Day of Remembrance – Saturday

Saturday morning breakfast was at the convention center. The day’s schedule immediately felt a little wonky for me.  Angela had signed us up for the “shadow box” activity.  What about Dad’s group?  I was anxious to get back in my circle of Dad’s who were trying to figure out why we are here.  

Angela was instantly frustrated with me because of my lack of motivation to make a diorama with summer’s picture and a pile of brick-a-brack.  I picked at the pile of bits that probably emptied an aisle at Hobby Lobby.  I get it.  Pull out little reminders of Summer and glue them up on the canvas as a fun way to remind you of your child.  My personal feelings about how Summer would feel with all this plastic and my desire to go back to a real session with people talking seemed more productive.  I was rather terrible and she probably still hates me for that hour.  

I wandered out of the meeting room to talk to the Nates who were also avoiding the shadow boxes.  I then opted to walk the memory boards since I still had not fully done this to my satisfaction.  Dad joined me as we attempted to read every word on every board.  

It was soooooo hard.  No matter how well or poorly done (I have more on that later)…  They all grabbed your heart.  Every one of these smiling faces in the pictures was now gone.  Behind every board was a family in pain.  The closer you looked at some of the boards, the more I recognized Summer’s journey in these other kids.  So many brave faces getting treatment.  So many “I feel like shit, why are you taking my picture?” moments were on display for all to see.  I had heard common ground stories in my group the day before, but I was now seeing it in the pictures.  

Eventually, your chest fills up.  Short breaths start to feel like you’re underwater.  Your body puffs up as you restrain yourself from a groan that is dying to be released.  I was aching with anxiety and I stayed frozen at a couple of boards to slow down the sensory overload.  Breathe deep.  Look down.  Try to regain your heart rate.  The maze of boards feels like an attempt self inflict an anxiety attack.  I wiped away the gravity-defying tears bulging from my eyes..  There is no shame here.  Rain some tears wherever you want. 

You cannot truly read all the stories and look at al the pictures without feeling overwhelmed.  So many dreams.  So many families who did everything asked of them to win this fight.   Now, they are part of the story.    

At one point, I looked down to see a Mom who was kneeling and crying as she was fixing her board.  I should have asked her if she needed help.  I wished Angela or my Mom was around to offer assistance.  I walked away wondering what bit of compassion training I was missing for not having the ability to talk to her.  The confused helping the distraught.  Sorry for the overdramatization, but I wonder why human-to-human interaction is so scary when we are all equally vulnerable. 

While browsing, I found two other kids on the boards who had photos taken at Pekin High School.  That was crazy to me.  Tori and Omar.  Both of these kids were represented by memory boards, but I could not find the parents next ot the boards.  Ever!  I looked several times.  (Later, I saw Tori’s mom stand up during the closing ceremony, and I made a mental note about her black hat, but I never saw her again.)

It was crazy, but I ran into the man who had been sitting next to me at the Dad’s group the day before.  His son, Oscar had a board three spaces down from Summer.  I put my hand out and  again asked him if we had no hard feelings.  We shook and I was introduced to his wife.  

“This is the guy who called you out in your group???”.  She had that look and tone like, “I’m going to make him pay!”.  It didn’t go that way.  Instead, we turned toward the board and started talking about Oscar.  I realized very quickly that the boards that I had perceived as “bad” were pretty darn impressive when you figure that people flew from across the country to be here.  We had the luxury of driving to Memphis with a boxload of materials.  Others are not so fortunate.  

Angela and I started talking to Oscar’s folks.  Lots of talking.  I learned that they flew in and that this might be their last chance to come because St Jude does not fund these trips after your child has been gone for 5 years.  This couple really wanted to make this trip at least once.  We kept talking back to the hotel and even made plans to meet up in the lobby later. 

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My second session on Saturday was with a writing workshop.  Colin Campbell has written a book on grief and was one of the featured sessions for the weekend.  My parents had done his group earlier or the day before.  They loved it.  So much so that they sat with him at lunch on Saturday.  I met him over lunch and Mom and Dad told him about the blog.  The blog and trauma dumping.  This guy gets it.  He was pretty genuine and I liked having a hint of who he was before sitting down in the workshop

I can’t imagine being an “expert” in a room full of hungry parents looking for answers.  

Like my other group, theres always a story worse than your own.  Colin shared with us that his 2 children were taken from him suddenly by a drunk driver.  He explained how his grief and the confusion for others to deal with it started becoming a wall or an obstacle in relationships he had had for years.  Friends that he once counted as his anchors now had abandoned him…  Not for lack of compassion… But, his friends did not know how to talk to him.  There was a story he told about a family pulling their kids away so that they could avoid the trauma.  Very wild concepts that I have not thought of.  

Colin shared some of the messages he had sent to those people and how he wanted to bring them back into their circle.  

This exercise was meant to inspire us to pick up a pad and write some messages to those people we may have lost in our lives during the trauma of losing our kids.  He also had us write a letter to our departed child.  Ugh.  That started rough and then turned into a bit of sarcasm.  Kleenex was needed!!!  

I read one of my letters to the class when we asked for participation.  I saw that we had a lack of volunteers willing to share.  

Again, I am here to learn something.  If I am going to place my vulnerable self out there I am going to make it worth my while!  (maybe that will make me better when I see a woman crying?) I think the class was generally good.  

I did grab his book and made a promise to read it.  It will be the first grief book I have read.  Ever.  I am sorry to report that I have read none of the books we were given by you all.  (Even the Kevin Matthews book!  I told my Dad about “Broken Mary” and how KevHead was now doing aps reciting the rosary.  Now he wants to read it!)

When out in a lobby area between sessions.  My leader from the session on day 1 came up to me again.  We talked a lot longer this time.  He told me that the Dad’s session on Saturday had been been a bust.  Very few people in the room.  That made me sad and I wondered if all the other dads got roped into my craft and writing events as well.  St. Jude is amazing and everyone is super accommodating, but I felt like the sessions and times were a bit odd. 

Eventually, we shared numbers because I found out he lives in our neck of the woods.   Do you do a group in Peoria?  No.  How about St. Jude events?  No.  That was a little disappointing.  Maybe I will start a Dad’s group here?  

Saturday afternoon, it was the moment we all were waiting for.  We were allowed to go back to the St. Jude campus for a presentation and reception.  

THIS IS THE FIRST TIME WE HAVE BEEN BACK AT THE HOSPITAL SINCE SUMMER LEFT IN AN AMBULANCE!   I was sure that PTSD would hit once we came through the gate.  We arrived at a different entrance.  We arrived in a bus.  It was all different. 

We were ushered into the Marlo Thomas Center.  Another building that we normally would not go into.  While Angela was rushing to the gift shop with other parents, I told a story to Mom and Dad about this building.  

I vividly remember how Summer and I struggled to find parking and found the employee lot on the other side of campus.  We then wandered into this building by walking behind some construction workers who were oblivious to us piggybacking on their door passes.  The “back of the house” at St Jude is not like a hospital at all.  It is very nice and the Starbucks doesn’t have nearly the line!!!  We stood there looking all around the forbidden surroundings when Dr. Gajjar saw us and asked up what we were doing there. We told him we were now lost… I never really saw him smile or laugh during Summer’s treatment… But he seemed genuinely amused at our predicament.  He led us to the door to the hospital and ushered us back to where we belonged.  

That was my Marlo Thomas Center memory.  

The presentation wasn’t going to start for a while… I slipped out and hit the gift shop.  OMG.  The place was packed to the gills with other parents who had the same idea as Angela.  We reloaded on plate frames and magnets for the cars 

The presentation was more of a non-denominational service.  At one point, we had to stand and say our child’s name.  Somehow… I sat in the location that meant I would be the #2 person to stand and do this.  

I have described this before.  And it still holds true.  Saying Summer’s name out loud, whether by myself or in front of a crowd is still a bit of a choke-up moment.  I squawked her name out and sat down.  

We had supper at the Marlo Thomas Center.  St. Jude never shies from feeding you, but this was unexpected… As we had been planning to go out to eat some Memphis grub.   After heading back to the hotel, we grabbed the van and made the drive to a few spots that were necessary while in town.  Like Joe;s the day before, we had to make our way to the Game Cellar.  It’s a great little game store that we visited several times while Summer was getting treatment in Memphis.  Mom and Dad humored us and the Nates as we perused the board games and I got into a conversation with a friendly guy who could totally have been my new best friend.  I had to break it to him that were in town for St. Jude and Summer.  

Next, we ran over to Novel.  A great independent bookstore/bar that we visited a few times while staying in town.    

After the mini road trip, we headed back for our last night in Memphis.  The Nate’s, my folks and Angela and I met up in the hotel lobby bar.  The Nates started setting up a game…  And then, Chuy and Annette, Oscar’s parents, came by to chat.  

We talked and talked.  For nearly two hours.  It is not lost on me that this man was silent 1 day before, but now we were hitting a ton of common ground.  We both are not ready for our kids to leave the house.  He, like me, was still content with his child to be with them.  It was the weirdest high-five moment every….  But it gave us a bit of happiness in my sadness.  Chuy and Annette were the kind of folks I was hoping to meet and compare notes with.  

We all shared numbers.  I was reminded to finish the blog post when Angela and Annette shared texts yesterday.  I have not reached out to anyone from the Remberence Day since we left.  Now, with this post… I feel bad about that.  So… I will send out some texts.  

We have 5 years of admission to this event.  I have no idea what we will do next year.  But, I did find value in it and I know Angela did as well.  So, that leans towards going back.