I Never Knew

I never fully knew just how precious she is.

I never fully grasped at how fragile we all are.

I never really knew how deeply intelligent she is, despite the brain damage she sustained as a child.

I never fully understood the meaning of Heart Intelligence Quota until now.

I never imagined the very depth of compassion I am capable of feeling.

I never fully embraced the most gifted artist among my sisters until now.

I never imagined I would be so emotionally supported, understood, and loved by my community of friends and family.

And so it is.

And yes, we will be making cards from Toni’s art. Will let you know when that happens (further down the line).

Today I moved to a different apartment.  Today I said goodbye to my home of three weeks in a rough area of Chicago. Yes, today I said goodbye to a home so incredibly comfortable (best bed, top of the line linens and towels, best outfitted kitchen made for a chef,  best shower, best high speed internet, kind neighbors), but a home that frightened me.

I took the apartment in this neighborhood because I wanted to be near the hospital. Not a great choice. Every single Uber driver warned me to lock my door, to not go out at night, to wait for my Uber ride to arrive before stepping outside my door, even in daylight. It was nerve wracking to live with these admonishments. Me, the best sleeper in the universe, slept with one eye open, afraid that someone might crawl in through one of the two kitchen windows that had no bars. Every apartment noise rattled my nerves.

Even my neighbors had my back! I befriended them the day twelve inches of snow dumped on the city of Chicago. I think our street was the only street not snow plowed by the city. My landlord sent out a crew to shovel my sidewalk. When I saw all my neighbors digging their cars out of the snow, I grabbed the shovel near my door and started helping them.  “You from Seattle?  Bet you never seen snow like this!” or “How come you know how to use a shovel?” Laughter! Well, I did grow up in Indiana, after all. We made fast friends.  I had the most frightening bank experience of my life right in the Garfield neighborhood (another story to be told at another time).  Even the local Walgreens had an armed guard inside the store. My little prayer went like this, “Please God, don’t let me in die in Walgreens while buying art supplies for Toni.”

My apartment was one mile from the hospital. Silly me. I imagined I could walk to the hospital in the daylight and Uber back on the return home as it started to get dark out.  I quickly learned that it was not a good idea to walk anywhere at any time of the day.

And so already, I feel super safe here at my new home for the next month. My new apartment is in Oak Park, Illinois. Too bad everything is closed due to Pandemic Times. I’d love to do an architectural tour, see the Frank Lloyd Wright House just down the street from my apartment, visit some museums, but everything is closed!

But I am busy enough with my full time work teaching on line and my other job of offering Compassionate Care to Toni. Will save the cultural excursions for another time.

Toni weaned with Pressure Support at #10 setting today for 4 hours! Yay.  After she can wean with Pressure Support of #10 for 12 consecutive hours (that is our present goal), she then will have a new goal to wean with Pressure Support of #8  for 12 consecutive hours. Once she can do 12 hours at the setting of #8, we can move back to the trache collar, which allows breathing without any pressure support and without ventilator for short periods of time that eventually progress in duration until Toni can breathe on her own for 72 consecutive hours.  At that point, she can get off life support.

She still has a long journey ahead of her.

It is still a mystery to me why she was able to sustain the trache collar for 3 hours (no ventilator) on the very first day at RML Specialty Hospital, but since then has not been able to breathe on her own without the help of  Pressure Support.  But we will get there again. Toni works so hard. She perspires when she is vent weaning. Sometimes she cries because it is so hard.

We will do it. Together.

Throughout this blog post, you will see photos from my time these past three weeks in Chicago. Now that I am in my new neighborhood, I will be able to walk again and can’t wait to take photos from my walks!

I never knew how beautiful Chicago could be in the winter.