Reflections of grief from people who never met Ayrie

 Many of you know that shortly after Ayrie’s death I asked people to write about Ayrie, his death, and its impact.  I had big plans for what I would do with the stories at the time.  And I still have big plans…but my time line has changed.

Over the last year these stories were just too painful to read.  Beautiful, but painful.  I printed all of the stories last year and put them in a box, not to be looked at again until a week ago.  And as tears rolled down my cheeks I had to put the stories away before long, but not before writing this piece, and not before realizing in my core just how lucky I am to have these very personal and authentic words about me, my son, our family and the way we’ve shaped people’s lives.

Although his life Ayrie’s life was short, his spirit was large and the impact of his life and death appears to be far reaching.  Today I focused on the first (of six) propmts from ten people who had ever met Ayrie.  They came to know Ayrie through photos and stories that I shared on facebook or our family blog and seemed to have developed a connection to him that was deep and meaningful.  I was surprised that all ten of these people, who had never met Ayrie, were willing to take the time to share their experience of his death with me.

People described feeling connected to Ayrie and his story for two reasons.  Either they have young children and were moved by the idea of raising and losing a child.  One person wrote,

“Perhaps it’s because I now have a son of my own. Nemo is turning 7 months old in a few days, and my brain can’t fathom how a young boy could have an illness that takes him away in a split second. I can’t imagine that Nora’s dear Ayrie, an otherwise, healthy, bright, fun, loving boy is no longer here. I just can’t do it.”

 

Others felt connected to Ayrie because they too had a chronic illness.  One person shared,

“In finding out Ayrie was fighting a disease I was saddened, but felt connected instantly.  Having been the child with the congenital defect I felt a certain kinship.  Not because it was the same disease or defect, but because I know how it is to be the oldest, be the sickest, knowing people were worried about you, but not knowing any different way of living either.”

And even though people did not know Ayrie well, their connection was deep.  One person wrote,

“He did not know my name.  He did not know my face.  I was not a recognizable figure in his four years of life.  Still, I feel like I was there.  Like I knew him, like he affected my life.  Between the blog, the pictures, the posts and the few emails back and forth he was on my mind.  I would think about him and wonder how he was doing and wonder if he was going to need another surgery soon.  I remember that I literally cheered when I read a post from Nora that he had experienced the longest time between surgeries ever.”

The connections ran so deep that without knowing it we even became a part of people’s families.  One person wrote,

“My kids were sobbing over their snack.   My son said, “Now 2 people from us are dead.”   (In May, my husband’s grandmother died.)   I cried because he had grouped Ayrie as belonging to “us” even though we had never met him and he doesn’t remember Nora.  Ayrie was one of “us” whether he felt/knew it or not.”

 

These ten people’s responses to hearing about his death had many similarities.  Every person who shared the stories below found out about Ayrie’s death through Facebook.  People described crying, confusion, disbelief and a search for meaning.  One person wrote,

“At first it sounded like there had been a mishap in the OR.  I just thought that maybe his voice was gone, which would have been horrible, the loss of that sweet voice forever”, but then I realized that these friends were not offering light condolences.  These were heavy, heartfelt, sentiments.  But they all felt hollow, like someone was playing a horrible, heartless prank and that Ayrie was not really gone.”

Physical manifestations of grief were commonly recited such as, “Even though I didn’t know Ayrie, reading about Ayrie’s death was like a punch in the gut.”  People also expressed felling helplessness or powerless.

“I felt powerless.  Even in eliciting friends to help Nora and her immediate family, I felt like I couldn’t do anything useful.  No matter what I could do in the aftermath, there was no way that I could take away the pain and emptiness for this woman that I’ve known since we were a little older than Ayrie.”

The described the need they felt to share with me or to give to me in some way.  They seemed to feel that writing in response to these prompts was a way to share comfort, memories, thoughts and prayers.   And they were right!

There were three surprises for me in these ten stories.

The first was how often people mentioned turning to the internet to learn more about Ayrie’s medical condition.  I mean, people spent time thinking about us, researching more about our life, and all the while I had no idea that they cared so much. Honestly, I had no idea.  I thought we lived in a bubble, in a very small world that often seemed to be getting smaller. One person wrote, “I found out that he was diagnosed with RRP. Having never heard of this before I googled it and was shocked at this poor boy’s diagnosis.”

The second was how often people remarked on my qualities as a person or as a mother.  I didn’t solicit any of these descriptions in the prompts and yet people shared them freely.  It even seems that something about how they perceived me made them feel more connected to Ayrie.  For example,

“I remember her being a very positive, high energy girl from high school that always seemed to have a smile on her face. Her current Facebook photo reminded me of that happy girl, but now she also had two beautiful boys beside her.”

A person who knew of us through a rare disease listserv wrote,

“Nora wrote in often to the site, seeking support and offering support to others.  Most apparent from her communications were her overwelming love and concern for her son’s well being and desire, (like all of us in our community), for better treatments and a cure for this disease.”

And another person wrote,

“I’m in awe of what Nora is going through, by her choice to share her feelings and circumstances in a way that allows people like me who never knew Ayrie personally, to love him and to feel his love and joy.”

As a person who has had chronic low self-esteem and who feels like I failed my child, seeing myself reflected back to me in this way was startling.

The thirdsurprise was how people wrote about God, religion, and/or spirituality even though it wasn’t specifically addressed in the prompts.  One person wrote,

“I felt drained, sick, numb, and ill. When he came home from work, we hugged and cried and talked about God.”

Another wrote,

“As a believer, I take comfort in knowing God’s divine plan and mercy He has offered to all of us.  I trust in that with all my heart.  I offered my condolences to Nora, through the listserve, and prayed for her and her family.”

I wrote earlier that when people learned about Ayrie’s death there was also a mention of needing to ask ‘why’ or to find a reason that Ayrie died.  Many of these people returned later in their stories to reflections on their faith.

Even though these stories were from people across the country who do not know each other, who did not know Ayrie, and in some cases did not know me, there was remarkable consistency in what they chose to share.  Not only what they shared in response to the prompts, but also in what they chose to share that was ‘off prompt.”   As an avid facebook user and blog writer, even I was surprised to see how real and how deeply relationships can develop on-line.

These ten people who had never met Ayrie seemed to have developed a true sense of who Ayrie was without ever meeting him in person.  I would offer these writings as a challenge to people who say that on-line relationships are of an inferior status to in-person relationships.  Surely they are different, but they are also very real and very important to people’s lives and sense of self.