Just like that, she stopped breathing.
“Your little girl went to Georgia and brought back the flu.” The nurse was kind, but a worried look was in her eyes. “Take her home and watch her closely.”
At home, I never left her side, sitting in day-old clothes and unwashed hair. I thought, prayed, and chanted, “Breathe baby, breathe.”
She whimpers, and I take her cold purple hand, “Mama is here.”
That night her oxygen slips lower. She turns blue. I grab a coat, my slippers, purse, and keys. I yell to my husband, “I have to take her in NOW.” He shakes while he buckles her in the car seat. I grab my phone and dial a number that is all too familiar to me. The hospital.
We get to the ER. It smells like someone dumped a pint of Lysol all over. I sit in a hard chair and hold her upright trying to find the right position to bring breath to her limp body. No matter what I do she gasps for air.
My chest hurts and my eyes burn, but I won’t cry.
We get put back into a tiny room filled with nurses and machines. She’s put on oxygen and a tube is forced in her mouth. She cries because she’s hungry. I try to give her some food through her G-tube and the doctor, who has been on shift all night, barks at me to stop, “She can’t have food now; she needs her vitals done.”
Her palliative care team enters the room. The room shrinks even more. I am feeling hot and dizzy. The monitors begin to light up and alarms go off as her heart and breath slow to a crawl. “Breathe, baby, breathe.”
I feel dizzy. Everything is hot and spinning. Then everything slows down and the room goes dark.
When I come to I am outside the room having water forced on me. I don’t want water, I want my baby. NOW! They put us in a room on a cold and sterile hospital unit I know all too well. We sit in this room on this floor a few times a year. I feel like I should have a frequent flyer card. I sit in a hard chair I pull next to her bed and feel her cold purple little hand.
Breathe, all I can think is breathe.
The nurses are kind and leave us alone. I beg for her to just keep trying. I pray and plead . . . She’s so little. You don’t need another angel! Go take someone else who is old and lived a full life. Take me. She’s six.
She dips more. My palliative care team comes with the doctors. They bring a DNR form. The form feels like fire and burns my hands while leaving my soul ice cold. I go to the bathroom, hold the sink and vomit while the voices around me drone on. My breath is gone like hers. The chaplain prays but I don’t hear the words. I am so numb. Please don’t die. You are my sunshine, my joy.
I can’t bury you.
The days drag by. Slowly the tide turns.
Little, tiny breaths. She tries hard. One morning she looks at me and smiles. “Welcome back baby girl.”
But death was angry and left her lungs shattered and scarred as his battle wound. She comes home on oxygen support. I fool myself into thinking it’s not forever. Right now I am too battered to deal.
We go home. She’s weak and lives in her wheelchair and beanbag chair. She’s tired but alive. We all dote on her, even her big brother. Thankfully her soul isn’t the kind that spoils with excessive gifts and constant attention.
She’s home. She lived. We have scars, but she lived. Every dance with death brings strength to our family bonds and infuses me with a bravery I carry out into the world. The world needs more children like my daughter and strong families to rise to any occasion and fight for life at all costs.