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THE STORY OF US
My name is Sarah, and I have long been a single mother to two incredible young women. Motherhood has always been a privilege, and my daughters have blessed me with boundless joy. My youngest daughter, Chaya Shira (now 24 years old), was born 9 weeks prematurely and has not had an easy day since. When she was just 5 days old, a medical professional’s careless mistake caused her a severe brain injury. As a result, Shira has never been able to hear, speak, or walk.
Outrageously, we were never able to recover any monetary damages for this tragedy, so her daily medical care has relied largely on government assistance as well as my own income to make sure that she receives the care she needs.
Being Shira’s mother has been an intense learning experience of endless love and gargantuan responsibility.
I am her sole advocate and her loudest cheerleader. I do everything in my power to make sure she is getting proper care while navigating the endless maze of doctors, nursing homes, and medical treatments.
Her health has always been fraught with challenges, as she depends on a g-tube, a tracheostomy, round-the-clock skilled nursing care, and frequent hospitalizations to survive. Her immune system has always been heavily compromised, and her lungs and colon are always under siege.
I have devoted many hours to Shira’s company and care despite working full-time. Normally, I visit her every single weekend at her skilled nursing facility. But at this moment, she needs more of me than usual. There is no one but me to make sure she is getting the care that she needs, and as I write this, I am sitting by her hospital bedside.
SHIRA’S LATEST CHALLENGE
(Warning: Medically Graphic)
As a result of the injury that she suffered at birth, Shira’s brain stopped sending the right messages to her body that would have otherwise allowed her to enjoy a normal, healthy, and happy life. Instead, her brain has always misfired, sending wrong messages that never fail to cause her muscles to contract into excruciating spasms even the strongest medications cannot curtail. By the time Shira was 12, the spasticity had gotten so bad that doctors surgically inserted a pump with a catheter that was woven into her spine to pump out baclofen, an anti-spastic, muscle-relaxing medication.
As is typical of most immobile patients, Shira’s skin suffers from ongoing breakdown, bruising, and bed sores. This time, the combination of her fragile skin and complex comorbid conditions forced the medication pump to tear completely out from inside her while still hanging on by the spinal catheter in her spine through the gaping wound left in her side. For weeks now, teams of doctors have been scratching their heads over how to solve a problem they have admitted to never encountering before.
While the pump does need to come out via delicate neurosurgery that requires intrusion into her spine, unfortunately, it cannot be replaced until her infected tissues and wound heal. However, without it, Shira runs the risk of life-threatening withdrawals, seizures, cardiac complications, and pulmonary compromise. Most heartbreaking of all, her harrowing muscle spasms and full-body spasticity will return, and, without state-of-the-art hospital intervention, she will suffer from extreme pain.
While Shira’s ICU doctors at our current county-funded hospital have been working tirelessly to come up with a care plan, they have also been open about not being able to provide Shira with the level of neurological management that she will require to mitigate the pain once the pump is removed. Yet their every attempt to have her transferred to a hospital equipped and capable to handle her case has been met with the maddening “bureaucrazy” and red tape typical of our nation’s tragic healthcare system. All of the hospitals that her doctors have contacted so far have denied her care, including the one that is just 3 blocks away even though I paid $1,400 to bring her here specifically because of the proximity. I could have never imagined that a hospital capable of saving my daughter’s life would turn us away because of money. Yet despite my own attempts to appeal to their hearts and conscience, they have adamantly refused.
As I write this, I have no idea what is going to happen nor when, and the doctors don’t know either. While Shira remains in limbo in the county ICU for weeks now, the hockey-puck-sized pump still hanging on to her spine by its tubular thread, and her wound still wide open, I remain in limbo right next to her, as I am the only one who knows her well enough to spot signs of pain, spasticity, and fear. Because Shira needs my constant presence and involvement, I have been unable to go to work all of this time, and, unfortunately, my employer has not allowed me to work remotely despite my desperate circumstances and the dire financial consequences for my family. Because we have yet to even begin the process of Shira’s lengthy recovery, I am asking for your help to carry me through. Not only are the monthly bills still stubbornly piling up, but the expenses of having a child in the hospital add up, too. This may last for months during which time I will not be earning a living.
SHIRA’S MAGIC
How can I ever fully describe the indescribable magic an unassuming alchemist never fails to weave despite the harshest of conditions? How can I ever fully describe my daughter, the magician?
In Hebrew, her full name is Chaya Shira (pron. Haya Sheera) and translates as Life Song. There truly are no words that would do the song she has brought to my life justice. She teaches me, humbles me, and expands my gratitude list to infinity. Her slapstick sense of humor and infectious bouts of laughter over the silliest things breathes life into my soul. Without a word or the ability for sign language, she has pushed me to be strong and resilient; she has directed me toward finding truth and has instructed me on the wisdom of unconditional acceptance. She has shown me by example how to maintain trusting stillness amidst mayhem and how to celebrate the most mundane. More than anything, my Shira has gifted me the magic of genuine, pure, and untethered love not only from the way she catches my eye from across a crowded room but from the way she looks straight into my heart and strengthens all the broken parts. From day one, it has been an honor to be her mother and to bear witness to her holy soul. She is, to me, in one word: magic, and the Song she sings is, indeed, Life itself.
Thank you wholeheartedly for reading our story and for any help you can provide while we hunker down so we can rise again, even if it’s just sharing the link.
Sending you all so much of the best medicine of all: Love!
Aho!
