What No One Ever Tells You About Parenting With Chronic Illness

My son took his first wobbly steps in a hospital room just days after my first heart surgery. My diagnosis came at the very beginning of his life — and at what seemed was the very end of mine. So we both have been walking this path with chronic illness nearly his entire existence. And his sister, who arrived eighteen months after my diagnosis, knows only a life lived with a mom who experiences chronic heart failure.

I have often longed for a mentor on this journey, someone to teach me how to be a parent while sick and how to be sick while parenting. I imagine her sharing with me the things no one ever told me, things that may not alter my experience, but would certainly normalize it.

Things like:

1. The urge to control your children’s life — long beyond your capacity to do so — often will be immense. When I first learned that I was dying, I furiously attempted to get my son’s life planned out for him right then: his father would marry my best friend, they would keep me central in his life, images of me would surround him, there would be notes left from me to be opened on each of his birthdays and at special events like graduations and weddings.

2. The movement toward guilt may be just as immense. Quickly realizing I had neither the time nor the energy to put any of my plans for controlling his life into place, I felt awash in guilt. The items for which I have claimed responsibility, all far beyond my capacity to influence, include: not being well, not being able to do the things other parents can do, taking up so much of the focus of our family through my illness and treatments, bringing a child into this world knowing I may not live long enough to raise her.

3. You will have to learn to rely on others to help you parent. This seems obvious, and yet it still surprises me at times. Changing diapers, making meals, driving to school and games and playdates, helping with homework — every little task of parenting may sometimes need to be assigned to another adult.

4. And you may hate that. Amidst all my gratitude for the generosity of those helping our family, I also have experienced jealousy, anger, sorrow, even resentment at times watching them do things for my children that I could not do. And that has then quickly lead to feelings of guilt (see #2, above).

5. You will feel invisible in your children’s lives at times. I have missed swim meets, dance performances, concerts, final exam celebrations and many other events due to hospitalizations. Being absent at so many important times sometimes leads me to feel invisible.

6. And you will never be invisible to them, even when you are not present. What I have learned is that even when I cannot be with them, my children still feel my presence. I am present in the encouraging words they have heard so often they can replay them in their minds with little effort. I am present in the look of belief in my eyes — the one they have witnessed as I watched them encounter so many of the significant milestones and the mundane events of daily life; this look of belief in my eyes has been etched into the insides of theirs.

7. Your chronic illness will help form the shapes of your children’s lives: spending so much time in hospitals has informed who my children have become. Their comfort around pain, their capacity to be present with others in crisis and their compassionate ways of listening and supporting all seem to have their seeds in the countless hours they have spent at my bedside.

8. You will likely never be able to predict the ways your chronic illness informs your children’s lives. Both of my children plan to have careers in medicine, which perhaps seems a likely outgrowth of growing up with a chronically ill mother. However, I have met many young adults whose experience with a chronically ill parent has steered them to careers as far away from medicine as possible.

9. And your children’s lives will help form the shape of your chronic illness. My son learned to walk as I was no longer able to walk. My daughter began dance classes as I entered ICU. I remember each of the events of my illness as firmly rooted in a specific time and place of my children’s lives. Their journeys of growth are intricately interwoven with my journey of decline.

It has been two decades since my son took those first wobbly steps in the hospital. Two decades of my children growing into young adults. Two decades of my navigating chronic heart failure. Every single step, the wobbly ones and the sure-footed ones, has formed this journey we are on together.