BY AMANDA HELLER

Sometimes I think about the deterioration of my marriage as just another casualty of Andalyn’s complex medical needs. After its death, this companionship was laid to rest in the basement of my soul, tucked carefully between unrealized hopes for more children and growing old with my best friend. The transition from being a “we” to a “me” was something I was not prepared for even though it was not entirely unexpected. I have somehow found my way through the past nine years, but being just a “me” frequently feels like it’s not enough. 

With all of the arrogance and selfishness of an uninvited, unwelcome guest, divorce barged into our home just as the leaves were beginning to fall and the smell of pumpkin spice everything filled the air. Divorce wasted no time taking over the whole house. Because of Andalyn’s medical needs, anxiety, depression, anger, and grief had already moved in with me so having an additional intruder made the house pretty crowded. When divorce showed up I didn’t have room to unpack his many suitcases bulging with hurt feelings, painful memories, and broken dreams, so I shoved all his crap into closets, under beds, and behind storage bins full of Christmas decorations just so I wouldn’t have to see any of it. I did my best to ignore the messes that divorce created all over the house so I could focus on Andalyn. 

This sort of “tunnel-vision focus” wasn’t really much different than the way things had been all along. With all of my energy being poured into our chronically ill child, it didn’t leave much left to tend to my marriage. Sleeping in separate beds to share the tremendous burden of 24-hour care seemed like a good idea in the beginning. We figured at least one of us got to sleep every other night. But the separation grew steadily and spread  beyond sleeping arrangements to all the other areas of our relationship. As the days stretched into months and the months into years, I barely noticed the distance increasing between us. A thousand little things, and a few that were not so little, steadily piled up until they buried our relationship under a thick blanket of resentment and unmet needs. Ironically the thing that initially deepened our connection–her medical fragility–was now the very thing forcing us apart.

It was very painful for me as Andalyn’s dad and I struggled to figure out the dance of joint custody and co-parenting. Initially, it almost felt like we were still married but living in separate houses because we still spent a lot of time together. As Andalyn’s medical needs became more complicated and life took us in different directions, however, the last threads of decency between us unraveled. It took several years and some significant events to put us back on a path headed in the right direction. Even so, her dad and I struggled for a long time to find our way back to a place that felt like friendship. Finding our way out of conflict was a very difficult process, but eventually things shifted into a place of empathy, kindness, and mutual cooperation. Compassion smoothed over the broken places and created a space for us to stand together on softer ground. 

Without careful tending of this new landscape, the softer ground we have managed to cultivate could quickly become inundated with thorns, rocks, and other harmful barriers. It would be easy to get frustrated and be unkind to one another. When things come up unexpectedly, we try to be understanding and consider the circumstances in each other’s lives. Being flexible and keeping Andalyn as the focus really helps us work together to find creative solutions and avoid a multitude of hard feelings. 

Navigating any relationship takes work, communication, and a mutual spirit of cooperation. I would dare to say that on occasion I have found myself working harder on this in our relationship now that I am divorced than I was capable of at times in the marriage. I am also far more capable of being objective now that we are living separate lives. 

Having a medically fragile child adds a compounded complexity to divorce so finding ways to keep the peace definitely is the best way to go. Reflecting on all the ups and downs it took to learn how to do this, there are a few things that stand out that have been particularly helpful. 

The first and most important is that we finally figured out how to establish consistency. Lack of consistency between households for a medically fragile child can literally be a matter of life and death. Differences in parenting styles, routines, and activities between households have to be carefully balanced with medical, emotional, spiritual, and physical needs of everyone involved. This is not an easy task. It is exponentially harder if there are unresolved misunderstandings or a lack of good communication. 

Clear and ongoing communication is incredibly important and so this means involving the medical team on occasion. Allowing providers to shoulder the responsibility to ensure that Andalyn’s medical needs get communicated correctly when there is a potential conflict or when something needs to be clarified puts Jonathan and me on the same level. More importantly, it puts everyone on the same team. However, if I am put into the role of being the teacher or the person dictating how something needs to be done, it can easily upset the delicate balance of power by shifting me into a role of being his supervisor in a way, and that only leads to resentment. The benefits of letting clarification regarding when something needs to be done differently, or explaining the importance of doing something in a specific way, takes me out of the middle and means we both receive information and instructions from the source. Working together with the medical team in this way has taken some of the burden off of my shoulders and has helped to rebuild some areas of broken trust. This simple but incredibly powerful approach has prevented many potential conflicts before they could even happen. 

The best way for us to maintain good communication and consistency in Andalyn’s medical needs is to utilize a written plan. Having both a written care plan and a schedule means I don’t have to worry about forgetting important details, and her dad doesn’t have to remember a massive amount of information about her constantly shifting needs. He lives in a different city about 80 miles away from us, so co-parenting and visitation arrangements have to include careful cooperation otherwise Andalyn could suffer life-threatening complications. As various things have changed over the past few years, the situation has made  it necessary for me to take on nearly all of Andalyn’s care, even when she spends time with her dad. It is not a common scenario for anyone to have to spend long periods of time with an ex-spouse and their new family. Fortunately, what was initially very painful and terribly awkward has slowly softened into mildly uncomfortable and less awkward. Choosing to do whatever it takes so that my daughter can spend time at her dad’s house may not be easy but it is intentional. An unexpected blessing has unfolded with the beginning of a new and cautious friendship. 

Finally, organization makes all the other strategies come together. In Andalyn’s case, going anywhere longer than a few hours is a tremendous amount of work and demands careful planning. When the time comes to get things ready for a visit with her dad, even for just a day trip, it can take hours to make a plan to adjust medical care for travel, gather needed and emergency supplies, and then organize it all into a somewhat manageable chaos. Overnight trips with her dad are not always a possibility. So when they do happen, in order to make things go smoothly and for Andalyn to be safe, good organization is critical. It takes advanced coordination with her supply companies to schedule deliveries so that I have everything on hand that she will need before we go. 

The way I handle this is by using a checklist I made that has everything she needs on it. This is my attempt to avoid a crisis–at least one related to things I can control–so I don’t forget anything that has to go back and forth between households. She has nearly 70 different items I have to pack related specifically to her medical needs for trips so obviously I can’t just toss a few things into a backpack at the last minute and drop her off for a weekend somewhere. While it’s not a big deal if I forget a personal item, clothing, or a toiletry, if I forget her medications or supplies, her dad can’t just make a Target run to grab a $3500 infusion pump or a $1000 bag of Total Parenteral Nutrition along with a spare toothbrush from the toothpaste aisle. In addition to remembering all her stuff I also need to make sure that I pack everything in a way that is easy for her dad to quickly find the things he needs. He appreciates my efforts to make doing her medical care easier for him and safer for Andalyn.

Advanced planning, careful organization, care plans and checklists, anticipation of potential needs, making intentional effort to work together and prioritizing Andalyn’s needs ahead of my own are all necessary if I can ever hope to master the art of a good divorce. It certainly creates a tremendous amount of extra work for me but her dad is incredibly appreciative. When he acknowledges the sacrifices I make it feels wonderful to be validated. The peace of mind that comes from knowing at least in those visits I am doing everything I can to meet her medical needs AND she gets to be happy–that is what makes all the hard stuff 100% worth it.  

I live in Aurora, Colorado, with my feisty daughter and crazy cat. Andalyn has complex medical needs and multiple challenging diagnoses. I have spent her life striving to make things as normal as I can for her because she has already fought a lifetime of battles. Through a combination of faith, grace, my hypervigilance, and her incredibly tenacious spirit somehow she continues to beat the odds and has already lived longer than many suspected she ever would. Because I feel everything deeply, I have learned to cope with the challenges of meeting her needs through my writing, the power of connection, and bits of hope I find scattered along the way. I have been writing essays and short stories since I was a child but recently I accomplished my life long dream to publish a book. My novel, A Tattered Soul, is the true story of my journey coming to terms with Andalyn’s life-threatening illness and its undefined prognosis. When I am not writing or caring for Andalyn I enjoy sleeping, finding ways to help others, baking anything delicious, and watching TV. I survive most days on copious amounts Diet Dr Pepper, sarcasm, and a little bit of dark humor sprinkled in for good measure.

Amanda is a 2022-23 CPN Blogger in Residence, an opportunity available through support from Sanofi.