BY AMANDA HELLER

Initially, I was hesitant when Andalyn’s pediatrician suggested palliative care. I was scared by the implications. I didn’t understand the role of palliative care or how it would fit into Andalyn’s treatment team. Fortunately, her pediatrician sensed my discomfort and quickly offered clarification. I mistakenly thought, as most people do, that palliative care was the same thing as hospice. It is not. Palliative care is about maximizing quality of life and symptom management. It’s about shared decision-making, care coordination, and honoring your values. It’s about figuring out what’s important to you and where your boundaries are. Palliative care is about finding your voice and learning how to advocate for your child and for yourself.

I was already very good at advocating for Andalyn but I never dared consider the idea of advocating for myself until a palliative care doctor came into my world. Her medical team frequently anticipated problems offering solutions before I could even ask for help. Even so, there was a lot I never said either because I didn’t know exactly what I needed or because I was too scared I would be misunderstood. I have learned the hard way that in the medical world big feelings and too much honesty have a way of making boundaries and invisible walls appear where openness and comfortability once was. Palliative care became a valuable resource facilitating communication with her medical team, especially around difficult topics, so my needs could be better received.

One of the hardest things for me to convey was an unfamiliar kind of grief. I was drowning in a profound sense of loss that I couldn’t explain or talk about. I didn’t understand how I could be grieving so deeply when my daughter was still alive. This soul-sucking pain stretched from our past into our present, while somehow also projecting into our future. It is strange to mourn for what you have lost while simultaneously grieving what is happening right now and aching for what never will be. 

Our palliative care provider and her pediatrician have become my guides on this journey back and forth across the bridge of borrowed time. A bridge that connects where Andalyn and I are now, to where I am afraid we will end up, long before I am ready. Not that you can ever truly be ready for something as awful as losing your child. They remind me that these things I struggle with are normal and in some ways, even expected. They provide me with much needed reassurance that my questions and fears are valid and don’t mean I am being dramatic. I am incredibly grateful that in especially difficult conversations the things I can’t quite figure out how to voice are somehow still understood and validated with sincere compassion and empathy.

Palliative care also provides crucial support as I work through the painful process of trying to accept unimaginable things. One of the hardest being the reality that we have pretty much exhausted every intervention available in our hopes to “cure” Andalyn. Palliative care is helping me to make the very painful shift from cure to comfort; from hoping someday she will have a normal life, to trying to make the life she has as normal as possible. 

In making this shift, I need to voice my fears without being told things like, “don’t think like that” or “we will cross that bridge when we come to it”- well meaning but useless sentiments. I need someone willing to sit with me in the uncomfortable moments; someone who can help me process my fears around the potential death of my child. I need to ask the questions my mouth refuses to utter but my heart screams anyway. I need someone that knows how to guide me through the places that no parent should ever have to go. 

Despite all my pain, grief, and shifting expectations, I know palliative care is not about giving up or losing hope; even though hope looks very different for me now. I no longer hope for what I have come to accept as unrealistic expectations. Hope has changed into trying to have as many good days as possible with the fewest regrets. Hope is now centered in trusting her providers to work with me as I advocate for Andalyn in all the ways that matter, for as long as she needs me to. 

I now understand how palliative care helps me see things from a different perspective and empowers me to make purposeful decisions. Decisions that feel right in the very deepest parts of my soul even if someone standing on the outside could never understand how I could make such choices. Palliative care is about having help to evaluate which interventions no longer make sense and which risks are worth taking in order to create moments of joy for Andalyn that she otherwise wouldn’t have. Palliative care is helping us find the balance between living for interventions and doing interventions so she can live. 

Recently, for example, I asked if Andalyn could be allowed to go swimming. She has loved being in pools, baths, or any other water play as long as I can remember. It devastated her when she was told at just 4 years old that she could not do those things again until she no longer had a central line. The reality is she will likely always need a central line. So I did some soul searching.

I sobbed my way through the entire conversation with her pediatrician as I asked for his recommendations to mitigate the risks of swimming with a central line as much as possible. I told him how important shared decision making is to me. I cried so hard I am not even sure how he understood anything I said but he listened patiently and without judgment.

I left that appointment with a promise that he would get back to me with his recommendations around swimming and a sense of peace knowing he understood my need to create joy for Andalyn. If something terrible happens as a result, I will cling to that peace and remind myself that I had support from her team. Most importantly, I will remind myself that I gave her a voice in how she got to live.  

For me, palliative care has been about finding validation and a safe place to talk through the things I’m not supposed to say out loud and to process the inevitable shifts in my child’s baseline. Most of all, palliative care is lending me the courage to keep fighting, especially when fighting looks a lot like letting go.

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.