Gregory Maire: Studies in Color and Form: Part 2 The Failure

Many of our wonderful family of friends were able to attend the 6:00 Opening Reception for Gregory's Art Show. The invitation was low key and I understood that the timing was not easy for a lot of people.

That said, thank you for being there or R.S.V.P.ing your not being able to join us: Pat, Isaac, Cheryl, Emily, Kathleen, Vic, Linda, George, Corinne, Nancy, Susan, Jan, Jake, Roger, Marc, Alan, Nancy, Dan, David, Danny. Hope I didn't forget anyone.

The day event at 2:00 was quite successful as you read in the previous post. Gregory was quite exhausted by 3:00 or 3:30 and went up to his room with Manny to take a nap and then have dinner from 4:30 until 5:30.

In anticipation for the 6:00 reception, Manny made sure that Gregory got changed and after he was changed he peed and pooped again and had to be changed again. This is not an easy task for Gregory or those involved.

It takes putting a sling around and under him, lifting him out of his wheel chair in this dinosaur type machine, swinging him over to the bed, lowering him onto the bed, removing the sling, rolling him from side to side to take away the soiled clothing, cleaning him up, and putting on new clothing. 

Gregory is unable to assist so when the aides move him around, no matter how gently, Gregory is uncomfortable, possible in a little pain, and while I am not sure if he is embarrassed anymore at not being able to toilet himself, perhaps this figures into the experience. 

Not sure at what point he "messed again" but having to go through even part of the ordeal again was not easy on Gregory or the aides.

By the time Gregory got down to the lobby all of his guests had arrived, hung up their coats, and were looking at the artwork. Gregory being exhausted, and possibly overwhelmed, was "not present." He sat nobly in his wheel chair but his eyes were closed. 

I tried "waking him up" if he was sleeping but I think that he just didn't want to open his eyes. I call this "My Seven Year Old Stubborn Little Boy Syndrome." 

Most likely he was so overwhelmed from the events of the first reception, then eating dinner and having to go through two "changes," that this was his way of just not wanting any more stimulation.

A number of people came up to say hello, to pet him, to try to get a reaction ... but none took place. I tried to get him to open his eyes several time ... but no go.

Next, as I was hugging him, I lost it. I stifled a loud sob, but not stifled soon enough for the group of friends not to hear. I cried into Gregory's neck/shoulder until I could gain my composure, took deep breath, and came up for air. I understand my eyes were not the only wet ones in the crowd.

At this point Gregory did open his eyes. I leaned in towards him and in my usual slow and carefully pronounced way I said, "I love you very much." He looked at me and replied, "I know."

Next I continued, "And you make me very very happy" to which he replied, "I know."

Then he looked me directly in my eyes and said loudly and clearly, "Thank You!" He closed his eyes and disappeared for the rest of the reception.

Enough said? I learned many lessons and had several insights. So calling the reception a "failure" is not really true.

First, I had hoped so much that he would be present for those people we value most in the world, our friends. Next I realized that I was disappointed in his behavior (erroneous) and embarrassed (erroneous) in front of our friends.

I also realized that this reception was another one of my attempts at making it seem, for Gregory and me, like our life is "normal" when in reality it is NOT! My expectations for Gregory had inadvertently caused him to become uncomfortable, not feel safe, and to withdraw.

I am not sorry about the experience because it is always a risk when trying to provide Gregory with "joy" and "meaning," I would not want to settle for less if I did not have to, and I was able to learn from it.

I need to be more aware of how much he will be able to take and when enough stimulation is enough. I need to keep in mind his comfort zone, not mine. 

While I felt disappointment and embarrassment, those were emotions triggered by old learning and no longer really a part of me, Gregory and my situation, and definitely not true triggers or true emotions.

I know that our family of friends were there to support both Gregory and me and I appreciate that. I know that Gregory was aware of the love and support that was in the room for him.

In the end, the most important part was Gregory letting me know he knows I love him, knows he makes me happy, and thanked me for letting him know that. That is all that really matters (and the new lessons hopefully not to be repeated next time.)