Posted by: Kate | January 10, 2009

“I’ve Hugged You Enough Already Today.”

The child was crying.  Alligator tears and fake sobs, designed to get attention.  Another child had fallen down and hurt his elbow, and received snuggles in response.  She saw this, and soon after deliberately flopped to the ground and wailed loudly.

The gathered adults recognized the dramatic flair of the act, and smiled at her, even chuckled a bit.  She had already had a legitimately bad time earlier in the day, and so her ability to play it up a little now was reassuring.  Having the energy to play it up meant she was feeling better than her earlier, pale, couch-draped self.

As well, it must have been a confusing time for her.  There was company in her house, six strangers in a home that rarely held non-family visitors.  Some of those strangers were close to her age, and this was both enticingly fun and vaguely threatening, because they wanted to play with the same toys.  Others were grown-ups, talking to her parents.  A difficult set of circumstances for any kid to navigate, and adding in the serious developmental disability and the life-threatening illness creates a nigh-on impossible scenario.

Nobody will ever tell this child that life is fair, even for a moment.  Because she is living, breathing, precious, beautiful proof that it is not.  One extra little chromosome should not result in that many potential extra difficulties in life.  She had passed the hearing and the vision tests, had dodged the specter of diabetes, had avoided the gastrointestinal problems so commonly associated with Down Syndrome.  But she got hit with the big, nasty, horrible one.  Anyone who insists that life is fair has never given a moment’s thought to the fact that there is a higher-than-normal prevalence of leukemia among people with Down Syndrome.

“Unfair” doesn’t begin to approach the situation, really.  Especially when the diagnosis came before she was two.  Especially when the chemotherapy will continue for another six months.

And yet, because sometimes life is not fair in a positive direction, as well, she is happy and sweet and lovely.  With the normal irritating toddler mood swings and demands, but even that normality is precious, in its own way.

So she tapped into her inner drama queen, and threw herself into her father’s arms.  One of the adult visitors offered to hold her, an offer promptly and decisively declined by the child.  “No.  Mama,” she said, and reached toward her mother, still several feet away and in the middle of a separate conversation.

With the skill that mothers develop after several consecutive years of splintered concentration and interrupted thoughts, the woman turned to the child and replied immediately.

“Not right now,” she said.  “I’ve hugged you enough already today.”

The child elected not to accept this as a final verdict, and lodged a formal, plaintive complaint in the form of a new wail.  Less loud this time, and more authentic.  The mother relented, leaning over to take the child into her arms before resuming her talk with the other visitor.  The general flow of chat returned to the room, and the incident faded.

Until later, when everyone had gone home, and two of the visitors indulged in the inevitable replaying of the evening’s events.  There was the deliberate insult from one person to another, finally dealt with after a series of previously unremarked incidents.  There was the odd and somehow brittle behavior of one of the men.  And there was this strange, uncomfortable moment between mother and daughter.

On the one hand, they agreed that, from their own parenting philosophy, there is no time in the life of a child when a parent should openly and directly refuse the opportunity to comfort.  To overcorrect would be wrong, too, of course; life has to go on, without spending every moment of every day desperately trying to soak up the wonderfulness and perfection inherent in every moment, because if you spend all of your time trying to appreciate every moment then you’ll end up missing the moments.  Parents need to have their own lives, their own personalities, and they don’t need to lavish attention upon their children at every miniscule possibility; that’s a setup for exhausted parents and overindulged children, and creates a standard that is impossible to maintain and, therefore, imminent and unavoidable failure and guilt.

But when a child needs a hug, no matter what the reason or even if there is no reason at all, then the child gets a hug.  To the extent possible, the philosophy even extends to a preference that the parent never be the one to end a hug.  Sometimes it’s not possible, and life goes on, but the ideal has been set: if a child needs a hug, the child gets a hug, and she gets to hold on just as long as she needs to.

This applies to any child, any circumstances.  It could be a perfectly normal teenager who is an otherwise unbearably snotty individual, or an overwrought eight-year-old trying to navigate a complicated world of right and wrong, or an overstimulated toddler looking for attention.  Whether the child has an illness is irrelevant, although it makes a refusal of comfort just a little bit harder to watch.

On the other hand, they had to admit, they couldn’t imagine what this mother has been through in the past four years.  They don’t know at what point she learned of her daughter’s diagnosis, or the exact nature of the cancer.  They can’t know what it is like to live a lifestyle in which every room in the house is equipped with several hand-sanitizer pumps and a nurse visits every other day to administer chemotherapy to a toddler unable to articulate her own name.  They can’t imagine the emotions this woman has already experienced and survived.  She has always appeared a bit aloof, a bit reserved, and now it is clearer why this is so, but much more about her remains unspoken and not understood.  And, apart from her unfathomable experiences, they don’t know this woman’s parenting philosophy.  Perhaps it is entirely different, and yet still effective.

The visitors were left unsure how to feel about it all, with uncomfortable new thoughts and sadnesses to sort through.  The one thing they could be sure of was that the moment was sad and strange.  And they hoped to never say the same words to their own children.

“Not right now.  I’ve hugged you enough already today.”

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Responses

  1. Yeah, strange.
    But like you already said, everyone is allowed to make mistakes and say something stupid, even parents with very ill children. Hopefully, it was just a mistake.
    Personally, there is nothing in this world that gives me more–everything–than hugging my boys.

  2. This hurt my heart. Hugs need to be, always, bottomless and unconditional and (this is the wrong word) infinite.

    (also? had to come over to tell you that your comment chez moi kinda blew my mind. in a good a way. it helped. ;))

  3. Strange yes, perhaps the mother is afraid of losing her child and has already started withdrawing? But hopefully mom was just tired and had had enough for the day, and regretted saying it soon after it was said.

  4. Sounds like a tired mom, but those words stabbed me in the heart too…let’s hope the child doesn’t remember them.

  5. I agree with Jackie – hopefully it was just a tired mom.

    But, sounds like the time I heard another mom talking about her 14 year old, who was having some behavior issues at school. “I just don’t have time for this crap he’s pulling.” And that made me sad – there is always time for your children…..and hugs too.

  6. My DD never was a “huggy” sort — don’t know if it was due to those first two months in NICU or what. It’s a rare, rare occasion when she will “consent” to be hugged now, at 13.

    One (very small) consolation — it is unlikely that the little one really understood that she was being snubbed, and even less likely that she would remember.

    And yes, it’s not difficult enough that Down’s kids have to deal with GI and cardiac and lung problems (I see a LOT of them in my practice), but they have that propensity for leukemia as well. I remember very well one of my favorite kids, who’d had two major cardiac surgeries, only to get the leukemia (and NOT the more easily treatable kind) at the age of 4. Heartbreaking.

    As was your story. I’d dearly love it if my DD EVER asked for a hug!

  7. Usually the leukemia survival for kids with DS is very good.
    I suspect that the mom was simply exhausted.

  8. Ok so I thought about my response and even though my position won’t be popular I’ll post.
    I understand the mom though maybe her word choice was not what she truly meant. Yes she is tired and froma whole new world of tired. Holding your child as they cringe in pain from the medications, the sticks, the pokes and the prodding. Listening to all of the advice because everyone else knows what the text books says that your child needs or is but they don’t know your child. She has wrapped her brain around so many disappointments from the pregnancy and a child who is Downs to the additional complications that MAY or MAY NOT come with a genetic disorder and then something else happens. She has advocated which was in arguments or calm discussions. She has second guessed every decision she ever made from puberty on (IF did not do ________ ‘X’ wouldn’t be sick.) The list goes on and on and the thing is, it doesn’t stop ever!!!! Your heart hurts because unlike a “healthy” toddler you can’t kiss most of their pain and frustration away all the cuddles you give (and there are tons) don’t work. You have exhausted all the mother’s intutition you have and yet are called upon to use it more. Every inch of your body is exhausted and you haven’t taken much time for yourself and in this one little moment you do, you remember what it was like before and you hang on because you may not feel this “normal” moment again. The moment is broken and it is gone by the familiar cry you hear at night, in the hospitaland nearly all day long. You love them with every inch of your being but you just wanted the moment. Unless you have been drudging along for years in the confinement of a special needs child it is so hard to relate. So people come to terms and peace but some are angry and have blame but it takes time and once you accept one thing another thing goes wrong, it is so hard. Many mothers loose their identity to their specila needs kids with every adult they encounter referring to them as “Mom” or “X’s Mom”. Dads most often are the ones who go off to work and don’t recive the calls from schools, doctors or hospitals they typically call mom first. Mom’s most often spend nights in those uncomfortable hospital chairs/beds or curl around their scared child so no one comes in a draws blood or starts a procedure without waking you first. There are so many aspects of fear and exhaustion that you just need to rest or give your brain a break.
    It has taken me 4 1/2 years to come to peace with almost everything. It has been an ugly ride at times however I have been able to enjoy moments & relish in the fact that this illness has made a huge impact on our son & who he is.
    I know this is long a babbling but the points are there, but I have to draw antirejection medications, anti-viral medication & antibiotics so my son can see one more day. Then we will cuddle into his bed read a bedtime story sing a couple songs and rest together and call it a night ending with a kiss and GREAT BIG HUG!


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