I wanted to share this beautiful eulogy written by a fellow trisomy 18 mother. She lost her daughter, Emmery, in May, a mere 65 hours after she was born. Her death was caused by neurologically mediated apnea. The words she spoke at her daughter’s memorial are beautiful, and I think that everyone should read them. They reiterate the value that is found in any life, no matter how short, and no matter what that life looks like compared to “normal.”
THE GIFTS OF EMMERY
How is it that a bereaved mother can stand here today and have air in her lungs and with a joyful heart speak of her loss? That is one of the many gifts of Emmery. Emmery was an unexpected blessing, the result of the deep love that Billy and I share. When I told Billy that we were “surprise” expecting a fourth child, I showed him the pregnancy test and told him he could only utter one word to describe what he felt. “Awesome”, he said. And how very right that word was, looking back on our journey with Emmery.
Excitement and joy quickly turned to fear and anxiety once we received Emmery’s prognosis at 18 weeks of pregnancy. “Trisomy 18”, “Not compatible with life”. I will forever remember that phone call. I immediately felt a deep grief, a deep despair that was swallowing me whole. How could this happen? Why my sweet baby? Every kick was a painful reminder of my pending loss. Options were discussed, “termination”, “stillbirth”, “unlikely to survive birth”. Those days felt so dark and hopeless. I doubted my ability to continue my pregnancy without going completely crazy. It was then, in those early sad weeks after her diagnosis that Emmery gave me her first gift- a dream. I awoke at 4 a.m. crying. I woke Billy up to tell him how real it was. In the dream, she simply told me 2 things: she was giving her life to protect our family and that she was coming to feel love, nothing else. I felt different in my soul. Honored to be a vessel for such a miracle. Inspired. Faith became something that found ME through HER. I told Billy many times that if I could remember the peaceful feeling of that dream, I could go on despite my fear.
As the months of my pregnancy passed, I enjoyed becoming “still”. That stillness lead me to a deeper connection to Emmery. Enjoying feeling her movement. Relishing in the joy and laughter our family shares on a daily basis. I hoped she could feel all of it, especially the support and love that Billy was giving me, it was amazing. Through that stillness, I found an inner voice, a guiding force. That, I realize now was another of Emmery’s gifts to me- simple things would come to me, “Have Faith”, “Be Good”. Positivity never felt so right. It felt so very wrong to be negative, to wonder “why me”, to be bitter or angry.
It was amazing to us as the pregnancy continued that Emmery was still with us. I consumed myself with medical literature on Trisomy 18, trying to be as prepared as I could. I met other parents of Trisomy 18 babies. These mothers were a blessing to me with their help and information. It was no coincidence that we found each other. One mother asked to meet me at the Blessed Seelos shrine. She took time away from her own Trisomy 18 daughter, who was recovering from heart repair surgery at Children’s Hospital. I was lucky that my oldest son Wyatt was off of school for the day and accompanied me to the Shrine. We soon met with Mr. Greg who prayed with us with the relic cross. He told me that the whole Shrine had been praying for Emmery and I. I was in complete awe- complete strangers were crying and praying with Wyatt and I. Showing me the goodness in this world, showing me the depths of their faith. It was such a blessing to share such a powerful experience with Wyatt, something special that I know I will never forget. Another gift from Emmery.
As we got closer to delivery, my anxiety increased. There were certain things I NEEDED from Emmery. I was already filled with deep gratitiude to her- she had strengthened my marriage, shown me how much love our family had and remained alive for us. The things I needed from her I could rattle off like a to do list:
Be born alive
Look into my eyes
Be able to tell her thank you
Meet and take a picture with her siblings
I would tell Billy these things daily. That is what I needed from her. As delivery approached, we were still in awe that Emmery was with us. I had read so many stories of Trisomy 18 babies that ended tragically. I prayed and prayed that Emmery could give me what I needed. And did she ever!
Emmery Faith Vaughn was born at 12:29 on Monday, May 9, 2016. The doctors and the operating room were silent. She made no sound. She was 4 lbs, just barely. The doctors handed her to Billy and told us they expected her to quickly pass away. The first words we told her were “Thank you”. We told her how very much we loved her and watched her very slow breathing. As we spoke to her and I rubbed her head, she turned more pink. She opened her eyes! I was so proud of my fighting girl! It was as if she was fighting death to feel more love. As if to say- “Just let me stay a little longer”. The doctors were impressed with her recovery and took her to meet Wyatt, Sawyer and Annalyse. Another milestone I had desperately wanted her to reach. She gave us 24 bliss filled hours- the esophageal issues that I consumed myself studying about, did not exist. The possible medical and ethical dilemmas that I had tortured myself and focused my energy on, simply were not there. More gifts from Emmery. At 24 hours old, she had her first apnea event. She easily could have passed away right there. Billy had quickly gone home to shower, he never would have gotten over her passing away in his absence. Again, she fought back. Each apnea episode from then on was a chance to say goodbye. To kiss her, to love her, to say her full name to her, tell her how very loved she was, to thank her, tell her she had done her job- she had given us everything we needed. But she was not done, she gave us over 30 more chances to say goodbye. She was held for every second of her life. She was read her special book “I’d Know You Anywhere, My Love”, played her special song, the Beatles “All You Need is Love”. When she passed away it was 5:38 in the morning on May 12, 2016. She was snuggled inside my shirt, skin-to-skin with me. Billy and I were napping together, he in the chair beside my bed, we were holding hands. My sister was awake and woke us up to advise that Emmery was starting another apnea episode. Emmery peacefully left us, literally out of a circle of love- yet another gift, peace.
Although there have been very hard days since she passed away, I have recently seen a grief counselor to find out if I am going crazy. Do I have delayed grief? Why am I feeling so hopeful? So full of love and joy? Because of the gifts of Emmery! It’s what she brought to me. Gratitude. Appreciation. Faith. Hope. Deeper Love. Positivity. Peace.
I once thought that Emmery was the manifestation of every wrong thing or misdeed that I have ever done in my life, I realize now that it was quite the opposite. She was the living form of every kind word that I have ever spoken, every good deed that I have ever done. If given the choice, I would carry Emmery again a million times over, just to spend 65 more hours with her. We told her that we chose her, but it has become so apparent that she CHOSE US. I am blessed to be chosen as a vessel for an angel. There are just some of the many gifts of Emmery, far too many to count. I know that for the rest of my life I have learned to quiet down, and listen to that guiding force and voice of your soul, this was Emmery’s lesson. We will see you again my sweet girl, we will know you anywhere.