Supporting a Heart Warrior Family: How Can I Help?
When a family is confronted with a serious health diagnosis for their child like a congenital heart defect (CHD), it can feel like the whole world has suddenly shifted beneath their feet. They are often thrust into a new way of life that they have no previous experience with, and they need support as they navigate what that means – not just on the day of diagnosis, but throughout their heart warrior journey. When a chronic illness hits a family we care about, it can be daunting to know what to say or do and when to say or do it. The last thing we want is to bring more distress into an already difficult situation!
Lisa is mom to Ben, 24, and Maddy, 20. Maddy was born with DiGeorge Syndrome and Tetralogy of Fallot and has had three open heart surgeries and hundreds of admissions to Children’s Healthcare of Atlanta hospitals in her young life. William Border, MD, pediatric cardiologist at Children’s Healthcare of Atlanta Cardiology, is Maddy’s cardiologist who has monitored her heart condition over the years. Lisa also experienced the loss of a spouse when her husband and father of her kids, Dan, died in 2018. Her life experiences with loss have taught her about reaching out to others with the compassion and unique empathy that parents of heart warriors often share, although it has come at a high price.
Lisa says one of her biggest takeaways has been to lean into your connection with the person who is facing a crisis, take their lead in processing the diagnosis and refuse to allow awkwardness to keep you on the sidelines. Some tips that were meaningful to her as a parent of a medically fragile child that she now implements with others going through hard things include:
Don’t ask, just do.
Anyone who’s been through something hard has heard this: “Just let us know if you need anything.” The heart behind the statement is on point, but people reeling from a frightening diagnosis or deep personal loss rarely know what they need, let alone feel comfortable asking for it.
Lisa says the things that have helped her family most as they were in and out of the hospital and medical crises with Maddy were the small, practical ways to help such as gas and food delivery gift cards, fresh fruit dropped at her door, paper plates, coffee or even toilet paper! She most appreciated things that made her family’s lives a little easier during hospital stays. She notes that the parent staying at the hospital doesn’t have much room to keep items like heavy books or bulky blankets, so be mindful of what will be helpful and not burdensome. Don’t expect a response from parents in crisis times. Let them respond in their own time. Finally, everyone has something they’re good at, an area of expertise or passion. Tap into that when coming up with ideas for things to do.
“You may say the wrong thing, but you can never go wrong with doing something,” Lisa said.
Follow their social media.
When Maddy was born, the mode of communication was group email chains. Now many parents choose to maintain a CaringBridge page or use another social media channel to keep people updated on their child’s progress. The benefits of using social media in this way include keeping caring supporters updated on how your child is doing and any needs you may have. It also gives parents the ability to disclose information at their own pace and comfort level, limiting the number of phone calls, text messages, pointed questions and advice, which can be a huge emotional energy savings for parents of chronically ill kids.
Treat people as individuals.
No two people deal with trauma in the exact same way. We approach it from our unique perspectives, life experiences, and personality types. Respect a person’s individuality and privacy and be patient and willing to allow them to process in their own way. Offering up advice, similar life experiences or connections with people “in their shoes” – especially too soon – is not always welcome or appreciated. Instead, understand that they will tell you things when they’re ready, based on your relationship, and it’s more valuable to simply listen with a compassionate heart. Follow their lead in conversation and allow it to be organic.
Remember who they were before (and still are)!
While it can feel all-consuming at times, being the parent of a medically fragile child doesn’t have to become a person’s entire identity. Lisa says she appreciates those people in her life who connect with who she is outside of being Maddy’s mom.
“Foster the original relationship and talk about the things you usually talk about,” Lisa said. “I have a thousand other things that I am, and my friends can take me out of the hospital in my mind and heart without me actually physically leaving.”
Keep inviting them.
Don’t assume that people with chronically ill kids can’t (or don’t want to!) still participate in life. They may not be able to plan to attend social events in advance, but they can sometimes do things spontaneously, like grab a walk around the neighborhood or a cup of coffee and a chat.
“Always send the invite,” Lisa said. “If they can’t, they’ll say so but don’t stop inviting them.”
Don’t forget the siblings.
When Maddy was born, Lisa and Dan had a 4-year-old at home. Maintaining a sense of normalcy for Ben was important to them as they navigated their daughter’s health issues. They were intentional over the years about keeping teachers and the families of Ben’s friends informed about what was going on at home. For example, sometimes it just wasn’t feasible to turn in an assignment on time if they’d been at the hospital all week. They kept him involved in soccer to provide consistency and a physical outlet to burn off some of the pressure that can build up. Reaching out and offering to help with siblings is often a meaningful and appreciated way to help. In their case, the coach of Ben’s soccer team, who is also the family’s neighbor, took him to practices and games for a season, taking the pressure off his parents to find him rides when they needed to be with Maddy.
“The bottom line is you still want to be you. What’s going on with your sister or brother is only part of your story,” Lisa said. “Don’t stay away because they really need that attention, normalcy, and a healthy diversion from the stress.”
It’s a marathon, not a sprint.
Caring for a medically fragile child is a lifetime calling. Although the needs are different now from when Maddy was born, she and her family continue to need support and acknowledgment as she enters each new phase of life and medical challenges. Keep reaching out and checking in with families.
Don’t disconnect.
Lisa says sometimes when people don’t know what to say, they simply don’t connect at all, which can leave parents feeling isolated and unseen. Take the pressure off yourself to do or say the perfect thing at the perfect time and simply remember that they still want to do all the normal “friend stuff” that you’ve always done together.
“When they come to your mind, always send the text, make the phone call, or send the email. Don’t hesitate. If they can’t respond, they won’t, but you’ll never regret reaching out.”
Related:
10 Creative Ways to Help a Family with a Serious Diagnosis
Lisa Ringenberg Harmon is an integrative nutrition practitioner helping those who seek whole health through functional medicine and lifestyle change. She maintains a Facebook page called Love for Madison with updates on Maddy’s life and health. Lisa remarried in 2024 and has two stepsons. Her son Ben is studying for his master’s degree in Intelligence, and Maddy continues to thrive and is loving being little sister to three brothers.
Erica Rountree is a freelance writer, editor and marketing professional. She writes a Substack newsletter called It’s Still Beautiful Here that was born from a CaringBridge blog she kept as she navigated the grief of losing her husband and daughter in 2021. Her daughter Cate is 23 and recently started studying Physical Therapy at Georgia State University.
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