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How do I do what Andalyn’s pediatrician counseled me when he said, “I know it’s difficult to always feel like you’re living on the edge of a cliff, I wish I could change that. When we get to a place where we need to discuss death and dying, I will be straightforward and honest with you. For now, keep walking that path without peering too far over the edge.”
How exactly does one walk on the path that traces its way along the edge of uncertainty’s cliff without “peering too far over the edge?” How do I get better at living in the shadows of uncertainty especially in times when death feels far too close? Is that even possible? If it is, what does that look like? Does it look different for different people or is there one basic answer that works for everyone? Is there even an answer to be found at all?
These are questions that have taken me years to find the courage to be willing to acknowledge and voice. I wish I could say I have this all figured out. I wish I had insight and knowledge that might help others looking for the same answers, but the truth is, these questions are still fresh and new to me. In a lot of ways they are just beginning to tear their way through my soul so they can crawl into the daylight. As these questions are working their way to the surface, I’m afraid to look too closely and yet I’m unable to look anywhere else at the same time.
I want to understand. I want answers. Mostly I want there to be tricks somehow to magically get back some illusion of control over the fears that loom heavy just outside my grasp but always just above my head. While I definitely don’t have many concrete answers, there are a few things I have stumbled across–mostly by accident–that help (sometimes). Being honest with safe people, turning to writing and music, and using facts to challenge fear as a way to ground myself in the present are the things I most often do in my attempts to not peer too far over the edge.
Being honest with safe people for me means finding and confiding in those rare humans who truly understand the power of what it means to be present. Sharing what I am going through without worrying about how I will be perceived allows me to focus my energy to get below the superficial layers and dig into the deeper root of what I am struggling with. Safe people allow time and space for pain, grief, anger, fear and any other feelings that are generally unpleasant, without trying to change or eliminate them. They understand that when feelings are allowed to exist as they are and to be fully experienced, they can be powerful channels to release the pent up emotions that cause headaches, issues sleeping, panic attacks, and other physical problems. The sheer pressure to keep all my crazy wrapped up in a neat little box so the world doesn’t see it, is incredibly intense and isolating. Having safe people to let it all out with has been one of the most–if not THE most–beneficial things I have discovered.
When I am desperate to feel anything other than the numbness that living in a constant state of revolving crisis inevitably creates, I sometimes use music to connect with my repressed feelings. A powerful song can tell the story of my pain when my own words feel inadequate. Sometimes music is the only thing that can break through my walls and connect the two parts of myself back together again.
In times when I am not fragmented by trauma, I often turn to writing. Writing gives me a way to externalize pain and give it a voice. It creates a space to both fully explore and disconnect from painful experiences, often in the same piece. It also gives me a way to have some control over my grief and trauma. When I write I feel like I can hook the pain with words and pull it out of me, being careful that as it disentangles it doesn’t also unravel my soul. After the pain is drawn out of me, I can capture it inside carefully woven descriptions that get tethered to the page. I can take my time to work through things little by little or I can allow myself to become completely immersed in the words.
For times when I need to push back against the monster of PTSD, I do my best to try to ground myself in the present moment by using facts and experience to challenge my fears. It’s barely effective, though, against the memories that haunt me. When we are in the hospital, the past plays over and over like a bad movie on a loop forcing me to relive the trauma from prior hospitalizations and multiple bouts of sepsis Andalyn has battled. I desperately look for any differences between then and now to reassure myself that she isn’t dying–yet. Sometimes this is the extent of the comfort I can scrounge up between the beeping medication pumps and the pages sent by a bedside nurse to summon help in the middle of the night when things take a turn in the wrong direction. Focusing on the moment and the progression of needed interventions gives me a way to measure how many steps it is to the edge of the cliff.
I don’t know that I can ever stop worrying that every fever could become the infection that takes Andalyn from me and carries her over the edge. I have come to accept that Death will be quietly waiting in the corner of each of her hospital rooms but being able to shift from ‘what if she dies’ to ‘she isn’t dying yet’ is most certainly the only way I will survive the reality of him being there at all.
I live in Aurora, Colorado with my 12 year old daughter, Andalyn. I am divorced so I am navigating this journey as a single parent. We came from New Mexico in 2014 so that Andalyn could get the medical care she needed at Children’s Hospital Colorado. After spending 15 months in the Ronald McDonald house, we officially became Colorado residents when we moved into an apartment. Andalyn has complex medical needs and multiple challenging diagnoses. I have spent her life striving to make things for her as normal as possible because so little of her world is in our control. I have no idea how much longer she will get to be here but she has already lived far longer than many suspected she ever would. I survive most days on Diet Dr Pepper, sarcasm, and a little bit of dark humor sprinkled in for good measure. I am a very sensitive soul that feels all things deeply but I have found a way to thrive through the power of connection. That connection is what makes it possible for me to do impossible things for as long as they need to be done.
Amanda is a CPN Blogger in Residence, an opportunity available through support from Sanofi.