The times between Gracie’s hospital stays are getting longer and longer. Gone are the days when she spent more time on antibiotics than off. She is getting stronger. Before tonight, the last time she was hospitalized was last September—over seven months ago.

That’s not to say she has fewer wounds, though. Lately she has become an expert at removing her own fingernails; say the word and she’ll rip one right off. Sorry to those of you who don’t live with a person who doesn’t feel pain. I imagine hearing what Gracie does to herself is a bit like watching Black Swan—that scene where Natalie Portman’s character rips her hangnail sends shivers down my spine.

We started today’s healthcare journey last night. While doing our nightly wound care ritual, I noticed one of Gracie’s wounds was looking worse. The purplish area at the tip had spread, the bone was prominent, and there was swelling on the finger. It wasn’t so much worse that she had to be rushed to the ER, but enough to make an appointment with her pediatrician as soon as practical.

Today, I picked her up from school for her doctor’s appointment. Gracie was acting strange. She was complaining that her legs and arms ached, she didn’t want to walk, she was warm to the touch. With a sinking feeling in my stomach, I took her to the pediatrician, and sure enough her temp was 100.2. We were going to the hospital.

The ER was very busy when we got there. Usually the waiting room is a ghost town; tonight there were two other children waiting to be seen. We were placed in the “last resort room,” the room with no TV and no entertainment and where everything can be locked down if someone is having a psychiatric emergency. We have been to this ER enough to know that if we are in the lockdown room, that means every other room is full.

You never want to be the person seen first in a busy ER. That dubious honor is reserved for people having life-threatening emergencies. Having to wait in a busy ER means you’re not dying. It wasn’t even a long wait for us, but longer than normal. They were jamming. I could hear the oxygen monitors binging in the nurses’ station. It’s a dreadful sound, one I’ve awakened to far too many times, the sound of a faint beep that gets louder and higher pitched as the pulse oxygen level sinks or if it stays below a preset level for too long. Even hearing the sound on TV evokes a visceral reaction in me.

We waited and waited while tests were ordered and specialists were called. Dinnertime came and went; luckily I had the foresight to bring snacks, which Gracie devoured. Eventually the doctor came back and told us that she had spoken to all the specialists and reviewed all the test results, and they were just waiting on a room upstairs. She hustled back out the door, leaving us to wait again.

Gracie was remarkably patient for a 5-year-old. She played with her dolls, she watched her iPad, she snuggled me, and she mostly was fine. She asked a few times when we would get to go upstairs, but never threw a temper tantrum or otherwise misbehaved. Her natural zen-ness is truly amazing.

Finally, the transport person came to take us upstairs. On our way down the lonely hospital hallways, glistening rocks outside a window caught my eye. A sudden and overwhelming longing to smell the outdoor air, feel the coolness, watch the snow, flooded through my soul with the heart-wrenchingly agonizing realization that we wouldn’t be out there for days. Shoving the thought aside, I strode alongside my beautiful girl’s bed, seeing her golden hair curl around her sweet face as we walked through the empty halls.

The finger wound that brought us here did not look that bad tonight. Although there is a dark purple ring of gangrene around the missing nail, the finger itself is not too red, not too hot, not too swollen. If she had not had a fever we would be home tonight—those words bring back the pang of sadness, the agonizing longing to forget this hospital life.

Sometimes I marvel at this whole world I never knew before. This hospital room, so intimately familiar, would have been completely foreign to me without Grace. We have stayed in this same room three times now. We know the nurses, the doctors, the aides. I know where the linens are, which snack station has the coffee and which one has the crackers, which hallway leads to the NICU and which one leads to the oncology ward, where the playrooms are. It is familiar, and yet so far from home.

Gracie loves the hospital. She loves the bed that moves, ordering her favorite foods, taking a bath in the tub with the wide ledge for sitting, playing in the cupboards and drawers, talking on the phone after I unplug it from the wall, and more. What she loves most of all is getting mom time. All mom, all the time. We snuggle, we play, we talk; it’s joyous. It’s Gracie’s favorite part, and probably mine too, but I can’t enjoy it without remembering the agonizing separation from my son, my husband, and even my dog and cat. Thankfully, this time, Jackson is spending the weekend at a friend’s grandparents’ cabin in the mountains. He will have two days of blissful ignorance. With any luck, we will be out by the time he gets home, and he’ll never know the stress he missed.

The hospital life is hard on Jackson. He misses me and Grace, he’s worried about his sister, and it’s stressful for him to have to change his routines. Truthfully, it’s hard on all of us. Even Gracie, although she certainly enjoys it more than the rest of us. It’s stressful, worrisome, draining to live this hospital life. Even when it’s familiar and even when we know it won’t be a long stay, it sucks.

It sucks.