It’s beginning to look a lot like Christmas- at least from the 16th floor of NYU Langone Medical Center.
I am grateful for the view of the Manhattan skyline, the red and green lights of traffic flashing up and down 1st Ave towards 34th and for the broad sky and shimmering lights reflected off Kips Bay. Even the construction site below adds an artistic dimension to this beautiful view.
People pay big money for such a view. It is a small consolation for the expense of rising healthcare insurance premiums. But there’s an even greater cost associated with this beauty, the cost of emergent and/or chronic illness that paves the way for this expansive view.
The view from the window of the hospital is one of those little perks and refuges from the strain and stress of a hospital stay. It’s my short term goal in a long term stay. From the minute my daughter Johanna is admitted, I am vying for a bed by the window.
It’s not so much the extra room the window shelf provides for luggage and little comforts from home (like shampoo and a laptop) or even the ability to regulate the room temperature. For me, seeing the sky, the water and the beautiful lights in New York City help me to remember that meaningful life goes on even when I have to press the pause button to care for my daughter’s critical needs.
These visits are exhausting for sure. On the heels of weeks of struggles with headaches and other neurological ups and downs, this intervention was looming on the horizon for some time. But still I kept moving forward, hoping Jo would weather another storm in her brain without needing surgical interventions.
The last two weeks, I’ve had strange flash-backs to my daughter’s first year of life. The first one occurred as they rolled a stretcher beneath the spect scan machine to trace the flow of a nuclear dye injection in the shunt system in her brain.
As I watched this little young woman, being rolled into the machine, which hovered no more than three inches from her face, in my mind, I heard the cry of a six month old baby. I remembered how my husband and I held our baby girl still for forty-five minutes while the radioactive dye pulsed through her brain and into the tubing that emptied into her stomach.
Now, the shunt empties into a vessel outside her heart and the radioactive dye lights up its three valves and on it’s way, her thyroid gland appears like a glowing butterfly. Nineteen years later, Johanna lies still without a struggle and even offers me a smile.
On the way into CTSCAN I was excited to discover NYU had gotten a new scanner. When I remarked to the technician about the new equipment, his eyes lit up with excitement as he shared with me the details of how it works. I was truly interested in the new technology that provides clearer scans with less radiation. I watched with amazement as the scanner lit up in soft colors of pink, green and blue as it spun around Jo’s head.
My interest in brain scans won me the coveted place in the viewing room where I could see the tell-tale signs of new hemorrhages in Johanna’s brain lighting up the digital images on the screen. For most people hearing that their daughter has bleeding in the brain would end life as they know it and set off panic mode. For me, it’s a familiar diagnosis since the first time we scanned her brain at three months of age.
Moving from pediatric care to adult care is a very difficult transition. For a parent of a child who is medically fragile with special needs, it’s like advocacy is starting over in a new world moving from children in pain to adults in pain.
No one likes to see children in pain. But I can tell you from almost 20 years experience, children have more hope. They are more resilient than adults and they trust because they have to trust others for their very life. Most adults couldn’t handle what my daughter and many children have handled in their short lives.
Though there were no windows in the emergency room, there were many opportunities to reflect on the struggles and the goodness in people and learn from the insights. No longer ushered into the warmth and security of a pediatric emergency room, Johanna and I joined the parade of stretchers in the hallway, with patients, doctors, nurses and NYPD officers guarding law offenders who needed care. It was an organized and orderly chaos and we were treated with kindness and respect.
One volatile person scared Johanna as he was screaming profanities at the doctors and nurses and security guards. Johanna jumped and shook as he yelled, as I gently stroked her face and hands, assuring her that we were safe. It was a reminder to me that while she’s the age of an adult, she’s still a child who needs protective guidance and care.
In the quiet times, I observed the love of caregivers for their partners and for their parents; an Orthodox Jewish woman cared for her elderly father with profound respect as a gay couple consoled each other with their quiet words and caring presence.
Finally in a room with three other patients, we were surrounded by the sadness of an elderly woman who was just finding out she would be transferred to a nursing home, and a woman in pain with news of suspicious growths on three major organs.
I had some time to share with the woman with the suspicious growths. Rather than ministering to her with a message of hope, she encouraged me with her steadfast faith as she proclaimed her belief in God’s infinite love and plan for our lives. I walked away humbled and blessed and took my seat by the window.
In the solace of pre-dawn, I sat in my chair and prayed until sunrise. Far from the visage of a North fork sky, yet still this view captivated me and gave me hope. It gave me hope for the elderly woman who longed for independence, for the strong woman facing a frightening diagnosis, and for my young adult daughter equipped with child like faith. Each of these tells a story only understood in the times of quiet reflection.
I believe God gives each of us windows of insight from where we can view our world with a renewed perspective and hope. It may be a physical location like the hospital room window or my rocking chair on the porch which faces the sun rising on the North Fork. But these windows and insights also come through meaningful interactions with those around us.
With or without the venues, paying attention to the unsaid needs of another, acting with compassion or even daring ourselves to feel another’s pain enough to care and pray, can open windows of gratitude in our minds and hearts, leading us to closer towards others and to God.
Eileen Benthal is a writer, speaker and wellness coach with a B.A. in Theology from Franciscan University. She is the author of Breathing Underwater: A Caregiver’s Journey of Hope.
Eileen and her husband Steve live in Jamesport and have four young adult children. Their youngest, Johanna, is a teenager with special needs.
Eileen can be reached at CareforaCaregiver.com.
The survival of local journalism depends on your support.
We are a small family-owned operation. You rely on us to stay informed, and we depend on you to make our work possible. Just a few dollars can help us continue to bring this important service to our community.
Support RiverheadLOCAL today.