Home > Family, Health, Love > loving fully before the loss

loving fully before the loss

my toddler’s heart
had an incident
in late

once wasn’t
so very scary,
but the second
felt very scary
the third,
even worse

three times:
not a fluke,
but a pattern

and when his doctor,
who–over six years
with my toddler’s
older brother–
has never before
said or implied
she is concerned,
sent us to a
pediatric cardiologist,
once, and then
i feared

scenarios washed over me
like a flash flood
in florida (where,
i am told, the
blue skies turn black
in moments, and
release their
rage upon you
without any

my job?
anticipating outcomes,
and preparing for
even the very

i imagined
a thousand

and i was
surprised to find
my worst-case
scenario was not
a medically
end (we
learn to
live, even
kicking and
screaming, with
what we

if littler j
had only a handful of heartbeats
left to experience
this world, well,
then, i would
want him to

but the thing
about reading blogs
is you can see things
you would not have seen
without glimpses
through’ others’

(like how
as if they
were never

and so,
when the cardiologist
told me late tuesday
that he was not
worried, the
range of
so that
i could see
blue skies

and now:
those terrible scenarios
i envisioned will
unlikely come to pass,
here, now,
but the truth
of what i felt
facing them
and is,
i believe,
worth sharing,
and remembering,
so i’m reminded to live
as if each outcome
in the whole
range of outcomes
continues to fight for its
chance to be
the rightful
victor; the
one that

because this is life,
and in life, the end
is inevitable,
so that
the end
isn’t as
as what
what we make
the end


loving fully before the loss
october 13, 2015

it turns out
maybe, just maybe,
my littlest one has a heart
that doesn’t work
exactly like
it should

i tumble
into worst-case scenarios,
for that is my livelihood:
imagining the very
worst outcome,
and what i
(think i)
do then

i find
that the worst
scenario of all
is one where people
retreat because they
fear the pain
of goodbye

(the pain of loss is
smaller from a

when i look
at that (not currently
anticipated) outcome,
i am affronted, not by
the fact it could happen
but by the fact
it does

and i know,
i know, that
there is no diagnosis
that would change my flying
that squealing little boy
above my head
until my arms hurt
too much to

that there is no
diagnosis that would
make me care more
for what might happen
than for what
love i might shower
upon him

the worst-case
scenario would not
be a fatal diagnosis,
but that the days before
dying would be filled with
a void of people too concerned
with the ache of losing
to love fully
the loss


Categories: Family, Health, Love Tags: , , ,
  1. October 29, 2015 at 2:10 am

    Powerful and beautiful truth.

  2. October 29, 2015 at 3:49 am

    This is truly amazing and and his so precious and adorable! I could just snuggle that little face all day and plant kisses all over him! Give him a big hug, kiss, and tickle for me!

  3. October 29, 2015 at 4:33 am

    Made me emotional! Lots of love and healing your way!

  4. October 29, 2015 at 5:28 am

    Glad it was not serious, but I know what you mean about taking seriously the possible outcomes to appreciate the time you have, even if it isn’t limited.


    • October 29, 2015 at 5:40 am

      I’m glad to know exactly what to do next time it happens, if it does, and that I need not panic as I do it. I do feel sad for the other parents in that waiting room, though. Not everyone who waits there gets such comforting news, you know? And yet, I am glad for mine.

  5. NotAPunkRocker
    October 29, 2015 at 5:40 am

    Saying “beautiful words and message” sounds like such an understatement for the emotional journey you just took me on with your words, but that’s all I can come up with for now. ❤

  6. October 29, 2015 at 5:43 am


  7. Deb
    October 29, 2015 at 5:47 am

    Someone, somewhere, states something about sharing a burden and making it smaller by that action…I hope that in sharing these words on the blog the fear and burden of this is eased somewhat. Hugs to you whole family…

    • October 29, 2015 at 5:55 am

      Thank you. Truky, talking to the cardiologist lifted that burden. I shared this in the hopes of reaching someone, anyone, who might need to know there’s someone out there who’d sit with them and laugh and cry both, if near enough to do so.

  8. October 29, 2015 at 8:00 am


  9. October 29, 2015 at 8:57 am

    “so that the end isn’t as important as what happens–what we make happen–before the end”—I love that line. Glad to hear it turned out okay.

    • October 30, 2015 at 4:55 am

      Thank you, on both counts. It’s my birthday today, and I can so honestly there’s nothing else I want close to what I’ve already got. 🙂

  10. October 29, 2015 at 9:27 am

    Such a gorgeous photo of you two and so very pleased to hear it turned out ok.

    • October 30, 2015 at 4:56 am

      Thank you! It is good to know that, even where the heart is concerned, not all irregularities are catastrophic. Phew.

  11. October 29, 2015 at 9:34 am

    Thankyou for sharing this beautiful post with a beautiful lesson 🙂

  12. October 29, 2015 at 9:41 am

    Ah, how often we race to that worst-case. Sometimes very justifiably. It can’t be worse than happening to our children, though. I’m so happy that life may have evened out into good health and acceptance and impressed with your way of sharing your journey. xxoo

    • October 30, 2015 at 5:01 am

      I’ve actually gotten much better about not racing to worst-case scenariors thanks to my sons’ pediatrician! My older son was born while my mom died of cancer, so I ended up taking almost anything potentially untoward to be cancer. Then-D’s pediatrician was loving and calm each time she told me there were hundreds to thousands of other possibilities, each much likelier than that one. Her calm, gentle unflappability is part of what invoked those old OMG-IT-IS-CANCER dialogues: “If she’s not confident it’s nothing, then it must be terrible!” So glad to be reminded otherwise. 🙂

  13. October 29, 2015 at 10:33 am

    I’m glad that you were able to learn more and know what to do next time! So scary waiting for a diagnosis and jumping to worst case scenarios. My nephew was born with a heart defect and had surgery at 3 months. At 4 years old he is thriving! And we love him to pieces!

    • October 31, 2015 at 1:41 pm

      This all makes me beam! 🙂

      • October 31, 2015 at 1:55 pm

        There is a lot of hope and wonderful medical care for “heart kids” as my sister and her “heart moms” refer to them! But yes, it all comes back to the love you give!!

  14. October 30, 2015 at 6:01 am

    Wow, glad to hear there is a good prognosis. Such a cutie patootie! Hugs.

  15. October 30, 2015 at 10:57 am

    I love you all. ❤️ In the now, which is truly all that we live.

    • October 31, 2015 at 1:42 pm

      Absolutely. Most of today’s nows have been lovelier than I could begin to explain. Love you, and hope you have a lovely Halloween!

  16. October 30, 2015 at 12:10 pm

    Beautifully said. Intending to live more fully now, not fearing the loss. Glad your son is healthy.

    • October 31, 2015 at 2:26 pm

      Thank you. It seems I make and break this resolution frequently, but this … this has affirmed its import, and beauty.

  17. November 1, 2015 at 8:00 am

    I read this, repeatedly. First with heartbreak tears then with truth tears then with glad tears.

    Yes, simply yes to all of it. I love you, that too is very simple. ❤

  18. Lana Light
    November 21, 2015 at 9:35 pm

    Such a beautiful insight! Thanks for sharing)

  19. November 23, 2015 at 7:21 pm

    This is one of the most heartfelt and beautifully written pieces that I’ve read in a while.

  1. December 26, 2015 at 2:13 am

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