize what my child’s mortality really was until it slapped me in the face.

I knew, when I got pregnant, that I had this precious life that I had to care for.  It was up to me to keep her healthy and warm and safe.   It was up to me to make sure she grew up into a moderately tolerable adult.  But I didn’t see the forest for the trees. I was too concerned with whether she was walking or talking or behaving the way she was supposed to.  I was too concerned with what school she’d go to and who would be her friends.  I had this image of her walking down the aisle, graduating high school, college, becoming more than me.  I saw into her future and saw nothing but light and sunshine with a few expected bumps on the road.  Her first crush, being bullied by the cheerleaders, the first fender bender at 16.  I expected that.

But then the reality of the situation hit me.  I had a fragile little life in my hands and that could be taken from me at any time for any reason at all.   Tomorrow is not guaranteed to any of us, and that includes our children.  We, as parents, are not programmed to think that way.  We don’t normally think “if today is her last day, was it good enough?”  We think “How is she doing in school, and did she get her homework done?”

We go to baseball games and get pissed when a call is wrong, rather than just sitting back and enjoying the joy on our child’s face for being able to go out there and get all sweaty and dirty.  We get ticked when the basketball league gives out participation medals because the child “didn’t earn it if they didn’t win” rather than just looking at the smiles on the little 5 year old faces as a medal, any medal, is placed around their necks telling them they are special for being.

Facing your child’s mortality, his or her ability to be taken from this world in the blink of an eye, that will change your perception on all of that.  And it all hits in one moment.  One second of understanding and you feel the floor pulled from under your feet.

Mine came when my daughter was 9 months old.  I stood next to a metal crib in the pediatric floor of a hospital following a liver biopsy.  She was still sleeping off anesthesia from an exploratory abdominal laproscopy and liver biopsy done try to to figure out why her liver was failing.  She was getting more and more jaundiced each day, they didn’t know why.  My moment was when the liver doctor said five words that stopped me.

“She needs a liver transplant.”

They would find out later that all this liver damage was caused by a very rare cancer in her liver, Langerhans Cell Histiocytosis, and they would treat it accordingly, putting her on several types of chemo over nearly two years until they found the one that stopped it, leaving her with permanent liver damage, an enlarged spleen, probable permanent immuno-suppression, weak bones, and a totally different life.  But it was that one second that changed it all.

My mom was with me and she says I asked the same question twice and that made her worry that I wasn’t hearing it all.   No.  I heard everything.  I was doing what I knew how to do and being a lawyer.

I can remember the question I asked.  “Will she survive?”  That seemed an important question at the time, as I was seeing flashes of what I thought would be her life running through my mind’s eye.  That wedding.  Those graduations.  The happy, healthy adult woman that looked like me and her daddy with curly hair and big round dark eyes and an infectious smile.

Would I see that smile on a toddler?  Would I get to see it in a kid?  A Tween?  A teenager? Would she get a first recital?  A first crush?  A first dance?  A first fender bender?  Would she grow up?

“Will.She.Survive?”

I asked the question twice, a simple yes or no question coming from a litigation attorney, and I didn’t get a yes or a no.  I got this hemming and hawing around an answer because doctors won’t tell you if your child will survive or if the treatment will work or if the medication is good.  Because, and it took me years to understand this, they don’t know.   But, since I didn’t get a Yes or a No, like my pathetic little brain was demanding, I asked it again.  And they couldn’t tell me.

Because the answer could be “No.”

That was it… the moment when I got it.  My little girl was mortal.  She might not live past the month.  Or the week if her liver totally failed and they couldn’t stop it.  They thought she had some time before total failure, and they would put her on some drugs to help support the liver to get it to transplant, but all I could think of was not going to her ballet recital in four years.  My mind was stuck on her not learning to walk or talk.  I’d never know what her voice sounded like saying “Momma,” or, hell, I’d have taken “Daddy” at that point.

That’s when I realized that the petty stuff, the pretty dresses and whether they earned the medal and the “right call” by the referee and the perfect grades, all that stuff was utterly and completely petty and shallow and not worth my time or hers.   I realized what I wanted was for her to live.  With a smile on her face, for whatever reason she was smiling.   I wanted her to sing off key and get to participate in anything at all and dance when she wanted to and to just open her eyes every morning. I wanted her smile.  I wanted her life.

So yes, most parents understand that their child is mortal and that they have a precious life in their hands that relies on them for their health and safety.  But do you really “get it?”  Do you look at your child and realize that today could be it.   That you might not have them tomorrow?  Are you thrilled for this moment with them?  Do you just aim for happiness right now for that child?

I’m not talking about spoiling them or not disciplining them, because honestly, a spoiled, undisciplined child is an unhappy child if she doesn’t have boundaries and goals.   I am talking about holding your child every day and telling her how important she is to you, how beautiful she is to the world, how great her everyday contribution is to society.  How much her living today is so important and so special.

That’s what facing my daughter’s mortality did… it gave me a better view of what matters, and, even though the cancer has made her life harder, I hope that she can get something positive out of it.  I hope it gives her the ability to just lift her face to the sun, soak in the rays, breathe in the breeze, and experience now for all the beauty that it can be.

September is Childhood Cancer Awareness Month AND Histiocytosis Awareness Month.  If you take away anything from the awareness of these diseases,  take this:  Your child is not guaranteed tomorrow.  So love on them.  Give them hugs and kisses and words of encouragement and let go of the petty, unimportant stuff.  Take that trip.  See the things.  Say the words.   Be mushy and gushy and overly loving.  When she’s an adult, if she’s lucky enough to make it there, she won’t remember the ref’s bad call.  She’ll remember you cheering for her in the stands.

 

 

 

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