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Presence and the Gift

There are two aspects of my parenting that have really helped me cope with the illness and death of my daughter.  One was there long before she became ill, was in place before we had any kids; and the other I learned in the months since the first tumor emerged.

What I’ve had all along is a strong determination to appreciate each stage of our kids’ lives for themselves.  I’ve heard or read any number of parents saying they wish the next stage of development would hurry up, or that a past stage had lasted longer.  You know: “Oh, I can’t wait for Johnny to start talking, all this grunting and wailing is so difficult!”  Then, months later: “I really miss the quiet days, before Johnny talked non-stop all day every day!”

Sure, the current stage is difficult.  They’re all difficult.  They’re also amazing, unique to each child, and they’ll never happen again.

So I went into parenthood determined not to push them forward, and equally not to hold them back.  Of course we teach and encourage them.  We taught them sign language so they could talk before they spoke.  But we also didn’t push it, drilling them and punishing every mistake and rewarding every success.  It was the same with speech: we spoke and signed with them, and they picked up each at their pace.  The same with solid foods, and potty training, and learning to read and write.

Of course this isn’t a 100% deal.  I don’t always manage to maintain a Zen tranquility about every last thing.  I’m really ready for diapers to be done, for example; it’s been a decade now, and I’m pretty much over it.  But we’re not pushing it, and I don’t make a big deal out of it—or even a small deal.  This phase will be done when it’s done.

That focus on appreciating the kids for who they are every day has long made it easier for me to navigate the regular shoals of parenting.  And believe it or not, it’s made dealing with illness and death easier.  I didn’t fidget impatiently for the end of the treatments, or try to block out what was happening.  I didn’t spend my time looking over the horizon, dreaming of future days and missing what was happening in front of me.  I was focused on what was happening, good and bad.  Every day, as much as I could stand.

Given how little time we had, I am incredibly glad that I was present for it.  That I cherished everything good in it, and accepted everything bad.  I shudder to think how I’d be doing now if I hadn’t.

That was the first thing that helped.  The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.  That probably sounds like a prescription for massive spoilage and neuroses galore, but hear me out.

Try to imagine this: you learn that your child has a small but noticeable chance of dying a year from now.  Say, 5%, or something like that.  There’s nothing you can do to change that, it’s just how it is: a small chance they have a year left, and a much much larger chance they don’t.  How would that change how you treat them and interact with them?

For me, it created a new blend of short-term and long-term parenting.  I’ve always been a long-term parent, thinking ahead years or decades.  That sometimes led me to be stern or unyielding, and to not always express an appropriate amount of patience and care when it came time to discipline.

But when I realized Rebecca would likely be dead within a year, I realized I had to change how I acted toward her.  I had to soften how I disciplined.  By soften, I don’t mean letting her do whatever she wanted, or reducing the scope of discipline.  It meant working extra hard to meet outbursts of five-year-old rage with calm and measured words.  It meant being clear about the causes and reasons for punishment while working extra hard to be matter-of-fact and neutral about it.

These were things I’d always tried to do, but in the chaos and tumult of day-to-day life, I hadn’t always pushed myself.  Now, with a limited time frame, I had to make every day count.

And, once I realized that, I realized I had to do it for all three kids.  Because who knows what will happen?  We all have a limited time frame, easy though that can be to forget.  Carolyn might have died in an accident before Rebecca’s tumor came back.  How would I feel if that happened, and the last thing I had said to her was angry in words and tone?

I had been falling short with all of them.  Rebecca falling ill made me realize that, and showed me how to step up.  And so I have.

As I said, that doesn’t mean their discipline has lessened.  Because, to go back to the 5% chance of death in a year scenario, that’s a 95% chance that they’ll grow up to be adults.  So you can’t let them run wild; if you do that and they grow up, you’ll just as surely have failed them, not to mention everyone who comes into contact with them.  The boundaries are still the same.  I just try my best to communicate them in a different way.

Even with the odds of death much higher than 5%, that’s how we treated Rebecca.  Partly it was because she might survive, and partly it was because she wasn’t an only child.  We had to treat her consistently with our other children for their sake, as well as for hers.  Even more for her siblings, perhaps, given the outcome.

But when I did put her in time out, or took away a privilege, I always did my utmost to do so quietly and with care, not in anger.  Not with a smile, which would have mocked her frustration; nor with raised voice, which would have escalated it.  Just calmly, implacably, maybe a little sadly.  I did my best every time, and not just with her.  With all three kids.  I continue to do it with our surviving children.

I don’t always succeed, but I always try.  And when I find myself losing control, a quick internal reminder of the stakes is usually sufficient to regain my course.  Usually.  I’m not perfect.  But I’ll keep trying.  That’s all anyone can do, is keep trying.

11 Responses»

    • #1
    • Comment
    • Wed 24 Sep 2014
    • 1013
    Doug wrote in to say...

    It’s a great lesson. I know this can’t possibly make anything better for you, but it was the lesson I took from your last year. Reading your updates and looking at Emma Lynn kept me keenly aware how important it is to be the dad she needs all the time, as possible.

    • #2
    • Comment
    • Wed 24 Sep 2014
    • 1021
    Lydia Mann wrote in to say...

    beautiful

    • #3
    • Comment
    • Wed 24 Sep 2014
    • 1048
    Harmen Janssen wrote in to say...

    I actually recognise a lot from the first aspect: this is also how I try to treat my son. Sometimes it seems like many parents do not view their child as an actual person, but as a sum of the burdens the current phase brings.

    The second aspect is super inspiring to me and I will surely keep it in mind for the rest of my parenthood.

    Thanks for a beautiful lesson.

    • #4
    • Comment
    • Wed 24 Sep 2014
    • 1137
    Jason wrote in to say...

    “The second thing, the one I learned in the past year, is to treat all my kids as if they might die in the next year.”

    This is the lesson your frank and honest posts have taught me, and I try (though imperfectly) to raise my own children accordingly. Thank you, again, for sharing so honestly.

    • #5
    • Comment
    • Wed 24 Sep 2014
    • 1249
    Jack W. wrote in to say...

    Hey Eric – I don’t usually comment (on any website), but I wanted to say thanks for writing these posts. It’s a beautifully written glimpse into your life — they give a little understanding on what you’re going though. Posts like this (and others you’ve written) make me think about how I’m parenting my five year olds… I definitely need to pause & shape my answers with love & patience — like you said, you never know what will happen…

    • #6
    • Comment
    • Thu 25 Sep 2014
    • 0846
    Lee Cockrum wrote in to say...

    Such a wonderful post. You are so good at articulating these difficult concepts. I want to share this with so many people.

    • #7
    • Comment
    • Tue 30 Sep 2014
    • 1934
    David Shirey wrote in to say...

    This is true wisdom.

    • #8
    • Comment
    • Tue 7 Oct 2014
    • 1433
    mike wrote in to say...

    Thank you for your post

    • #9
    • Comment
    • Tue 14 Oct 2014
    • 2049
    Erica Ebinger wrote in to say...

    Hi Eric,

    I came across your website because I’m a technical recruiter for a startup in SF and was truly touched by what you’ve written here and your other posts on your daughter Rebecca. I think it’s beautiful and brave for you to share your feelings like this and I want to thank you for putting a lot of thoughts, anxieties, etc. into perspective for me, and it looks like, many others.

    I wish you all the strength and love to you and your family, and thank you again.

    Love,
    Erica

    • #10
    • Pingback
    • Fri 17 Oct 2014
    • 1218
    Received from Scribbling.net | Two

    […] She’s a dream kid, and I can’t believe she’s two years old already. My resolution for her third year is to stop stressing about developmental milestones and raise her like there’s a chance we’ve only got one more year together. […]

    • #11
    • Comment
    • Fri 31 Oct 2014
    • 0009
    Mike wrote in to say...

    I came looking for a post about CSS and found your posts about Rebecca several months ago. It tears my heart out as I think about my 9 month old daughter and I pray that I don’t have to go through this myself. Thankyou for sharing.

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