Cool as a Cucumber: Parenting a Child With a Chronic Illness
When doctors told me my son Joshua could no longer eat food that was causing him significant distress, I felt profound sadness. He had sporadic rashes, vomiting, and other complications that led to him being diagnosed at 18 months with eosinophilic esophagitis (EOE).
From the doctor, I learned that eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease that accumulates within the esophagus when a type of white blood cell (the eosinophil) accumulates in the esophagus. Elevated eosinophils cause injury and inflammation to the esophagus. This damage can make eating difficult or potentially result in failure to thrive, difficulty swallowing, and sometimes chronic pain.
Overwhelmed and feeling helplessness, there was nothing I could do but follow his doctor’s recommendation to remove all food from his diet and to nourish him only with an amino-acid based formula. Hospitalized for failure to thrive later that year, foods were re-introduced to Joshua one at a time to see what he might be able to tolerate. Thankfully the flare-ups subsided and he began to thrive.
The more I learned about EOE, the more concerned I became. Questions swirled in my head.
What could my son safely eat?
What livelihood would he have with extreme food allergies and airborne reactions?
Would he ever be able to attend school regularly and become a functional, independent adult?
Was there a correlation with other diagnoses including his developmental delays, asthma, eczema, and autism?
Given my concerns, I longed to connect with other families dealing with the same chronic challenges. Thankfully, after some creative internet sleuthing, I found like-minded support groups that helped me overcome feelings of isolation and grief. Fortunately, at a national conference, I met families with loved ones already diagnosed who shared how they coped with eosinophil-associated diseases.
Fast forward to January 2017 and my son was at yet another health crossroad. Despite a few solid foods being added to his diet, he was not gaining weight. A new treatment plan was proposed: a gastronomy tube (G-tube). Doctors shared this type of feeding would complement ongoing meals and bring additional nourishment directly into his stomach.
Before his initial diagnosis and treatment plan, flare-ups were random and left me feeling frustrated about how to help him. Before and after the G-tube surgery, thankfully I had developed a set of self-care techniques, coping skills, and support network that fostered proactive self-care.
Learning to compartmentalize EOE — and comorbid conditions as well — has been helpful. Pacing myself as I look for answers about overlapping conditions has been an effective tool for maintaining balance while staying focused on my physical, social, and emotional health. Given the complexities just within his six years of life, I shifted my attention to disease management strategies rather than feeling exhausted by multiple visits to the emergency department for flare-ups and hospitalizations for new diagnoses.
Through his health challenges, I have found acceptance rather than feeling hopeless about a rare, incurable disease. Answers are not always apparent, available, or what I want to hear. But, rather than wallowing in stress, anxiety, and helplessness, I gathered resources to educate myself. Preparing by myself and my son about lifelong disease management has been a more worthwhile investment of my time rather than having a pity party.
Like most parents, I have concerns about his future. Some variations of my type-A personality and the stress of raising a chronically-ill child help me stay alert about his needs. Rather than lose time fretting about the disease and related health issues that I cannot change, I choose to stay present and focus on keeping myself healthy and focused. In turn, this gives him a good example for learning how to manage the unknown.
Sure, I am human and I have my moments of frustration, but I bounce back and no longer worry about how he will thrive with EOE because he already is.
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