I love your curiosity and concern. I love you. I love talking about my daughter. She is an extraordinary person.
I want to tell you something:
She can hear you.
Not only can she hear you, she can understand the words you are saying about her.
Not only can she hear you and understand the words you are saying about her, she can answer your questions about her because she is right here.
I cannot answer one more question about her hands. I can’t.
Do you know her skull has been taken apart and pieced back together and my mama heart has been dissected and sutured whole, sloppily, over and over for the past four years? Do you know we have not had a week free of appointments or procedures or therapies or surgery or consults in 1,527 days? Do you know we have never been anywhere without stares or comments or way too big smiles in her whole life? Have you ever thought your child’s heart might explode from a tickle? That her eyes may protrude too far and rupture from a fit of laughter and glee?
Have you ever wondered if that glassy look was sleepiness or destructive intracranial pressure? A stomach bug or enlarged ventricles? Silliness or seizure?
Do you wake in panic, and nauseous, crawl to your child (2 feet away yet still hooked to two monitors) praying she is alive? Have you watched your friends bury their babies? Do you know what the pediatric ICU looks like? Do you know the hospital menu by heart? Do you ever feel calm?
This is truth. I cannot breathe about it. I cannot explain to you—in any way acceptable to the depths of me—how this feels in the real deal flesh. I am devastated. It is like an irreparable tear in a watercraft that must hold. But it just can’t. I will always be taking on water. Bailing as fast as I can—sweating and exhausted.
Today I walked the halls of the hospital and lied to my baby. I told her, “I didn’t know that rubber band around your arm was going to bite.”
I knew. I felt nauseous for weeks. I put it off as long as I could. One small blood draw—she’s seen so much worse. But this happened in my arms and I lied. I lied because I am the one who carries her in to these nightmares. I pull her sleepy and soft from her cozy white bed, and I wrap her in blankets and hand her over to scalpels and needles and drugs and terror.
I am broken in ways you will never, ever come close to understanding. I am treading treacherous waters, and I know I cannot swim. This is fear.
I remember a time when I begged to feel something. Anything. Pain. Regret. Remorse. Desire.
This feeling now, the one that settles in against necessary breath—this constant and familiar beating—it is sufficient. It is everything I ever imagined feeling to be and more. So much more. More “more” than I can pull words for. It is too much and just enough to keep me here.
Do you see her frustration? Her anger and impatience with you and your eyes and your wondering? She does not need “normal” or “full” function or aesthetics. She needs real. She needs love. She needs eyes that have not been turned, time after time, away from physical differences.
So sit in it. Sit in your discomfort. Sit in your need for “normal.” Sit in your questions of when and how and where and how much. Sit there and imagine what it would be to be deduced down to some wrong thing that could be fixed but wasn’t fixed just quite yet.
Sit there and and say it. Sit there and ask her what she will be.
Just today she told me she can’t wait to be a mother and a nurse and a big sister and a firefighter.
Stop looking past her and asking me questions that I cannot answer. Her name is Poppy. She is 4.
She can hear you.