It’s funny how certain sentiments or comments by someone, a stranger even, can stay with us for a lifetime. I described this dynamic experience in a former post entitled “It’s not what they call you, it’s what you answer to that matters” linked HERE. I think all of us can relate to a time that a certain comment landed with us in a way that didn’t feel so great.
The good news and the thing to keep in mind is that we can choose which comments we allow to stick, and let the others flow on down stream with the rest of the garbage that has no business taking a prominent place in our lives, or in our images of ourselves. And you guessed it: This falls into the “simple but not easy” category of things we are trying to become skilled at.
Two days ago I took our splendid 23 year old son Zachary to the hematologist. Several years ago we learned from a bone marrow biopsy and some other tests that Zach’s system has the propensity toward developing Aplastic Anemia, Leukemia and blood production failure. This propensity is the exact diagnosis that took his sister Alexis out in 1997 at just 13 months of age. Learning his diagnosis which was truly unsurprising, led us to a fork in the road.
We were forced to decide, between taking a major risk with Zach’s life by transplanting bone marrow as would be indicated in an otherwise healthy patient, or alternatively doing nothing and allowing all of us to continue to enjoy the excellent relative quality of life that Zach is accustomed to experiencing. In choosing the latter we would have to acknowledge that should disease become active, there would be little to nothing that we could do to treat it. After several consultations and endless prayer, we chose quality of life. That was several years ago.
And Zach is thriving! But we still monitor regular blood tests and follow up with the specialists to stay current on what is happening in his complicated but miraculous physical body. And the day before yesterday, we had one such visit.
Heading to the Cancer Center at John’s Hopkins is not a trip for the faint of heart. Not only are there haunting memories and visions of being there with our Daughter Alexis who DID die, but the patients, nurses, doctors, sounds and smells of that unit are enough to scare the ‘be-Jesus’ out of me.
In no time flat I was in some type of time warp and found myself there at an appointment with my dying daughter instead of my thriving son. A puffing of the chest, a deep breath and a strong cup of coffee are all I can really arm myself with as I push Zach’s clunky stroller, with Zach and all of his belongings, objections, perseverations and complaints, toward the entry way. “Here we go…” I thought as we entered the familiar building.
The room was large, cool and without decor. Plenty of patients sat with chest ports, partially lost or grown in hair, caregivers and plenty of equipment. I was instantly transported back to the part of my life when weeks and months on end were spent living in Children’s National Medical Center (CNMC) in Washington, DC with Alexis. With our longest admission lasting nine plus weeks, I sometimes find it unfathomable that we were able to show up for that shit show day in and day out.
I guess that’s what parents do. But the experience was nearly inhumane, restless, trauma inducing (especially audibly hearing pediatric patients dying in the next room) and too much to bear. We did it. But not because we had a choice. We did it because we had to.
So being transported back to that season as Zach and I sat in the waiting room on Monday was not my idea of fun. I tried to deep breathe, keep Zach entertained with his iPad as his own anxiety started dancing on an upward trajectory and remind myself that this was just another appointment, one more thing we had to do, and it would soon be over.
It didn’t help that the labs we had drawn from Zach on Saturday morning in preparation for the clinic appointment displayed alarming decreases in his white blood cell counts. It’s all relative. But understanding the changes as the RN I am trained to be, added another level of stress and fear that complicated my ability to stay cool.
Then it hit me. As we sat there in anticipation of our name being called, I had a flashback to a memory I’d thought I’d forgotten. It was one of those moments that I try to forget, but the words won’t stifle. They just follow each other in sync and shout of our daughter’s ultimate demise, despite the confident proclamation that her hematologist at the same hospital had declared over her in 1997 just months before her death:
“She’s a keeper,” he declared.
That was not the first time a medical professional had been wrong about Alexis, but it was one of the most painful miscalculations. Despite her extended admissions to CNMC, we were committed to getting more medical expertise on board to decide how to proceed with her treatment. Over the course of one short hiatus discharge from CNMC, we got Alexis up to Hopkins, records and all, to see what a clean set of doctor’s eyes might reveal about her condition and what the next best thing would be to do for her.
It’s so strange to consider the things we focus on when we are out of our own bodies, observing from a distance. The person who had accompanied Alexis and me to this appointment was beautiful, vibrant, and dressed like I used to before I’d started living at CNMC for months at a time.
As I gazed adoringly at this woman who was helping us navigate our hellish adventure, I noticed the prominent display of one of her bra straps that kept sneaking out from under her sleeveless shirt. It was July in Baltimore, hotter than we like it to be. And despite all that was happening in that appointment, the things that I remember most, were the zebra print bra strap, and the confident conclusion of the hematologist that day, that “SHE” being Alexis was a “KEEPER.”
As a PICU nurse I have been coached to understand that we are not fortune tellers. We don’t offer promises of things working out or being ok, because we don’t know that they will. We can provide updates and information, but never opinions about what will ultimately happen to someone’s critically ill child. But the doctor we saw with Alexis that day must have missed that day of training. Because for a few very short days, his contention that “She” was a “keeper” gave me unsubstantiated hope that only provided me with a harder fall when I realized he was wrong. Alexis died about six weeks later.
Grief is so complicated. Even decades after this experience of being reassured Alexis would survive I still have a physical reaction to being in that space. It is not because I haven’t done the work of grief. It is not because I just can’t let go. The physical reaction is simply my response to trauma, and that is not something that ever goes away.
Over the years, a reaction like this one would send me spinning, believing that such pain should be dampened and way in the rear view mirror by now. But I know better. I know that I am human and not a superhero. I know that even though I do my best to live the life I am in today and not hang out in parts of my life that are gone, that I can still be triggered by things like visiting the Cancer Center where my Daughter was mis-diagnosed, and I now sat with my Son who has low blood counts. I know that it is normal for such a reaction to occur, that the reaction is temporary, and that Zach is not Alexis. I know that I can allow the experience of terror to arise, move through, and eventually exit my body, and it did.
And I forgave the doctor’s incorrect conclusion and frankly, confidence without clarity that instilled just enough hope in me that Summer that Alexis might actually be ok. I felt dumb, and it seemed like the game (of life) itself was rigged. I can’t blame anyone for mistaking the brightness in her eyes, for health and wellness. Her love and connection had that effect on people.
Even educated, experienced and reasonable clinicians got it wrong simply because she was shiny in her illness. So shiny that even I refused to believe she could die, until I found myself at the mall trying to buy a dress for her bloated, deceased, chemically “preserved” body to display openly in a casket. She fooled us all. Little stinker!
If you have lost someone you love, no matter the circumstances, give yourself some TLC and understand that we will never stop being triggered by memories of that person. Sometimes the triggers feel like a blessing and sometimes they feel like a curse. But whether they fill us with Joy or pull the rug out from under us, they’re all we have now and they are worthy of respect, admiration and Grace. Maybe the resurfacing of these memories now and then are just our lost loved one’s way of saying hello. Maybe we can learn to let them roll through us, instead of over us like a truck.