“Wait and See” (Part 1)

“Fashion is the armor to survive the reality of everyday life.” – Bill Cunningham

April 11, 2025

I slice coat hanger after coat hanger across the metal rod in my closet and reject one outfit after another. I slide away blouses, tanks, and tees. A black denim jumper makes it to the air — hanging at my eye level, but no. I shove it back on the rod.

Nora has a medical procedure this morning and needs to go to the hospital. I set my jaw. Grind my back teeth and wrestle with my coat hangers.

I snap a yellow blouse to my chest, fluffing out its balloon sleeves. No. Hard no. I don’t bother to return it to the rod but discard it into the donate box I keep at the bottom of my closet. I take a huge, shaking breath and consider diving into a full Spring closet clean-out, but I know I don’t have time.

Nora has a medical procedure this morning and needs to go the hospital.

My anxiety began so many sleeps ago, but built to what has become all-consuming after a pre-op nurse called to discuss the check-in time and pre-procedure protocol. The call should have been straightforward, but when I asked if a parent would be allowed to be with Nora while she was going under and coming out of anesthesia, the nurse casually, mechanically, explained, “You’ll have to wait and see. It will be up to the anesthesiologist and the particular team on the day of the procedure.” 

I hard-toss another blouse into the donate box before glancing at the time.

Nora has a medical procedure. She must be at the hospital surgical unit. In one hour.

Suddenly focused, I begin to push and pull clothing in varying directions – harder even than before, bullying almost. But I am not seeing a thing. Instead, I’m replaying the last conversation I had with Nora about her upcoming procedure. After I hung up with the pre-op nurse, I briefly discussed the medical procedure with Nora. I grabbed her YES, NO, MAYBE picture cards that are always within an arm’s length of her, and in every common room of the house, and I told her what to expect for her procedure. I said vaguely, “We’ll have to wait and see” for some parts. Then, using eye gaze (AAC),and the YES, NO, MAYBE cards, I asked if she wanted Mom or Dad to be with her as a doctor gave her medicine to fall asleep for the procedure. She said quickly and definitively, “YES.” I thought about preparing her for the possibility of a parent not being with her if the particular anesthesiologist were to veto this request, but I stopped myself, remembering what the nurse so blithely said, “We need to wait and see.”

The words “wait and see” define so much of Nora’s health and – I’m coming to realize — her interactions with the world of medical care.

Slice. Coat hanger. Slice. Slice. Slice across the rod they go. I’m angry.

What Nora wants will be up to the particular anesthesiologist and the particular team on the particular day at that particular time.

Nora uses AAC (Augmentative Alternative Communication) through eye-gaze and her YES, NO, and MAYBE cards in her day-to-day life to communicate about her physical needs and symptoms, express her wants and preferences, and connect with her friends, teachers, and family. She also uses an eye-gaze device at home to communicate her needs, answer questions, and connect with others. She also relies on physical hand/ arm signs for YES and NO. While Nora’s fluctuating physical health can impact her communication, if she is not able to respond to the people around her with YES, NO, MAYBE communication, there is significant cause for concern and we would need to seek medical advice or evaluation.

In today’s medical setting, Surgical Services, a space where Nora may not be emotionally or physically feeling herself, she needs and deserves strong communication partners— people before and after a procedure who can quickly assess for and communicate with her about pain or discomfort and discuss nervousness and other emotions she may experience. When going into any medical setting, she deserves to feel seen, safe, and secure in her voice and mode of communication. And, if that means her parents are present, so be it.

I glance at the clock— I’m running out of time. I pull a short, white, eyelet sun dress from my closet and hold it up to my shoulders in the mirror — a mirror covered in my own handwriting – I sometimes write notes on it with an Expo marker. My eyes zing in on my shorthand notes from my good friend Dar’s recent video message, the one she sent me after I frantically messaged her about today’s procedure.

Nora feeling safe matters

Honoring Nora’s wishes matters

It may not feel like it, but you have the power

The ball is in your court

Breathe

Find a way

I take a deep breath and another, and suddenly, intuitively, I know what I’m going to wear. I slip into the white dress and reach for a pair of hearty, leather half-calf Frye boots I’ve had since college. I turn back to the mirror and stand on my toes to assess my hair over my mirror notes — it’s voluminous — crimped waves from last night’s French braids. My hair, paired with a white, mini dress and leather boots look like they belong in the crowd at a music festival. And, I’m into it.

I pull up my boots and take another deep breath. Today, I am a free spirit, I sing. I have the power.

I am the power.

If all else fails – if this particular team doesn’t like what Nora needs — we have the power, and the gumption, to walk away from this procedure and this particular team and try again another day.

Nora deserves certainty and responsiveness to her needs.

“I suppose we’ll just have to wait and see.”

Yes. Yes, we will. I’m dressed for it and I am the power.