This is the post I almost didn’t write. It’s easy for me to wax philosophically, or historically, or musically, for hours. Although I can and do get extremely emotionally charged about these topics, they don’t require delving into the depths of my soul, the most closed off places of my emotional being. Talking about any of these topics is safe, I don’t have to share feelings or potentially make myself vulnerable. I almost didn’t write this because it is about something still emotionally raw. Yet, I hope, through telling the story, of saying goodbye with love, that healing and grace will continue. Perhaps through telling the story someone else may find peace.
Time Flies By
Five years. A short span of time in our hustle and bustle world of adulting. It seems that every year flies by faster and faster, always running, always busy, not stopping nearly often enough to reflect. Those same five years, in the life of a child, however, mark an infinite amount of time and changes. Perhaps more changes happen in the first five years than happen in any other five year span in human life. Babies go from being completely dependent, to walking and talking, to a modicum of independence, to self sufficiency.
So much is encapsulated in a child’s fifth birthday, for both child and parents. For most, the days of diapers and bottles and pacifiers have drawn to a close and the days of daycare are waning. Children are developing friendships and parents are looking forward to kindergarten. The fifth birthday party is so often filled with the promises of new beginnings and fresh promises. Except when it isn’t. When you celebrate another birthday without the child there.
The Unfathomable
Five years ago, yesterday, November 30th, 2018, I experienced every parents worst nightmare. In the span of less than fifteen minutes I both said hello and goodbye to my daughter, Elizabeth. She was born, baptized and gained Heaven, peacefully, in her mother’s and my arms. The whole of what any of us could possibly hope for in this mortal life, condensed so perfectly, in so little time. Like so many other precious little ones, this earthly sojourn was just a blip on her path. Elizabeth was better suited for Heaven.
They say that it’s different for fathers. That fathers don’t have the same connection with a baby because they don’t carry the child within them. Biologically this is true. The immensity of the experience of carrying a child in the womb is something, I, as a father, cannot even begin to comprehend. Yet I would argue that fathers too experience pregnancy in their own way. From the excitement of the positive pregnancy test, to the little fingers and toes wiggling on the first ultrasound, to feeling baby’s first kicks, the father shares externally with what the mother is experiencing internally.
A baby knows its mother more intimately and personally than anyone else ever will. Although none of us actually remember it, the experience of growing and developing inside our mothers wombs is magnanimous, both physically and spiritually. Yet, just as the baby knows its mother, it also knows its father. Very early on in the pregnancy the baby begins to feel and hear. They sense the fathers hand as it gently caresses their mothers belly, they hear the masculine voice calling them by name and associate it with daddy.
The Beauty of Life
Elizabeth is the encapsulation of being open to life. After years of infertility and miscarriage, her mother and I had been blessed with her sister Ruth, who was about twenty months old when Elizabeth was conceived. Lizzie, as she would quickly come to be known, was the best kind of gift. Unplanned, unexpected, yet the answer to every prayer we could offer. A little sister for Ruth, an amazing miracle for mom and dad.
The positive pregnancy test came in early summer. Full of promise and hope, I strutted around like I had just won the lottery, again. It’s funny, at least for me, finding out I was going to be a father never became passé. The excitement was always new and fresh, as if I’d never experienced that immensity of joy before. In mid August I first laid eyes on Elizabeth, in real time, through the power of 3D ultrasound. I had never seen anything more beautiful, besides her mother and sister.
Haunted By The Past
Yet the fear was still palpable. After previously losing two babies to miscarriage and the experience of an extremely high risk pregnancy with Ruth, my body was constantly in a state of high anxiety. Waiting to hear the heartbeat with the doppler monitor, waiting to see baby’s movements on the next ultrasound. For expecting parents this is the worst part of having a child, because in pregnancy you feel completely helpless. You cannot do anything for the child. The mother can eat right and take the right vitamins, but the rest is entirely up to God. Obviously it’s always up to God, but once the baby is born and the parents can tangibly hold them, we like to believe that we have some modicum of control. That we can care for them wholly, protect them from harm.
I think that the worst job in medicine must be that of an ultrasound tech. They know exactly what they are looking at but they’re not allowed to say anything, despite the patients ever pressing inquiries. Only that they will have the doctor review and be in touch. I’ve learned through several baby ultrasounds and many of my own personal ultrasounds, however, that it is never a good sign when the ultrasound tech starts fumbling with their words and their demeanor changes in an instant.
The Sum of All Fears
Elizabeth’s sixteen week ultrasound brought the news that she had a concerning cyst-like formation on her abdomen and we would be referred to a maternal fetal specialist. Only by the grace of God did her mother and I survive the panic and anxiety of waiting the three weeks to get in with this specialist. There was simply nothing we could do, except wait. Having a toddler light up our lives certainly dispersed the anxiety a bit though.
Finally the appointment came, again the ultrasound tech started fumbling with her words, finally ending with, “let me get the doctor.” The doctor, after doing his own ultrasound, spoke plainly and clinically, yet with an air of human empathy that I have never forgotten. “I know your faith is resolute,” he said, “and whatever I tell you is not going to change your decision on this pregnancy, but I do have grave concerns.” Then the worst part, “I’d like to wait another three weeks though before I make any diagnosis.” “We’ll make an appointment to get you back then.” Again the waiting game. Elizabeth simply wasn’t big enough yet to accurately determine what was going on.
Still Hope Remains
No matter the presumed reality, the human spirit will cling onto even the most miniscule grain of hope. Another three weeks passed of near crippling anxiety and panic. I grew physically ill, Elizabeth’s mother grew even more sick. Not the sickness that ordinarily accompanies pregnancy, this sickness had the look and feel of being on the verge of death. The follow up appointment was the Monday after Thanksgiving, the holiday weekend passed in a blur. In a moment of positivity and strength we decorated our house for Christmas that weekend. A nod to anticipated joy while in the present falling apart.
But By The Grace of God
The drive to the hospital that Monday morning seemed to be an eternity and an instant at the same time. Driving on the highway that morning though, the thought crossed my mind that maybe if I just kept driving, past the hospital, far out of town, perhaps we could drive out of this bad dream. Alas, unlike fairy tales though, this is not how real life works. The ultrasound that Monday brought the news that Elizabeth had a cleft palette, a heart defect, stomach and bowel dysfunction and what seemed like a host of other potentialities. The most pressing problems though were that the amniotic fluid was rapidly dispersing and Elizabeth was sick, very sick. Mom was very sick too.
The Decision No One Should Face
We had never felt the need for having an amniocenteses with any of our pregnancies. It simply didn’t matter to us. The gender, the genetics, the unveiling of a chromosomal problem. None of it mattered. The only thing we were concerned with was that we were doing everything we could to preserve life. The babies were a beautiful gift from God and we felt our only part was to nourish the life HE had created.
Mom’s health was fading, quickly. Mirror syndrome is the terminology I learned. When the baby, in utero, becomes gravely ill the mother’s body will mirror the baby’s symptoms. I imagine, in an effort to try to alleviate the child’s pain, as mothers (and fathers) are wont to do. All of a sudden an amnio became not just necessary but crucial. Elizabeth was just barely past the stage of viability, decisions would have to be made.
Barely Hanging On
The amnio was Wednesday morning, November 28th. There was barely enough amniotic fluid to collect a sample. I held Elizabeth in my heart, I held on to her mother’s hand so tight I was afraid I would break bones. I cried, I prayed, I put my faith in God and the steady hands of the doctor. By noon that day the phone call came. Elizabeth had Trisomy 13, a rare genetic condition which is not compatible with life outside the womb. In other words there was nothing we could do to save her. Even with this news we would have opted to carry to full term. However, there were serious doubts about how much longer Mom could survive. We had to induce labor, and soon.
There were about thirty-six hours before the induction would happen. We met with a priest, we visited a funeral home. It’s a strange, out of body experience almost, to plan your own child’s funeral, to pick out a tiny little box, just the right size for their body, that they can be buried in. No parent should ever have to do this. It is simply against the laws of nature. For our baby who was not even born yet, but presently still very much alive in utero, we had planned a funeral and burial within the span of just hours.
Miracles Occur In The Strangest Places
The induction was designed to be very quick. The maximum dose of pitocin was started and cytotec was placed to accelerate labor. Mom was fading quickly, no Earthly medicine could alter Elizabeth’s course so we had to take extreme measures to save Mom. Elizabeth inherited a healthy dose of stubbornness from both of her parents though, and Svagera’s aren’t typically known for going down without a fight.
Our doctor started the induction process at 7 am, her plan was to return around lunch time, when she figured we would be ready to deliver. At 1 pm Elizabeth’s heart was still beating strongly, and there was minimal dilation. The decision was made that more cytotec would be placed, we were warned though that no baby, healthy or not, could survive this amount of cytotec. It had to be done, Ruth needed her mom.
When the doctor returned at 6 pm and again at 9 pm, still Elizabeth’s heart was beating strongly. The cytotec was working for dilation but it hadn’t slowed her down one bit. Now the bioethical quandary set in. I have a Master’s degree in Theology and have done a fair amount of study in bioethics, as I said previously, I could wax poetic for hours on these topics. Decisions are made and arrived at differently though when it’s your own child. What if Elizabeth was born alive, what did we want to do?
Final Decisions
She would need to be rushed off for open heart surgery immediately. No time for holding, no time for baptism. Then there was her palette that would need fixing. There was no guarantee that open heart surgery would be successful. In fact, the odds were in the single percent’s. Especially when all of the other problems along her midline were taken into account. We made the decision that, if she were to be born alive, there would be no surgery. We only wanted whatever time we could have with her in our arms.
Peace in Grief
Each season of our lives we measure differently. Sometimes it’s years, sometimes months or weeks or days. The worst times though it seems that we measure in minutes and seconds. Elizabeth was born shortly before 10:30 pm, alive, still in her embryonic sac. She was beautiful. Her breaths were shallow and her heart beat was waning. She cuddled up in her mother’s arms, she wrapped her tiny little fingers around my finger when she heard my voice. Time seemed to freeze and accelerate all at once.
My very best friend, who happens to be a Catholic priest, was right outside the door. He came in and baptized her, our doctor standing in as godmother. Just as he made the sign of the cross on her forehead, saying, “Elizabeth Marie, I baptize you in the name of the Father, and the Son, and the Holy Spirit,” she took her last breath. She never fussed, never cried, her eyes never opened, but I know internally they were on Jesus. All she had known in this Earthly life was love and she quickly transitioned to the fount of all love.
The End and A New Beginning
To honor that she had been born alive, the nurses played the Brahm’s lullaby across the hospital PA system. The nurses came in and bathed Elizabeth and prepared her for burial with all the dignity that she was owed. I internally collapsed into a blubbering disaster, while externally putting on a strong face, for my spouse, for Ruth, for my family.
I’ve been surrounded by music my entire life, and have myself been a practicing musician for well over thirty years. Lyrics have great meaning to me, I associate songs and song titles with milestones in my journey. This was no different. I had just met my daughter and now I quickly had to prepare myself to say goodbye.
A song I hadn’t heard for years came to mind, “The Trouble With Hello is Goodbye.” How do you even begin to condense a lifetime of things you want to share with your child into a handful of minutes? Elizabeth and I sat and listened to Jazz for awhile. I at least got to share my love of music with her.
Still With Us
November 30th has, for millennia, been celebrated as the feast of St. Andrew in the Catholic Church. Andrew was the first Apostle called by Christ and he ran without hesitation to tell others that he had found the Messiah. Elizabeth, like all of us, had come from God and was going to God. She knew love intimately and once she was marked with the sign of her Savior, she ran, without hesitation, into His loving arms. Robert Frost wrote that, “nature’s first green is gold, her hardest hue to hold, her early leaf’s a flower, but only so an hour…,” Elizabeth’s life encapsulated the whole of Christianity within a span of fourteen minutes.
I went home the next day to a home decorated with the anticipated joy of the coming Messiah, a baby to be born of a Virgin. It was almost too much of an irony to deal with. I had just given my baby back to God and He was sending a baby into the world to be my Savior. All I wanted was to hold my baby, not God’s baby. Alas, life continued on, like it always does.
We Will Always Remember
The years have continued on since that initial, terrible, November 30th, and life has changed in too many ways to fathom. We always celebrate Lizzie’s birthday on the 30th. Ruth loves parties and loves to plan them even more. She picks what kind of cake she thinks her sister would like, plans a meal and hand makes special cards and pictures for her sister. I hope she always maintains this close bond with her sister.
This particular November 30th hit me harder than I thought it would. Elizabeth would be 5 this year, that pivotal year in a child’s life when all of a sudden they’re not a baby or a toddler anymore, but a big kid. It’s hard to imagine my sweet baby Lizzie getting ready to go to kindergarten. I wonder what she would be like. I miss her terribly, always, every day, forever. Yet still we celebrate. Sure there’s the occasional tear, but November 30th is now a time for partying. Celebrating the most perfect of Christian lives, one that was so pure, it warranted sainthood and Heaven instantaneously.
Our Own Little Saint
Ruth and I partied yesterday and talked to Lizzie. Not as a person to be remembered but as a person who is still very much alive in our midst, because she is! We’ll go to the cemetery today and decorate her grave for Christmas, because Elizabeth will forever and always be associated with Christmas lights. While we say a prayer for the dead at the cemetery we’ll also be sure to ask St. Elizabeth for her intercession for us and for the dead whom her Earthly body shares a resting place with.
For all of the parents who have children who were better suited for Heaven, may St. Elizabeth and all the little Saints of God intercede for us and for the whole world.
