It will take us a lifetime to piece together all of the ways Lainey’s life has forever changed ours. One thing we already know is that, from her very first days, Lainey has been a teacher. Beginning with that unexpected, anxiety-filled moment when we learned that Lauren was pregnant only one day after she had accepted her new job and only a couple days after we brought home our new puppy, Lainey has been teaching us that life isn’t bound by our timelines, plans, or expectations. This new little life interrupted ours, and we scrambled to make sense of God’s timing. However, even in the midst of those chaotic first days of pregnancy, joy burst in. Lainey quickly taught us that sometimes our biggest blessings are the most unexpected.
It didn’t take long before we were dreaming up nursery themes, shopping for onesies, and celebrating the good news that we were expecting a baby girl. Our hearts were drawn to the name Lainey Joy. Lainey means bright light and Joy captured our response to our most precious gift. Lainey is the first grandbaby on both sides of our family, so needless to say, the entire family was over the moon with excitement. Lainey was instantly loved and treasured by everyone around her.
On Ash Wednesday, we went for our thirteen-week ultrasound ready to see our little girl. Our excitement quickly turned into panic as the technician used words like “concerning,” “unusual,” and “too much fluid.” Those words fell like ashes, smudging and staining the beautiful future we had envisioned. Although we didn’t realize it at the time, that Ash Wednesday marked the beginning of a long and painful journey. We left the doctor’s office heartbroken, scared, and desperately aware of our powerlessness to fix whatever might be wrong with our precious daughter. Little did we know, Lainey was preparing to teach us that God can paint beauty with the ashes.
The next several weeks were filled with unanswered questions and what if’s. Deep down we trusted that the same God who blessed us with this little life was working all things together for her good, but standing still and waiting was so difficult. We felt His presence at every doctor’s appointment and as we wrestled through the potential outcomes in our minds. We were now classified a high-risk pregnancy, and our specialist discussed with us possibilities ranging from best-case survivable syndromes such as Down Syndrome or Turner Syndrome to worst-case virtually unsurvivable syndromes, which he said we could discuss later if we had to cross that road. We prayed hard that we would never see that road and began asking God for the strength to raise a medically complex child.
On March 18th, the doctor’s office called with Lainey’s diagnosis – Trisomy 18, also known as Edwards’ Syndrome. We had never heard of this and quickly realized we were on that road we prayed to never cross. We were stunned to discover that we received Lainey’s diagnosis on the international day of Trisomy 18 awareness. Yet again, Lainey took the opportunity to teach as she shed light on a condition so unfamiliar to us. The information was grim, with the statistics showing less than 50% of babies diagnosed surviving to full term, and less than 10% of those surviving to their first birthday. The babies who survived often required full-time medical assistance with little hope of mobility or speech.
The diagnosis left us devastated and terrified, but our Lainey remained unshaken. We watched her wiggle and dance around on ultrasounds, full of life and so much zeal; Completely free of all the fear that crippled her mom and dad. Those ultrasounds vividly showed that our little girl was being held by the God who was knitting her, her heartbeat perfectly timed to the rhythm He set in motion. Through her dancing, Lainey taught us that sometimes we are called to trust God more than we can explain Him. We trusted that God could heal Lainey, but that even if He didn’t, she was His and she was perfect.
As we journeyed through this pregnancy, so many of the roads were unknown but we were met with love and support every step of the way. Doctors and nurses cried and prayed with us. Acquaintances and strangers, believers and nonbelievers, reached out to tell us they were lifting Lainey up in prayer. We were also met with the loving support of Perinatal Comfort Care. This incredible ministry walked with us and encouraged us to start living our life with Lainey now; to capture our special moments together and make every day with Lainey count. We can say without hesitation that Lainey fully lived the eight months she was carried. She was surrounded by laughter, excitement, adventures, parties, bedtime stories, and family time. Lainey taught us how to live intentionally and how to find the joy in each day.
The pregnancy flew by as Lainey continued to defy the odds. As time went on, extra fluid built up around Lainey so we didn’t get to feel her kick very often. We were forced to slow down and really pay attention in order to notice her tiny movements. Lainey would breakthrough in unexpected moments to reassure us she was there. Waiting for her tiny movements showed us how to make room for stillness and silence. Lainey’s quiet presence taught us that God is at work even when we don’t necessarily feel Him.
On August 21, 2019, Lainey got her miracle. She was stillborn — born into Heaven — where she is now perfect, healed, and whole. She was surrounded by amazing family who adored her and who will forever treasure the love they experienced while holding her. Lainey knew nothing but love during her time on this earth and for that we are forever grateful.
In what we are sure will not be her final act of teaching, Lainey has become a Gator. We learned of an incredible opportunity to donate and preserve Lainey’s heart at the University of Florida to be used in training future pediatric cardiologists. Because her heart defects were so rare, Lainey’s gift will provide medical students with a missing piece that they were not previously able to hold and study. We know her tiny heart will inspire many to pursue careers that will impact and potentially save countless lives. Lainey’s heart will literally live on and that makes us incredibly proud.
To our precious Lainey, until we meet again, know that your mommy and daddy adore you and will spend forever doing our best to honor you.
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