Libby sat in the row of guest chairs this morning, just waiting. She wasn’t even sure what it was that she was waiting for, but there she sat in anticipation either way. Dr. Melbourne, the Cardiovascular Surgeon who had taken over Israel’s care, walked into the waiting room. He was a very short man, small-boned and frail-like, with silvery gray hair that was styled upward, giving him the look of a mad-scientist. He was anything but a mad scientist and to the contrary was very mild tempered, kind and quiet in his tone. He came through the double doors and sat right next to Libby. Looking at her for what felt like forever. As if studying her face and trying to gauge where her head was at the moment. He folded his hands, leaned forward with his elbows resting on his knees and began to speak softly as not to engage the ears of the other parents around them.
“I think it’s time that we consider Israel’s quality of life over his quantity,” Doctor Melbourne said.
“We will of course continue to care for him, but with the state that his body is in, we may not be able to do much more than try to keep him comfortable. A heart may come in the meantime, but if it doesn’t and things begin to take a turn for the worse, what is it that you want to be done?”
Libby sat, staring at the doctor with all of his immense years of experience accumulated in the creases of his eyes and lines of his face. Watching him in a state of somewhat disarray as he searched his mind for the words. Not knowing how to ask them if they wanted to let their son die. He lifted his head up and looked at her straight in her eyes again. As she looked back at him, she simultaneously heard that strong intuitive feeling that she woke up with speaking to her, from within. She scanned the room as people laughed and hugged on their little ones running about and then landed, locking eyes with James. They had both come to the decision with this last heart attack that they did not want to continue to allow their son to suffer as he had been for his entire, young life.
James looked at her and nodded his head as if to say,
“Go ahead. Tell him what we’ve decided.”
She looked at the doctor directly, hoping that he would hear her sincerity in wanting only the best for her son and not any form of insensitivity. She started to speak without a real thought of what to say.
“We’ve decided that after watching this last heart attack that we just don’t want Israel to go through this anymore. He deserves better than this nightmare of pain that he has endured. The next time there is another episode, heart attack, or whatever, it needs to be the last time. We are prepared to let him go if it means that he doesn’t have to suffer any longer. We just want him to be in peace and in no more pain.”
The doctor nodded his head and responded,
“I agree and think it will be the best plan of action the next time, for Israel. Going forward we will watch and see and if he has another episode, we will not intervene if that time comes. I am so sorry.”
He stood up and shook James and Libby’s hands as they thanked him for the time that he had spent taking such meticulous care of their son, and he walked through the doors that lead into the ICU. It was at that moment that Libby realized that this was what the feeling that she had that morning was all about. In that second though and the hours to follow, she just waited for the inevitable. Later that day, with frayed nerves she left to go downstairs for another coffee before heading back up to the waiting room.
As Libby made her way through the hallways and down to the courtyard, she stifled the urge to break down in tears and made a B-line straight for the same concrete benches that had braced all of her worries for the past few years. She sat by herself in quiet reflection and wiping away tears that were trickling down her sunken cheeks. Through the glass walls she could see all of the countless parents with sullen looks on their faces walking up and down the corridors leading to the Emergency Room, with their sick children in their arms. Some younger than she was when we she first stepped foot into this hospital with her son. She could feel their fear and uncertainty as they passed by. She wanted so badly to grab each of them and tell them it would all be okay as she tried to come to terms with the conversation she had with Dr. Melbourne only minutes before. She stared down at her hands, her fingernails chewed down to the nubs, her cuticles pulled back, red and raw from all of her picking at them in an effort to calm her anxiety. She could do nothing, but remember the premonition that came to her as a teenager. All of the sudden it was no longer a mere dream for her to try and brush off, or convince herself would never happen. In that instant, Libby was transposed from woman to teenager and re-living each solitary moment of her life that had lead up to this.
“It was just yesterday that I was seventeen and one of these confused parents here making my way through the hospital. Now, I know this place like the back of my hand and am making decisions for a life that isn’t my own. I couldn’t feel any less unprepared than I do right now. Please, if there is anyone up there listening to me, help me. I don’t know how to get through this.”
Libby sat, eyes closed or a few minutes hoping for something to give her a sign when she felt a wave of unexplainable peace, consume her. As she took a deep breathe, she stood up and like a woman on a mission, made her way back to the Cardiac ICU.
The Pediatric Cardiac ICU, with its aroma of disinfectant and stale coffee filled the air. It was packed with parents, guests and their children visiting. Any other day, Libby wouldn’t have minded so many people, she would have been happy to see so many smiling faces mixed among the concerned, but today was not that day. She had just made this decision not to prolong her son’s life and yet all of this life was going on around her. Everyone was talking, all in their own separate discussions, voices seemingly melded together as part of a choir, singing different words but all the same tune. As the noise grew louder, her vision began to blur and her heart started to race, much like in those movies where the main focal point is moving in slow motion while everything else is at a rapid pace. Her eyes were fixated in tunnel vision to the ICU doors. They knew things would eventually take a turn for the worse for Israel, because they always had.
A young woman walked through the door making a determined line straight to the waiting room receptionist.
“Which is the Solomon family?” She asked in a hushed, but adamant voice.
How Libby heard the nurse’s words over all of the noise and chatter, she didn’t quite know. She stared at the nurse waiting for the words to pour from her mouth as she walked over to where Libby and James were sitting. Libby knew what she was going to say.
“Mr. and Mrs. Solomon?” She asked. “I need you to come with me,” she said quietly.
“Is everything okay?” Libby murmured under her breath, knowing the answer already.
Libby stood up, as her husband followed suit. Her hands where clammy and the feeling of faintness started to consume her. Together they followed the nurse towards the double doors. Like prisoners being walked to their execution, their heads sullenly stooped, making slow and deliberate steps. Libby stopped and turned around to look at her Aunt and Uncle who had just shown up minutes beforehand to sit and visit with them.
“We’ll be right here, honey.” Her Aunt looked up at her and said.
“No. You guys can come back, too. You should come back.” The nurse interrupted.
Libby and James looked at them and said, “Yes, come with us.”
It was a reaction that almost felt necessary. A sense of security washed over Libby, knowing they would be there beside her. As they entered through those peach painted, wood framed doors James grabbed Libby’s hand and she turned and looked at him in his eyes.
“Are you ready?” James asked.
Libby let out a sigh and responded, “Yeah… Here we go.
Those halls, the same ones that she used to get from one end down to the other in a matter of seconds over the years, all of the sudden seemed a mile long. The nurse was walking with an urgent pace and Libby behind her, only wanting to drag her feet as slowly as she could.
“Am I really ready for this?” Libby thought to herself.
“Can I really say goodbye?”
It was no longer a hypothetical, what if, it was a certain present reality. This was happening.
“We passed the scrub sink? Why did we just pass the scrub sink?” Libby whispered to her husband, as the nurse kept them walking.
They were never allowed not to scrub in before, as it could potentially spread infection to their child, awaiting a heart transplant. The nurse must’ve known. There was no time to waste. As they passed right through those heavy glass doors, to the ICU, all eyes were on them. There must have been at least ten nurses and doctors in the room, crowded over this one small boy. Her Israel. Libby looked up at his monitors, noticing that his stats were quickly dropping. His heart only beating a shallow thirty-six beats per minute. One nurse was about to push a drug into his IV line to speed up his heart, another was breathing for him with the bag and mask. All of the others were crowded around looking down at him. Usually the very second one of the parents or visitors would walk into the room the nurse would greet them with a welcoming smile and give a run-down of how Israel was doing so far, that day. Not this time. This time they were all completely silent and looking at Libby with sadness in their eyes. The only face that she could see, was his. Israel’s sweet, angelic face.
For a split second she imagined what he must be feeling; so many people, smothering him with looks of panic and concern on their faces; machines chiming, as if they are counting down to his death. She imagined how frightened he must have been within his mind. It was then that she finally stood in his shoes. She could feel the immense pain wash over her, struggling to breathe with each gasp, the nausea that accompanied Israel’s strict regimen of medicines; the hunger so overwhelming, but the inability to eat. She felt her bones throb from head to toe. She realized then that this is what Israel has felt every day for nearly three years of this battle. Libby immediately turned to the nurses and doctors who were preparing more IV medicines to give him.
“What do you think you’re doing?” She asked.
“We didn’t want it to be this way!”
The nurse with the syringe of Dopamine responded,
“Do you want us to give him this to keep his heart going and speed it up? If we don’t give this to him now he will die.”
Libby’s eyes kept being pulled to an empty corner of the room. She could feel him there, watching her as his little frame began to appear. He looked so peaceful, so happy. His cheeks were rosy, his demeanor was that of someone who had finally been set free. He was already gone.
“Stop. Leave him alone. It’s time and we are not going to put him through this suffering anymore,” Libby said to the resident doctor.
The doctor capped the syringe and backed away from the bed.
“Are you sure, Libby?” James asked her.
Libby looked up with tears filling her eyes and said,
“Yes. I’m sure. It’s time.”
Once again her eyes being pulled to the corner of the room like marionettes attached to strings with no control of their own. She saw him smile. She felt his joy, his peace. He was already whole. Her Aunt who was next to her started quietly crying and praying aloud. James, at the foot of the bed, began crying and talking to their son.
“You can go home when you’re ready, we understand. I love you,” James said.
Libby kept to Israel’s side, softly caressing his arm and his beautiful red hair.
“I love you. When it’s time, you can go home. We understand. I am so very proud of you, my baby.” She said, trying to hold back her tears.
Across from Libby, the nurse was still breathing for Israel with the bag.
“I want to hold him. Without all of these tubes and wires. I need to hold him.” Libby said.
Just as she did the day that she bore Israel, she needed him within her arms. His heart was beating slowly across the monitor.
“Do you still want me to do this?” The nurse asked as she continued to slowly push air through the breathing mask over his face.
“Will he feel like he can’t breathe or be in pain if you stop?” Libby asked.
“No,” the nurse replied.
“Then yes, please stop,” Libby answered.
Another nurse came over and unhooked Israel from all of the monitors and placed him carefully in Libby’s arms. He was so still. So quiet. She knew he wasn’t physically in his body because she could still see him in the corner of the room, smiling at her, with a large ethereal figure standing beside him. As he took his last breath she held him to her chest, feeling the soft, shallow whispering across her collarbone. She took in the sweet aroma of him, one last time and kissed him goodbye. His heart finally stopped all together. He was gone.
Libby’s parents came walking into the room being led in by another nurse. Her Mom with tears rolling down her cheeks was sobbing. Libby could feel her pain in her deep and quiet cry.
“Noooo… Noooooo… My Israel. My precious Israel, noooooo,” she cried.
Her mother reached out her arms towards Libby, wanting to hold her only grandson. Libby carefully handed Israel over to her mother, as if handing her a piece of fragile crystal. Her mother fell to the floor cradling him and rocking him back and forth with her lips on his forehead. The same way that Libby always saw her mother cradling him since the first day that he was born. Tears running down her face and onto his, she told him how much she loved him. Libby’s Dad leaning over her Mom with both hands on her shoulders, they continued to cry over Israel’s tiny body.
Libby stood in the doorway, not knowing what to do. Her entire existence had been about her beautiful boy. Every day that she woke up, each thing that she did in a day revolved around what he needed of her. All of the sudden, her purpose was gone. Instantly, she became childless. She was no longer a mother. She watched as her mom held him and as everyone in the room was crying and praying. It didn’t feel real. She didn’t know what to do or how to be. She just stood there watching. Though it was his heart that stopped, Libby felt like hers had as well. She couldn’t understand the level of grief that instantly consumed every part of her. She had just lost the only thing that meant anything to her in this world. She lost her everything. Libby leaned down over her mother to receive Israel back into her arms. Just then the nurse came in quietly and led her back towards his ICU bed.
“Because he is an organ donor, we have to get him ready for Transplant Services to come in. As you know, because so many of his major organs have failed, they will most likely only be able to use his tissues and eyes, but time is of the essence here.” She whispered.
“They won’t have to do an autopsy, since we know the cause was his heart and that will also allow Transplant Services to move more quickly.”
“Yes, I understand. Any way that he can help someone else, is what we want,” Libby responded.
“I will need to get him cleaned up and everything removed off of him before they come down. Would you like to stay in here while I bathe him?” The nurse asked.
“Yes, I don’t want to leave until I have to. Can I have the pajamas he’s wearing, please?” Libby replied.
“Yes, we have a memory box for you. We will put his clothes, a lock of his hair and his hand and footprints in it. And anything else that you may want.” The nurse said.
What she wanted was him. If she could have taken every article, piece of tape, and everything else on him and in the room to remind her of him, she would have. The nurse removed all of the tape that had been holding down his IV’s. Delicately removing his tiny hospital pajamas and diaper, she began to wash him down with a large cloth. Libby stood directly opposite of her, touching Israel’s soft skin and talking to him. Telling him everything that she wanted to say and wish that he could hear. And yet, she knew that he could hear it all. She could still feel his presence in the room, like a warm hug around her. Libby held his stocky hand with long fingers that she had thought from the first moment that she laid on eyes on them, would be perfect for playing the bass someday. She cradled the back of his head in the palm of her hand. As Transplant Services entered the ICU, Libby quietly whispered,
“I have to go now, my baby. You’re going to get to help someone else now who needed it like you did. I love you so much. I’m so sorry that I couldn’t have saved you. This is not goodbye, we will be together again.” And then she left the room.
“Come with me this way,” the Nurse said. “We have a special room for you and your family. Take as long as you need.”
She was escorted into what was known as The Grief Room. It was a tiny shoebox of a room with a love seat, end table and phone. As the door opened, Libby’s mother was already in there with tissues in her hands. Libby could feel her knees beginning to buckle underneath her as she walked into the room and collapsed next to her mother’s side. She sat with her head resting on her mother’s shoulder as she listened to everyone in the room talking. They went through a list of who all needed to be notified.
“Your sister, Maria is on her way here. Charity is at work still, so she and Joseph cannot come up just yet.” Her mother said.
“It’s okay, we probably won’t be here for much longer, since they are taking him back now. No one needs to try and come up. We’ll probably be gone soon.” Libby replied.
As the nurse came to hand Libby the memory box, they all got up and started to walk towards the doors leading to the waiting room. It was late at night and visiting hours had ended. In the waiting room there were just the parents of the children back in ICU, all in their squeaky chairs and trying to sleep. They headed out of the doors of the waiting room and stood at the elevators. Libby’s sister, Maria, showed up as they all began to load in the elevators together.
Everyone was talking, but that same tunnel vision that Libby had experienced at the start of the day, had returned. She could hear nothing. Just a series of “Wah Wah’s,” as if she was in a Charlie Brown special and all of the grown-ups were discussing. Libby stood there clutching this light green memory box, closed shut with the same colored thick ribbon. Holding onto it as though he was somehow in there.
“I came into this hospital with a child in my arms and I’m leaving with a box. A few pieces of him that will never make up the puzzle,” Libby said to herself.
She walked ahead of the group of family, trying to navigate her way to the parking garage, griping his box against her chest. The entire car ride home, she held it firmly to her.
She found it ironic, how Israel’s life had come full circle before her eyes and within her arms. She carried him, feeling him grow within her stomach. His first movements. She welcomed him into the light and held him close as he took his first breath. Watching in awe the first time he smiled and her heart melted at his first laugh. The sweet reactions that graced his tiny face as he took his first bite of real food. As a parent, she never conceived of a day where she would be giving him back to the light. Only this light was different. This light was permanent.
[Excerpt from the book Half-Hearted, Fully Loved – Written by Elizabeth Ann Balli]