This is the eloquently delivered eulogy that was given by our dear friend Kate, who was also one of Nora’s caregivers. I believe I can speak for all of us there by saying that we were captivated by every word. If you don’t have time to read it all in one sitting, it is definitely worth coming back to. And now Kate:
When William asked me if I would do the eulogy at Nora’s funeral, I was first and foremost, humbled. And then I panicked. What in the world could I possibly say that would display the life of Nora as it really was? How could I talk about this baby’s impact on the world? Though we are all seeing it clearly, there are no words to describe it. And so I did what I’ve learned to do in times that I have a job to complete and no clue how or where to begin. I went to God. In the quiet corner of my living room with a cup of coffee in the early hours of the morning, I asked God to give me the words I needed to let His glory shine through this tiny life.
Before my prayer ended, I knew where I was going to start. I knew that I needed to go back nearly two thousand years ago, when a young peasant girl, named Mary, was approached by an angel. Mary was probably only about 12 or 13 years old when the angel Gabriel came to her. She had recently become engaged to a carpenter named Joseph. Mary was an ordinary Jewish girl, looking forward to marriage. Suddenly her life would forever be changed.
Mary was fearful and troubled in the presence of the angel. She could never have expected what the angel would say— that she would have a child, and her son would be the Messiah. And He would change the world and He would save humanity. Though terribly frightened, she responded to God with belief and obedience… “I am the handmaid of the Lord. Let it be done to me according to Your word.”
Although Mary’s life held great honor, her calling would demand great suffering as well. Just as there is pain in childbirth and motherhood, there would be much pain in the privilege of being the mother of the Messiah.
Fast forward to nearly two thousand years later. A young couple sits in a room with their obstetrician. This couple had recently received the devastating news that their child in utero had a genetic disorder known as trisomy 18. With this diagnosis, comes the knowledge that the disorder is, “incompatible with life.” What does this mean? It means that the extra 18th chromosome causes life ending biologic conditions with the heart, brain, lungs and/or other organs. It meant a death sentence.
The couple was presented two options, neither of which would be easy. They could choose to end the pregnancy, sparing themselves and possibly their unborn baby from the pain and devastation of this condition. Or they could carry this baby until God decided it was time to call His child home. They would suffer loss and heartache, but they would have no clue when or how it would happen. They were terribly frightened, but responded to God with belief and obedience…”We would like to continue the pregnancy.” At that moment, the young woman made a promise to her unborn child, “I will carry you.” I have often thought of how Aleisa reminded me of the mother of God. Her faith in God, her obedience and her willingness to suffer at all costs to carry out His will for her parallels that of our Blessed Mother. In fact, on the mantle of their living room sits a small figure of Mary holding Jesus as a baby. On the nights I would care for Nora, that never failed to catch my eye and I never failed to recognize the similarities between these two women.
It is nearly impossible to tell the story of Nora without first beginning with her parents. When William and Aleisa committed to choosing life for Nora, they committed to a terrifying road of uncertainty. They knew that to travel this road, they would absolutely need to cling to God. They did not know how long Nora would live or if she would even be born alive. Almost every day, Aleisa kept an account of this scary road, and every single day she wrote, she displayed the love and tenderness of God as He carried she and William through the pregnancy. She solicited prayers from her blog followers, which were growing in numbers as a result of Aleisa’s incredible gift to capture attention through the written word. Aleisa fell in love with her unborn baby and had one wish… to hold her alive, if only for just a short time. “I just want to hold her alive.” She began to document visible signs from God that this would happen. One of the first ones that I can recall was her entry about Greta’s Dream. Before they knew that Nora was a girl, when the news was still quite fresh, William walked past Greta’s room one morning and heard her laughing. Intrigued because it was too early for her to be awake, he walked in to discover his daughter was still asleep. He woke her up and asked her what she was dreaming about. Greta told William that she had a dream that mommy had a baby girl and that he and mommy were feeding the baby while she and Gavin played on the floor. Aleisa felt comforted by Greta’s dream, wondering if perhaps God was sending her a message. Over and over again, Aleisa documented these accounts, which she began to firmly believe were tangible signs from God. Within the depths of her soul, she KNEW He was telling her to trust him. That he would not fail her and that He had control of everything.
I will never forget the day my sister, Maggie, told me Aleisa wanted me present for Nora’s delivery. As her best friend’s sister and someone who had 12 years of experience as a Labor and Delivery nurse, Aleisa felt comfortable having me there. I was extremely honored to have been asked. I adored Aleisa, who provided so much for our family when my brother-in-law, Mitch passed away suddenly.
On April 17th, 2012, Maggie and I drove to Bethesda North Hospital. We prayed the rosary on the way, taking comfort in knowing that God heard us. The day was filled with bright sunshine and was gloriously beautiful.
After an uneventful labor (in Labor and Delivery, an uneventful labor is truly a wonderful thing), at 5:12 in the evening, Miss Nora Rose made her grand entrance into the world with a hearty cry. The room was filled with joy that she had made it safely into the world and that her mother’s one wish had indeed come true. She would hold her baby alive!
From Nora’s first days on earth, Aleisa blogged daily. Initially, in that hospital room, there was joy, the next day, there was despair over the thought of losing her precious girl. In the first few days at home, the feeling turned to anxiety over when the hourglass of sand of Nora’s life would be emptying. Unknown to them, this pattern of emotions would be what they experienced for two years. But day after day, Aleisa and William clung to God in this time of uncertainty. And day after day, more and more people from around the world logged on to their computers to check in on Nora and her family and to gain a bit of footing and perspective as Aleisa documented their journey so openly, honestly, joyfully, painfully and with un-wavering faith in God.
I was blessed to have the opportunity to spend time with Nora every once in while. There were nights I would go over to the Yuskos and take over her nighttime care. Little did I know just how much these precious hours with her would change my perspective, my mothering and my life. Most nights, both William and Aleisa were awake when I got there. As William went up to bed, he always said, “Thank you, Kate.” And I always said, “No. Thank YOU!” He never quite understood that and thought it was so backwards for me to be thanking him. As Nora got older and he was seeing her impact on so many others, I believe he began to understand. Aleisa would usually stay up a bit later, finishing up her to-do list and chatting with me. I treasured these moments, as most of them I recall to be filled with laughter, as this is one hilarious lady! Sometimes I was there for an hour before she would go up to bed! She found it too tempting to see Nora sitting or lying there and not give her one last kiss, hug or sniff for the day.
Nora took to the role of the house baby princess quite well. This baby visibly LOVED her family. And how could you not love people who showered you with 24/7 love, kisses, playtime, cuddling, music and silly noises? I don’t know if I ever visibly recognized the love a child has for a parent until Nora. One night, when Aleisa was taking her sweet time handing over Nora before heading to bed, I happened to catch an exchange between Nora and her mother that I will never forget. Aleisa was talking to her in one of her many “Nora” voices and Nora was listening intently. I happened to be watching her eyes and I swear, I saw something incredible. If Nora could have talked, she would have said, “Mommy, I love you so, so much. Thank you, mommy. Thank you.” The eyes say so much. They can display incredible love. They can display hatred. They can dance with joy or be filled with sorrow. Nora’s were indescribably radiant… almost sparkling. That moment is imprinted on my brain forever. I never told Aleisa this and perhaps innately, I knew there would come a time when she needed to hear it most. I got up from the couch and walked to my purse as tears welled up in my eyes… I may have muttered something about “allergies”, which I actually don’t suffer from… who knows. What a gift to have witnessed that brief, but life altering moment between mother and child. I am certain Nora looked at her parents and at Greta and Gavin like that quite often. I am so lucky to have witnessed it one of those times.
I once told my sister Maggie that I read somewhere that you can gauge how much a child is loved by the number of nicknames he or she has. I prided myself on the fact that my own children had a few, hence proving that I loved them a lot. Well if that is the case, William and Aleisa put John and me to shame. Nora had a very long list, some of which included: Fuzzy Lady, Lady, Lady Baby, Big Lady, Happy Baby, Sad Baby, Dis, Dassy, Dis Das, Dasser, Norns, Nornor, Norsicle, Norsies and the ever infamous high octave prolonged “E” sound that I will not even attempt to do, but heard Aleisa do a million times. Nora LOVED it when her mom made that sound because she knew that was just for her! Even Gavin had a special name for Nora and often told her how much he loved her “smelly fuzzy head”.
The world knew through Aleisa’s blog that there were two things Nora especially loved… one was her “milkies”, the other were her “baffs”. Aleisa joked once that she wondered if Nora were really a mermaid as often times a nice bath was the ONLY thing that comforted her on a bad day when all else was failing. Nora also loved to play and really enjoyed the cause and effect toys she had. She was so proud of herself when she would hit a toy a certain way and music would play or it would light up. She would do it again and again and was quite the showoff. Nora also loved to sit in her little chair and play with this container of dried beans. Seems simple, but she enjoyed the fact that she could push them around and make them go wherever she wanted. Nora clearly loved to be in control and enjoyed flaunting her authority to her toys and playthings. To Greta and Gavin, Nora was their treasured baby sister. They showered her with love and attention, made camps with blankets and invited her in and played with her all the time. Greta often drew pictures and wrote notes for Nora and hung them up in the kitchen. Aleisa noticed how much Nora missed her brother and sister when they were not home. Nora also loved her nanny, and the Yuskos adopted family member, Kelly. Or as the world knows her, “Our Kelly.” And Kelly reciprocated that love for Nora. Nora also captured the hearts of her the nurses that helped with her care… Amy, who was Aleisa’s nurse when Nora was born and has been caring for her from the beginning, Kristy and Tracy. She captivated her grandparents, aunts and uncles, all who showered her with love. What an incredibly lucky baby!
Nora also loved music, particularly lullabies. The Mission Main theme, by Ennio Marricone was introduced to her by one of her nurses, Tracy and was often used to sooth her in the car on the way to appointments or other places. There was one other song that Nora loved and which notably soothed her, particularly in the hospital. It was the Happy Birthday song. As she lays her precious baby to rest on her birthday, Aleisa can feel comforted by knowing that her daughter is joyfully singing this song to her mother from heaven above. I imagine her eyes sparkling as she uses her newfound words and her legs to carry her around and around as she dances. Though some may think, “How horribly sad for Aleisa, on her birthday, to have to say her final goodbye to Nora,” I see this is as one of God’s many gifts to Aleisa as every year when that song is sung to her, she can know how loudly one joyous little toddler is singing one of her favorite songs from heaven above.
Nora brought so much joy to that house that I completely understood the anxiety and fear that gripped William and Aleisa with the knowledge that Nora’s life on earth would likely be short. We all have our crosses to bear in life and his has to be one of the heaviest. Their cross was NOT in the day to day duties required to care for a special needs child. In fact, they LOVED taking care of Nora. They loved watching her grow and thrive as the weeks and months flew by. She was their daughter and loved every single thing about being her parents.
My sister, Ruth, once told me that in life we all have crosses. At times, our cross is heavy and at other times it is light. In those moments when ours are light, we are called to be Simon. We are called to help those with heavy crosses carry theirs and help lighten their load just like Simon did for Jesus. Aleisa and William bore the very heavy cross of fear and anxiety. They reached for God over and over for His calm reassurance and they found it in the many Simons that God sent to minister to them during this time. From the beginning, they found Simon in their obstetrician, Dr. Sullivan, who lovingly encouraged their decision to continue the pregnancy. They found him in their pediatrician, Dr. Bolling, in their cardiologist, Dr. Hirsch, and in all the doctors that were part of her care. Meanwhile, Nora impressed and sometimes baffled them with her health, progress and growth. One Simon that is fresh in my memory is Andre. Andre is the UPS driver that delivers to William’s downtown office. Every day, Andre would stop in, have a kind and uplifting word or phrase about the Lord for William, and move on with his workday. This exchange went on for a long time. One day, after a particularly trying and difficult morning, William pulled into the parking lot of his office building. Andre simultaneously pulled up and looked over at William and they locked eyes. Again, the eyes reveal so much. Andre got out of his truck, walked over to William and said, “William, the Lord just told me to give you a hug.” As William explained it, “So there we were, two dudes, one in a UPS uniform, hugging in a parking lot, in the middle of downtown.” Andre was also at the hospital on Monday evening when things were going very badly with Nora. I remember all of us there, standing around her bed, as Andre, fresh from work and still in his uniform, boldly and beautifully prayed over her. The entire time he had the most radiant smile on his face as he exhibited pure love for and trust in God’s mercy and compassion. If real angels in the flesh roam the earth, I am certain Andre is one of them.
In the midst of carrying their cross, Aleisa and William were also being Simon to many others who were finding comfort, perspective and ultimately, God, through Aleisa’s willingness to document and share their journey. They carried a heavy cross, yet were such a comfort to others while doing so. It is impossible for me to put that kind of service to the Lord into words. So I won’t try. I just ask that we all let that sink in.
Nora’s purpose for being here is evident. God and His ways are often a mystery, but I believe when we fulfill what He is asking of us and carry out His will for us, He becomes amazingly transparent. God’s message is clear, or at least it is for me. God showed the world through Nora and through her parents that EVERY SINGLE HUMAN LIFE HAS IMMEASUABLE VALUE. He took an ordinary couple, who did not realize the potential He had gifted them with at their birth, gave them a child, who in the eyes of the some in the world did not have much value, and asked them to give her life. This child would not walk and she would not talk. She would not feed herself. She would be completely dependent on them. She would require constant care. She would be healthy, yet medically fragile and every illness would ignite incredible fear within their hearts. And God’s plan, if they said yes, was to ignite passion from the depths of His daughter, Aleisa’s, soul with the gift of writing that He gave her. God’s plan was to use her to show the world how much she and William loved this child, her adorable and fun personality, and the joy she brought to them day after day after day. God’s plan was to use her to show the world how much He loved Aleisa and William, took care of them, sent angels for them. God’s plan was to show us the power of prayer and to show each of us He loves us and that we matter so much. God’s plan was to use this family to bring thousands of people, from all over the world, to Him. God’s plan was to show that He is imprinted in every human life.
Years ago, my father attended a conference in Moscow, Russia. Speaking at the conference was French pediatrician and geneticist, Dr. Jerome Legeune. Dr. Legeune was best known for his discovery that Down syndrome was the result of an extra 21st chromosome. At this conference, were a group of Russian doctors. Dr. Legeune began to describe the science of cell division. He went on to say that at conception, the single cell formed from the sperm and egg, called a zygote, divided into two cells. The two cells became four, the four divided and became eight and the eight divided and became sixteen. At the sixteen -cell stage of division, the cells broke apart and formed two groups of cells… one a group of thirteen and the other a group of three. The group of thirteen became supporting structures for the new life and the group of three became the recognizable child. He then said: “Right from the beginning, there is the imprint of the trinity on the human person.”
“This was more than just a statement”, my father said. “It was a proclamation made to an audience made up of entirely non-believers.”
We are masterpieces of God… each and every one of us.
Last weekend, I convinced Aleisa to let me come to the hospital and spend the night with Nora on Sunday. Nora seemed to be having some good days, and besides, I missed her and knew that the Yuskos could use some sleep. I had no idea when I left that Monday morning that Nora was approaching the finish line of life on earth. I had no idea that we I would be back later that evening under much different circumstances. But when I left, I did know something was different. Aleisa and William had a very difficult time sleeping in the parent room throughout their two -week stay. It was very loud and doors were always opening and closing (loudly) all night long. On Sunday night, Aleisa taped a homemade sign reminding other guests (parents of sick children) of the need for quiet. When she came to Nora’s room on Monday morning, I asked her how she slept. Her response was, “Good!” I had not heard once that she had slept well during Nora’s hospitalization. My immediate feeling was, “Something is coming. She needed that sleep last night for something big.”
I have thought so much about Nora’s last few hours on earth and am overwhelmed with the evidence of God’s presence during that difficult, but miraculously beautiful time. From the family and friends that rushed to the Yusko’s side, to the incredibly compassionate and loving Dr. Hirsch, Nora’s cardiologist, and the beautiful way he spoke to them about their precious girl’s prognosis, God tended to their every need right then. Whatever they seemed to need, He provided on the spot. He tended to us all, listening to our prayers and comforting us continuously.
If I live to be two hundred years old, I don’t think I will ever witness a moment like the one when Jesus came to bring Nora to Heaven. The room was dimly lit and there was soft and beautiful music playing. Aleisa lay next to Nora, talking softly to her and singing, her hand over Nora’s heart. As I stood at the bedside behind Aleisa, one hand reached over onto Nora’s forehead and one arm linked together with Amy’s, I heard William praying through his heartache. In between sobs of sorrow, he was thanking God for the two years he gave them with Nora. He thanked Him over and over and in an instant, my mind went to the last supper, “On the night He was betrayed, Jesus took bread, broke it and gave thanks…” On the night Jesus was betrayed, knowing that He was to be horrifically beaten and then crucified, he thanked His father. During the most painful, soul crushing moment of William’s life, He was thankful. I have never witnessed a more Christ like display of emotions.
We all have our visions of what it will be like when we go to Heaven. I know I have mine and I have imagined over and over this week about the beautiful reunion with Nora that William and Aleisa will experience when they arrive. I imagine an overly excited toddler knowing the time is near. I imagine her running to the huge, beautiful gate at the entrance of Heaven and her cheeks pressing through the gate’s gold and pearl bars, like a child awaiting a parent returning home and running to the window. I imagine her squeals and her delight as she sees them approaching, each one at different times, but with the same reaction from Nora. As the Gates begin to open, they see her jumping, laughing and clapping with the sheer joy of a two year old. Nora will run toward them, arms outstretched and jump into their arms, wrapping her sweet chubby arms around their necks. Before Nora can pull them to the best place to be after returning home from a long journey (a relaxing bubble baff), they will be welcomed into the arms of Jesus, who will lovingly whisper:
“Well done, my good and faithful servant.”
Aleisa and William, THANK YOU, for allowing me to be part of Nora’s life. I will carry her sweet smell, soft skin, sparkling eyes and beautiful smile in my heart forever.