Why does Apert Syndrome exist? This was my initial thought (posed as a rhetorical question) once the effects of Sarah’s pain medication began to wear off. She was suffering excruciatingly, and I could not make her feel better. I could not stop her agony, though I wanted to replace my own comfort with her strife so that I could carry her burden for her. But I couldn’t.
So I began to lament in my thoughts about this genetic anomaly. Anger engulfed me as I attempted to alleviate Sarah’s suffering. Why do these innocent children have to suffer so horribly? Of course, the age-old debate about why suffering exists at all came to mind, and I know the answer – theologically, at least. I have come to terms with its truth, but there are moments when the grief swallows all of the rationale and reason in my mind, and I am overcome with frustration and disappointment that, quite simply, this is our life. And it is the life of so many other families, as well.
I realize that Apert Syndrome is a highly unique and individualized anomaly; no two people experience it exactly the same way. I know that everyone who has Apert Syndrome has internalized different responses from the people and culture surrounding them. I also realize that many medical advancements have aided the condition so that there are more options available to people who have Apert now than there were thirty, forty or fifty years ago. All of this considered, I still wonder sometimes – like on Tuesday afternoon – why does Apert Syndrome exist? Why is it that some people must undergo surgeries to have access to the use of their fingers when most people are born with their fingers already separated? Why is any of this necessary or fair?
All of the children and families I have come to follow on Facebook came to mind as I pondered these questions with increasing fury. So many of them – at that very moment – were undergoing surgeries or consultations, just trying to survive and keep their heads above the water. Here we were – no different – and yet we had reentered the spectrum of grief and crisis after a brief hiatus. And we did so knowingly, intentionally. We knew that this surgery was necessary and vital for Sarah’s development, both short- and long-term, but we still embraced the life of semi-normalcy for a time.
It was a period of about seven months in which we did not have to live on the edge of our seats, wondering if we might cause pain to Sarah by moving her or touching her hands or feet. We did not have many doctor’s appointments during this time, and so we were more able to simply enjoy the glimpse of what our life might have looked like if we did not have this syndrome in our lives. As a family, we enjoyed evenings together, swinging on our back porch swing and watching the girls giggle gleefully in unison. This simple act offered me profound joy as a mother – to see my two beautiful girls enjoying life and connecting with each other in such a meaningful way was a true gift.
There were no worries. There were no “what ifs” or lingering, unopened, unanswered, and unresolved concerns on the immediate horizon. We were free – for a time.
For a time, Sarah’s body was not in a state of fragility, nor was my heart. For a time.
And yet we knew this day would come, as it inevitably does for many families who have children with special needs of all sorts. All caregivers ride this emotional roller coaster – a momentary, transitory high followed by a sinking darkness. It seems that is simply the way of life for us, and yet there is a solidarity in our shared suffering. During the moments I was attempting to console and soothe Sarah in her pain, my mind’s eye saw the myriad other families whom I have encountered – and the countless others who are (so far) still anonymous to me – and my heart somehow joined with theirs in an unspoken connection that bridged the gap of distance and time. Somehow I knew there were other parents who thought of me – perhaps specifically or maybe just in a general sense – during times like these, times in which the parents participate in the suffering of their children and ultimately, in the Passion of Christ.
To be angry at Sarah’s condition is not a typical perspective I carry within me. Long ago I came to terms with the fact that life doesn’t make sense sometimes, and there are grave mysteries in this life that I will never fully comprehend until I reach the next one. However, the fleeting thought, why does Apert Syndrome exist, seemed clear at the time and even fair to ask.
I think the question wasn’t so much a rudimentary one as it was a plea to understand the plight of humanity and all of the difficulties it seems to entail every day – things beyond our control, circumstances that are not rooted in fairness or equality. These thoughts occasionally incite the latent grief that lives within my heart and soul; it does not cease but only subsides and then resurfaces like a tidal wave crashing onto the shore unexpectedly.
Ben and I became aware of a creeping division between us as we entered the crisis zone for the fourth time around. We were irritable and terse with one another, too drained from emotional exhaustion and physical depletion to process our own thoughts and emotions. At one point, I brought this up to Ben; Sarah was in a narcotic-induced sleep, and we had a few, uninterrupted moments to actually make eye contact and breathe.
Ben admitted that he wanted to run away, because it tore his heart in two to watch Sarah suffer this way. His grief as a father was often avoidable, as his days are mainly spent for financial provision of the family. But mine was always palpable and tangible, always evident in the ways I had to manage our days and the daily lives of our children; being Sarah’s primary caregiver serves as a stark confrontation of the reality of grief through the manifestation of her struggles.
We briefly shared our mutual sorrow, and this solidified our resolve and emboldened our marriage. But the waves of grief are often unpredictable and unwelcome, and so they wax and wane like the changing tides. In the midst of this complexity, Ben and I remain committed to our love for one another and our family, despite our hurting and confused hearts.
As Sarah’s spirits quickly improved, she wanted to take a little stroll outside of the sterile confines of her hospital bed; I knew this, because she said, “Hi Mama! Wee?” Wee is her expression for swinging or riding, so we borrowed a red wagon from the hospital and took her for a brief trip around the Burn Unit’s wing. She squealed with unbridled glee, as if this were her first experience riding in a wagon, and for a moment, she forgot her pain.
I noticed this even more as she connected with another little girl who was recovering from the Lefort III procedure and was convalescing on the same floor where Sarah’s room was. She was about six years old and had the halo-distraction device on her face; I noticed she, too, had Apert Syndrome. There was a weariness in her eyes, as the nurse confided to me that she had been in the hospital for four weeks already due to complications with breathing through the device.
I parked Sarah in the wagon and said, “Hi! This is Sarah, and she has Apert Syndrome, too. See, she just had surgery on her hands and feet to separate her fingers and toes like you had when you were a little girl. Someday she will have the halo-device, too, just like you do now.” She nodded her head eagerly and with understanding, and I noticed a spark and twinkle in her eyes. The nurse leaned over to her and said, “See, Sarah is just like you.” With this realization, the little girl smiled, and Sarah returned the gesture, along with a “Hi!”
Shortly thereafter, Sarah was discharged from the hospital, and we were able to take her home to her typical environment. I reflected upon that encounter with the little girl who also had Apert Syndrome, and I realized that Apert Syndrome is a gift, and there is a gift, too, in their shared understandings, journeys and even sufferings. While the God of my understanding does not actively will for us to suffer and does not desire for small children (or anyone, for that matter) to be afflicted with lifelong medical issues or deadly diseases, He walks with us in all of the very raw and authentic aspects of our personal odysseys. He permits hardships and chromosomal anomalies, flukes of genetics and science to occur, so that good may prevail from it.
And I saw this in the knowing glances exchanged by Sarah and the other little girl with Apert Syndrome – a gleam, a spectrum of hope, a renewed sense of purpose and the will to go on. It is because they are not alone, and truly, neither are we.
Parents, children, siblings, and adults who are affected by varying diseases, disorders, and differences share a common heart, a heart that is united in courage and a love that expands infinitely by the depth of character we see in those who recognize beauty in its rarest forms. We all see with the heart instead of the eye, and though this can be a lonely worldview, it is an enriching one. That is only an iota of what good can come from Apert Syndrome or any others comparable to Apert.
These moments of enlightenment reveal Sarah’s resilience and my tenacity; I smile through the new cycle of sleep-deprivation and self-denial, because I know there are some of you reading this who speak the language of the heart along with me, where no words are necessary. And in that place our hearts truly collide in a gesture of warmth and resolve, for we truly are a family.
Copyright 2014 Jeannie Ewing