To Bury An Angel – The Loss of A Daughter

The Decision

I wasn’t sure what to expect when the Doctor referred us to a specialist just a couple of months before our little girl was born. The anticipation of the moment was a rollercoaster. But, it’s just a precaution. Maybe something’s wrong. It will be ok—just a tiny example of the things one creates in their mind during such things.

We arrived at the office early and waited patiently for our name. Finally, our name was called, and we were escorted to the Doctor’s office. We had already gone through advanced ultrasounds, amniocentesis, and a myriad of other blood draws and peripheral tests. We were only there to get the final diagnosis and prognosis from this highly specialized obstetrician.

The news was not good. It was devastating. There had been a “complication” during development, and the brain had failed to form correctly. As a result, it was hard to concentrate as large words like corpus callosum and holoprosencephaly began to spin around the room. The Doctor slid a business card across the desk, doing a part of his job I am sure he did not particularly care for.

“it’s a clinic in Kansas,” he said. “They Specialize in late-term abortions. My opinion is that this is your best option.” But, he continued, “If born, she will probably have to be institutionalized.” “I know it’s hard, but I believe it is your best option.” with that, he got up from his desk and walked out.

We did not have much time to decide as the clock was ticking. We only had six weeks before full term. The decision was quick in coming, and it felt right. There would be no abortion, and she would never be institutionalized.

The Birth

It was sometime in the middle of the night when I awoke to a soaked bed. I heard a quiet voice in the darkroom say, “It’s time.” We gathered our bags and headed to the hospital. The labor and birth were pretty routine as there were no caesarian or any particular complications. However, many specialists had entered the delivery room just in case. Her new pediatrician, respiratory specialists, and the like filled the cramped delivery room, anticipating her arrival.

She, without great commotion, came into the world and was immediately rushed to a portable table with an infant examination platform on top—Alexandria Juliet, born August 16, 1997. Apart from a split-second delay in her first breath, it was relatively calm. There seemed to be no real issues, and once we were able to hold her, it was beautiful. She was beautiful with her tiny hands and soft blonde hair. Our prognoses if she survived birth was six months, but it didn’t seem possible.

life

We took her home determined to defy the odds, and that’s just what we did. I took CPR lessons, taught myself nursing basics, how to insert and test nasal feeding tubes. Signs and symptoms of compromised gastrointestinal lines. Frantically I studied medical books and learned what a corpus callosum was and how the brain worked so that when I engaged with her specialist, I could understand.

In the first year of her life, things were almost every day. She did have issues with mobility, and as she grew, the problems compounded. If she had difficulty holding her head up at six months, it became almost impossible at 12 months. But these minor things never set us back or disheartened our spirit. We bought a van with a lift, had a custom wheelchair, and enjoyed the time we had. We would go to movies, play outside and take trips. She lived as rich a childhood as any child could. Yes, as she grew, it became more and more complex, but that was ok.

She was alive and thriving, considering her prognosis. However, as the brain was mapping out, its neural network things weren’t firing correctly. The seizures were becoming more and more challenging to manage, but we still soldiered on and did the best we could to give her a wonderful life. Finally, we settled into a routine, and time carried on.

Death

It was a pretty standard Saturday on June 5, 2004, as I was getting ready for work. I had just risen for the day, and I was walking into the bathroom to shower. As I threw my night clothes to the floor, my wife came rushing into the bathroom.

Her silent tear-filled face said it all. I could see that she wanted desperately, with every ounce of her being, to say a word, but they would not come. I rushed into the bedroom where my daughter slept and looked down at her still breathless face.

Not again, I said to no one in particular and scooped her up in my arms. This had happened before. I knew what to do. I rushed into the living room and gently laid her to the floor on the old tan carpet, and immediately checked her airway and began Compressions.

The world melted away as the cadence of life and death marched in my head—compression, breath, compression, compression, and compression breath. On and on, the beat rolled as I desperately kept pumping.

Alli was prone to seizures, and she had stopped breathing on me before, but I always got her back. This time would be no different. On and on, I pushed through. I knew no fatigue or pain. I ignored the signs that it was too late.

Various fluids had already begun to build up in her lungs. An indication that she had been gone for a while, but I dared not stop. It splashed onto my face, coated my lips, but I could not, would not stop. I could hear commotion all around me, but my task was straightforward. I continued until I was pulled away.

At some point, paramedics, the fire department,, and the sheriff had arrived, and they proceeded to pull me out of the house. The torment and suffering were instant. As long as I was pumping, I could hope in life. Now all I knew was death.

I sat at the stairs at the bottom of our porch with my head in my hands. A sense of failure wrapped me like a blanket. I slept too hard or missed her call when the seizure started. Maybe I didn’t do what I was supposed to do. I had failed my little girl.

Due to the knowledge of her seizures and condition and given the family’s acquaintance with the coroner, he waived the autopsy. I was at least thankful for that. For seven years, I tried everything to give her the best life a child could have. She gave me so much.

When a child is as sick as Alli was, there is something pure in their spirit. Void of original sin, they genuinely are Angels among men. She never knew evil or suffering except what came with her condition. She was always kept comfortable and never knew the pain that comes when the demons of the world are set loose upon you.

The Burial

I don’t much remember the time following that day. Lots of condolences and pats on the back. Sleepless nights filled with waking nightmares and days of walking sleep. When finally the day came to bury my Angel, it was all I could do to breathe.

She was dressed in a beautiful white dress with her favorite stuffed polar bear tucked under her arm. My uncle was a local mortician at the time. He did an excellent job preparing her for her departure out of this world. She looked like she was peacefully sleeping as I stood over and peered down on her beautiful face for the last time.

I struggle now to remember the service on that hot summer day, other than the large crowd that had gathered to say their goodbyes. Acquaintances from work, the gentleman I worked for, chefs, church members, family, members of the community, and old friends. It was amazing to see how many would gather in that little country church that day to see an Angel off who was going home.

I couldn’t take my eyes away as the man from the funeral home came over and, with a smooth and purposeful motion, closed the casket. I never broke my gaze as the last frame of my little Angel forever escaped my view. As I grabbed my casket handle, I numbly and laboriously made my way out the Church doors and down the steps.

We gathered for the final graveside words with its cliches and painful tears. But, no matter how often you hear “a better place” or “no more pain,” it doesn’t stop the torment. As one by one, the kind people gathered there that day walked by and whispered their condolences, I stared at the fresh hole that my Angel’s casket hovered over.

As the site cleared, I found myself mostly alone with the gravediggers. The casket was set as the sun climbed high into the June sky. I took off my suit coat and draped it over one of the chairs that lined the grave. Then, in the sweltering heat of the summer sun, I walked over and placed my hand around the handle of the shovel resting in the newly piled dirt.

I still remember the smell of the freshly excavated earth as I, compelled by something both ancient and eternal, saw her to the end. I was left alone to the thoughts of my anguish and pain. In my way, I said my goodbyes as, shovel by shovel, I buried my Angel.

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