In 1990, my mother wrote an article for the Journal of Contemporary Dialysis and Nephrology [1] instructing parents with chronic illness on how to help their children cope. At the time, I was 5-years-old, and my mother had been struggling with scleroderma for five years. Though she fought chronic illness for the rest of her life, she was never defined by her illness. In fact, her life was filled with love, adventure, humor, travel, friendship and generosity. Sadly, my mother passed away last October. 

My mother instilled in me the importance of being a strong, independent woman, and never stopped encouraging me to follow my dreams. Most of all, she taught me, and all of those around her, how to celebrate life and make the most out of each minute. This was before the “YOLO” phenomenon was popular. I grew up admiring my mother’s resilience, courage, strength and ability to light up a room. Though she was not formally trained as a therapist, she informally counseled numerous people  —  patients, friends, family, doctors  —  on how to live a meaningful, genuine life. Perhaps it was her giving spirit and incredible ability to maintain a realistic yet optimistic perspective in the midst of hell that influenced my decision to become a clinical psychologist.

Months after my mother passed away, I came across an article that she wrote on helping children cope with a parent with chronic illness. As my mother’s daughter, and now a clinical psychologist, I read the article with awe and a sense of comfort at her intuitive sense of what I, and children in general, need. She did not need a Ph.D. to provide invaluable advice to parents.

In honor of my mother’s memory, I am writing this article to share her wisdom, as well as highlight how it impacted me as her child. The original article is reproduced below with added responses to each of her five main points. My responses are written from the lens of a child of a parent with chronic illness, who also happens to be a clinical psychologist. Like me, about 10 percent of children grow up with a parent with chronic illness [2]. While there is a paucity of research in this area, there is evidence that for some children, having a parent with chronic physical illness increases the risk of having internalizing or externalizing behavior issues. This is particularly true for children who have trouble adapting to their parent’s illness and all that comes with it. My mother’s suggestions are in line with helping children adjust to the challenges and demands of having a parent with chronic illness. My hope is that together our words can continue to help families cope with chronic illness and make the most out of life.

Original Article by Ellen Susan Bromberg Skolnick

The ‘80s have given women a series of choices. In today’s world it is acceptable to want to have a career, have a child, do both, or put an established career on hold to become a full-time mother. For some, however, the choices are complicated by having to raise a child and cope with a chronic illness at the same time.

On October 27, 1985, our daughter Rebecca was born. In January 1986, I was diagnosed as having a connective tissue disease. The joy of our new baby was overshadowed completely by the fact that now my husband and I were going to have to learn to cope with a chronic illness.

During the next three years, my health deteriorated, eventually affecting my kidneys. As Rebecca turned three years old, my kidney failure had progressed to a stage where I needed to start dialysis.

My hope in writing this article is to aid other parents who are trying to successfully incorporate illness into a normal lifestyle. During the course of my illness I have been hospitalized many times. The hospitalizations have ranged from two days to three months. Despite the stress, depression, and frustration that accompanies coping with a chronic illness, my husband, Robert, and I have managed to raise our daughter in what we feel is a healthy, happy atmosphere. I have taken the following suggestions from personal experiences. I believe that this is a basic formula, although there may be different approaches to its application:

1. BE HONEST — While it is not necessary to go into detail about your illness, it is important to explain to the child that, because of your health, you are a little different from most other parents. If you use a cane or wheelchair, tell the child why: “Mom needs help walking,” etc. Always tell the child the truth – that you’re going to the doctor or going to the hospital – rather than telling the child that you’re going on vacation or to visit someone. Children, like adults, respond best to honesty.

· Rebecca’s Response: I cannot stress enough how much I appreciated this honesty. Firstly, I would have been suspicious if my parents hid their destinations or the truth about my mother’s illness. I would have also felt disconnected and anxious. There were times that the truth was hard to hear. I had to learn how to cope with the fact that my mother may not make it through another surgery or hospital visit. However, if I did not know the truth, I would not have had the opportunities I did to tell my mother how much she meant to me, or to fully appreciate every moment I had with her. This does not mean that we didn’t argue at times, as children and their parents do. But underneath it all, I never stopped feeling lucky to have her in my life.

2. EXPLAIN YOUR LIMITATIONS, BUT CONCENTRATE ON YOUR STRENGTHS — If you cannot lift the child, say, “Mom can’t pick you up right now, but you can sit close to me.” Allow the child to get close to you even if it means allowing him/her to sit on the bed in order to play with you. Try to be as positive as possible. “I don’t know if Mom can open the jar, but I’ll try.” Try to play with the child as much as you can. Reading is a great way to communicate and feel close. Even watching an occasional video together is a good activity. Encourage role playing using a favorite toy or doll. This will allow your toddler to more easily express feelings about your situation.

· Rebecca’s Response: Concentrating on her strengths was helpful for both me and my mother. This is likely a big part of what made my mother feel and act like a human and not a patient. Focusing on her capabilities also encouraged her to push herself and become stronger. Furthermore, there is some evidence that focusing on positives can reduce the potential effects of parental chronic illness on children’s internalizing issues [3]. It did not bother me that my mother couldn’t pick me up or chase me around. My needs were satiated by her attention, humor and desire to be with me in whatever way she could. In some ways, knowing that it was not always easy for her makes it more meaningful.

Most children want attention and closeness from their parents. If my mother got swept up by her ailments, she may have spiraled into a depressive state that would have taken her away from me and made it harder for her to engage in playful activities, let alone enjoy them. Parental depression is associated with internalizing problems in children [4] and can have a negative impact on the parent-child relationship. Having a strong parent-child relationship helps families adapt better to stressors, feel more satisfied and allows the child to adjust to the demands of having a parent with chronic illness [5].

3. ALLOW YOUR CHILD TO BE A CHILD — Encourage your child to play; other mothers or caregivers in the neighborhood will most likely assist you whenever asked. Allow your child to sing, dance, and be free (to a point). But also remember that a child is just a child and, as such, also needs a certain amount of discipline in those early years. Despite your limitations, you are still a parent and need to instill that discipline.

· Rebecca’s Response: As a child of a parent with chronic illness, it is very challenging not to become parentified or to devote your time to taking care of your sick parent. While this may be inevitable to some extent, when taken too far, it can lead to more emotional distress and behavior problems [6].

I cannot thank my parents enough for encouraging me to play, participate in after school activities, have friends over and to have my own life. My mother’s inclination to keep me involved in numerous activities was in line with research showing that extracurricular interest can be a protective factor against the potential negative effects of parental illness, and can help children build resilience [7]. In fact, it has been suggested that allowing children to engage in extracurricular activities can help them regain a sense of control and normalcy in the midst of stressful circumstances [8].

At one point during my young adulthood, my mother apologized to me for “not giving me a childhood.” I reassured her that I had a full childhood that I mostly looked back on fondly. Of course there were stretches of time that were challenging, such as my mother missing my 7th birthday because she was in the hospital, and a consistent buzzing fear about my mother’s health in the back of my mind. There is no question that having a mother with chronic illness forced me to grow up faster than most to some extent — I knew what death was as soon as I could comprehend it; I knew it was possible that my mother might not always be there; I saw my family members experience intense fear, and I was talking about serious diseases at the age of 4. However, these experiences also helped me to appreciate what is important in life, and perhaps to live more fully as a result. Though I had to deal with “grown-up” issues as a child, I still maintained an active childhood of play, fun and friends. I was pushed to become very close to a number of friends, and truly cherish those relationships, which I believe has been an invaluable part of my childhood and beyond.

4. DISCUSS YOUR MEDICAL CARE AT A LEVEL THE CHILD UNDERSTANDS — As I already mentioned, it is important to be honest. If you know ahead of time about a hospital stay, explain to the child that you are going to the hospital. Tell the child what a hospital is, “A hospital is like a large doctor’s office, but people sleep there.” Ask the child to give you a favorite toy or stuffed animal to take with you to keep you company. Take a picture of the child with you and give a picture of yourself to the child each time you are hospitalized.

Try not to give the child too specific a time frame for your return. Simply tell the child that you will come home as soon as possible.

Allow the child to visit you in the hospital if it is permitted. Prior to the child coming, explain the circumstances, such as, “Mommy has a tube in her arm,” or “Mommy is in bed.” Permit the child to sit on the bed or sit in your lap if you are in a wheelchair.

Try to be as positive as possible during the visit. Give the child a small gift – maybe a flower from your own flower baskets. And make sure the visit is no more than 15 or 20 minutes, as this will keep you from being tired out. Also try to call home and talk to the child every day.

Chronic illness plays tricks on us. Occasionally, hospital visits are emergencies and involve intensive care. If this is the case and no communication can occur between you and the child, make sure that your spouse, a grandparent, or caregiver talks to the child about you: “Mommy is very sick, but we’re all going to pray for her to come back home soon.” Or, “Let’s draw a pretty picture for her room.”

Always keep your medications out of the child’s reach. However, explain to the child that you are taking medicine to stay well, being careful to point out, “This is only for sick grown-ups. You are very healthy and this medicine will hurt you if you take it.” Never refer to medicine as candy or sweets.

Try to turn an uncomfortable situation into a positive one for you and your child. For instance, initially, I was dialyzed through a temporary Y-catheter inserted into a vein along the collarbone. Prior to Rebecca’s visit, my husband and parents prepared her by telling her about the catheter. Her only comment after seeing me was, “Those look like antennas, Mommy.” A “temporary” catheter still serves as my hemodialysis access, and I showed her this upon coming home and explained its function. On one of my hemodialysis treatment session days, I brought Rebecca to the unit, as was prearranged with the nursing staff. She was shown the machine, tubes, and the process of dialysis.

Dialysis is a difficult, depressing, and a physically draining experience. However, the more positive the approach you take, the more your toddler will accept the situation. If at all possible, schedule your treatment during hours when your child is in school or play group. This will ensure that the child is kept busy while you undergo treatments.

· Rebecca’s Response: I am so appreciative that my family took the time to explain my mother’s situation and circumstances in a language that I understood. It helped me feel included and less anxious knowing what was going on. In fact, there were times that doctors tried to hide things from me or keep me out of the room, and those were the worst times that I remember. While of course it is not appropriate to tell little children every detail, it is extremely important to help them understand and get their questions answered. Research has shown that a child’s appraisals of the uncertainty and gravity of their parent’s illness have a large impact on the child’s psychosocial development [9][10][11]. When a child understands the facts of the situation, they are less likely to unnecessarily catastrophize, and are more able to cope effectively.

My mother went above and beyond in explaining her situation in an understandable way. Around the time the original article was published, my mother came to my kindergarten class and talked to us about kidneys, dialysis, scleroderma and anything we wanted to know. People thought my mother was “so cool” and “interesting” rather than “scary” or “sick.” This was tremendously helpful in giving my peers a snippet of not only my mother’s condition, but also my home life and experiences.

In addition to understanding my mother’s circumstances, it was helpful to contribute positively by giving her one of my stuffed animals, drawings or photographs when she entered the hospital. This helped me feel connected to my mother and communicate that I was always there with her and for her, even if I was not physically present. I am told that having photographs and items of mine also helped motivate her to keep fighting. Even as an adult child visiting my mother in the hospital last year, I did what she taught me to do — I brought photographs of our family, her dog, a stuffed animal that looks like her dog, and anything else I could think of to help keep her strong and communicate that we were there for her. I also stayed connected to my mother throughout her hospital stays by picking a piece of her clothing or jewelry to wear and hold on to. In some ways, it was a reminder of her presence. In other ways, it was a hopeful sign that she would return.

Overall, this idea of discussing your medical care at a level your child understands is important for helping the child feel included, connected to you and to also not be more afraid than necessary during potentially scary circumstances. As my mother points out, explaining her catheter and medications, among other treatments, helped to somewhat normalize the situation and reassure me that all of this was to help her feel better and stronger. I became very accustomed to watching my mother take 30 pills per day for the rest of her life, and did not think twice about it until I had to explain it to someone else. My mother had an incredible ability to accept her situation and live life with chronic illness as a part of it, rather than letting it define her. Taking medication in public, talking about her circumstances and not letting dialysis get in the way of seeing me, traveling and being herself helped her to continue having some semblance of sanity in the midst of a chaotic situation.

5. AVOID DISRUPTIONS IN YOUR CHILD’S ROUTINE ACTIVITIES — Above all else, it is imperative that the child’s routine remain as stable as possible. Children react favorably to familiarity. The child should stay in school (with the teacher aware of the situation). Play dates should be kept, holidays celebrated, birthdays recognized. All of these take organization by the caregiver and other family members, but all work toward helping the child cope with an ill parent.

· Rebecca’s Response: Children of chronically ill parents have been found to miss more school days than their peers, which increases the chances of worse academic performance [12]. Helping your child attend school regularly can increase their chance at success, and keep their performance in line with that of their peers of parents without chronic illness.

Furthermore, routine helped me throughout my childhood, and continues to be the way I maintain sanity and balance. There is so much that we cannot control and predict. My mother’s hospital visits, course of illness, health and death were among the most unpredictable things in my life. I am a very serious planner with a structured, color-coded calendar and a regular eating, exercise and sleep routine. This has been most helpful when having to deal with the uncertainty of my mother’s circumstances and the stress, fear, sadness, anger and hurt that comes with coping. My mother’s emphasis on having me maintain routine also helped me go through high school, college, graduate school and work without feeling intense guilt for not being there with her 24/7. She helped me believe that it was ok to continue to live my life, grow up, travel abroad, pursue the career I wanted and develop without having to feel like I had to be tied to her constantly in case her illness took over. I hope that watching me pursue my dreams also helped her stay strong and proud of the daughter she raised.

Original Conclusion

In conclusion, a chronic illness is what it implies – long-term and seemingly unending. It is difficult – almost impossible at times – to cope with the pain, anxiety, and anguish that comes with being sick continually. But approaching your illness as would a loved one in your life helps in accepting any chronic illness.

If you have a child, consider it a blessing, not a burden. It is not the child’s fault that you are sick, and therefore, the child should not be punished for having an ill parent. Have patience with your toddler; by trying to make a happy environment for your child, you will find yourself coping as well. Your child’s innocence can be an inspiration in the oftentimes cruel world of illness.

Rebecca’s Conclusion

Overall, if your family is faced with a parent with chronic illness, there are ways to build and maintain a sense of stability, balance and even joy in the midst of chaos and hell. My parents raised me in a healthy, happy, atmosphere by emphasizing honesty, strengths, allowing me to be a child, keeping me informed and maintaining routines when possible. While having a parent with chronic illness forced me to grow up quickly and face the prospect of my mother’s death regularly, I was also able to be a kid, go on play dates, participate in fun after-school activities, and build long-lasting friendships. Furthermore, I was able to work hard in school and build the career I wanted while continuing to feel close, included, and connected to my mother. I hope that our perspectives help families cope effectively with chronic illness, remain close to each other through it, appreciate what is important in life and live more fully as a result.

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[1] Skolnick, E. (1990). Helping your child cope with a chronically ill parent. Journal of Contemporary Dialysis and Nephrology, 11(7), 27, 30.