//Excerpt from the book (in progress) Finding Thanks by JGerling//
Chapter 7
Chapter 7
Thankful for the Unknown
A
diagnosis. Two amniocenteses tests later and we finally had our diagnosis, but
it was so rare that there was literally no information for us to learn more
about what this was or how to help our daughter. All we knew at this point was
that the real name of this scary thing we were going through was called Mosaic Trisomy 22, or MT22. Essentially, Chloe’s twenty-second chromosome carried an extra chromosome, so
instead of a set of two chromosomes, there was an extra, making three instead
of two, but not in every cell of her body, hence the mosaic part.
And
nobody knew much more beyond that.
I
was seen weekly by my local doctor, if for nothing more than to answer all
our questions and listen for a heartbeat, and give my tired and weary mind rest
for a few more days. Every fourth week we would travel the children’s hospital in
our region for more in-depth ultrasounds and her fetal heart echo. We met with
various teams from around the hospital who would be helping us, hopefully, get
to full-term and delivery. Our hearts usually arrived on appointment days in
Kansas City filled with hope, and left with worry. Doctors are trained to give all
the sides of the story. It’s just what they’re trained to do, but it usually
left us grasping for faith and remembering that our God is still good, even
though that day’s ultrasound showed a club foot after all, or this week the
amniotic fluid was lower. And the Lord provided so much strength when our
knees were the weakest.
It
was still hard to come home from each appointment and watch as my friend’s
around me who were pregnant advanced with great ease and health, while mine
stood still. Literally, we didn’t even know anymore what week gestation
our baby was because measurements were not adding up with dates. It wasn’t until we were able to compare some early ultrasounds
with later ones, and came upon the diagnosis of something called IUGR, or
Intrauterine Growth Restriction. In short, our baby, who already had a slew of health issues, also was not growing well in size.
When
that diagnosis came, I sobbed and did what every hormonal pregnant mama did: I
complained.
“What
week am I in again? Because it feels like this is the pregnancy from eternity!
I’ve been twenty-four weeks for three weeks now!” I wailed at my doctor,
begging for clarity now that we had the IUGR info at hand.
“Yeah,
you’re an elephant!”
PAUSE.
“That’s
not what I meant! I mean like, well, like how it takes an elephant two years
for gestation!”
I
started to cry, but laugh at the same time. I knew I wasn’t like an elephant,
but tell a pregnant lady that her pregnancy is going to last forever and
compare it to an elephant and she’ll break down. We know very well that my
doctor did not mean it that way at all, but was simply making a
comparison, of sorts, and thankfully this provided a much needed comic relief
moment while on this path to our daughter’s delivery. (And the elephant joke
has never died, and we still think it was one hundred percent hilarious that
those were the words that fell out).
The
entire pregnancy was a swinging pendulum, one end hitting on every fear we
could ever have as parents, and the other end on the mystery of why the Lord
chose us for this child, and the uncertainty that was her trisomy. The only
thing that was sure, that was certain, was that despite those along our path
who advised us of getting an abortion, we knew without a doubt that this child
would live until the Lord decided to stop her beating heart on His own time.
Abortion was not an option for us. Life was all we would ever consider. And to
be clear, we knew what our stops were with her in regards to this, but as long
as her heart beat without suffering, then we chose life.
Our
daughter was born exactly one week after Good Friday. The moments leading up to
her birth were filled with such worry and anxiety for me. I was terrified to be
her mother. I felt in no way equipped to handle the life of a special needs
child. Of a heart baby. I was not a nurse; I only knew how to be a mother. I
had no medical training, and yet I knew that the moment she was born I would be
immersed in medical life, and it terrified me. The doctors preparing to deliver
her questioned why I was so nervous and thought it was the surgery itself to
deliver her, so I let them believe that because I wasn’t about to tell them
that I was scared to meet my daughter. No parent admits that. But most of all,
I was afraid that I wouldn’t be enough for her. That I couldn’t fix her, and so
much of her was unknown.
But
there was also joy. Amazing joy that she was here, she’d made it to almost
full-term, and her heart was still beating and she was breathing on her own. And
even through a three-chamber heart, cleft lip and cleft palate, a clubbed foot,
and later what we would learn was only one kidney, we still heard her first
strong cry echo over the delivery room. She was here, finally, and she was
letting us know it. I could hear her tiny little cry from the room adjacent to mine where they were working to help her seconds after she was born. That cry was a rally cry that she had made it here. I was so blessed by the fact that although her future seemed so unknown and bleak at that moment as we waited to see how she would do out of the womb, that the Lord allowed that sweet cry to echo over the room so that I could hear it and know she was here and that she was alive.
We
were so thankful that the Lord had placed this tiny three pound, seven-ounce
gift into our arms and into our life. We were terrified, but thankful. Neither
of us had any idea what this next step would be like, or that we would end up
spending the next five-plus months living out of the Ronald McDonald House as
we navigated the life of the NICU, getting our daughter to grow and be strong
enough for heart surgery. Our minds had no way or fore-knowledge to grasp such
unknowns that her trisomy would bring into our world. All we knew at this point
was that we’d found a support group online for family members whose child or
relative had MT22, and let me just say, there were not many in that group. It
was by the grace of God that we stumbled across that, and it became our second
source of hope, next to the Lord. When we read stories and saw pictures of
other children living lives full of love and laughter regardless of what an
extra chromosome said about them. Sadly, some children did not survive, and
that left us with a great amount of compassion for their families, and concern
for our daughter’s future. But there was one main thread that was woven into
this group of people with Mosaic Trisomy 22: Everything with this trisomy is
rare and unknown. No two cases are a like in similarity. A few traits crisscross
between different people, but overall, this abnormality is so abnormal, that
all we know is that there is a chance you can survive it, so we clung to that
piece of information, and we studied and held close the images of the other
children living with this trisomy, and we held onto hope.
My
husband loves academia, and I love to research things, so together we make a
pretty powerful pair when it comes to learning about new things. It especially
came in handy when we were met by the hospital’s chair of the Bio-Ethics
department and he carefully considered his questions for us as he probed us to
make sure we understood the depth and concern of our daughter’s trisomy. We
shared our story. We showed him pictures of the other MT22 children. We
explained our stance on life and on why we were making the choices we were and
didn’t choose to abort before her birth. And shockingly, he agreed. Being that
our daughter’s diagnosis was so rare left open the door that she was a
grey-zone baby, and that we had every right to continue granting her life even
when she was ornery and would do things like aspirate, code, and find other
ways to freak us out. The unknown of her diagnosis became the rally cry that
just because it’s rarely documented does not mean it should end. Statistics sat
there, off to the side, benched, as we instead fought and advocated for our
daughter, carefully balancing each decision, each consent for surgery, each
procedure against her chances of survival.
Our
hearts learned to trust the Lord more deeply and press into the unknown. Never
had we been so thankful to hold the word unknown
in our hands, carefully and delicately, and still be so thankful for the timbre
of that word. It is by nature alone that humanity wants to know what is next,
what’s to come, how to move forward or at least a reason to pause. But to be
certain of, and thankful for, the unknown left us with only the opportunity to
trust Christ with our daughter’s life. Any other word that might describe her
diagnosis, and the scale that lends itself to either a white-zone baby or a
black-zone baby may have tilted against our desires, and we might have trusted
statistics over our instincts.
In
the NICU, there’s the saying, “Look at the baby.” What it means is to look at
the baby to decide if they’re blue or struggling or whatever the situation
might be. Do not always trust the monitors and beeps. In our case, we were
choosing to look at our God and press into this space of unknown, these waters
that were consuming us, into a grey zone that we knew nothing about, and be
able to thank Him for leading us instead of leaving us. God’s Word says in
Isaiah chapter forty-three verse two that, “When you pass through the waters, I
will be with you; and through the rivers, they shall not overwhelm you; when
you walk through fire you shall not be burned, and the flame shall not consume
you.” (ESV)
