Rock'n' The Waiting Game, Rooms with a View, and Resiliency

Of all the issues Elisabeth is facing, one thing very disabling for her is the cyclic vomiting. Today, she is missing her holiday party with her Metzcor family because of  "it." The signs are yawning, gagging, coughing, and she sweats profusely. It happens spontaneously.  It can happen in a car, it can happen near or far.

Her dad knew the minute she was having another episode when he brought coffee in the room for me this morning.  He  could hear  her bringing up whatever she had left in her stomach and went in to begin taking care of her. I stayed in bed sipping  coffee and stared at the dog who was letting me know it was time for his morning walk.

Fortunately, her stomach is empty,  this time, so the clean up is minimal and I  have it down to an art form  layering the pads on her bed and around her neck.  She's sleeping peacefully now with her little "Mona Lisa" smile after cleaning her bed, showering her up, and wrapping her to rock in the chair to comfort her.

As I am holding Elisabeth's  petit  adult body and smelling her fresh shower scent, my eyes wander over to  my windows filled up with sleepy trees, snow, and sunlight filtering though the remaining needles on  my dawn redwoods. It's a lovely view out my window. It has a healing effect on me..

I am part of nature and this creation and I need to have that bond with my creator --  where it starts and when it ends.  And for all my hopes, dreams,  and responsibilities at hand, I draw my strength and resiliency through my windows.

So.

I begin again. I count my blessings and  new beginnings  each day while rocking Elisabeth in our favorite chair as she begins working through her own  creation and recovery.

Second Verse, Same As The First...

Today, Elisabeth and I met at church a women who was 51 years old. She reminded me of Elisabeth, just a little. She at least  could use her spastic fist and elbow to communicate by pointing to a word on her tray.  And she had a caregiver who didn't  look much older than her, but I was  later informed  that she was the mother. It threw me off.  Way off.

When Elisabeth is 51, I will be 87 so I had a hard time convincing myself that she was the mother and she was most likely an aid. But, it certainly got my gears going thinking about Elisabeth's  future.  And what it looks like when she's my age. Will I be around? This reminded me about a story my friend was telling me about her young daughter and the caregiving concerns around  their sibling with special needs.  Needs that require 24/7 care like Elisabeth's.   The story goes like this:

When Sarah was about 8 Bill and I were going out of town for a bit. She asked who would take care of Robby (he is 2 years older with many disabilities) when we are gone. I told her grandparents. She said “no I mean when you are gone”. I said I hoped that maybe her and her sister could take turns. Days later she said she wasn’t sure how that would work since she wanted to work at the zoo and Robby would open the doors and let all the animals out. I laughed and cried.

It really puts Elisabeth's  future into an interesting perspective over how much planning is still required. Most families have the same back up plan. In case.  A sibling (or two) will take turns.  Not much of a plan, but we're lucky we can get through the day as it is.

We've talked about a place like St. Joseph's where she would  receive the quality care for which they are known. Marjorie P. Lee is another option because Graeter's ice cream is nearby and everyone loves to visit Hyde Park. So, most likely her family and friends would drop by to take her out.

It's always  a mystery what her life will look like because everything can change so quickly.  No matter what we plan can all change. This has been the trend. Our experience.  Care facilities for adults like Elisabeth lose funding and they shut down or change ownership.   New places start from scratch and eventually, they too, shut down because they are not making a profit. Or, they are forced to make a profit sacrificing the quality care of the residents and hiring employees at low wages.

Elisabeth's new friend and her mother have an interesting  story about their journey together, I'm sure.  I learned what Elisabeth and our new friend had in common -- Redwood Therapy in Fort Mitchell.  Although Elisabeth's new friend attended there as an adult when Elisabeth was just beginning in the infant care area.

But what still threw me off was realizing how old I'll be when Elisabeth is her age. A caregiving reality sank in for me after meeting her  and I am not sure if I'm ready to face it.  Am I even worthy to be her caregiver with all the planning I still  have to continue doing?

It's a circle game. Like Joni's song, we're on a carousel  through time. We can't look back, we can only look behind from where we came and go 'round and 'round and 'round in the circle game.