Dagan is napping. Being able to faintly hear his breathing even from the living room, I am once again grateful for this tiny apartment...our new home. Once I have cleaned and arranged and organized, I can make anywhere home. I’ve had practice, so I know this to be true.
Soft breaths. I look out the living room window and squint from the sun. The grass is worn away to gray dirt littered with cigarette confetti on either side of the front steps. Unless I look down, I am level with the tree branches. I love looking into tree branches. The leaves are turning and the wind is winning the battle today. Soon there will be frost on these windows and snow on the ground. But today...the beauty of it lifts my heart. I want to show Dagan the dried leaves and talk of what the earth does when it rests. But the doctors say to keep him in.
They warn me to keep him out of the cold, keep him out of the heat, keep him away from other kids so he doesn’t catch anything, watch him so he doesn’t fall on his chest against the furniture when he learns to walk, watch his fluid intake, watch his salt intake...protect him, protect him...the unspoken battle to keep him alive as long as possible. “The babies don’t usually die from the actual heart defects,” the doctors, the nurses, and the other “heart parents” have told me. “They usually die from complications: pneumonia, strep throat, bronchitis, or even catching the flu. It’s hard for them to fight things off.” I have heard about the “heart kids” with their various defects...dying in their sleep, cardiac failure on the school bus, pacemaker leads breaking inside their chests, dying during surgery, dying after surgery in the hospital...dying, dying.
Soft breaths. I watch the leaves whipping off the branches and dancing across the brown grass. Dying. Too much focus on dying.
Dagan was three months old when they told me he was dying and there was nothing they could do for him. I forced myself not to dwell on it because that was something private between Dagan and God. I concentrated on his life while he was here. I would not let family, myself included, into the neo-natal unit if they were upset...sad, crying, or shaking. I did not want him to absorb our fear. I felt blessed by every day he stayed. I smiled and laughed and sang to him because being sad was an insult to Dagan. It would have been like mourning him before he left.
But there were times when sadness would well up and grab me by the throat...suddenly without warning. I couldn’t breathe. I couldn’t talk. I would just wave, turn my face from them, and they knew I was leaving to find one of my solitary spots...to cry. I am a private crier. I’ve had practice, so I know this to be true. This was just selfish crying, anyway, and it made me ashamed. I couldn’t eliminate the primal mother, born with Dagan, who lamented “please, don’t take my baby!”...even though I whispered to him in the night underneath the beeping of machines, “don’t stay for anybody else, Dagan...don’t stay for me...stay only if you want to...it’s okay if you want to leave.”
One afternoon Dagan’s cardiologist wanted to see me in his office across the street. He looked me in the eyes, something he hadn’t done much of since he told us there was nothing they could do for Dagan. “He’s dying. You know that?”
“Yes, I know.” It was so obvious I wondered why he thought I didn’t know. I had been there watching Dagan die for an entire week. He had gone into a cycle the past twenty-four hours of rallying and fading to near lifelessness. His skin had a blue-grey color that chilled me.
The doctor presented a desperate thirteenth hour plan. “If you decide to go ahead with this surgery your son will most likely die on the table. If you don’t have the surgery, you won’t put him through any of this and he may be with you for maybe a day to maybe a week on the outside. He’s not in any pain and he could go peacefully.”
“If there is a chance, I have to give it to him.”
The doctor sighed deeply...and the race was on. Emergency evening surgery. Dagan was pulled off all the machines except his IV. I was finally allowed to hold him for the first time since I carried him into the hospital. As they laid him in my arms I was smiling and crying...my joy could not be contained. I had my baby in my arms. The glistening eyes of nurses said good-bye. I would not say good-bye. I kissed his damp forehead and told him I would see him later.
And I did.
Soft breaths. I pace the living room.
Dagan looked so pink after the surgery! Before he went home a week later his cardiologist warned me that Dagan would probably be back in the hospital within a week or maybe a month. He reminded me that all but one of the children born with Dagan’s particular series of defects were dead and had died before the age of two. Most never made it to their first birthday. I threw up in the bathroom while Dagan was getting his stitches out and then took him home.
Soft breaths. He will be a year old in November, God willing.
God willing. Where had my faith gone? How had each day turned into rising panic instead of a celebration of gratitude? I played with him, read him stories, and laughed with him, but there was a constant underlying fear...the long list of potential harms. I had recently joined an organization at Children’s Hospital called “Parents For Heart.” I met fearful parents and the heart kids who were either throwing quickly appeased temper tantrums or clinging with huge frightened eyes to their mother’s legs. Dagan was a happy child...inquisitive, trusting, intelligent...and sick every few weeks. But he was, also, growing up in the typical unnatural bubble and I was becoming more afraid with each illness. Dagan was beginning to back away from new things and people. He was cranky more often. I was quieter and more nervous. I could see our future.
Soft breaths. I pick up Mr. Sock-Man from under the coffee table and his legs and arms flop against my knee as I pace.
Back when Dagan lay dying in the hospital, I was concerned with how he lived his days, not how many days he lived. I didn’t listen to them... I didn’t listen to them. I had been at peace with the situation. His life is a personal thing...between him and God. We all live on borrowed time. I want him to live well while he is here. Better a shorter life that is as normal and happy as possible, than a longer life filled with fear and isolation. God willing.
Rustling of the sheets. Small creak of the crib as he shifted to his knees. Dagan is awake. He is listening. In a minute he will give a small cry if I don’t greet him from his nap. I smile to myself...just to know him. I greet his smiling face and change his wet bottom. God forgive me if I’m wrong...I bundle him up and put him in the stroller. Dagan bubbles with those chortly baby laughs in anticipation as we set off in the cold, sunny, wind to catch leaves and talk to kids at the park and discuss how the earth rests under the snow.
This was the day I got back on track with Dagan. More concerned with his soul than his body. Who he was as a person vs. how long he lived. And--God willing--he continues to defy the odds and is now 34 years old!! And he's a good man with a great sense of humor that I am proud to know. :):)