Eliza Grace was born on March 15, 2006, at 26 weeks, 4 days, weighing 1 pound 4 ounces and measuring just 11.5 inches long. She is the light of my soul and this is the story of our life in the big city.

Thursday, May 22, 2008

Your Life Is An Occasion ....

Rise To It.



This is my new favorite quote. My cousin Tracey shared this quote with me recently and it really hit home. You all remember cousin Tracey? She attended Eliza's delivery with me, NICU nurse extraordinaire who held my hand during the ugly NICU days and all around great cousin who somehow knows when my ego and soul need a boost (or a kick in the pants).

The quote comes from a childrens' movie called "Mr. Magorium’s Magical Emporium." How often do we fail to rise to the occasion of our lives? Not just the good occasions, those are easy to rise to, but to the not-so-good occasions. Those are the very occasions we need to, and must, rise to. I am no fan of the platitudes that people are forever repeating to me. I have never known why I should be forced to make a boring old vat of lemonade from a bowl of lemons when, with a little imagination and a cup or two of sugar, I could make a nice lemon meringue pie. I have never known why people believe that g*d would not give us more than we could bear, because otherwise we would not have insane asylums filled to the brims. But if this quote falls into the category of "platitude" than I'll take it. I suspect that lately I have been doing a bit of a wallow in the self-pity that having a kid who can't/won't eat and who has a few other issues in her life can create and that I may not have been rising to the occasion of our lives. So I think I will renew my effort to rise to the occasion of life ... it's the least I can do for Eliza.

On another note .... here is an article that was posted on a preemie group a week or so ago. I think it sums up nicely how I feel:


Not One of Those Mothers

by Kate Trump O'Connor, from Brain, Child


I'm going to confess something.

I never thought I could do this. I never wanted to do this. I never,
ever would have chosen this for me, for my one and only life, for my
son's one and only life. This? Mentally and physically handicapped? No
way.

Before Thomas, my world was largely untouched by disability. I went on
with my life, unaffected and unconcerned, and I never had to face my
own ignorance.

Then, one beautiful June day, I was forced to face it-and the face it
wore looked just like his brother's, with round cheeks, a tiny nose,
and the deepest brown eyes.

Thomas arrived three weeks early on a sunny Friday in June. We made it
to the hospital with just enough time to drug me up, something for
which in hindsight I am extremely grateful. Not for the pain of
delivery-his birth, my second labor, was quick and almost easy-but for
the heart-wrenching pain and grief that came after.

Dr. T. is a calm and gentle man. He broke my water, saw meconium, and
calmly explained that he would keep the baby from crying until he had
suctioned him carefully and thoroughly. So when they rushed our new
son (another boy!) across the room and huddled around him, we weren't
alarmed. Dr. T. betrayed nothing while he and the nurses worked to
resuscitate my baby. I was too giddy to notice as 10, then 15 minutes
passed.

"He's having trouble breathing, so we're sending him to the special
care nursery," my doctor said. I remember thinking that it was OK,
that these things happen all the time.

Maybe we should have been more concerned in those first minutes and
hours. Maybe instead of making giddy phone calls and rejoicing in our
new son's birth, we should have been preparing ourselves. There were
warning signs. His initial Apgar score was five. When I briefly held
him and said, "He looks just like his big brother," my obstetrician
replied, "He does?" Only much later did I realize why he sounded a
little surprised.

Hours passed. I was moved to my postpartum room, and still we waited
to see Thomas again.

I have to stop here for a minute, before plunging ahead into the next
chapter. It's vital that I get this right so you don't do what we all
instinctively want to do-put distance between my life and yours.

It's not personal, I know. But as soon as I say anything, your
imagination will stand at the mouth of that dark tunnel, the one my
husband and I found ourselves hurtling down when Thomas came into the
world. You'll shake your head to clear the vertigo. Not your path in
life. More power to me, but you couldn't imagine it.

I understand. Before Thomas, given the choice, I'd be leaning over
your shoulder looking at some other mother with that same sense of
sympathy and awe. "How do you do it? You're amazing," we'd echo in
unison to that mother who, but for the grace of God, the universe,
Mother Nature, and random chance, could be us.

That other mother sits a little apart. When she talks about her kid,
there's a certain look in her eyes, like she's seeing something we
don't see. She speaks a foreign language-of sats and meds, of OT and
ST, of IEP and inclusion-that you don't want to understand. It's so
hard and she's such an amazing woman, and you know that you wouldn't
have the strength to do it.

You mean this as a compliment.

It's not. It's the verbal equivalent of throwing salt over your
shoulder. It's a fervent and silent plea: Don't pick me. I'm not
strong enough, I don't have enough faith, my heart isn't radiantly
kind. And what will he look like? And will I be able to love him,
truly love him?

You wish desperately to believe that special mothers are chosen. That
God doesn't give us more than we can handle. Two years ago if I had
been told that at two days, instead of being discharged, my baby would
be put on a lung bypass machine; that at two and a half months he
would have open-heart surgery; that at 14 weeks he would come home,
alive but fragile, with a feeding tube and an oxygen tank-if you had
told me all of this I would have said, Nope, can't do it, find someone
else please.

And if I had been told the first gift we would receive after my son's
birth would be a book titled Babies with Down Syndrome, a present from
the chief geneticist at the big-shot hospital? Certainly I would have
paled and looked around. Me? Surely you mean someone else-someone who
hears all this and doesn't turn away in fear.

Perhaps you're still skeptical. You can't let go of your certainty
that somehow I am a different breed of mother. I know you're
wondering, so I'll tell you. No, I didn't get all the prenatal tests.
No, we didn't want to know. Yes, we chose the uncertainty. We never
really imagined our baby would be born anything but healthy and perfect.

Now, I must concede: I am a different kind of mother.

Thomas is 20 months old now. At night I sit by his crib and watch him
sleep, mouth open, the sleeve of his PJs exposing too much wrist
because he's growing so fast. His pudgy hand rests on his baby-blue
sheet, the one with the owls. His dark blond hair, exactly like his
brother's, curls in a cowlick. His plump cheeks are covered with white
medical tape, which holds the oxygen tube tight in his nose. I glance
at the display on his oxygen saturation monitor. Nearby, my husband
stirs in his sleep. The baby is still in our room so we can respond
when his alarm goes off, signaling a drop in his oxygen levels. It's
easier than stumbling down the long hall. I should be sleeping, too.
Yet I sit and watch Thomas sleep. Because I can.

I know when he wakes in the morning, he'll pull off the oxygen tube
(he needs it only when he's sleeping) and greet me with a loud
good-morning babble. His big brother will come in, asking to go
downstairs and watch cartoons. "Bring Tommy down, too," he'll say,
because to my amazement, after all we've been through, they're close
as brothers can be.

If you had told me two years ago that this child would come into my
life, I would have wished I could be the mother you thought I was, but
I would have known deep down that I was not. If you had told me that I
would sit here today by Thomas' crib and say that on most days I don't
think much about his having Down syndrome, I would have said you have
a fantastic imagination.

But the truth is, whoever or whatever is in charge of baby placement
didn't see anything in me that is not in everyone-the capacity to love
our children beyond measure and reason, beyond diagnosis and fear,
beyond uncertainty and self. I wasn't picked to be Thomas' mom because
I am special; I was made special because I am his mom. When I took him
in my arms for the first time and gazed into his eyes, I saw only my
beautiful, perfect son.

Kate Trump O'Connor lives outside Boston with her husband, two sons,
and twin daughters. Her website is www.ktoconnor. com
. Excerpted from Brain, Child(Winter
2008). Subscriptions: $19.95/yr. (4 issues) from Box 714, Lexington,
VA 24450; www.brainchild mag.com .

1 comment:

abby said...

Sharon LOVED this post and wanted me to let you know that...I guess she's chicken about different things than I am ;-)

(I loved it too, btw!)