Weary & Burdened Ep. 010: We Don’t Have Long
The creation of this podcast series has been harder than I anticipated. It was my intention to tell a story that was both honest and transparent in an effort to bring about dialogue on a topic, grief and loss, that is too often swept under the rug or minimized. The topic and the story carry a deep level of personal meaning and purpose in my life. As a result, it has many layers of importance to me.
I took detailed notes every day from the beginning of November 2011 to early January 2012. I turned the notes into a blog as a way to communicate with my friends and family while I was in the NICU. That blog stayed public for some time. For whatever reason, I deactivated the blog and now, many years later, I have combined elements of that blog, my notes, interactions and conversations I had via social media and email, along with the memories I have, and repurposed them into the Weary & Burdened Podcast.
The difficult part about it is, that I know the ending. You might also know it. This colors our perceptions of the story. It influences what we deem important. What we think should be omitted. Etcetera.
Parsing out the events, searching for an overarching theme or an underlying message at this particular time in the story was difficult.
I was yearning to be optimistic and hopeful but reflection on that hope left me feeling a bit naive.
When I was in university, I took an english course on short stories. There was a section on foreshadowing. We did an exercise that included going through the stories we’d read looking for a warning or an indication that some future event would occur.
Unwittingly, I have been doing this with my own writing. I read and reread my notes and blog. I scanned everything searching for where it all went wrong. Where were the signs things were not as they seemed? Was there something that foreshadowed what was to transpire?
I could find nothing. There was no hint of what was coming down the pipe.
This created a dilemma for me. I want so desperately to share the story of David with you. There were numerous wonderful moments, many of which I’ve recounted. Holding my son for the first time was something I will never forget. The memory of that day is as vivid now as it was the moment it happened.
I don’t want to diminish those memories. They were filled with happiness, joy, pride, love and hope.
On the other hand, as the teller of this story, I wasn’t able to use some kind of literary device to foreshadow the events that are soon to follow.
It makes me uncomfortable that I’m walking you down the exact path I took. Maybe because I’m encouraging you to get attached like I did and that brings up some guilt. Perhaps the picture I paint is too hopeful considering the ending to this story and I know too well the heartbreak that blindside brings about.
At the very beginning of this podcast series I said, “I believe there's healing in both the telling and hearing of a story.” In my innermost being I hold that as truth.
As I wrestle with this process and chew on the importance of some aspects while downplaying others, I’ve learned that is the power of story. There will be bits and pieces presented that are meaningful to me, while other odds and ends carry little weight and are glossed over or dismissed.
That’s the way life is. That’s the way stories are. They’re messy, layered, and complicated.
It’s not my job to provide you with the meaning of the story. I can’t soften the edges. There’s no lens you can look through the story at and feel all warm and fuzzy. That wouldn’t be fair of me to you. It wouldn’t be fair to the story...because reality will come careening in with calamitous effects.
There’s a part of me that wants to protect you from truth, if only to prevent you from experiencing a fraction of the devastation I felt.
Not every princess gets her prince charming. Not every warrior slays the dragon. Not every story has a happy ending. With that in mind, I’ll continue to lay out the events of December 2011 and you can take from them what you wish….
…..keeping in mind, we don’t have long.
The days at the beginning of December bumped along.
I went through David's charts to see how many procedures he'd had to gain some perspective.
* A little note about the blood draws. Many of them were taken from the ART line so it wasn’t withdrawn with a prick but pulled from a permanent line. However, there was a time his foot was poked for the blood.
Arterial lines - 2
Pic line - 1
PDA surgery - 1
Intubated - 4
Penrose drain inserted - 4
Eye exam - 1
Laparotomy - 1: (Ostomy bag -1; Mucous fistula - 1)
Blood draws - 198
Blood transfusions - 8
Head ultrasounds - 2
Echocardiograms - 3+
Catheter attempts - 4
Chest x-rays - numerous
IV attempts - numerous (in his hand, foot and head)
I was able to cuddle David a number of times and they were much more uneventful than the first time.
Two babies passed away in the NICU. One of whom I never knew and the other was Tyr Justice. The grandson of one of the women I had befriended. This was the harshest reality of the NICU. With all the advancements in medicine and the wonder and awe the NICU inspires, the sad truth is a proportion of the babies who enter the NICU die there. When you’ve gotten to know one of the families who’s impacted, it’s like a hard slap to the face.