On August 14th, 2011 we found out that our family was expanding, as would soon be my waistline. We were ecstatic, over-the-moon excited. It was a typical pregnancy in many ways, branded with the standard morning/all day sickness, fatigue, cravings and aversions. During the routine 20 week ultrasound, our world grew fearfully dim as our doctor enlightened us of a couple of soft markers that were noted by the ultrasound technician. It was the day that the medical terms ‘choroid plexus cyst’ and ‘single umbilical artery’ became part of our vernacular and would become repeatedly Googled over and over again in a frantic search for hope over the next few weeks.
At 24 weeks, we had an amniocentesis done just for “peace of mind”. Our doctors and geneticist reassured us that based on our ages, medical and genetic history, we had a 75% chance of having a healthy, “normal” baby. We were not prepared for the results of that test on January 9th, 2012 that came back positive for full trisomy 18. Our whole world came crashing down. All of our hopes, dreams and aspirations were seemingly shattered into a million pieces.
But only for the grace and mercy of God were we able to keep breathing. We were given the option of terminating the pregnancy as “most of these babies won’t make it to delivery” and “will likely only live a few hours, maybe days”. Why prolong the inevitable? I asked my best friend through a veil of angry heartbroken tears. Her response gave me the clear perspective that this baby’s life was just as important and meaningful as ANY life. “Aleisa, we’re ALL going to die someday,” she said, “Does that mean we should just pull the trigger now?” It was then in that moment that I made the promise to my unborn baby, “I WILL CARRY YOU,” placing all of my faith and trust in a God who I was very angry with, but who I knew fiercely loved me — and my baby.
On April 17, 2012 Nora Rose Yusko was born. Against all odds, the sound of her first cry filled the room and filled our hearts with hope and extraordinary love. As I held her close and looked back into her beautiful blue eyes – I finally began to understand the meaning of true unconditional love. There were conditions and a serious diagnosis attached to this precious baby (trisomy 18) – scary, unfamiliar, somber, life limiting conditions that ran the risk of completely breaking my heart and forever changing life as I knew it. But to hold her, to kiss her skin, to breathe her in and absorb the absolute wonder of her mighty little life – none of those risks mattered. She was perfect in my eyes and I wouldn’t have traded her or the experience of having her as my daughter for anything in the world.
“These babies don’t typically live long…” the harsh and foreboding words of doctors, hospice affiliates, and counselors echoed in the dark recesses of our minds. In blind faith, we put one foot in front of the other, taking special care to treasure each and every moment. The days turned into weeks, the weeks turned into months and the months turned into years. As time went on – those words lost their power over us. In many ways, Nora was a typical baby who was quite able to communicate with us, expressing her likes and dislikes. Of course she had her developmental and physical delays – but just as with everything else, Nora was going to write her own story and do things her own way. She loved to play or cuddle with her cool big brother Gavin and her sweet big sister Greta. She truly enjoyed being “just one of the kids”. Taking multiple baths (“baffs”) a day with Mommy or Daddy in the jet tub was her all-time favorite thing to do. She was likely the cleanest baby there ever was! We started off with taking her on walks in the neighborhood and then even had the opportunity to take her on two vacations up North with us. For just over two years (777 days), God lent us this beautiful little soul. She made a brilliant and unforgettable impact on this earth, and touched countless lives all over the globe. The sunny days that we hoped would never end clouded over in late May of 2014. We spent 15 formidable days in the hospital when Nora’s stomach inexplicably flipped. Emergency surgeries, blood transfusions, surrounded by towers of medical equipment and a team of phenomenal doctors and nurses in the CICU – there she was. Despite all best efforts, her time with us drew to a close in the very early morning hours of June 3, 2014. She left this world just as she entered it — surrounded by those who loved her fiercely. We are forever grateful for the gift of knowing Nora Rose Yusko.
“I knew you before I formed you in your mother’s womb. Before you were born I set you apart and appointed you as my prophet to the nations.” (Jeremiah 1:5 NLT)
This is our journey from the very beginning: In the Beginning
Nora’s exquisite birth photography: Beautiful Beginnings