How My Mother Taught Me to Live With My Chronic Illness

Some people receive a devastating diagnosis later in life, but for me, I received my diagnosis when I was born. I was unable to comprehend what my diagnosis meant and how it would alter the course of my life, but my mom could. She took the burden of helplessness, anxiety, and pain as I went through surgery after surgery on my tiny body and documented each moment of sorrow and triumph.

She knew from the moment I was born that I would not have the life of a typical child and that it would not be an easy journey, yet she did everything in her power to teach me that my life, which would be filled with surgeries, sickness, and pain, was worth living. I am able to identify now, as a young adult, three ways that my mom taught me how to live with my condition.

1. She demonstrated strength.

When a person receives their diagnosis, people often measure that person’s strength on how they handle the diagnosis. In my situation, it was about how my family showed strength and taught me to be strong. I know that watching her little peanut fight to survive was the most difficult moment in my mother’s life.

She chose to love me deeply, even though there was a great possibility of losing me. She was the first person in my life to show what true strength looked like and continued to demonstrate that strength as I grew older. She was the one who told me about the realities of condition, my limitations, the possibility of never having children, and when my next surgeries would come. She would cry with me and allow me to grieve the life I might have had, but always identified the positives in each new day. She showed me that strength comes from surviving difficult experiences, but also from an attitude of positivity, faith, and hope, even when there is little to hope for.

2. She always encouraged me.

Even after my doctor’s informed me of my limitations, specifically in the areas of physical activity, my mother never said I could not do an activity. She let me find my physical limits on my own even though she already knew them. She let me  participate in any activity I wanted to, but would always ensure that it was modified to maintain my safety and health. When other children would pick on me for my differences, she always encouraged me to stay with the activity and show the other children what perseverance is. However, if I really felt uncomfortable and said I wanted to quit, she would not ask questions, but help me find a new activity to do. My mom always pushed me and encouraged me to find my own interests and rhythm in life.

My family always loved hiking and it remains our favorite family activity. When I was little everyone could just take turns carrying me when I got too tired to continue, but as grew older, they had to find other ways to help me make it through. When my mom would notice me getting tired, she would sit with me while I rested or take my hand and help pull me until I made it to the end of our hike. It was always in moments like this where recognized her encouragement and unwavering support. Without my mom’s encouragement I know I would not have learned to live with my chronic illness.

3. She was my advocate and an educator.

When I was born, people where less knowledgeable and aware of congenital heart defects. People around me did not understand how a person could look so healthy on the outside, but have a body racked with pain and ailments. Since I was too young to understand my own condition, my mom was the one who took the time to educate strangers and peers on my diagnosis.

My mom would go into my local high school’s anatomy class during their cardiovascular system unit and bring diagrams and explain congenital heart defects to teenagers. We would participate in heart walks, support groups, and Make-A-Wish fundraisers to promote awareness and understanding about life threatening heart conditions.

She taught me about the many acronyms of my condition and took the time to show me through illustrations what was wrong with my heart, how it was repaired, and what would need to be repaired in the future. She took it upon herself to know my condition in order to best advocate for my medical care. She would ask for second opinions, pursue care from the best doctors and surgeons in our city, and never stopped asking questions. She would bring lists of questions about symptoms, changes, and concerns to each doctor appointment and when I became old enough, she would have me do the same. She taught to understand my tricky heart and how to best care for it.

My mom also believed me and trusted me when it came my body. If something did not feel right, she would help me seek care and find answers, even if it required seeing multiple specialists. When I was child my mom fought for the best medical care and services I could receive and as I grew older, she taught me to fight for my own quality care and how to educate the people around me about my chronic illness.

I’m so grateful to my mom who raised me and taught me to be positive and to have hope, despite a life of chronic illness. These words are a glimpse of the impact that a mother can have on a chronically ill child, but I will never be able to fully find the words to recognize and appreciate my mom for the strong and incredible woman that she is.

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