BY AMANDA HELLER

Over the past 12 years, Andalyn and I have endured 565 days in the hospital which includes 71 ER visits and 63 admissions at 7 different hospitals in 5 states. She’s been put under general anesthesia 86 times, had 35 surgeries, 34 upper GI studies, 27 endoscopies, and 2 colonoscopies. She has had 28 central lines; half of which I have taken care of. This does not include the days spent going to appointments, tests, and procedures. I wish providers understood the things they unknowingly, and often unintentionally, do that make being in the hospital harder than it has to be. 

I wish they would try to meet me where I am instead of pushing me to where they think I should be. If they could see the wounds that never quite heal and feel the weight of unresolved trauma I carry it would make all the difference.

I wish they knew how broken I am from 12 years of worrying about how long my child will live and how scared I am that she will not survive her intestinal failure. She has almost died many times already, mostly from medical errors or “extremely rare and unlikely” medical events. If they knew all that we have been through, they would understand why I argue or push back over a “gut” feeling and they would not be so quick to assume I am just being anxious or difficult. 

I wish they knew I live in increments of time dictated by a medical care schedule. I mark my days in terms of care to be done, medications to give, pumps and infusions to manage, and medical issues to coordinate – not in minutes and hours.  As interventions are adjusted, I fear the impact those changes will have on my child’s already difficult life. So when I make a big deal over a little thing, this is probably why.

I wish they knew it is incredibly difficult for me to trust a provider that doesn’t know us. I know it means I will have to work three times as hard to get Andalyn the things that work best for her especially when they don’t fall within the standard practice. Even the smallest decisions can profoundly impact our quality of life and seemingly insignificant things have resulted in deep trauma for us. This is why I get angry or appear to overreact to minor things. In truth, I am probably exercising incredible control and what they see is nowhere near the depth of feelings I am battling.

I wish they knew I am constantly moving from one familiar trauma to the next, with unfamiliar traumas in between. New traumas emerge as complications arise and treatments compound needed interventions. This unceasing torrent of misery creates a whole new kind of PTSD. It’s not Post Traumatic Stress Disorder because “Post” implies the trauma is in the past; over and done. For me, that’s inaccurate. The intensity certainly fluctuates between tolerable and intolerable but my trauma is relentless, ongoing, almost constant. It’s definitely not in the past and it most certainly is not going away in the near future. 

I have traditional PTSD for sure, but I also have what I call Persistent Traumatic Stress Disorder. Persistent traumatic stress isn’t so much “triggered” as endured since being triggered requires a period of time when you are not experiencing trauma. In persistent traumatic stress, you can’t unexpectedly re-experience something that never really stops in the first place, so “unexpected” gets replaced with “anticipated” when conditioned by persistent trauma. 

I wish they knew that I am very good at pushing down feelings and using distraction and the ever compulsive need to keep moving as a protection from my own pain so I can help my child through hers. It is most often the little things that bring me to my knees when somehow they fracture the vault where I lock my deepest pain. The vault I created in order to have the strength to keep moving forward, since feeling the intense emotions from persistent trauma steals too much energy from the tasks of fighting, surviving, and advocating. This is probably why I seem fine managing really complex issues but fall apart over simple ones.

I wish they knew I feel totally overwhelmed despite the confidence I project. When I am alone in the chaos and all around me there is nothing but quiet, the feelings emerge from the vault and mercilessly threaten what little composure I manage to fake in my daily routine. Feelings destroy the illusion of control; the picture of strength the world sees from the outside looking in. Feelings expose the gaping wounds of my soul that allow the hope to escape in my most broken moments. Feelings become my strength’s undoing. 

I wish they knew that the complexity of managing her condition – the continuous feedings, the special diets, the vomiting and pain, plus the weight of just not knowing, have pulled more from me than I thought I could give. I struggle with feeling like a failure because I couldn’t get her the nourishment she needed. 

I wish they knew I have been required to do things to my little girl that were traumatic for her and that ripped my heart to shreds as she begged me not to do the things I must. I have held her down to place NG tubes, give terribly painful injections, and clean infected wounds all while she screamed and cried. Seeing the betrayal in her trusting eyes as the person who was supposed to protect her became the one that wounded her, made a piece of me die. It is devastatingly painful to be forced to damage your child’s soul in order to protect her body.  

I wish they knew I hate having to be my child’s nurse because it steals all the time I wish I could just be her mother. I don’t even realize how vigilant I have become because I have forgotten how not to be. Waterproofing the central line for daily showers results in emotional meltdowns for her every time. Instead of splashing in bubble baths with playful laughter, it’s hurried showers with anxious fear. Fear that a leak in the carefully constructed waterproofed dressing will allow another life threatening infection to creep into her bloodstream. So as her nurse, I have to be vigilant.

I wish they knew I have come to hate Sundays because that’s the day we do dressing changes. Too many times I have to ignore her cries of pain and pleading. I blink back my own tears so I can see to clean the blistered, broken, and bleeding skin from severe allergies that torture her if I don’t do everything exactly right. So as her nurse, I have to be perfect.

I wish they knew there are no dance classes because ballerinas can’t turn and leap when connected to IV poles and heavy medical backpacks just don’t go with pretty pink tutus. Too many doctor appointments mean there isn’t time for soccer practice. Medical needs have to be prioritized ahead of everything else in our lives. So as her nurse, I have to make hard choices.

I wish they knew that every fever and admission for IV antibiotics, cultures and blood work makes me relive the times she almost died. Just being in the hospital makes my anxiety unbearable. I’m so afraid of getting judged by providers as being difficult that I feel ill every time I advocate for her. I wish they knew that the repeated admissions, appointments, pumps, IV poles, medical backpacks, lack of sleep, and overwhelming supplies for infusions and line care, are all harsh reminders that I don’t get to be her mother as long as she needs me to be her nurse. So as her nurse, I have to be unbreakable, but as her mother, I weep. 

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.