I must admit I am a bit of a stalker... You see there is this little one who stole my heart 6 years ago. She moved away nearly 5 years ago... Every day I pray for her and every month I search online for info about her... I worry and I cry and I pray for her...This is her story...My God Has Answered Me –
What do I know about love anyway? I have never been in love as the world defines love, the way a man loves a woman or the way a mother loves her child. The love I know is the kind of love that magnificently rapes the heart. Take, for example, the words often said from a mother to a child: I loved you before you were born; it’s an expression of her undying love and devotion to the heart that walks around outside her body.
I was never oblivious of the stir I caused. I heard the taunts throughout my life, saw their eyes roll as I proclaimed my love for something not my own. None of the children where really mine, none of them will ever be mine as far as the future can see, but for an instant, as long as it takes to breath in their sweet scent, they were…
I have first devoted my life to the Lord’s service, and second to the service of Early Childhood Special Education. There is nothing quite like falling in love with these incredible and mysterious children – the peacemakers. They, who radiate such love and devotion towards life despite their pain. I have been privileged to care for many miracle babies and one in particular who is living out her last days with laughter in her heart – a toddler who has a rare neurological disorder, which has no treatment or cure.
It began not too long ago as years are concerned, but to me it feels like it has been a lifetime. I was a sophomore in high school, and no stranger to heartbreak. I hated change and this venture was no exception. I had, however, finally gotten used to my new choir director after a rough first year. Mrs. Amy Hoagland told the class she was pregnant in late November of my freshman year, and Elianna was her name.
Elianna, her name means ‘my God has answered me,’ and this little girl herself is an answered prayer. To discuss Elianna, unfortunately, there has to be some medical science involved. Her diagnosis of a Hereditary Demyelinating Disorder is a tragic one. Survival is limited. Demyelinating disorders are typically displayed in early childhood (or late adulthood). Children have difficulty controlling their movements, may not develop new skills, or may even forget how to perform tasks that were once simple and thoughtless processes. Premature babies are at the greatest risk of developing a HDMD because myelin is not produced until the third trimester of pregnancy. I didn’t know what a HDMD was, but I learned fast. The most memorable thing I have ever heard about HDMDs was by a myelin information website I discovered years ago it stated something like, “The clinical course of HDMDs, which tend to manifest in infancy or early childhood, is tragic. Previously normal children are deprived, in rapid progression, of sight, hearing, speech, and ambulation. Equally tragic is their prognosis; death within a few years.”
I could never picture Elianna hooked up to the NICU machines, the incessant noise and clamor of life support. I never heard the deafening sounds of the MRIs performed on her tiny brain. What I did experience was her beauty, her life, and her love. Elianna is the little girl who would never walk, the little girl who would never make it to the age of two, the little girl who would not eat, the little girl who would not sleep, the little girl so silent – always smiling. Her big brown eyes shimmering like diamonds and dark wavy hair, black as night radiating in a soft crown around her head. Because of Ellie I never take a baby’s smile for granted anymore.
The first time I met her, in person that is, I felt such a strong bond to her even before she was born, I remember telling her mother, as I buckled her into her car seat after play practice, that I was afraid.
“Afraid of what, Courtney?” Amy asked.
“Afraid I am falling in love,” I responded, remembering my old foster children. The more you love someone the harder it is to let them go, and so it would end up being with Ellie.
My cast mates in the school musicals never understood why I needed Ellie. They would always ask to hold her and on my less-selfish days I allowed my arms to feel the loneliness of being empty if only for a few minutes during set changes. The whole school knew that although Mrs. Hoagland had carried and given birth to Elianna, that tiny little ray of daylight was mine. Amy would often tease, “Courtney, give me back my baby!”
I smiled and kissed the top of Ellie’s head as she snoozed comfortably in the baby carrier strapped to my chest, “I’m not even in this scene!” I play-argued back.
Eventually, Amy began having me baby-sit Ellie, and her three-year-old brother, Skylar, sometimes in the evenings and on weekends. There were times I had to force feed her nutritional supplements in attempt to make her grow, and accompany her to the doctors, who often scratched their heads at her test results. Nights I sat up at the top of the stairs, my tear-filled eyes glued to her crib praying her to keep breathing through the night… “Just one more breath Lord, just one more breath”
Amy also had her father hire me, at the church he pastored, several times for childcare during revivals. One night there was twenty babies between the ages of three-weeks and eighteen months all in one room! The other workers were stressed, but for me it was heaven on earth. Amy’s father’s church had such a glorious jumble of people in it. There were families of mixed race and beautiful children the color of goldenrod and copper. Their eyes were the most expressive I have ever seen. I loved serving in her church, and even more so being able to enjoy Ellie.
The end of my sophomore year came, and along with it, the dismissal of Mrs. Hoagland from her position of choir director. The grand and glorious No Child Left Behind act struck again and took with it an amazing teacher and mentor, because she held a temporary instruction permit instead of a full-fledged teaching certificate. Our last choir concert of that year was amazing. We sang a contemporary black gospel song by Kirk Franklin, with dancers and a live band. After the concert I jumped off the edge of the stage and met up with Ellie’s dad, Jeff. “Can I steal her?” I asked.
“Yeah, go ahead,” he replied.
Ellie grinned as I lifted her into my arms and walked over to an inconspicuous corner, my heart heavy as I reminisced on the past eleven months. I was in the mood to cuddle but El wanted to play, tugging my hair and wiggling as usual. I held her closer and Ellie stopped squirming. She looked into my eyes, her slobbery hands gracing my tear-streaked face – she knew.
“Time to load up,” Jeff exclaimed obliviously from across the now empty auditorium. I slowly brought Ells over and began strapping her in her car seat for the last time. Ellie kicked her feet happily and I lost it completely. Sobbing so hard that my body shook and hiccupped as it never had before, my hands trembled and tears gushed, giving Ellie a very salty bath. Jeff looked nervous, “Its ok,” he stuttered shocked at my reaction, “You’ll see her again”. He placed his arm around my shoulder, but his words were not in the slightest bit comforting. I was inconsolable. “Amy…Amy come here,” he called to his wife.
“What,” Amy replied.
“Just come here.”
Approaching from the stage, her face fell when she saw me. Amy ran over and grabbed me in to her arms, holding me and letting me mourn. Mrs. Hoagland was one of those wonderful people that know just what to do to comfort a hurting soul; she was one of those “angels on earth” if you will. “You are so special to our family,” she began, “I love you so much.” We stood that way for a long time, me in breakdown mode half-kneeling on the floor, a public school teacher embracing a student, Jeff dumb-founded, and Elianna giggling, oblivious to the pain she was causing. That was the last time I held Elianna Katherine, although I did see her one last time.
It is somewhat evil, in my opinion, to hold a Farewell Fellowship Dinner. I received the invitation spring 2006; it read that the Hoagland’s were moving to Nevada, Amy had gotten a job as a youth minister and Jeff was able to transfer his job to Reno. I debated whether I would attend, but I had decided earlier that year to live with no regrets, no matter what. So I got in my car and drove down to the church.
You know that song by rascal flats? What hurts the most is being so close, and having so much to say, watching you walk away and never knowing what could have been… she was a child born too fragile for this world, a baby whose apple-breath warmed my neck as I held her as close as possible to me, holding her down on this earth afraid she would float away as quickly as she came, knowing in an instant she would be gone. Her smile and shortly after came her laughter, like a garden in late summer, continually active with crawly things and flowers swaying in the warm august breezes. A porch-swing creaking under the weight of old lover’s, hand-in-hand, enjoying the sunset over mountain peaks.
The final goodbye lays stagnant in my mind, haunting me. I watched Elianna from a distance, having let her go physically, but still holding on to that last bit of sweetness, of innocence… watching her struggle away happily, with her pink leg braces. The paradox of innocence and wisdom combined in a package so small. Despite my earnest prayers, knowing in the tunnels of my heart that the next time I saw her would be in a tiny coffin. She is dying, leaving this world behind in a slow sequence of body system shut downs, first her ability to crawl, to speak, to eat, and then to breathe.
I often wonder what kind of game this all is. What does it mean? How is it part of the plan? I know why I lost Ellie, she had become my god – I had created my own golden calf if you will. I loved her too much. Now that my life has taken this dramatic turn and I have wound up here in this place of such physical beauty, why do the babies in my arms no longer feel like my own? And the ones I once held seem to run so far. Why, when you love something does it hurt so dang badly that you would give anything for the courage to grab a knife and cut your heart out, so the outside would match the inside? Society calls us to follow the path, to trek the same one all have journeyed before. Go to school, get a job, get married, have babies, retire, baby-sit grandkids, lose your mind and die. Why is everything in life based on love and loss? How do so many people go through the days and not feel like this, so full yet not complete. They tell me that when you have Jesus in your heart He completes you… I don’t feel complete. There is power in words, in actions, and in passiveness… not doing anything can be just as bad, or good, as doing. How do you sit in a room with people who hurt you and love you at the same time? How come what they teach psychologists is nothing regarding this stuff, the books put it down that we are primitive, behavioral, Freudians. Isn’t there more? Don’t we live? Breathe? The silence kills me. I am bound and tortured. Aimlessly wondering in the desert of my own sin, but despite all this, there comes a time in life where all things seem to come together, the parts entwine and the day ends in a satisfaction that all is well. There comes a time that we become ready to be done, the shagginess of this imperfect world begins to overcast the sun. There comes a time when we are alone to enjoy our own company, or mourn the loss of companionship. As the great prophet wrote so long ago:
There is a time for everything, and a season for every activity under heaven: a time to be born and a time to die, a time to plant and a time to harvest, a time to kill and a time to heal, a time to tear down and a time to build, a time to weep and a time to laugh, a time to mourn and a time to dance, a time to scatter stones and a time to gather them, a time to embrace and a time to refrain, a time to search and a time to give up, a time to keep and a time to throw away, a time to tear and a time to mend, a time to be silent and a time to speak, a time to love and a time to hate, a time for war and a time for peace… He has made everything beautiful in its time. He has also set eternity in the hearts of man, yet they cannot fathom what the God has done from beginning to end. (Ecclesiastes 3:1-8,11)
Oh how I long to be like David, a man who knew when to stop mourning and dance.
I wrote this a long time ago over 4 years ago, in my time of mourning for this sweet baby...Today... She is 6 and in first grade... I miss her
