It’s 10:30 pm. I’m laying in bed staring at my sweet baby. The same thing I’ve done for 20 months.
She is beautiful. Delicate features. Wide eyes. Wild hair. Full cheeks despite her wasted body. Her skin wrinkles. Pale. Her mouth always holding her green pacifier. Her hand holding some wrapper. Legs curled in like a frog. She snores, loudly. Motionless.
2 weeks ago we put our beautiful baby into the care of hospice. She is too sick. Too fragile. Our time is fleeting. Nothing will change that.
One day, too soon, I won’t be staring at her as she sleeps.
My heart is broken. I have fought. Advocated. Begged. In the end it bought us more time. I want forever.
I recall our early days. A struggle from the start. Her big eyes staring at me as she choked at the breast. Unable to swallow effectively. No one understanding why.
My other babies were 9 and 10 pounds within weeks of birth. Felicity didn’t grow. Stopped. Growth failure. I felt like I was the failure.
I wasn’t. Her body failed her. In the worst possible way.
Liver. Heart. Kidneys. Lungs. Spine. She can’t even regulate her own blood cell production anymore.
She no longer screams. Medication dulls the pain. I wish there was a medication to dull mine.
Every day I wake up and smile. I laugh. I dance around and joke with my other kids. I don’t need this to traumatize them anymore than it already will. I push my pain aside so I can tend to theirs.
Every night I sob. I wonder what I’ll do when she’s gone. How will I ever sleep again?
I wonder what it will be like without the sound of the machines?
I wonder if the doctors can be wrong?
I wonder why life is so cruel.
Parenting comes in all forms. Some of us have many healthy happy children. Some parent their losses. Some have special needs that won’t kill their children but will alter their lives forever. Some never have children at all and yearn daily. Some children are rocked by mental illness. Cancer. Genetic disease. And some have one toe in life and one in death. We are all on our own journey.
I don’t know how long this phase of our parenting journey will last. I don’t know what the next phase brings. But I do know that I will spend every night, for as long as I can, staring at this beautiful baby who has been given to me, even if it’s fleeting. And even if my heart is breaking.