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Part 1 — The ICU
Lily had been in the pediatric ICU for eleven days.
She was four years old.
She had a stuffed rabbit named Captain that had been in the bed with her since the ambulance and that the nurses had learned was not negotiable.
I had been sleeping in the family room down the hall on a cot that was too short and waking at every change of shift to make sure I knew what was happening.
Marcus had visited twice.
Both times he had stood at the foot of the bed and looked at the monitors and said things like this is a lot and how long do they think this will go.
On the eleventh day he sat beside me in the family waiting room and said the bills were mounting and the prognosis wasn’t certain and maybe we needed to have a conversation about quality of life.
He said it with the specific careful phrasing of someone who has rehearsed.
I looked at him.
I thought about the last eleven days.
I thought about the last several months before that — the specific accumulation of moments that I had been explaining away.
His impatience with Lily’s needs.
The comments about how much her care cost.
The suggestion once, when she was sick with something minor, that children were more resilient than parents gave them credit for and we were probably overreacting.
He was looking at my four-year-old daughter in an ICU bed and suggesting we consider not treating her.
I picked up Captain from the chair where I had set him down.
I walked back to Lily’s room.
I told the charge nurse that I would be staying tonight and that my husband would not be.
Then I went to the corridor and called Dana.
Part 2 — Patricia
Dana answered immediately.
She said: what do you need?
I described what Marcus had said.
She was quiet for a moment.
She said: where are you right now?
I said: hospital corridor.
She said: is Lily stable?
I said: the doctors are cautiously optimistic. She is being treated and responding.
She said: okay. Call Patricia. Right now. I’m driving to the hospital.
Patricia Webb answered on the second ring.
I told her what Marcus had said.
She said: Sarah. Does your husband have medical power of attorney?
I said: jointly. We both do.
She said: that needs to change tonight. Given what he said and the current medical situation, I can file an emergency motion for sole medical decision-making authority for you as Lily’s primary caregiver and the parent who has been present throughout her treatment.
She said: the standard for this in emergency circumstances is not high when one parent is demonstrably not acting in the child’s best interest.
She said: I’m going to call a colleague who handles emergency family court filings. We can have this processed tonight.
She said: Sarah. You are protecting your daughter. This is exactly what you should be doing.
She said: do you have the treating physicians’ names?
I gave them to her.
She said: I’ll need a brief statement from the attending about Lily’s prognosis and treatment plan. Can you ask them to be available?
I said: yes.
She said: go be with your daughter. I’ll handle the rest.
Part 3 — 6AM
Dana arrived at ten-thirty.
She brought food I had not asked for and a blanket from home and the specific quality of someone who has decided that being useful is more important than asking what to do.
She sat in the family room while I sat with Lily.
Lily slept.
Her monitors beeped in the steady rhythm I had learned to read over eleven days.
Patricia called at 2AM.
She said: the attending physician provided a statement characterizing Lily’s prognosis as genuinely uncertain but with meaningful possibility of recovery given continued treatment. She said abandoning treatment at this stage would be premature and not in the child’s medical interest.
She said: the emergency filing went through. Judge Harmon signed the order at 1:47AM.
She said: you have sole medical decision-making authority effective immediately. Marcus has been notified through his registered address.
She said: Sarah. He cannot make medical decisions for Lily or override your treatment choices.
She said: get some sleep if you can.
I sat with that for a moment.
She said: you did the right thing.
I said: she’s four years old.
She said: yes.
She said: no one is considering anything other than her recovery. That is now protected.
I said: thank you.
She said: sleep if you can.
I did not sleep.
But I sat beside Lily with Captain in my lap and I felt something shift.
Marcus arrived at 8AM.
The charge nurse informed him that visiting authorizations had changed and that non-immediate-authorized individuals could see Lily only at scheduled times with my prior approval.
He called me four times before nine.
I did not answer.
Part 4 — Dr. Nakamura
Lily’s attending physician was Dr. Nakamura.
She came to speak with me privately on day fourteen.
She said: I want to update you on Lily’s progress.
She said: her response to treatment over the past three days has been more positive than the first week suggested.
She said: I want to be careful with language here. Medicine is not certainty. But I am more optimistic today than I was ten days ago.
She said: Sarah. I provided a statement for your attorney’s filing.
I said: yes. Thank you.
She said: I want you to know I provided it because it was medically accurate. Lily is receiving appropriate treatment and it is working. Discontinuing it would not have been a medical recommendation I could support.
She said: whatever is happening in your family, my job is Lily.
I said: that’s my job too.
She said: yes. I know.
She said: she talks about Captain.
I said: Captain goes everywhere.
She said: she told me Captain is a very brave rabbit.
I said: that’s true. He’s been through a lot.
She said: so has she. So have you.
She said: keep doing what you’re doing.
She said: I’ll be back this afternoon with updated labs.
Part 5 — Day Twenty-One
Lily came home on day twenty-one.
Not recovered completely.
Children’s bodies take time.
But stable enough to continue treatment outpatient.
She walked out of the hospital holding Captain with one arm and my hand with the other.
She was small and tired and she wanted to know if we could stop for ice cream on the way home.
We stopped for ice cream.
Dana met us at the apartment I had moved to while Lily was in the hospital.
Not our house.
The apartment was smaller and had a bedroom with windows that faced south and got good afternoon light.
Lily said: Mommy, our new house has more sun.
I said: yes. I thought you’d like that.
She said: Captain likes sun.
I said: I know.
She went to her new bedroom and positioned Captain in the sunlight on the windowsill and declared him properly situated.
Then she asked for more ice cream.
Dana said: she’s going to be fine.
I said: yes.
She said: and Marcus.
I said: Patricia is handling it.
She said: what does he want?
I said: he wants to know why I overreacted.
Dana said nothing for a moment.
I said: that’s the word he used. Overreacted.
She said: to protecting your daughter.
I said: yes.
She said: Sarah.
I said: I know.
She said: Lily is home with ice cream and Captain is in the sun.
I said: yes.
She said: that’s what you protected.
I said: yes. That’s exactly what I protected.
Lily called from her room to report that Captain had found the best possible sun position and was very comfortable.
I called back that I was glad to hear it.
Dana made tea.
I sat in the apartment with the south-facing windows.
Some pediatric ICU nurses learn that certain stuffed animals are not negotiable.
Some attorneys file emergency motions at 1AM and get judges to sign them at 1:47.
Some physicians write statements because they are medically accurate and that is their job.
And some four-year-olds come home and immediately find the best sun position for their rabbit.
Captain is brave.
So is she.
So are you.
Call Patricia.
She answers on the second ring.
