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Our Tragic Loss

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2004-06-29 14:09:03


The memorial for Simone Schwind will be held at
First United Methodist Church of Ridgeland on Thursday [July 1 2004] .
Visitation will be from 5 to 6 PM.
Service will start at 6 PM.
Everyone is invited to come by.

We want to encourage donations to charity in lieu of flowers.
A good candidate for the charity donation is the Children's Hospital's
Newborn ICU.

You can donate to the Children's Hospital by sending your check
to:
Public Affairs at UMC
2500 North State Street
Jackson, MS 39216
(You can add 'in memory of Simone Schwind' in the memo field, or by an attached letter).
The Children's Hospital encourages putting a return address so that they can acknowledge your donation.


The church is located at:
234 West Jackson Street
Ridgeland, MS 39157
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2003/06/28
07:47 PM

I have many thoughts in my mind now, many things I would like to say and
write about. I don't really know where to begin. I often like to quote
the King in Alice in Wonderland who says "Begin at the beginning. When
you get to the end, stop." However, I think I may be better served
beginning at the end.

Today my daughter died.

I'm a little afraid to go to sleep, despite the fact that I'm completely
exhausted. My eyes are burning from all the tears I've shed today.
Still, I'm afraid to go to sleep, because if I do then today will have
ended and it will be tomorrow and it will no longer be the day my
daughter died. I can't say I understand this fear. I truly can't say
that it makes sense. It doesn't. I can easily mark today as the worst
day of my life so far. I feel completely sick. I didn't know that
about deep grief. I didn't know it made you nauseous and dizzy. I
thought it was all in your heart and your head.

I feel a bit like I'm watching myself go through a number of motions
from another room.

I'm wracked with sobs every few minutes. I can't tell what will set me
off. Looking at the bottles of milk in the fridge did it. Talking
about the hymn I want sung at the memorial service did it. I eyed the
crib just kind of sidelong as I walked by it and I felt a stab of loss,
but no actual tears came of it.

I have never been this lost. I told my husband earlier today that I
felt as though I were standing on a precipice at the edge of a giant
black void and the only thing keeping me from getting sucked into it was
him and God.

I never imagined it was possible to feel this sad and yet, strangely,
also this happy. Maybe tomorrow I will be angry, at God, at the world,
at my husband, at myself, at the perfect baby who had the gall to leave
me. I don't know. Right now, though, I'm just sad and grateful. Sad.
Grateful. Sad that she's gone. Grateful that she was here. Torn by
the things she'll never do, the things we'll never share, the suddeness
of her departure. Glad that she was so lovely. Sad that her time with
us was so brief, just nine weeks, and yet glad that she spent some of
that time with both sets of grandparents and with so many of our friends.

I want to rhapsodize. It's been a miracle. She was wondrous fair. Her
hair, her incredible dark hair, so long that it curled up at the nape of
her neck. Her eyes, slanty and happy and completely spellbindingly
gorgeous. Her strength of will - she tried so hard to pick her head up,
she was determined to master all the newborn physical feats. She made us
happy and whole and better than we would otherwise be.

I cannot believe she is gone.

I'm certain that from the hollow and dark space of the sadness that
surrounds me I cannot shout to you in ways that make sense. It's the
strangest sensation, being so sad, and yet knowing that it is right to
feel this way. I cannot imagine a time when I will not be crying but I
know that I will get there, eventually, if I can just wade through the
grief before me. It's a little intimidating, those long minutes and
hours and days of sadness ahead. I have with me my husband, though, and
my God, and my other daughter who was one of the few things that made me
smile today. I went into her room to say goodnight to her and there, in
the darkness, she was lying on her back with a book up in the air,
turning the pages and peering at the pictures. I suppose a night light
is good enough to read by when you're three.

I have people to rely on, and I feel their strength, and I feel like I
can make it. I'm no less sad, no less heartbroken. All is not lost.
What was lost was beyond compare, this is true, but it is not everything.
I did not know that my time with her would be so short and yet, I savored
it and it was precious. To have actually had the time at all seems like
an uncommon enough blessing.

It seems so strange that she should die on the eve of her two month
checkup.

I was so sure that what she had was serious, but not deadly. So
convinced that we were in for scary and tense times, but did not even
consider that we might be contemplating the end of that short life.

I have no wishes or regrets. Of course I want her back, of course I
would have preferred to go on under any circumstances but these.

My Simone, my little bunny, I'm going to miss you so much. I said to
you, on that too large emergency room table where they'd laid you out,
where they let me, after an agonizing length of time come to speak to
you, touch you, hold you and say goodbye, that I was going to miss you
for far longer than I'd had you with me. Did you hear me? You were so
cold already. I didn't want you to go. My faith, unsubstantiated though
it may be, tells me you are safe and even gives me the hope of seeing you
again someday, smiling across infinity. This promised after life reunion
probably will not take any form I can expect or understand. I still find
it comforting. You are resting now, without struggle and without suffering.
We got left behind and we're doing a bit of both right now without you.
I believe that we'll manage. We'll miss you a great deal more than words
can say.

Time is such a slippery thing. I felt that some moments in the past
couple of days were endless. And yet now, the sky darkens all around me,
and I'm rushing forward into tomorrow, into the day that was not the day
my daughter died and will separate me forever from the you that was
alive, the you I held in my arms with your increasingly weakened,
plaintive cries. The nine weeks before seem compressed, a mere moment
squeezed in between the time before you and the yawning chasm of the time
after you. And yet, I remember the exhaustion of holding you for hours
in the emergency room. The closeness.

I kept telling you that we were with you. That you were safe and
everything would be ok. It seems like I promised you more than I could
give. I really believed it when I said it to you. I hope you can
forgive my fallibility, my Simone.

I keep writing and writing and writing, as if there are really words that
will explain what she meant to us, how I feel, where we're going, what
happened. It is a sort of trick, you see, as words are not sufficient
for any of the causes I'm undertaking. There are no words. There are no
words.

I'm very tired. I will sleep soon. I will go to tomorrow, which will
not be the day in which my daughter died.

Goodbye my little bunny. I have loved you without reservation and with
all my heart. I never really expected to have to mourn you. I don't know
how good I can be at this terrible wrenching thing but sadness has such a
hold on me that I can do nothing but respect its power.

For some of the time that you were ill you sounded, on each breath, as
though you were drowning. It is a little bit how I feel right now.
There are weights, on my chest, behind my eyes, in my head. Everything
is big and wide as the ocean and I am small and sinking in it. There are
shores, and I will get to one of them, but they are very far away, and I
am not such a good swimmer. It is difficult.

The last thing I will do tonight is relate the story of your passing.
There may be a time that I will want to remember the order of things. I
think that we did everything we could. It was not enough. What a
terrible thing to not have enough power to save your own child.

I am feeling a little sick again, now, thinking on it. I will try to
begin at the beginning. In the first, on Saturday morning, you started
to show signs of congestion. A little clog in the throat, a bit of post
nasal drip, a little wheezing. Nothing serious, we thought. In fact, I
thought that since you were feeding a little less than well that possibly
I had inadvertently had something with dairy in it, since we had
discovered that you were allergic to dairy. I pumped and dumped, to be
safe, and that day you fed well but slept a lot. Kurt and I took
advantage of the fact that the grandparents were here to go to a movie.
We had a wonderful time. So did the grandparents, holding and cuddling
you. You seemed alert and in tune when you were awake. Saturday night you
were up a lot. Your congestion seemed to get worse. I slept little and was
tired. I thought you had slept too much, perhaps, during the day on
Saturday and so were up a lot. You were not latching or sucking
vigorously, but you were still nursing. On Sunday morning we had a
battle of wills. I kept trying to feed you and you kept being unwilling
to eat. Finally you fed, at around 11. That would be the last time you
would nurse from me. There were many more times I put you on the breast
and you had a few swallows more here and there. But there was no more
nursing. No more looking into my eyes and gulp gulping your way through
a meal. No more clutching my back, my hair, or my bra as you fed. At
about 6 PM on Sunday we started to be concerned. You were beginning to
act a little listless. You were clearly hungry but would not feed from
me, or a bottle or a syringe or a dropper. When you swallowed it sounded
like there was phlegm all in your throat. You were gagging and heaving a
little, as if swallowing too much phlegm had made you nauseous. You were
miserable and your cries were plaintive and prolonged. We comforted you
as best we could and called our pediatrician's triage line. We were told
to put nasal drops up your nose and suction you really aggressively. We
had been doing this some, and had put you in a closed room with a hot
shower running to help clear your sinuses some. It hadn't seemed to help
much, but armed with the nurses recommendation on suctioning Kurt started
to go at you really aggressively. He covered one nostril and pulled out
mucus, suctioned your mouth back and forth and pulled up huge gobs of
slimy phlegm. Over and over he did this till it seemed like you were
breathing a little easier. Then we tried to feed you (also per the
nurse's recommendation). You still wouldn't eat, though. The nurse
called us back and hour later to check on us. When we told her you still
wouldn't eat, she had us go to the Emergency Room.

What a long night that was, with waiting forever, and both your father
and I so desperately tired and test upon test. No one found anything
wrong with you except your listlessness. They said you weren't even that
dehydrated. You had no fever. This was the big mystery. The emergency
doctor must have said a dozen times that there was no need to be real
aggressive because you had no fever. We took you home with very strict
instructions to take you to our pediatrician first thing in the morning.
Our wonderful, wonderful pediatrician. I could kiss him.

I haven't the strength to finish this right now. I am close to the end,
here, so the rest I will tell you tomorrow.

I love you my Simone. You went away from me, and now I go away from you.
When next I think of you, it will no longer be on the day that you died.

Good night.

06/29/04
01:13 PM

My darling Simone. I am back. My story about what happened is unfinished.
There's so much we don't understand still. They are going to open you up,
did you know that? It's not like you are there, in the corpse, and it's
not like it matters, and if there's answers to be had by doing this we'll
take them. Because we're lost and confused and everything seems to be
spinning. We don't understand so many things that we grasp at straws, at
what might possibly be knowable, as if that will give us some kind of
footing. We understand it won't help. Living is striving, though, and
we are still living, my dear little one.

Sad seems like such a small word to describe how I feel. I find it
incongruous that I can smile and enjoy myself and carry on breathing,
moving, talking while feeling so utterly, bewilderingly heartbroken.
Life goes on and I keep moving away and away from you. My thoughts are
ungovernable, as I'm sure my writing betrays. They wander and thread and
fix themselves where they will. I thought that I would sleep easily last
night. I was so, so tired. I thought that sleep would fall on my like a
curtain, like Poe's tiny slices of death, and deliver me into a land of
blessed unconsciousness. But I slept lightly, uneasily, with one eye
open and my mind unwilling to still. And yet sleep I did and night
passed and here we are in tomorrow. My mind keeps returning to you
stretched out on the bed in the emergency room. So tiny. Many people
crowded around you, trying to convince you to live, force you to breathe,
shock your heart to pulse. You resisted them all and then they let us
see you. I feel myself going over and over those moments with your body
and I am scared that this will be my most enduring memory of you. I want
to remember other things more vividly. I want to remember your smiles
and your cooing and the smell of you. I loved the smell of you. When I
held you in that room you did not smell like yourself, like what I knew
of you.

I am back, little bunny, to finish telling about your passing. We took
you to the pediatrician. He saw you immediately. He rushed in and had
never looked so serious. You were very weak by then, and your cries were
so quiet, just the weakest sort of "wah, wah, wah" protest. He examined
you. You seemed very worn out, but still fine, still like we could fix
you, still like there was hope. In fact, no one standing in that room
with you thought you were going to die. We all thought we were working
on making you better. Our pediatrician told us to take you to the
hospital. He said he never recommended this lightly, but that he felt it
was necessary. He said we would hydrate you with an IV, that this would
give you the energy to kick the virus that both he and the emergency room
had separately diagnosed you as having. You would have to stay
overnight, he said, but it would all be taken care of. He would call
ahead and give us the doctor's name. It was important to go there now,
but we could swing by the house and get some clothes and stuff so that we
could stay with her. Everything was going to be ok. We were taking care
of you.

We came back home and pulled a few things together. We were worried and
distracted. I kept getting derailed and starting to pack one thing and
then trailing off to pack another instead. I was very tense, very
worried, but the specter of death was not in my thoughts. I was worried
that the IV would be uncomfortable and hurt you. I was worried that they
might not let me nurse you at the hospital. I was worried that this
would set you back developmentally. It never crossed my mind that you
might die. Your grandparents said their goodbyes to you. They were
concerned but rested on our assurances that things were taken care of.
They got in their vehicle and we got in ours. We drove to the hospital.
We stopped and Kurt took you out of the seat and gave you to me. I
entered the building with you and he went to park. I looked down at you
in your carseat. Oh my dear, my heart quailed then because your lips
were blue. I put my hand to your chest and it was still. I started
running down the halls towards admission. I'm at the hospital, I'm at
the right place, I kept thinking. We're here, at the finish line, they
will revive you and you will be fine. I thought about stopping to give
you CPR but I wasn't sure I could do it right and 30 seconds and CPR by a
professional seemed like the better choice. I told the lady at
admissions that I had been sent by my pediatrician but that I was
concerned that you weren't breathing. She ran with me to the emergency
room. I said again that you were blue and not breathing. They lifted
you out of the car seat and took you into a room. I followed. They made
me go away. A doctor started asking me questions. I had a very hard
time following what he was saying. I concentrated hard. The answers
might make the difference. I tried to speak slowly and clearly. I
corrected him on things. I was assertive. No vomiting. No diarrhea.
No fever. No medications except the infant tylenol yesterday in the PM.
They kept asking me if you had been full-term. Full-term. Delivered
vaginally. No problems. Beautiful, wonderful, perfect.

Oh little bunny, I had so much faith. They were working so efficiently,
so hard. I knew everything would be ok. I was worried that Kurt
wouldn't be able to find me. Worried that you might not have been
breathing for long enough to have brain damage. I wanted to be with you.

Kurt did find me. You, my sweet thing, did not. They told us they did
everything they could. They told us, at one point, that you were not
breathing on your own but that you had a pulse. They told us they'd be
moving you to pediatric intensive care. We expected that. I knew you
had been breathing when you left the house, but how long was it? Kurt
and I discussed the possibility of brain damage. We sat in a room and
waited and waited and waited. We cried. We didn't know then how much more
crying was in store for us. Then, they came back and told us they had
done everything they could but you were gone. It was the first of many
confusing things said to us. We expected to hear that we could see you
now. I knew something was wrong when they came into the room, though. I
could see it in their eyes.

Your pediatrician came to see us. We had to wait some more, you see.
They wouldn't let us see you right away, even though it didn't make a
difference anymore. He said that you had probably had a heart attack,
and that he hadn't seen it coming and that you were only the second child
he'd had die in his care in six years. He said it didn't make sense, and
that there would probably be an autopsy. He was crying when he said
these things.

I keep thinking about that ride to the hospital. You were so quiet.
Your heart was failing and you didn't even cry or stir once. I think
you might even have been sleeping. I say I had no regrets and no wishes,
but I kind of wish I had ridden in the back seat with you, next to you, on
the way to the hospital.

I'm not sure that even if we had arrived earlier you would have been
saved. No one was expecting you to stop breathing.

And that, dear girl, is the story as I know it.
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