BY AMANDA HELLER

There was a time in Andalyn’s life that I would have done absolutely anything for answers about her medical condition, heck even for the hope of a hint at an answer. I took lots of “long shots” and tried every single intervention her medical team could think of out of sheer desperation to find the magic fix that would give us the life I dreamed of for her. I felt like a crazed treasure hunter searching for the buried gold under some impossible to find ‘X’ on a map that felt like no one even knew existed.

Not knowing what was wrong with my daughter was torture and the uncertainty was killing me slowly. My own will to live was getting swallowed up in her disease. Every decision I made was in the shadow of unrealized expectations. With all my energy focused on keeping her alive so she could be “cured,” the irony was that we weren’t really living much at all. We were alive obviously, but we were not experiencing much outside of medical treatments or interventions and I was doing my best, constantly in survival mode, just to keep going. 

Looking back I definitely have regrets that I didn’t make more room for time to be happy, for living in the moment, and for letting her illness be whatever it was instead of feeling compelled to try to change it. I didn’t know how to live in the middle of constant crisis and I didn’t yet understand that acceptance is not the same as giving up. I spent years fighting against a reality I just couldn’t face head on. I didn’t know how to stand under the weight of the truth that my child could die at any moment without being crushed by it. This took time and only recently has become something I have been able to articulate.

As I re-evaluated the way our life was playing out and began to think through what quality of life looked like for us, a new perspective began to take shape, clarifying what I wanted for my little girl. I was sick with anxiety over the idea of sharing my feelings with her medical team after figuring out what was important to us. 

I had a paralyzing fear that they would call child protective services or that the ability to make decisions for my child would be taken away from me. I worried they would not understand the way I was feeling and wondered if they would continue to support me after changing my goals for her care. My approach to decision making related to interventions was starting to shift to a quality-of-life perspective. I was afraid this perspective would be mistaken for giving up, or worse, not wanting to take proper care of her anymore. 

It took incredible bravery to open up about the most vulnerable pieces of my heart and what kind of life I wanted for my child. I was nudged in the right direction by a churning mixture of hope for something better, exhaustion trying to maintain unsustainable routines, and eventual acceptance that my “fairy tale life” was going to be very different than I planned. With wisdom and guidance from her pediatrician and really good palliative care support, I slowly began to understand that gratitude and grief can coexist in the same experiences. I know now that I can be excited and feel relieved when something that I fought to get for Andalyn works out while also grieving the fact that she needs whatever I had to fight for in the first place. I can also be filled with relief when a fever doesn’t mean a life threatening infection and still struggle against unpredictable waves of trauma from being in the hospital yet again. 

Because of the support I have, I have come to understand that it is ok-even normal-to hold overwhelming sorrow in one hand while holding joy in the other. I am learning how to shift from frantic denial to quiet acceptance through the experiences of holding suffering and peace in the same moments. 

I haven’t given up on my daughter by any means. I still advocate for what Andalyn needs. I most definitely still participate in, and seek out, treatments but the motivation driving me along with my decision making process are shifting in relation to her baseline. I still fight for her as I always have and I always will. Only now, I have the insightful ability to see meaningful purpose in those things that I decide are worth fighting for.

About Amanda

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.