The Pile of Stuff

It’s been months since I sorted through my pile of stuff that includes various things that may or may not be important that I put in one spot so it doesn’t get lost. It used to be a weekly task on Sundays and the pile was always current within a week. I’ve been adding to it since late fall and I don’t think I’ve removed anything since early spring. I knew there were some time-sensitive things in it so I put it on my Must Do list for today. It’s been on the Must Do list for weeks, probably months, but it actually happened today. Here’s what I found:

  • My first warning of illegal absence from Lilly’s school. 
  • An unopened letter from the CHOP division of neurology dated in April telling me that Dr. Panzer was on medical leave and the opened one from May telling me that she was now dead. The first one had letterhead with the old CHOP logo, the second one had the new logo. Sometimes things change quickly. 
  • A letter from DuPont Hospital for Children with the details of the siblings of kids with cancer three year research study that Lilly agreed to participate in only because they’ll give her $20 each year for answering their questions about her feelings and experiences about Shawn’s cancer. 
  • The $20 gift card from the DuPont study.
  • My about-to-expire car registration renewal. 
  • The about-to-expire renewal to continue to store Shawn’s frozen testicular tissue to maybe give him a shot at having biological kids when he’s an adult, if he wants to, since the chemo we gave him will most likely make him infertile. 
  • An unopened letter from the kids’ school telling me that it’s illegal to copy the material from the upcoming state standardized tests. 
  • The approval for Lilly to miss school for Shawn’s Make-A-Wish trip with an asterisked note that it will be an unexcused absence since she has missed more than ten days, including back when Shawn was still on treatment and we used to take her down CHOP with us because she is his favorite person and needed to be there.  
  • Notices of approval for four MRIs from Shawn’s secondary insurance via Medicaid. 
  • The flight information for Shawn’s Make-A-Wish trip, that was later changed. 
  • Christmas cards. 
  • Three Audiology reports from CHOP documenting Shawn’s progressive hearing loss. 
  • Ten weeks of Shawn’s old homework, completed and marked by his teacher.
  • Sympathy cards for Bill’s son’s death that still need thank yous to be written. 
  • A Bed Bath & Beyond 20% Off coupon. 
  • Highlights magazines. 
  • Ann Taylor Loft coupons for my birthday in December. 
  • Shawn’s second marking period report card. 
  • Copies of the kids’ birth certificates. 
  • Panda’s adoption and vaccination paperwork. 
  • Waffles’ adoption and vaccination paperwork. 
  • Deposited checks and cards that still need us to write thank you letters for donations when Shawn was in treatment and I wasn’t working. 
  • Sympathy cards from my father’s death. 
  • Coupons from Toni Roni’s pizza. 
  • A 1095-B form documenting that Shawn has state Medicaid coverage for our 2016 taxes.
  • Forms to be completed for Shawn’s 504 plan and IEP for the next school year.

Mail Pic

The Pile used to be a lot less daunting and a lot more manageable. Our lives used to feel a lot less daunting and more manageable. My Pile Of Stuff doesn’t seem to disagree.

The Sound

The Sound a parent makes at the moment their child dies.

About two months into our CHOP adventures, I layed awake in my chair/bed thing next to Shawn in the PICU, trying to sleep since Shawn was already doing so, bored, reading Facebook or something equally mindless, repetitively clicking like to various vaguely interesting things that were happening where I wasn’t.

Code Blue.

A kid was in immediate danger. Not breathing or something similar. The first time I watched a Code Blue in action it was terrifying. Everyone moves fast. Their faces go from routine to serious REALLY QUICKLY. After maybe the tenth time it became part of the deal of living on the Pediatric Intensive Care Unit of a children’s hospital. The PICU is transient. You don’t know anyone and after a while, for purposes of self preservation, you learn not to turn your head to look at much of anything on your way back to your room. Or rather, your kid’s room. Where you are trying to sleep.

The kid rarely died in my experiences of Code Blue. They had a medical team that was among the best in the world. I quickly learned to just turn up the music on my headphones if I didn’t want to listen to it, or focus on whatever I was doing with Shawn. It would be ok. The kid would be ok when they finished doing their work. Except when the kid wasn’t ok. Except when the kid died.

That night I heard an indescribable sound that I will never forget. The sound that the mother in the room next to us made at the moment that her child died.  I took my earbuds out and sat on the side of my chair/bed thing and listened. It wasn’t a cry, it was more guttural than that. The crying would come later.

Bill’s phone rang at 4:28AM. We grumbled to each other, in a half asleep fog, about the amount of annoying spam calls his phone has been getting lately. When it immediately rang a second time after the first rings were done, I told him that he should answer it. His phone was in the living room, a few dozen feet away from our bedroom. When it rang a third time on his way to the coffee table I braced myself.

I wasn’t prepared.

The Sound.


Bill collapsed.

I picked up his phone.


Who am I talking to?

What are you saying?

Kris’s friend.



Kris died?


Zachary died.


I already knew.

From my sample size of two, I can say that the sound that a parent makes at the moment that their child dies, or at the moment they learn that their child died, is universal. I was 42 years old before I heard that sound for the first time and 44 years old when I heard it for the second time. Perhaps in less sanitized societies you hear this sound earlier in life and you know what to do with it. I’m still learning. And I know that I cannot begin to pretend that I understand the experiences of all who’ve lost a child and what sound they make at that moment.

I have a better than not chance of outliving Shawn. So I have a vested interest in this. Maybe this is research. Experience. We’ve spent the last year and a half mentally bracing ourselves for the potential death of the wrong kid. I don’t know why that kid on the PICU died. I don’t know if he or she had fought a long battle with chronic illness or if he or she was in a car accident the day before. Or a drug overdose. Or cancer. Or HLH. Or asthma. Or suicide. Or anorexia. Or heart disease. Or child abuse. The PICU is transient. We purposely don’t know. It doesn’t matter. The Sound is the same.