3rd annual Lacey Grace Benefit fundraiser
Donation protected
March 23rd, 2023 was the 3rd Anniversary of Lacey Grace's diagnosis!
Mike and I were riding the high of our
gender reveal the previous day. We went to
our 20 week anatomy scan and my mother
went with me for the ultrasound (only one
person was allowed due to newly
implemented Covid regulations). We
basked in the images of her 1st
granddaughter. She and Mike switched out
for the doctor appointment
Due to my age (35), we already had genetic
testing done and the results were all
normal. We had no reason to suspect
anything was wrong. However, this Mama
had a nagging feeling I just couldn't shake.
When Dr. Sinnot entered the room, the
tension was immediately palpable. The
words he spoke next forever changed our
lives. "You're baby's scan is abnormal.
There are signs of a lemon shaped head
and there is a 'bubble' on the lower portion
of the spine, he said. My ears were ringing
and my face was hot. I squeezed Mike's
hand and choked back tears.
What does this mean? What is wrong with
our baby girl? How are we going to cope?
What happens next? The thoughts and
questions raced through my mind. Dr.
Sinnot stumbled to find the images that
showed the lesion on her spine. As he
frantically searched, showing little other
emotion, he said the words 'Spina Bifida'
for the first time. He went on to share that
this is an anomaly he knew very little about
and had only seen a few times in his twenty
plus year career. The doctor went on to explain that we would need to see a Maternal Fetal Medicine (MFM) doctor in Indianapolis. Dr. Sinnot's team would make the appointment for us and call as soon as they had it set up. We walked out of the office
hand-in-hand, stunned, trembling and
rattled to the core. My parents were waiting
in the car for us. My mom says she will be
forever haunted by the look on my face as I
exited the building. I was DISTRAUGHT and
FURIOUS. We would go home and share this devastating news with the rest of our family. We prayed for different news from
the MFM. We waited and hoped and
prayed, together. I did some research of
course and was horrified.
My family left the following morning and we geared up for our appointment with Dr. Sumners. Upon arriving they did a more invasive ultrasound. All the hoping and praying was for naught. The news he delivered was much more bewildering and earth-shattering than we could have imagined. Our unborn daughter
indeed had Spina Bifida. We were told that her lesion level was "high" and "large". That it was
mylomenigocele, a severe form of Spina
Bifida, likely starting at the L2 vertebrae
and going all the way down the sacrum (S5). We were told she would be wheelchair bound
and have no movement from the waist
down. We were told she showed signs (the
lemon shaped head) of a Chiari ll
malformation which meant she may be
unable to speak, swallow or even breathe
on her own. We were told she would have
no quality of life and were encouraged to terminate the pregnancy.
Immediately following the ultrasound we set down with a specialist to go over our options. She gave us information about our three
options. Terminate, post-natal repair or be
evaluated to see if we could qualify for
pre-natal repair surgery. Pre-natal surgery is
only offered at certain hospitals around the
country and would likely require us to
relocate for the duration of my pregnancy. In
the event that we qualified, we only had a
small window of time to make the decision.
Pre-natal surgery for MMC repair can only
be preformed from 19 to 25.6 weeks
gestation. We were 20.2 on diagnosis day
The thought of terminating threw me into
hysterics as tears streamed down my face.
It just wasn't an option. I already loved my
baby girl more than words could ever
express. The thought of pre-natal surgery
was completely INSANE to me! So there we
were with one viable option that didn't
sound like a great one. We clearly needed
time to digest and process the trauma.
The drive home was the most solemn time we
have ever experienced. We were
completely numb and in utter shock. For countless hours, we cried. We mourned the loss of so many dreams. Our dreams for a healthy baby and a "normal" future for our little family. We grieved for our baby girl and grieved for ourselves. We allowed ourselves to feel the pain of our "loss" fully. Loss of a dream. Loss of what we thought would be. Loss of normalcy. I cried out, "I don't want this to be our new normal!" And yet there we were
faced with a completely different
circumstance than we ever envisioned.
Diagnosis day was the very worst day of
our lives. It was the most gut wrenching
pain I have ever been forced to endure.
The very next day we woke up and began
the process of getting scheduled for the
prenatal MMC repair surgery evaluation.
The INSANE option suddenly felt like the
ONLY choice in our hearts. We did qualify
and had the prenatal closure. Lacey Grace
was born full term at our scheduled
c-section at 37+1!
Lacey's beginning has an emotional impact
on all who hear her story. Her journey has an
inspirational impact on many. Spina Bifida
is lifelong medical condition. An overly simplified comparisson can be
made to that of a person who suffered a
variety of ways. Her proper care requires
ongoing medical care (9 or so different
specialists), weekly therapies (OT/PT),
medical supplies, supplements
medications, and a variety of assistive
equipment (plus diy adapting $). I'm sure
there's more I'm leaving out, but the point is
we've learned to ask for help. We can't do
this alone! It takes a village after al!
And so today, at almost three years old, with God's good grace Lacey Grace continues to thrive. She is making leaps and bounds daily. Her verbal and nonverbal communication skills are off the charts! We focus on the positive above all else because we have too. We know we wouldn't be wear we are today without God's blessings, the kindness of His
children and our village!!!
God has spoke to our hearts and helped us to realize that we want to start giving back to a community that helped us so much in the hardest time in our lives. So we have created a Non-Profit organization called Laugh Like Lacey Inc. Laugh Like Lacey Inc. aims to serve others by providing specialized support and services for young children with disabilities and their families.
Please support Lacey's 3rd Annual Benefit
and Ride anyway you can! lf you cannot
attend we understand. If you can afford to
donate we will be so grateful and it would
mean the world to us. We appreciate your
help to continue giving our beautiful
daughter the best medical care around & for supporting our families mission to give back!
God Bless. Please keep Lacey Grace in your thoughts and prayers.
~The Bowers
Organizer
Michael Bower
Organizer
West Lafayette, IN