Your hugs are my favorite. I’m constantly amazed at how strong your one ‘good’ arm is. It’s like being in a vice, one that is welcomed, when I’m in your embrace. You love to hug me, want so badly to let me know that I’m entirely loved, and not just ‘sort of’ loved.
It’s at the point now, meaning enough time has passed, where I can’t recall what your hugs felt like when you had two functioning arms. The last time you hugged me with both a lefty and a righty was when you were about a year old, 15 months of age to be exact. I wish that I remembered the exact last time…but I don’t. It was probably in the surgical prep room…right before you were given anesthesia that would put you to sleep…right before your little life would change forever.
I want you to know how guilty I felt, how guilty I still feel. How even now, 10 years later, I’m in tears writing about that day.
As a mother my main role in life was to protect you. To keep you safe, out of harm’s way, in one-piece. And I failed.
Because I signed my name on the hospital intake form. I let people in white coats examine you. I let other people in green scrubs and surgical masks wheel you away. I let them give you tylenol to ‘calm you down’ because they were scaring you with those masks on. I let them stick a needle in your arm and give you medicine that would put you to sleep, so that they could butcher your brain. I did that. I allowed that.
Sasha…If I’d have known. I would have NEVER let you go that day.
When the surgeons emerged into the waiting room, the junior of the two hiding behind his senior, to tell me that everything had gone ‘textbook’. I believed them.
When 3 days later, after you’d been in the PICU, with a bed in the corner right next to the nurse station window, the surgeon showed his face for the first time since you’d been brought here to ‘recover’, I was mad.
You’d been on morphine for days, never waking for long enough to give me a look, much less a hug.
I had insisted they take you off the drug. They’d given me the stern side-eye, told me it was irresponsible to deny you the medicine that was keeping you ‘comfortable’. You’d just had brain surgery after all, and why would I choose for you to be in pain?
I told them that I needed to see you awake, and that if you were still in pain that we could continue with the morphine. My mother’s intuition was peaking, and I needed to see you awake.
My intuition peaked again when the surgeon took this little spiked wheel out of his pocket and rolled it along your right foot, which elicited a fierce jerk from your right foot. And then…he tried it on your left foot…and nothing happened. You didn’t even flinch.
I took a pen from the nurse’s station, and used the cap as a tool of my own to test your feet, your arms…only the right would move.
This information was told to the doctor on the floor, the doctors who came on rounds, then to the surgeon again.
It must be a blood bubble. Or an air bubble. It’s not permanent. Don’t worry. You worry too much. If it makes you feel better, we’ll take her in for an MRI.
The MRI, showed nothing…according to this trusted man in the white coat.
A few days later, 4 days longer than we had expected to stay in the hospital, a physical therapist came by to see us. She was young, red-headed. She smiled at me, touched your cheek gently. She wanted to give us papers to take home, with ‘exercises’ to use on you at home.
I looked at her, was confused. “How long do we need to do these? Just until the blood bubble is absorbed?”
“What do you mean?” She asked, looking at me as if I was crazy.
“You know, the blood bubble…or maybe it was an air bubble, they weren’t sure which one it was.”
The therapist stood up. “I’m sorry…they didn’t tell you, did they?”
My head started to reel. “Tell me what…?”
She turned to leave, and I grabbed her hand. She looked scared, panicked. Surely she was thinking about her job security, and what can of worms she’d just opened.
“Please.” I still held her hand in mine. I must have looked scary. No bath in days, my hair a frizzy red mess, no make-up, dark circles under my eyes, lack of sleep from being in a chair that didn’t recline next to my baby’s bed in the intensive care unit.
“Please. You have to tell me.” I said again.
“I’m so sorry…” She closed her eyes tightly before opening them again. “She’ll need therapy for a long time.”
My head began to pound. I could feel my heartbeat pulsing in my brain.
“Why does she?” I urged.
“She’s paralyzed. I’m so sorry…they should have told you.”
It was the first time I heard those words, ‘she’s paralyzed.’
At that point, my head felt like a hot air balloon. I let go of her hand, or she pulled away…I don’t remember. But I do know it was the last time I ever saw her. The photocopied slip of white paper with stretches to do at home floated to the floor.
I sat there, holding you in my lap, and cried. No one dared to come near me, everyone knowing that I now knew about you, about your paralysis.
In a few hours, we were meant to be released from the hospital.
I sat there, holding you, crying.
Your dad was at work, was coming to get us when he was done. I wanted to call him, but had no idea how to speak the words that would tell him what I’d just been told. So I just held onto you instead.
When your dad finally showed up, I had to try to explain to him what I’d learned.
He didn’t believe it. Honestly, I was finding it hard to believe. It was supposed to be temporary, this paralysis that had stolen the function of your entire left side. And now…this demon was here to stay.
We sat in silence. Your dad was holding you against his chest, and you were so still. I was sitting on your hospital bed, crying.
Then the bed started to shake, the lights in the PICU shook, and there was a scream from down the hallway.
It was a Southern California Earthquake.
When the motion settled. I laughed at the irony. Our entire world was shaken. Literally.
Then your dad turned to me, careful to not disturb you, and said “Shanna, something is wrong.”
I looked at him and said “You think?”
He said again, “Shanna, really. Something is wrong with her.” His face had gone pale.
I jumped off the bed, and kneeled down towards your tiny face. Your breathing was erratic. You were having a seizure.
I darted to the nurses station, where a single nurse sat. She was on the phone.
“Excuse me. Miss! Miss!”
She excused the party on the line, and said “Yes?”
“My daughter. Something is wrong!”
She sighed deeply, telling the person on the other line that she would have to call them back. She was exasperated that I would bother her. “I’ll be right there ma’am. I’m the only one here right now and can’t leave the nurses station.”
“What? But she’s having a seizure!” I was screaming now.
She spun off the chair, and ran to Sasha’s side.
In what seemed like mere seconds, we were surrounded. Nurses, Doctors, Specialists…our elusive Neurosurgeon. And, Security.
I was yelling, frantic, hysterical.
“What the fuck is going on?” I screamed at anyone and no one in particular.
“Ma’am, I’m gonna need you to calm down.” Said big security guard, putting his hand on my arm with a tight grip.
“Don’t fucking touch me.”
“Ma’am, I’m not going to ask you again.”
“Are you fucking serious? My child is seizing, is paralyzed! How the fuck do you want me to react? What if this was your kid? Fuck off!”
A large woman with orange hair approached me, stepping in between the heated exchange with the security guard.
“Honey, settle down. Take a seat.” She pulled up a chair that I reluctantly sat on the edge of.
“Is she going to die?” I began to cry. Thick tears streamed down my face.
“Look. There is a team of doctors here, they’re doing everything they can.”
I looked up. There were easily 10 doctors in the room, conferring with each other. Arms crossed, silent conversations going on, one was examining Sasha’s eyes with a light.
“They have to save her.” I was having trouble breathing, trying to catch my breath enought to get the words out. “She’s my only one. She’s my only baby. Please!”
At that moment a nurse approached me. She had a clipboard, a paper she needed me to sign.
“We have to readmit her.”
We’d just signed her discharge papers. Were meant to go home today.
I ran the pen sloppily along the paper. I wasn’t even sure that I’d signed in the right place.
The orange-haired woman rubbed my back.
“Can you not touch me, please?” I said, not even bothering to look at her. The feel of compassion from any one of these people sickened me. They’d done this to her, and now they wanted to provide comfort?
I rose and quickly walked over to the neurosurgeon. “What is going on? I want the truth.” I glared at him, a mixture of hatred and need fueling me.
“We’re giving her some medicine to stop the seizure.”
“We will keep her for a few days, for observation.”
“Then what? Why is she having a seizure?”
He paused, staring only at Sasha, never looking at me. “I’m not sure.”
“You’re not sure?” I threw my hands in the air. “Well that’s just great.”
The doctor who’d been standing with him, patted him on the back and left.
“We will do everything we can.”
“She’s my only child. My baby. My whole world is that kid…” Tears again. “Please. Fix this.”
I walked over to Sasha, who was now sleeping on the bed. I got into bed with her. Held her. A nurse started to tell me that I couldn’t be in bed with her, and the neurosurgeon stopped her.
That’s where we remained. Sasha and I. Four days later, we signed discharge papers again. This time there were no earthquakes. No seizures.
The car ride home was silent. Not even the radio provided background noise. Our entire world seemed still and busy at the same time.
Part of me thought that if we could just make it home, to a place that we felt safe…then all would be okay. Maybe Sasha would get better, if we could sleep in our own beds, with our heads on familiar pillows. But, it was that part of me that I was trying to avoid hearing that knew the truth. Sasha would have a long road ahead…and this was just the start of the journey.