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By Justin Dean
January 25, 2009
From the outset of accepting this sermon I
didn’t want it to just be a piece about me or my first son. I wanted
it to have meaning greater than us both and indeed there are lessons
that this experience has taught me which I would like to share after
the telling.
This is the story of my first son, Dash. It is not the story of my
oldest son Simon. It is a personal story. In the sharing of this
story I hope to honor Dash and give broader meaning to his life
short though it was.
For me the story starts November 2006, after spending 24 hours
traveling back from Japan on business. Upon arrival at home tired
and exhausted I am greeted by my wonderful beautiful wife Cayty.
After a gloriously comforting hug she tells me she has news and
proceeds showing me an object held in her hand. It takes a few
moments I recognize what the thin plastic wand with two pink stripes
is, and a few more moments are spent processing the meaning. We’re
pregnant! News indeed! Another round of hugging ensues. (I can’t
seem to get the commercial advertizing pregnancy tests out of my
head the one which states “The most advanced piece of technology,
you will ever pee on.”) For me learning that I was to become a
father was one of those moments in life, one of those momentous
moments which will never leave your memory. My mind racing over the
vast implications and impacts; my life forever changing, bringing a
new life into this world, a new life!, the responsibilities and joys
of parenting, would it become a boy or a girl?, are we really
pregnant? Wait are we really pregnant? I asked Cayty and she
produced 3 more positive pregnancy tests of various brands. That’s
my Cayty. Soon thereafter tiredness took over and I was fast asleep.
After awaking we talked at length of the possibilities, boy or girl,
life changes, names, and next steps including finding a doctor.
Cayty gladly had me along on her doctor visits. It all seemed a
little surreal at the time, we were going to have a baby! I love
people watching and sitting in the waiting room seeing all the
expectant mothers in various stages of pregnancy was an interesting
experience. Some are not showing at all, some carrying around
comically large bellies I only thought existed in ridiculous movies,
some old, some impossibly young, some alone some with children. What
there wasn’t a lot of, were men. I found the actual doctors visit
much less exciting than the waiting room. The doctoring takes place
in the typical cold sterile little room with little to keep one
occupied except for the few medical posters on the wall. There
wasn’t much to the first couple of visits. The most exciting part
was the sonogram machine. Not that there was much to see at this
early of a stage but it provided visual definitive proof that we
were indeed pregnant in case all 4 home pregnancy tests and the
doctors own tests were wrong.
Christmas that year was a day I distinctly remember as Cayty and I
were waited till then before telling everyone that we were pregnant.
In part to be sure though the first few doctor visits and we just
thought it would be a great gift for our families to learn of the
pregnancy on Christmas day. I enjoyed bringing the great news to
everyone that Christmas and did it with flare making large
announcements at the 4 family gathering we attended. I must admit it
I felt a bit like a child wanting to show off his fancy new toy
passing around the picture taken by the sonogram. It was an exiting
time filled with anticipation.
One day not much after the new year I get a call from Cayty. She is
overcome with grief and is having trouble getting a word out. Those
that do come are whispered between sobs. My heart races, I get a
quick flash of heat shivers though my body. What’s wrong, what’s
happened! Doing my best to calm Cayty down I ask. “What happened?
Are you okay?” Through the sobs I learn that she has gotten a call
from the doctor’s office regarding a blood test result. “What test?
What were the results? What does it mean?” Nothing of any
substance. Only that one of the values a blood test was high and
Cayty needs to go back into the doctor’s office for the exact
results and to discuss them with the Doctor. The next open
appointment is in two days. In two days! We have to wait two days to
figure out what the hell is going on with our baby.
Those two days were spent attempting to go on with life as usual,
although work suffered and we both became frazzled. Up to this point
in my life these were the hardest 2 days I have ever lived. Hours
upon hours were spent doing research grasping for answers any
answers. We found lots of answers although none specific to
ourselves and most dreaded. The list of illnesses and issues which
could cause the screening triple test to be too high is daunting,
ranging from the good news of twins or more to the horrendous
possibility of a terminal genetic issue. Knowing that our score was
too high helped us narrow our research excluding many awful genetic
conditions including Down’s syndrome and Edward’s syndrome but
leaving an equal number of just as unwanted options such as neural
tube defects and spina bifida. It would be easy for one to become
depressed just learning about all of these pre birth conditions,
knowing that they exist and learning the alarmingly high rate at
which they occur, but to learn about them while waiting for more
detailed information about our own pregnancy was devastating. I
wouldn’t have made it though those days except for the comfort of
Cayty. I found strength in supporting her, doing my best to maintain
a vision of hope so she would be comforted by my confidence.
The triple test, or AFP test, is a screening test not a diagnostic
test. It is only supposed to be preformed with informed consent by
the mother because of the high rate of false positives. Not only
were we not given information about the test other than it was a
“routine blood” test but we didn’t actually give any informed
consent because we were never actually informed about what the test
does until after the fact. If we were given information prior to
taking the test we would have been better prepared learning the
results or may have opted out altogether as is any mother’s right.
The next doctor’s visit was a completely different experience
mentally. Now we were surrounded by soon to be mothers who had
healthy babies and there may be something wrong with ours. It was
not a place either of us wanted to be. We just wanted our answers.
The doctor visit was completely anti climatic with them only telling
us what we had already learned on our own. We were referred to a
specialist to further investigate and determine what was going on.
The only real things of any substance we walked out with were the
actual test values and even more apprehension.
The next day I find out the appointment with the high risk practice
was scheduled for more than a month away. Completely f’n
unacceptable. We waited our two days; we were not going to wait a
month to find out if my baby is going to be okay. I called up the
new practice and informed them of our situation in a voice
alternating between restrained fury and pleading sadness. We got an
appointment the next day. I didn’t sleep much that night and neither
did Cayty.
The new practice was a completely different experience. We were not
initially brought back into the second waiting room to brood even
longer but to a genetic councilor, Meg. Meg set us down and
correctly guessed that we had gone online to do our own research.
She went over with us again anyhow of the most likely possibilities
with particular emphases placed on spina bifida and the possibility
that it was just a bad test and everything was ok. Spina bifida is
where part of the spinal column grows outside of the body. There are
various degrees of severity with many babies going up to lead
perfectly normal lives. Our hope grew stronger hearing comforting
words. We were to have another sonogram with more advanced
equipment. We were brought back into a cool dim examination room. A
tech did the initial sonogram. The images thrown up onto the monitor
caused me great concern as the normally indecipherable, to me, globs
of black and white took on a sinister rendering in my head. I soon
stopped looking and the tech would not say what she thought the
issue was as she was only a tech. The next few moments, waiting for
the doctor, were the longest in my life knowing that someone knew
what was going on with our baby but not yet knowing. The doctor soon
entered looked at the chart and began the process again to verify
the findings.
He turned to us and told us our baby has a condition known as limb
body wall complex. My initial reaction was elation as this was one
of the afflictions which I read about and was often fixable, out of
everything which I had read excluding quadruplets this was the best
diagnosis I had found. As the doctor continued to explain in a
somber tone what the condition meant and the severity in which our
baby had it my elation quickly crashed to horror. We asked what were
the odds of our baby making it? The answer was less than 5% but I
could tell from the tone and demeanor that it was closer to 0 than
5. He soon left us letting use know we could stay as long as we
would like and that Meg would see us when we were ready. Before the
door even shut I found myself in depths of despair so deep only the
strong warm embrace of my wife kept me from falling to the floor.
This time was the most powerful emotionally vivid moment in my life.
We held each other and we cried. We cried.
In our meeting with Meg we were given more information including our
options for moving forward. We were scheduled for the next week when
the other doctor would be in to give us a second opinion, which was
the same with a lower assessment of viability. We would also have
results from the amniocentesis to see if our issue was genetically
related, which it wasn’t.
Over the course of the next week in what was to become a reoccurring
theme for quite some time I would find myself uncontrollably
sobbing. At work, while driving, watching tv it didn’t matter where
I was it would hit me anyplace. I found the quite times and those
with Cayty most comforting allowing the sorrow to wash over me
completely. There was and still is something healing about just
embracing the sadness fully.
Cayty and I discussed options and did more research. Coming to what
we thought was the best way forward with the awful choices before us
was complicated not only by issues related to the well being of
myself, Cayty or our baby but from society as well. From everything
I read the baby did not yet feel pain in the normal sense. There was
a very high likelihood that he would not make it to term which would
complicate health care for Cayty. If he did make it to term we would
be faced with the choice of giving comfort care or attempting for a
medical miracle. There was also for me the not insignificant amount
of emotional suffering both Cayty and I would go through by
continuing on with the pregnancy. Then there were the little
annoying issues like would we have to go to an abortion clinic if we
ended the pregnancy? Would insurance pay for the procedure? What
would we tell people? What would they think of us? Everything seemed
to point us in the direction of ending the pregnancy except that we
wanted and loved him so much but in the end we decided that for us
it was best to look into ending it.
We were given the name of a doctor who would perform the procedure.
She was retiring but took our case anyway. During our first visit
with her we opted for having an induced birth which we found more
comforting than other methods. When we asked if our insurance would
pay for the procedure she was quite colorful in her response about
what she thought of insurance companies and told us that if they
didn’t pay she wouldn’t charge us anything. We were to check in the
next day at the hospital in the normal maternity ward and she would
meet us there.
That night was hard. When I wasn’t holding or being held by Cayty I
was holding her belly and our son. We decided that we wanted to name
him and went through the baby book looking for names. We happened
upon “Dash” which seemed very fitting with the meaning being
“memorable” with corresponding English meaning of just a pinch or a
quick sprint.
The next day was a whorl wind of activity. Other than the initial
hiccup at check-in due to the receptionist being puzzled by our
length of pregnancy we were met at every turn with loving caring
people. Our door was given a butterfly to indicate to cleaning and
nursing staff that we were a special case. Our parents were allowed
in the room to keep us comfort and witness Dash’s birth and life. It
was a sad day but it was also a comforting day surrounded by such
wonderful people. Dash Elery Dean was born without a heartbeat on
February 23rd 2007. Not to disappoint he lived up to his name being
small, quick, and memorable.
This experience has given me many life lessons some of which I would
like to share with you.
During our road to recovery we joined a support group. We found many
other couples who were grappling with the same issues we had, a
surprising number of couples actually. Although after going to a few
sessions I found that while the situations were similar they were
not at all the same. Different pre-birth conditions, different
family and support or in some cases lack of support, differing life
situations, the spectrum was wide and deep. Many choose only to tell
others only that they had lost their baby, including close friends
and family. Hearing other’s stories helped me appreciate how blessed
I am to be surrounded by loving caring people. The doctors and
nurses who shepherded us along this journey, the family I was
blessed to be born into, the family I was blessed to marry into, the
loving friends I have found throughout my life and this wonderful
community I have found here at Davies and definitely not least, my
wife, Cayty.
Throughout the whole experience the only people who seemed not to
want to help or care was the nebulous phantom of society. These
people while always nebulous and nameless had thrown up small
hurdles. The stigma attached by society to the A word abortion which
made the choosing that least awful of our choices that much harder.
Insurance companies policies written in such a way that this type of
situation was not even acknowledged so that doctors and nurses most
likely had to lie in order to receive payment. What I did not find
however was real people who were unsympathetic to our situation once
given the full story. I don’t mean to say that everyone agrees with
our choice or would have done the same if put into the same
situation but most can understand and empathize. I have had people
tell me “but your situation is different, its special” and my
response to this is that I would think that most people who come to
choosing the awful choice of having an abortion is, in some way, in
a special, unique situation of their own. Laws can often be a blunt
tool, even when made with the best intentions, for what can often be
nuanced situations. I don’t profess to know how to fix the system
only that it is in need of some fixing.
While Dash has brought me sorrow and sadness these feelings are a
natural part of life and having experienced them throughout has
brought me a fuller life. Sorrow can bring people together and in my
case it has brought me even closer to those I love dearest. Sadness
and sorrow does however heal and I have found love, understanding
and time good medicine for my heavy heart. It is my hope that Dash
lives up to his name in your hearts and minds as well: small, quick,
and memorable.
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