The Joys and Fears of Motherhood With Chronic Illness

As Mother’s Day fast approaches, I find myself reflecting on my own role as parent to my 14-year-old daughter, Lilly. I live with a chronic illness, gastroparesis, which leaves no aspect of my life untouched, and, like many in my community, I worry about how my illness impacts my child and sometimes fear it disqualifies me from being a “good” mother.

My ever-looming illness, fraught with pain, nausea, and fatigue, taints all our interactions, and there is never a time when its effects are not felt. I rarely leave my house, at least not for extended periods of time, so our once-common neighborhood walks, visits to the local zoo and shopping trips are largely nonexistent now. I miss most of Lilly’s school events and extracurricular activities as well and am absent from nearly all family gatherings, where my husband must act as both father and mother.

I am keenly aware of the disappointment in my daughter’s eyes each time I tell her I cannot attend her latest awards ceremony or choir solo, and I note her frustration as she sits by herself in her backyard swing because I am too tired to join her. I witness her envy when her classmates receive the latest technical gadgets and toys and when her friends enjoy lavish vacations we cannot provide because of mounting medical bills and financial pressures. I watch her fret over my well-being when, as she consumes her dinner, I sip a protein drink. I recognize her fight to hold her tongue and show respect when I am worn down and unjustly scolding her for no reason other than my own misdirected anger. I am not unaware of the pain I cause my child nor oblivious to her hardships. If the “good mother” bar is health, then I am failing miserably.

But in my moments of clarity, when I drive my nagging guilt to the furthest recesses of my mind, I realize this is not the bar, and there is, indeed, room for frailty, mistakes and shortcomings. Perfection is not a requirement of good parenting; it merely demands love, effort, and the willingness to forgive, move forward, and try again.

There are difficult days – but there are also small, beautiful moments which define us and remind us we share a bond no illness can break. We share corny jokes and tell over-the-top stories. We watch the latest tearjerkers on home video and share reviews of books we have enjoyed. We sing and dance to “oldies” in the kitchen. We laugh together when Dad “just doesn’t get it” and when Lilly playfully teases him about his “outdated,” unrealistic expectations. We hold lengthy discussions about her newly-developed political and religious views and speculate about her future career and family life. We sit together silently, lost in our own thoughts, happy to be in the same room. I embrace her when a classmate brings her to tears, and she caresses my back when I am doubled over in pain.

My daughter feels my love, tenderness and support and believes that neither apathy nor lack of desire, but, rather, real physical limitations are at the heart of my shortcomings. She knows she means the world to me and that I would willingly sacrifice everything to further her happiness, and she sees in me a mother who endeavors to overcome daunting challenges and who strives to be the best parent and person she can be within the bounds of her physical limitations.

My role as a mother is to instill in my child a sense of self-worth, an independent spirit, compassion, respect for the dignity and value of others, a desire to impact the world in meaningful, positive ways and the ability to act with discernment in all matters of the heart, mind, and soul. Due to our circumstances, Lilly has faced adversity and understands people are unique, complex individuals who experience all manner of emotional, physical and spiritual challenges – who sometimes fail, despite their best efforts – and she has learned to forgive others and herself. She acknowledges the world abounds with cruelties and injustices, empathizes with those who lack the basic necessities of life, and gives of herself and her possessions to those less fortunate. She recognizes the beautiful souls around her confront uncertain futures, often fraught with pain and anguish, and offers kindness because of the heartaches she herself has endured. And as one who knows struggle, she is determined and tenacious, persists against formidable odds, and puts forth effort even after she has failed time and time again. She is a confident, caring, industrious, determined young lady with standards, morals and values beyond reproach, who sets and accomplishes goals and desires to make the world a better place. Isn’t that the goal of parenting?