Several months ago I was connected with this father who had a story to tell.
He sent it to me in many, many pages and it was challenging and beautiful to craft it into this.
We are in the car so early that it is still dark out.
Surgeons like that though, to start the day in the dark.
My daughter is in the seat behind me and she is excited, all smiles, the ray of sunshine that she has been every day of her five years. She is not scared.
I am the one who is scared.
I am scared because I am the one who has given permission for another man to cut into my daughter’s heart and replace her tricuspid valve. I am the one who a day later will watch that man stick a hand into her little chest when her heart stops beating and I am the one who will listen in shock as they say that they are so sorry.
My daughter though? She just wants to wear hospital pajamas and get what she calls her robot heart. She wants to be doted on by nurses and eat food from her bed and watch cartoons on the television in the corner of the ceiling.
I just want her to come home.
It seems to take no time at all now to walk across the hospital parking lot and I wish it would take longer. My daughter is babbling happily beside me, but I can only think of how I want to turn back to the car and not listen later as the anesthesiologist tells me that she doesn’t like the sound of my daughter’s lungs. I don’t want to be there when they get a nebulizer and then a sedative and then move her away from me. I want to turn back to the car and not have them tell me that after she is prepped for surgery they will bring her back for one last kiss goodbye.
One last kiss goodbye.
I don’t want to hear that and wonder if they mean for today or for all of our days.
How did we get here so quickly? How are we already in the waiting room five hours into surgery with a nurse telling me that the surgeon could not repair the valve after all?
“It is just not functional enough,” the nurse says to me.
Nothing is, I think.
“It will have to be replaced completely,” she tells me.
Just bring me my daughter, I think. Just let this be over so that she can walk out of there and grab my hand and go home with me.
What I don’t know is that when surgery is over I will hardly recognize her, the color completely changed in her face and her small body attached to so many pumps and wires and machines that I won’t be able to find her inside all of the mess. I’ll want to call to her. I’ll want to say something so that she knows I’m there, but a whole team will surround her and they’ll push her past me and I’ll have to just settle for being glad she is still alive.
They told me it would be just a few minutes before I could see her, but it has been two hours now. I have been waiting two hours when finally they come to get me. I am prepared to rush to her bedside and hold her in my arms, but when I make it to her room there are so many people buzzing around her that I don't know where I belong. I just want to get to my daughter, but for the first time in her short life I understand that I am the least qualified person in the room. I helped give her life, but these people with masks and tubes and beeping machines are saving it and so I stand back. I give them the room they need and I am grateful, but I am hurt too.
I don’t yet fully understand that she is on a ventilator and that over the course of days they will turn that down more and more to see how well she can breathe on her own and I don’t yet know how angry that will make me. I can’t comprehend how once she is off the ventilator she will not be allowed to drink for two or three whole days and that she will be so thirsty she will beg and cry for water and I will almost give it to her because the pain of watching her struggle will be so unbearable. One sip could kill her though, and so I will have to refuse and we will both feel tremendous pain over this.
I don’t yet fully understand that this suffering will not be the worst of it though, because eventually her heart will stop beating and I will spring out of bed and watch, barely dressed, as a surgeon puts a hand into her chest and attempts to shock her heart back into rhythm.
It won’t work.
My daughter’s heart will not beat on its own and so they will begin cardiac massage as a resident takes me aside so that they can get a bypass machine in, and I’ll think back to when I found out my wife was having a girl, this girl. I’ll think about how the doctors said that her ultrasound showed something they couldn’t decipher on her brain and her heart, but how I thought she’d be a miracle when she entered the world on 11/11/11 at 11:11 in the morning and the hospital’s public relations staff ushered in reporters and a camera crew and we were on the news that evening and in the paper the next day.
It turns out none of that has saved her from this though, and as I stand watching these strangers trying to bring my daughter back, I think about how brave she’s been all this time. I think about her first chest X-ray when she was only eighteen months old and all of the needles and scans and tests and how she would never cry or even wince. I think about how she told all of her kindergarten classmates that she was getting a robot heart so that she could be normal and I think how nothing about this is normal.
What I don’t know as I watch these men and women hover over my daughter’s heart is that two days later her eyes will move under their lids; her hands and feet will wiggle. I don’t know that the doctors will fear for her brain functioning so I’ll lean in close and whisper a secret in her ear, words only she and I know about. I don’t know that my own heart will feel like it too has stopped beating as I wait for her reply and that finally it will come, not with sound, but with a message I’ll read on her lips. Still, I will want to make sure she is really there and I’ll say something else, another message that only the two of us know.
Then I’ll wait.
I’ll wait a beat of her heart and suddenly it will come, another quiet response for me to read and know for sure that my daughter is there.
I’ll be sure that my daughter is there, but what I won’t be sure of . . . is that my own heart will ever beat the same again.