The cool thing about being the older one in a friendship is having the knowledge of the experience. It was important to Emily for us to be some of the first to hear her news; they were going to have a baby!!! I knew the joy Emily was feeling and I immediately recognized that glow.
Her pregnancy went smoothly and right on time little Luke arrived and our extended family had grown. I never doubted how great she would be at the “mom thing”. After all, she had been helping me out with mine for years. So motherhood suited her naturally and she and her husband, Jason, settled into their new family life.
The months after Luke’s arrival were filled with their frequent visits home and lots of phone calls with updates about how fast he was growing and changing. So a phone call home from Em about a needed doctor’s visit sounded no alarm. Being a nurse she had picked up on some slight changes in Luke and wondered if he possibly had an ear infection. The next phone call would launch their ”God, anything” journey.
From the pediatrician’s office, Luke was sent directly to Children’s Hospital with a weakening and enlarged heart. The days, weeks, and months that followed for Luke and his parents were a whirlwind none of us ever expected.
He was diagnosed with Barth Syndrome, a rare and serious genetic disorder primarily affecting males. He was placed on a rigid med regiment; an attempt to slow the affects of the disorder on his heart. Emily’s days became all about administering all the prescribed medicines needed for his care. She and Jason were educated and prepared about other symptoms to expect with this diagnosis.
They moved closer to home and they waited. They waited and watched for any signs of his condition worsening. On the day of the initial shock, Emily had heard the words “heart transplant” for the first time. Their hope was to hold off on such a dangerous and drastic measure as long as possible. But Luke’s condition declined and the need became a reality.
Just four months after that life-changing doctor’s visit, Luke was admitted at Vanderbilt Hospital and placed on the list for a heart transplant. A mechanical heart (called a Berlin heart) was surgically implanted to aid (take over, really) Luke’s heart function. His own heart was just too weak and worn out. A month past his first birthday his body needed help to live. Exhausted and weary herself, Emily again and again prayed, “God,anything”.
The nurses and other families with transplant patients admitted to the CICU at Vanderbilt became Emily’s friends and neighbors while they all waited on news of an available organ. On our occasional weekend visits to see Luke, I was amazed by how many people were there awaiting transplants. Some families had been there for months with their loved one, having relocated their lives to see to their family member’s needs.
Admitted in July, time rocked on for Luke, Emily and Jason. A new college football season started, Thanksgiving came and went, and Christmas was celebrated, all within the walls of the CICU. Luke had good days and bad days, and Emily had to be forced to leave him so she could get rest.
The prayers kept coming and January brought the newness of another year we all come to expect. More than ever, Emily wanted to receive the call of a heart being available. She sensed Luke was growing more fatigued, and there were growing concerns of potential complications due to the length of time Luke remained dependent on the Berlin heart. Those concerns were realized when Luke developed some clots that were hindering the function of the Berlin.
The medical team was brought together and it was decided Luke would have to undergo a surgical procedure to try and capture and rid his body of the clots. With miles between us, I waited by the phone to hear from Emily. The news came via text. It read, “The results are not good. They’re not able to break up any of the clots. His lungs are full of clots….”
Shock and devastation is how the news was received. I knew receiving it via text meant Emily was still trying to process the day’s happenings. My husband and I hurt for Luke, Emily and Jason and we prayed for God’s will in the situation, our “God, anything” prayer. We readied for bed and I eventually fell asleep with Emily on my mind so strongly.
The phone ringing in the wee hours of the morning startled me but did not surprise me. Emily’s tearful voice on the other end sounded so heavy and hopeless. She could not believe it had come to this. Luke could be taken off the transplant list due to the clots in his lungs. The doctor’s had exhausted themselves trying to clear the blockage. I listened as she cried, hearing the fear and anguish in her voice. My husband took my hand (and he prayed) as I tried to find the right words to console her. Over the course of all these months my words over and over to her had been “better days”. I told her how we had prayed for God’s will for Luke and, if that meant an eternal homecoming for Luke, that he would be made whole and in no more pain. He had better days ahead of him, no matter what.
Praying, facing and accepting the “God, anything” prayer can be unbearably hard. It reminds us to trust, obey and have faith. It can renew our strength and it gives us hope when we remember God is all knowing and in complete control. Our hearts crushed, we reach surrender and wait for a turning point to come.
For Luke, the newness of another day brought fresh ideas from the medical staff of infusion treatment that could possibly shrink his clots and clear the blockage enough so he might remain on the transplant list. It was potentially very dangerous and would have to be monitored closely for any adverse effects. The procedure was administered and it worked!
Emily updated on social media, sharing the good news with all of those who had been following Luke’s journey. Again, she asked for everyone to pray for Luke to receive a heart soon. With growing complications from having a mechanical heart in place for so many months, there was a greater sense of urgency in Emily’s request. And yet she reminded us all of what having an answer to our “God, anything” prayer meant; for our desires to be met, another family (of a potential heart donor), would be giving up everything.
It is written in God’s Word, “Call to me and I will answer you and tell you great and unsearchable things you do not know.”
January 28, 2014 became Luke’s Happy Heart Day! Our anything prayer for Luke answered!
From that day to now I often think about a mother I will never meet, and I wonder when she faced the death of her own child did she utter, “God, anything?” Her willingness to think of others in need- in such an overwhelming time of grief for her and her family- gave life to Luke and strength to carry on to my friend Emily.
This week we gathered as a family to celebrate Luke turning three! He continues to grow and thrive; a walking miracle, testifying to the greatness of God without speaking a word! He is evidence of how God’s power works through a global community willing to pray and think of others. We are living better days!