On Saturday May 9, 2009 I got one of the few phone calls that I will never forget. How do I remember the specific date? Because we were celebrating Oli’s 2nd birthday.
We were having some family and friends over to the house to
celebrate Oli’s special day the day before her actual birthday. We were just getting ready for everyone to arrive
when my cell phone rang.
“Hello?” I didn’t recognize the number on the display.
“Hi. My name is Bridget. I got your number from Tanya at the Albert Einstein Medical Center. I’m 22 weeks pregnant with my
first child and I was recently told that they suspect that she has
microphthalmia. I know you have a daughter with micro and I just had some
questions and wanted to talk.”
It seemed like all of the breath was expelled from my lungs
in one quick whoosh. My heart dropped
to my stomach and the moment became imprinted in my memory. This woman was
going to have a baby girl just like my Oli.
I was one of the first people she reached out to. I knew how terrifying those first few weeks
were when Oli was born. I remember searching for just one person who knew what I was going through. I found that one person and I still remember
my phone call with her. Now I got to be that person. I got to offer another
mother the same compassion and understanding that was offered to me.
I wished I could reach right through the phone and wrap my
arms around this stranger.
“Where are you?” I asked.
“We’re just outside Austin, TX.” She answered.
Now, I was stilling living in Pahrump, NV at this time. Seth and I hadn’t even discussed moving yet.
Well…we had discussed it, but we didn’t know where we were moving to yet.
Fate, strange coincidence? I don’t know. I find it eerie
that we ended up moving about an hour away from Bridget just a little over 5
months later. We’re still friends,
although she has since moved away to be closer to her family in St. Louis, MO.
“I’m so glad that you called me! I would love to talk with
you about Oli and help you in any way I can.”
I remember carrying the phone into my bedroom, mouthing
“another A/M (anophthalmia/microphthalmia) mom to my husband, and closing the
door. I sat on my bed and asked Bridget
to tell me her story. How she found out, what she knew about micro, and most
importantly, how she was feeling. I
remember she sounded scared, lost, and overwhelmed. But, she had something in her voice that I
had been missing. Something that I
pretended to have, but always fell short of achieving.
She had faith in her voice.
A lot of babies born with microphthalmia have some sort of
vision. If the eyes are not too underdeveloped they may have some usable vision
or light perception. Sometimes only one eye is affected and the other eye is
normal. If the micro is severe enough, then the kids don’t usually have any
sight and sometimes even when the micro eyes are not severe, there is no vision
because other structures are involved. Like underdeveloped optic nerves. Basically….one just never knows until the
babies show us that they can see or not.
Anophthalmia means the eye is missing completely. This also can affect only
one eye, the other being normal, or it can happen in both eyes. You would think that the kids with bilateral
anophthalmia would not have any vision at all. You would think that they would
be 100% blind because, well…because they are missing their eyes. Not true.
I have heard of some kids with anophthalmia in both eyes and these
children display signs of having light perception. You just never, ever know. You cannot say with any certainty that a baby
is blind until they absolutely prove to you that they are.
When Bridget went in for a routine ultrasound the tech
noticed that her baby’s eyes seemed small. Upon further testing/measuring the
eye sockets they realized that they were really small. Although, no one knew the
extent of the underdeveloped eye sockets.
They wouldn’t know for sure until her baby was born.
For a long time after Oli was born I would think about what
it would have been like if I had known about her eyes before she was born.
Most people don’t know until birth because eye measurement just isn’t something
they do with a routine ultrasound. They only do it if the tech notices that the
baby’s eyes look small. I can make
arguments about which would have been better for me, knowing or not knowing.
On one hand, I’m glad that I didn’t know because I got to
enjoy my pregnancy. As much as I can enjoy being pregnant, which is not very
much. I didn’t dread her delivery or have
to worry about what would happen afterwards.
For people like me, this was a very
good thing. My mind has a hard time staying in today as well as suffering from
constant abuse from my nemesis, Gertrude. That little old lady would have made my life a
living hell in the months before her birth. If I would have known I would have been plagued by a constant rush of bad scenarios and terrible outcomes running through my head.
On the other hand, if I would have known, maybe I would have
been better prepared. Maybe I could have talked to another A/M mom before she was born. Maybe it would have helped. Maybe not? Maybe I would have been paralyzed with fear
and raging pregnancy hormones. Maybe….
Now it doesn’t really matter. Not knowing is just part of my
story.
I talked with Bridget for a long time that warm day in May. I tried not to let my sadness or my fear for
her creep into my voice that day. I
tried to just listen and offer her whatever I had that might give her some
peace. The truth is…Bridget already had it. Although I’m sure that she was
scared, she already had a sense of peace about her because Bridget had faith in
something bigger. Faith that her baby
would be born exactly as God had intended and she knew that her baby would be
well taken care of.
Her baby girl was born in September 2009. She has bilateral anophthalmia. She is
totally blind.
And she perfectly named her baby….Faith.
Hard to read that without tearing up. I am so glad you were able to be there for Bridget!
ReplyDeleteWow, a good read! Thanks. I also read about Faith when we lived in Maryland and said aw shucks they moved out of Austin. All the better for the family, tho!
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