OPEN LETTER TO CHRISTY BEAM
Pain, as least as I see it, is like the wind. It can’t be seen or touched but it can be deeply felt. Sometimes it flows in like a soft breeze gently announcing its presence. Other times, it comes out of nowhere and like a tornado, spins violently leaving destruction in its wake. As if tucked away in a jar tightly sealed, it waits patiently until its appointed time.
We remain largely unaware that such a vast number of jars exist. Unaware there are levels of pain to be felt which we cannot fathom. We see only the jars that have been opened in our own lives. We all have jars; some more than others but I have yet to feel a pain so deep as that of a parent when their child is sick.
I watched Miracles from Heaven for the first time and I ache that this jar was opened in your life. I ache because it has been opened in my life too. Once the lid is removed and the pain escapes, we become aware of a level of hurt we once knew nothing of. One which we shall never forget.
The moment I heard of your story I knew it was something I needed to hear and watch, but I couldn’t. It hit too close to home and I wasn’t ready. The preview itself was enough to leave my heart racing and my airway tightening.
More than a year has passed since its release and though I didn’t feel ready to watch, my husband and I pushed play.
Each scene drove a blow into the dam that held back my emotions. It ultimately collapsed when you and your daughter stood in front of Boston Children’s Hospital.
Nine years ago, my husband and I stood at that very entrance. Our son had just been given a death sentence.
In the early morning hours of December 10, 2007 my water broke unexpectedly. I was just thirty weeks pregnant with twin boys. At eight weeks of age, the oldest twin, Isaiah, developed a deadly illness called Necrotizing Enterocolitis. He lost a large portion of his intestines, had a feeding tube, an ileostomy, a central line, was on a ventilator multiple times, survived three near death experiences and ultimately had thirteen operations. He went on to spend his first seven consecutive months in the Vanderbilt Children’s Hospital NICU. At seven months of age however, he went into liver failure.
“There’s nothing more we can do Mr. and Mrs. Daruk, babies don’t recover from this condition,” we were told.
A FALL AND A CALL
Our miracle came not in a fall, but with a call. A precious member of Isaiah’s medical team contacted us and put her entire career on the line to do so. She knew of an experimental drug in an active clinical trial at Boston Children’s Hospital in Massachusetts.
As you well know, there is no place on earth we wouldn’t travel to if offered even a minute chance of our child’s survival.
Within a week our son was life-flighted to Boston and Isaiah spent an additional four months in their NICU. The clinical trial was Isaiah’s last hope. Our family was told just before heading there to get anyone we ever wanted to see Isaiah to the hospital immediately.
The drug miraculously worked and God graciously spared our sons life. Isaiah returned home with a feeding tube, a central line, a home health nurse, and weekly therapies and appointments. His twin was also at home with a feeding tube and he even had an older brother, Elijah, who was two at the time.
Fast forward to the present day. Our eleven-year-old son Elijah, came home from school on the afternoon of April 21st, 2017 perfectly healthy, but within a few hours was in horrible stomach pain. Despite three emergency room visits, multiple ultrasounds and x-rays, a CT scan, two endoscopies, a colonoscopy, a myriad of medicines (several of the same mentioned in the movie that your daughter was on), and more than six different doctor’s caring for my son, he remains in pain. And still, there are no definitive answers about his condition.
“Acid reflux…constipation…gas…anxiety…irritable bowel…functional abdominal pain…eosinophilic esophagitis…”
We’ve heard all these possible diagnoses and yet my son is not better.
My husband and I hear the whimpers, the cries for help and the screams in the middle of the night. Like you experienced, those that jolt you out of the bed as if lightning struck your very heart. We’ve watched him roll and writhe in pain. We’ve felt the punch to our guts as we listen to our son tell us he just wants to die.
Our son trusts in Jesus but this has tested his young soul to its very core.
I never thought I would see Boston Children’s Hospital again unless we took a family vacation for nostalgia. This week, however, I found myself on the phone with them once again.
While waiting to complete necessary paperwork should a trip be in order, a personal connection through my husband’s employer recently allowed us a virtual second opinion from the head of GI at another reputable children’s hospital in the northeast. The name of who would treat Isaiah should we decide to travel to Boston was listed. He was none other than Dr. Nurko.
We’d watched Miracles from Heaven the night before this news. Until then, we’d never heard of Dr. Samuel Nurko.
God sent us to Boston once and our son’s life was saved from a certain death. If He should decide to send us there again, to help our son who lives in constant pain, I am more grateful to have had the privilege of watching this movie at just the moment we did.
I couldn’t believe how similar our stories and experiences were to yours Christy. All the way down to the God-fearing judgmental church ladies. At one point in my journey, in fact, the night I was told Isaiah liver was failing and there was nothing they could do, my pastor’s wife told me,
“Callie, if you hadn’t done this (and she went on to name something she perceived as a wrong move on my part), then none of this would be happening.”
With that comment, something snapped in me. I was done. Not with God, but with church. With pretending. With trusting. My theology was rocked to the core. My heart and foundation tested far beyond what I knew possible and what I was capable of handling.
I haven’t been able to read your book yet, but I will. I want to know the real details; every single one. I am also an author and currently working with my agent to write my memoir as well. It has been sent to several publishers but ultimately it is in God’s hands to do with what He wills.
I haven’t worn your shoes Christy because they fit only you. But I imagine mine look an awful lot like yours. They’ve walked similar paths and felt similar hurts. That is why I felt compelled to write you this letter.
Though it has touched many lives and will continue to do so, your beautiful story has undoubtedly touched mine. As the credits rolled at the close of the movie so did my sobs. And not just mine. Isaiah’s too. We held one another and when I could speak, I held his little face in my hands and said,
“And that’s exactly what God did for you too love bug.”
You and I have tasted of the near death of our children. As a result, the rose-colored glasses eventually shatter. What remains, with God’s help, is a perspective that I couldn’t have received any other way. One that like you, I am committed as a writer and messenger, to share with my whole heart with the whole world. Thank you for the courage to share yours Christy.
May you and your family continue to walk in the goodness of our great, mighty, and awesome God.
With utmost sincerity,
Posted on: July 25, email@example.com