When I was in seventh grade, a friend’s father died unexpectedly. Our small-town Catholic school arranged for the entire class to attend the funeral. The night before, as my parents readied for the wake, my mother suggested that I join them. Having never been to a wake, I asked her what you do there.
After she explained, I said, “No, our class is going to the funeral tomorrow.” The truth was, I didn’t know what to say to my friend.
When my mother returned that evening, she mentioned a couple of my classmates she had seen and added, “Patti asked if you were there.” She said it kindly and without judgment. But even though I shrugged off the comment at the time, like most of my mother’s gently taught lessons, I carry it with me still.
A few months ago, my college roommate’s husband died unexpectedly at 49 following a stroke. While I had long since learned the appropriate conventions, I still floundered. I knew nothing could alleviate her devastating pain, and yet I ached with wanting to show her my love and support. So I reached out to others for guidance. One colleague who had faced a similar loss shared two helpful insights: “It hurt so much that people were afraid to use Jim’s name.” And, “The second year was almost harder than the first because it hit you then that this was the rest of your life.”
Around the same time, two threads weaved through an online support group for those affected by Cystic Fibrosis. (Our seven-year-old son suffers from this disease.) One tongue-in-cheek post asked, “What’s the worst thing anyone has ever said to you about Cystic Fibrosis?” The second, though, came from someone asking for guidance: “What can I do to help my friend who has Cystic Fibrosis?”
These experiences morphed into this guide for family and friends. While many of these suggestions apply equally for (God-willing) treatable diseases, such as cancer, this guide focuses on the diagnosis of a child with a chronic condition—one that cannot be prevented or cured and which will last a life-time—such as Down Syndrome, muscular dystrophy, Lupus, type-1 diabetes, cerebral palsy, sickle cell anemia, cystic fibrosis, severe allergies, and epilepsy.
1. Seek to Empathize and Understand
“Welcome to Holland” provides a glimpse into the hearts of parents whose children suffer from a chronic condition. In the essay, the mother of a child with Down Syndrome explains the emotional journey involved by equating the diagnosis with an arrival in Holland—after having planned a trip to Italy:
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
Kingsley’s words resonate with many parents raising special children. For some conditions, though the emotion is the same, the destination differs. The land of Cystic Fibrosis is one of disease and, at times, is horrible. Children often spend several months out of every year in the hospital undergoing painful treatments and procedures, and, as the disease progresses, they struggle just to breathe. Yet, with the promise of a cure close at hand, there is also the hope that we are just on a very long layover, and will eventually arrive in Italy.
In trying to explain this paradox to friends, I share our journey as one of walking on the rails of life, preparing to send our son off at the appropriate junction, while we continue on to the end of our line. But there’s a problem: His track isn’t built yet. And while the crew is working furiously, we don’t know if it will be completed on time. Some days are simple and blissful. We walk along enjoying the sunshine and the scenery of life. Other days, we see the wreckage wrought on other children because the workers did not finish their line in time. Day by day, month by month, and year by year, the din alternates between the clanging of sledgehammer on steel and the whistle of his approaching train. While some days the whistle is deafening, most days it is barely audible. But it is always there.
Having family and friends glimpse this reality helps. Not because we want pity—we don’t. But we need understanding. As a Christian, I think of our Lord: He needed His disciples with Him during His agony in the garden. Our perfect God needed His imperfect friends to stay awake with Him. How much more then do we, fallen creatures that we are, need human understanding? Before turning to the practical, then—making meals, running errands, providing respite care—look inward. Meld your mind with theirs, to understand their heart, and thus be better able to comfort their souls.
2. Assess Your Relationship, and How Best To Support the Family
It is also important to assess the situation. What is your relationship, and what are your respective temperaments? If you are an immediate family member or a close friend, suggestions for what to say and do vary vastly from kind-hearted neighbors or co-workers. Thus, when I lamented my fear of burying our son, my closest friend’s interjection of humor—“oh,
Margot, you’re forgetting you’re an old mom, so you’ll long outlive Bobby”—was the perfect reply. Not so much, though, if it had come from a co-worker.
Here, then, you’ll need to work on reading your friend or family member. When you ask about the child’s health, does she light up and tell you the details of the last check-up? Does she elaborate on the forthcoming clinical trials? Or does she answer “fine,” and change the subject? Some parents cope by focusing on the good and sharing those details. Others dive into clinic research. And still others prefer no mention of the disease. If you are close enough to the parents, ask their preference. But if not, look for clues to guide you.
In doing so, remember too that chronic means forever. Absent a cure, the condition or disease will not just go away one day. Many chronic conditions are also progressive and thus the child’s condition will get worse over time. In turn, the parents will continually face new and escalating challenges: the first hospitalization, the first surgery, the first life-threatening allergy attack, the first talk of a lung transplant.
As one doctor put it to me early on when I was trying to process the emotional side of the disease, “Life is going to be one ‘freak-out’ after another.” To analogize: Consider that split second of panic when you can’t find your child in a busy store. Or receiving a late night telephone call when your newly licensed driver is late for curfew. Now imagine multiplying the number and variety of heart-stopping scenarios over, and over, and over again for the rest of your life.
This leads naturally to the question of depression and anxiety. Studies show that parenting stress related to caring for children with chronic illnesses is associated with psychological distress. You should know this when someone close to you faces a lifetime of caring for a special-needs child. You can be the best friend or relative in the world, but they may still need professional help to address the overwhelming demands of the situation. So if you notice your friend no longer dishes on politics, sports, the Royals (the other ones), or whatever her thing is, consider broaching the issue.
At the same time, don’t assume every tear or vent is a sign of depression, or that every precaution is a sign of anxiety. What might seem neurotic to you (no drinking fountains, dehumidifiers, hot tubs, or people with “little colds”), might well be the directives given by the medical team. Also, parents must often put on a brave face for their child (and sometimes for their spouse), and you might just present the first safe opportunity of release. Remember that today’s keyboard communication can’t always capture the mood of the person behind the text. Here, I am reminded of my friend’s concern when she asked how my day was and I responded “wash, rinse, repeat.” It wasn’t a sign of depression or even sadness: I was merely stating that my day was the “norm,” which, for us, runs like the commercial that aired a few years past rewinding the caregiver daughter’s day…“every morning, I get up at 5:00 a.m., I give my father his pill, . . .”
3. When Considering What To Say, Keep It Simple
“I’m sorry.” “I’m praying for you.” Simple. Direct. And safe. If you aren’t sure what to say—either upon first learning of a diagnosis, or later when the disease progresses and presents new challenges and heartaches—keep it simple.
The difficulty, of course, is that seeing someone hurt so deeply is hard. As a result, we want to redirect or retreat. That’s often when the less comforting words appear: “Well, enjoy him while you can.” (Said twice by two different people.) A better approach is to merely mirror what you hear. Or to respond with simple acknowledgments, such as “I know.” “I can’t imagine.” “That must be so unbearably hard.”
For example, a friend who visited about a week after our newborn’s diagnosis sat with me in the kitchen while I poured out my fears. When I wept, “I don’t want to lose my baby,” she cried too. Her gentle “I know, I know,” was all I needed. Sometimes we don’t even need that—silent companionship is often the most comforting response.
What to say depends greatly on your relationship. One close friend shared her epiphany that as horrible a disease as cystic fibrosis is, because it is a genetic disease, Bobby wouldn’t be Bobby without it. I had already had that thought too, and took comfort in it, because I loved my son exactly as God made him. But had I not thought of her point, or had it been jarring, the impact would have been lessened because she prefaced her comment with: “I don’t know if this is helpful, but it just dawned on me last night…”
This leads to another point. Much depends on your delivery. Prefacing comments with disclaimers is a wonderful way of sharing thoughts, especially when you don’t know what to say or how your words will be received.
I’ve often received little notes out of the blue from colleagues with whom I’m friendly but not “friends.” They inevitably begin with, “I hope you don’t think me out of line.” A perfect illustration is this note from a librarian I received recently: “I hope this doesn’t sound odd, but I think about Bobby often (and of course Mommy and Daddy!) and keep him, all of you, in my prayers.” Of course, I didn’t think it odd! It was a warm embrace.
4. Don’t Be Insensitive Or Judgmental
People also often assume that a strong faith diminishes the pain. This leads to comments such as, “Jesus must have loved you so much to share His cross with you.” While well meaning, and taken as such, such spoken sentiments are less than comforting—especially early on in the mourning process. Rather, it likely triggers a mental retort of, “Well, Jesus also prayed for God to take the cross from Him.”
On the other hand, a deeply faith-filled father figure once said to me, “You must often think this wasn’t fair of God.” I could honestly respond that I never felt that way, but rather thought it unfair that God would bless me with the gift of our son—something so wonderful that I did not deserve. But the recognition by someone so strong in his faith that I might struggle in mine was comforting. So remember that your friend’s faith does not lessen the heartache; it just makes living a lifetime with it possible.
Also, don’t volunteer stories of others with the disease who have died or are extremely ill. (“Oh, I’m so sorry your son has severe allergies. A lady I work with had a daughter allergic to peanuts and she died after someone forgot and gave her a cookie that had been put next to a peanut butter sandwich.”) Not helpful. A good guideline is to be honest but circumspect. If you are a doctor and a relative asks you point-blank what something means, answer truthfully and plainly, but there is no need to detail all possible complications.
One thing a prefatory comment won’t soften, though, is a criticism of parenting related to the disease. Under normal circumstances, today’s parents already face a barrage of criticism. Parents of special needs children do not need an added critique of all things related to their child’s chronic condition, especially since most people haven’t the slightest clue concerning appropriate care.
This was the case with one woman in a pediatrician’s office, who witnessed a mom giving her newborn with cystic fibrosis a few spoonfuls of applesauce before a bottle. The woman snidely and loudly proclaimed to the waiting room that “moms sure do push their kids to solid foods too soon these days.”
Unbeknownst to her, however, children with cystic fibrosis must swallow enzymes before every meal or they will suffer horrible pain, be unable to gain weight, and risk a dangerous intestinal obstruction. And to prevent the enzymes from burning the baby’s esophagus and stomach, they must be coated with food of a certain acidity. Thus, the mom “fed” her two-week-old baby applesauce, per doctor’s orders. So moms of the world, bite your tongues.
5. Know Your Place: Offer Advice Gently
On the other hand, if you are close to the caregiver and you believe a decision is a poor one or that there might be a better option, ask questions instead of criticizing. For instance: if the parents decide not to attend a family gathering after discovering a relative has a cold, saying “well not everyone agrees with your approach” crosses the line. Asking if they would be comfortable if seated in the dining room with the cousin in the kitchen, however, would be fine.
But then graciously honor their decision—even if you disagree with it. Most parents of children with medical condition have limitations based on doctors’ recommendations, wisdom shared by other caregivers, and past experience. And most parents seek not to impose on others, but merely to discreetly make decisions in the best interests of their child and family.
Thus, if the doctor tells them to avoid crowds during flu season, they will have to decline the invitation to a birthday party at the local in-door amusement park. They won’t ask you to move the event and would be mortified if you did. At the same time, they may ask their family if anyone is sick before attending a gathering so they can decide whether to attend. Unfortuately, several mothers have shared how their relatives say “no,” but upon arrival encounter the aunt who thought her little cold wasn’t anything that should keep them away. That is the parents’ decision to make, and it should be respected.
So too should their privacy. Don’t share medical information about someone else’s child on social media!
6. Know When You Need To Apologize
Should you cross that line, what to say? “I’m sorry.” A dear friend once made an off-hand comment extremely critical of a parenting choice we had made in relation to our son’s medical care. I was very hurt at the time, but honestly no longer remember what it was—because a little later she called back, and said simply, “I was out of line. I’m sorry.” Not only did that alleviate my hurt feelings, she also provided a perfect example for how to handle my own failings. Accordingly, I hereby now publicly apologize to those moms I silently criticized in my pre-mommy days for plopping their little ones in front of the television.
On the other hand, don’t dwell on a passing comment that in retrospect could have been hurtful. Here I think of the Walgreen’s pharmacist who has gone above and beyond the last seven years. A few years back, while she was giving me my flu shot, we were talking about a local tragedy in which a three-year-old had wandered off and drowned. “I can’t imagine how horrible it is to lose a child,” she said. It was a completely natural and true sentiment. But I could tell that after the words left her lips, she remembered that she said it to someone who could well face that reality. And yes, it hurt. But not because she said it. Because it is our realty.
While I remember the comment, my recollection is never on the inadvertent pain, but on the overwhelming kindness she has always shown me. Heck, I even say things that inadvertently cause pain, like last week when my son asked when I was going to retire, and I said, “moms never retire.” But as the words escaped, my mind jumped to the reality that if I died, I wouldn’t have my mom “job” any more. And it hurt. Horribly. You are no more responsible for our pain than we are. So let it go. We do.
7. Use Your Strengths and Expertise To Help
Beyond words, there is much you can do to show your concern and love for families caring for special needs children. First things first: Learn about the medical condition. While you might think you understand a disease, there is likely much you don’t know. For instance, did you know that children with Down Syndrome have an increased risk of developing childhood leukemia? By researching a chronic medical condition you will be better able to empathize with the parents. You will also be more attuned to the demands the condition places on the parents and likely future challenges the family will face.
The best place to learn about a disease is a national support organization, such as the Cystic Fibrosis Foundation, National Down Syndrome Society, or Lupus Foundation of America. You might also consider attending a support group meeting or event. One amazing friend I know attended a local support group meeting after learning her college roommate’s unborn baby had been diagnosed with Down Syndrome. What an awesome gesture of love and support!
Online forums are another great place to turn. Here you will find folks immersed in the myriad of issues confronting people with the same diagnosis. There is no better place to get direct and helpful guidance. For instance, if someone asked how to help parents with a newborn with cystic fibrosis, I’d readily volunteer, “buy them a case of oral syringes, disposable underpads, and a few extra nebulizers.” Only a mom who has lived through the first three months would know why these items would be invaluable and also know that none of the medical personnel will think to share these pointers with the new parents.
You might also volunteer to reach out to others on the forum about any questions the parents may have. While the parents could obviously do this on their own, the time demands earlier on are overwhelming and it often takes some time for parents to gird themselves to read about the more serious complications that could await them. You can help by serving as a filter for information they need now.
Your strengths can still help immeasurably, especially in the early days. Consider, for example, the friend who shares that she is overwhelmed with keeping track of medicines and treatments, food intake and stool output (something the medical staff drilled us on monthly for our dear son’s first year of life). Prepare an Excel spreadsheet for the parents as best you can and update it with their corrections. And just do it—don’t ask. Preface it upon presentation with, “I don’t know if this will help or not, but I threw together this chart.”
On the other hand, if your friend is Type-A, she likely has already made three variations of said spreadsheet, and could benefit more from a grocery store run.
Offering your professional expertise is another welcome help. A friend who is a CPA joined her friends—parents of a newborn with Down Syndrome—to meet with their financial advisor as they began the difficult discussion of providing for all three of their children’s futures. Lawyers have many opportunities to help too, from providing estate planning advice and interpreting health insurance policy language, to assisting with FMLA leave issues or special educational accommodations. For those with a medical background: consider tracking research related to the condition affecting your friend or family member and sending them occasional updates of the promising developments.
8. Connect Parents With Others, and Offer Concrete Assistance
Another thoughtful gesture is to offer to connect the new parents with others who have experience with the condition or disease. Within a week of our son’s diagnosis, a schoolmate offered to connect me with her adult sister who has cystic fibrosis; a friend emailed me contact information for her friend who has a child with cystic fibrosis; a co-worker put me in touch with his brother-in-law who was a respiratory therapist for a cystic fibrosis clinic; and another friend arranged for me to speak with a leading cystic fibrosis doctor at Cincinnati Children’s Hospital.
Beyond the helpful information those with actual experience with the disease provide, knowing the people sharing their insights and hopes is a friend of a friend provides additional comfort. And it was wonderful to be on the giving side a few years later, when I was the experienced mom connected by friends with other new parents facing a diagnosis.
A few catch-alls here, prefaced with the oft-provided and wise advice of offering concrete help: Rather than suggesting the parents let you know if you can do anything, tell them you would like to arrange a meal schedule for people to drop off dinner and ask if they have any food preferences or limitations. Instead of offering to care for their children if they ever need a break, suggest that the couple enjoy a dinner this Friday while you watch their children.
Other ideas: Grocery runs, pick-up the dry cleaning, mow the lawn, shovel their sidewalk, drop children off at school (or pick them up), or retrieve empty garbage cans. When caring for a child with a chronic condition, finding enough time in the day to do the “basics” of living is often difficult. Having even an occasional break from the “normal,” lessens the day-in and day-out burden of the extra.
9. Keep the Family In the Loop
If you don’t have relevant expertise, know that it is just as touching to receive a little note in the mail on occasion. My friend Monica will send me a note every few months just updating me on her life and inquiring on ours. Being included in group emails and plans—even though I no longer have the flexibility to travel for football or spa weekends—also means so much: caring for a child with a chronic condition can be extremely isolating and these notes make me feel more connected.
Likewise, hours of daily medicines and treatments (and, for our son, frequent GI complications), leaves our seven-year-old homebound much too often. But he feels more linked to the outside world since another dear friend, “Aunt” Cathy, began faxing him daily hand-drawn cartoons featuring his favorite animals—birds and pigs.
Other friends have sent me newspaper articles, or reflections in various periodicals, and even books they think I might enjoy. And still others have remembered birthdays with donations to the Cystic Fibrosis Foundation or organized fundraisers to support research for a cure. Such gestures are sure to envelop your friends and family in your love, just as they have my husband and me.
10. Support and Encourage the Parents
And speaking of spouses—above all, support your friend’s marriage. A lifetime of caring for a child with a chronic illness takes its toll, and marriages often suffer. While the rate of divorce among parents of special needs children isn’t the 80 percent often bandied about, it is higher than that already too high average. Offering to provide respite care so parents can have some couple’s time is one way to help.
But even more simply: Help the parents see the good in each other. Compliment the spouses to each other (and your own to them as well—it is often contagious). “Wow, your husband does laundry and sterilizes the medical equipment before work so you can get some extra sleep. That’s so awesome.” (Yes, Bob, that is so awesome, in case I haven’t told you that enough!) But above all, don’t ever put a spouse down. Life is hard enough for them without having their relationship further shaken.
And finally, pray. For our children and for us. We do and it sustains us…another gently taught lesson from my mother that I carry with me still.