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This morning, before my eyes were barely open I sat in bed and began imagining a morning from days past...last summer...last spring... just a few months ago.
I told Jeff to close his eyes and picture Ryan barging into our room early morning... requesting a bath with bubbles, after letting out a devilish giggle and giving a full bear hug (and we giggled in response to feeling the intensity of those hugs and the foreshadow of his giggle as to the hint of Ryan’s mood for the day). Ryan would demand to watch the cartoon Home as he climbed into the tub.
I continued to visualize the memory with Jeff as he began his day getting washed up in the morning... Ryan staring at him and signing “good-morning” or “best friend” or a simple “I love you”. And Jeff laughed as he filled in the next memory of Ryan firmly signing “move” again and again as Jeff tried to quickly shave and dodge Ryan’s line of vision for the tv. I continued by recalling how I would bring him clothes for the day and tell him to come to the kitchen when the show was over.
But what would unfold next was usually the real indicator for the day. Would Ryan come down refreshed, all dressed and ready? Or would he call down to me, with his beautiful sound of “mama” ... only for me to find him at the top of the steps, pillow in hand and pjs back on?
Would it be an “A” or a “B” Day?
As Jeff and I continued to stroll through our fantasy journey this morning, I pictured going to Ryan, hands on my hips and asking a question I already knew the answer to: “What happened? Where are your clothes?” On days like this, Ryan would sign “PJ” day - as much as a declaration and request at once, followed with a sign to “stay home”. He would then hand me his pillow and gingerly descend the steps.
In our “fantasy” memory, today was a “B day”.
Jeff and I picked up speed and continued to finish each other’s sentences as we “watched” the scene from our minds unfold...
Ryan would walk into the kitchen, grab 8-10 of his special cups, fill them with a few sips of water and line them up on the counter. Then, as SpongeBob and the Minions and Buzz Lightyear stared at us, Ryan would sit thoughtfully and decide which to drink first... which to hand to us to “toast” with him and which he would eventually pour into the dogs’ bowls- usually from 4 feet off the ground and inevitably as much would land around the bowl as in it.
I would make some calls- the bus company then school. Jeff would help Ryan start a vest treatment or get settled on his special spot on the couch....
And then we both got distracted in our own thoughts...losing the focus of that scene.
Happy for the memory. Happy to feel the power of recalling.
But saddened by the understanding that these are just memories now... will only ever be just memories.
And it hit me.
On days Ryan felt great... he did great. “A Days”. School was great. Walking was ok. Easy.
On other days when he didn’t feel well... we looked at them as “B Days”. Maybe walking was harder. Maybe he had a headache. Maybe he fatigued by the end of the day. Not as easy.
But what I realized as I thought back to Ryan’s “PJ days” and his need for “A” and “B” days was that Ryan, all of us at home, the amazing staff at Phoenix Center just accepted that he had harder and easier days...
None of us attached a whole lot of dialogue to it... or judgement about it... it just was what it was.
And as time continues to pass- at times at light speed, I have come to realize that maybe some days are “B” days for me too...days when my heart aches, when I just want PJs (and maybe a glass of wine or two) or yoga or solitude...
And just like with Ryan, maybe I need to push to the limits but accept the “Bs”... the “perfectly imperfect” days... moments... nights...
And not overanalyze.
And not criticize myself.
And not wonder why this morning was easy but yesterday evening was not.
The same acceptance he gave himself...
And as I sit and reflect and remember and laugh and cry, I can feel Ryan in my heart-filling me a little...