Why Parents of Chronically Ill Children Deserve Respect

The parents of chronically ill children do more than their fair share.

Posted Mar 19, 2015

A recent mishap my six-year old daughter suffered at school—a laceration to the head which resulted in stitches—brought the two of us to the ER and me to an epiphany. As my little girl lay on the hospital bed and screamed in pain, I was right there with her as the physician sewed a small part of her scalp back together. I was with her physically, crouching down to her level and sustaining eye contact throughout; I was with her emotionally as I matched her distress note for note. Simply put, it tore me up inside to see her in such pain. As I drove home with her and we both felt the pleasure and relief of a quick return to normalcy, I couldn’t help but think of how so many parents experience the heartbreak of seeing their kid in pain on a regular basis—without such ultimate relief.

I reflected on parents who have children with severe epilepsy or cystic fibrosis, as well as those who have children with cancer and other illnesses that bring frequent pain and require regular treatments. I thought about parents of children with rare genetic disorders or physical defects, parents who must watch their children learn to live—and be happy—while spending summers in the hospital or winters recuperating from major surgeries. For those of us who don’t live this experience, we cannot know the emotional wear-and-tear that seeing their children suffer causes.

And think for a moment about the waiting. Most of us huff and puff about waiting for a half-hour in the waiting room to see our doctor, but think about the total sum of hours the parents of chronically ill children spend waiting in doctors' offices, physical therapy centers, specialty clinics, and hospitals.

Waiting, of course, pales in comparison to other challenges these parents face, including having to battle insurance companies or oversee their children's medication compliance. Bottom line: These parents deserve real acknowledgment for the sacrifices they make as they meet the unique needs of their children.

A client of mine had a daughter who was sick with leukemia, and I was inspired by the make-the-best-of-it attitude my client wore most days. At the same time, I also saw the hurt and disappointment. I saw her carry a beneath-the-surface sadness that her child was forced to adapt to a world that has been harsh and unrelenting in its challenges. I believe we all come to grips with a fact we’re all told from a very young age: Life is not fair. But as you get older, I believe you come to realize that it’s even less fair than you'd originally thought.

What can we do to help these parents?

My heart goes out to the parents of children who face severe medical challenges. For you to love and care for your children is a testament to your strength and resolve to be there for your children no matter what. Perhaps the parents of chronically ill children are modest, suggesting that it's not necessarily amazing what they do—it's my kid, I do what I have to do—but parents of chronically ill children deserve an awful lot of respect for everything they do.

My point is not to extend pity or excess sympathy because that's certainly not what these parents need. One lesson we all must learn is that the parents of chronically ill children have no need for excessive sympathy or to be patronized as if their lives are nothing short of suffering. But every parent can sometimes use an extra hand—especially these. If you know any parents with chronically ill children in your community, you can show respect and empathy for them by offering to take their child to an appointment or two, or to ask them, "What can I do to help out this week?"

It's not all bad.

It's important to note that research suggests that some unexpected positive benefits may be derived from parenting such children, so this unique experience is not all pain and sorrow. In a study by Barakat, Alderfer, & Kazak (2006) of adolescent cancer survivors and their mothers, 86 percent of mothers said that cancer “had a positive impact on how they think about their lives.” It makes sense, too, that strengths emerge from getting through challenges.

But there are risks for the parents.

According to a 2014 study of children with cystic fibrosis, the parents of these children frequently suffer from mental health issues (Duff, Abbott, Cowperthwaite, Sumner, Hurley, Quittner, & TIDES-UK Group, 2014). Specifically, the study evaluated approximately 1,000 mothers and 182 fathers of children with cystic fibrosis, and they found that depression and anxiety levels were high among these parents. Specifically, 30 percent of mothers met the criteria for depression, and approximately 55 percent of the children’s primary caregivers were anxious. Those numbers are high, underscoring the need for more social supports for this population of parents.

Social networks can offer support.

So, what social networks or organizations are available to the parents of chronically ill children? Caregiver Action Network has a website that leads parents and families to a host of helpful resources, including the Family Caregiver Form and Peer Network, a network that consists of volunteers across the country who help families in need of support (www.caregiveraction.org). The organization Family Voices works to provide resources to the families of the more than 10 million children who have special health care needs, and the organization’s website has a variety of resources and tools that parents can use (www.familyvoices.org). Organizations like these can make an enormous difference in the lives of challenged families.

References

Barakat, L.M., Alderfer, M.A., A.E. Kazak (2006). Posttraumatic growth in adolescent survivors of cancer and their mothers and fathers. Journal of Pediatric Psychology 31(4), 413–419.

Duff, A.J., Abbott, J., Cowperthwaite, C., Sumner, C., Hurley, M.Aa, Quittner, A., TIDES-UK Group (2014). Depression and anxiety in adolescents and adults with cystic fibrosis in the UK: A Cross-Sectional Study. Journal of Cystic Fibrosis, 13 (6), 745–753.