By Sheryl Steines
That Moment in Time – When it felt time to have my first child, I knew it, and approached it as inevitable.
But my next steps in life didn’t follow a straight path, it jerked sideways and turned out nothing like I imagined it would.
I define my life as the before and the after; before the birth of my twins and the single moment when I thought I had reached the end of a long struggle with infertility, hoping that the girls’ birth would minimize the sadness of the time it took to get pregnant with them.
That single moment when I realized it was far from over, and I felt myself being wrenched down an unfamiliar abyss.
While I was elated to give birth to a perfectly healthy little girl named Kayla, I also gave birth to her twin, a perfectly imperfect daughter named Stephanie, born with an undiagnosed neuromuscular disorder that in the end, would take her from us within the first year of her life.
What should have been the happiest of days could best be described as bittersweet.
For months, I was lost in that single moment, and how everything changed.
Living with a Terminally Ill Child – Emotions and senses are heightened when living with a terminally ill child.
Her muscles were weak, which affected her breathing, eating, digestion, and bowels.
She couldn’t sit or roll over.
She would never be able to eat, stand or sit without assistance.
Nothing in her life was normal, which meant that our lives became un-normal too.
Milestones, accomplishments, and even simple things like laughter were infrequent or just never happened.
Days and nights were consumed keeping Stephanie’s tiny, broken body stable and at peace.
For eleven months we had been successful and looking back now, the days flash by me in a blur, and yet, I can still relive them as if they were yesterday.
My daughter’s care routine involved round-the-clock nurses, feeding tubes, oxygen tanks, and medical equipment that beeped.
It was difficult to obtain medicines; and oxygen tanks ran empty on weekends.
Unfortunately, many times we were forced to wait for care because services and goods were not available until after a holiday or weekend.
These stressors tied me to a single moment in time, it is like I went through the motions.
The world was moving, but I felt stuck.
Unable to let it go, I couldn’t help but wish things had been different, normal, familiar.
I was angry, I was hurt and I was jealous.
In fact, the angst, anger, and sadness was compounded as one child thrived normally and hit her milestones with ease.
It became so obvious that Stephanie lagged far behind.
She would never roll over, sit up, drink from a sippy cup, crawl or walk.
I was forced to come to very difficult terms and make some very hard decisions.
Joy in the Darkness – From the start, we knew there was no cure for Stephanie’s disease because there was no real diagnosis.
The only truth we understood–Stephanie would die.
So I worked hard to find joy in a hopeless situation.
There might not be joy in the traditional sense of caring for a terminal patient, but what you come to understand is that there are good, kind people who give you a glimmer of help and hope.
Volunteers filled my life for 11 months.
Whether they held my child in the ICU when I couldn’t be there to do it myself or came to my house to run errands so I could have just a few moments of down time.
There are no words for the care and comfort from strangers who ask for nothing in return.
Nurses taught me how to be a mommy to a terminally ill child, encouraging me to hold my child without fear.
They offered suggestions on how to bond, by taping myself reading a book and leaving the tape at the hospital so my child would know my voice.
Stephanie did know my voice and it made her happy when she heard it.
I will never forget a very grim and private conversation with the hospice nurse, who allowed me to speak freely, without shame as I dealt with the most difficult of situations.
At the worst of times, when I could no longer travel with Stephanie, because she outgrew the only car seat that could protect her in her condition, her pediatrician came to the house to examine her.
I liked him before he did this and I would forever appreciate his kindness, long after she died.
It all Stopped the Day She Died – Life moved slowly, sluggish and tight; what I imagine walking through quicksand would feel like.
That is until a new moment jerked me from what finally felt familiar, and a new moment chased me down.
I will never forget my new single moment when I watched my baby die.
The end of caring for a terminally ill child came to me in two stages.
The first was relief that I no longer had to live in the midst of the stress nor the need to care so intensely.
Though the relief was filled with great sadness, I had little time to dwell on it.
There was still so much we had to do for the funeral, and for my surviving twin who still needed care and love.
At least for the time being, I had no medicine, beeping equipment, nurses, or that stress that comes with survival.
The second stage was the overwhelming sense of loss that finally hit me.
All of the stress and the feelings that had been tightly kept inside, bubbled to the surface.
Four months after my daughter died, I came face to face with the raw grief.
I’m part of a club that I would prefer not to be a member of.
I don’t look for a greater meaning or purpose in my daughter’s disease and death.
I simply survived it and came through to the other side with a realization that so many in this world have great struggles.
Sadness will never leave me and though I will always have a missing piece from my heart, I came out stronger, more compassionate and empathetic to others and the struggles they try to overcome.
Stephanie’s short life and eventual death inspires me to continue living, creating, growing and accomplishing; to leave behind a legacy.
I have a strong desire for my children to be proud of me, and for me, proud of myself.
I live, not because my daughter died, but because I am here.
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Cover Photo Credit: Paulius Malinovskis/ Flickr (CC By 2.0)