When you first learn your child has a serious illness, the range of emotions is overwhelming. “Everything changes in that moment,” says Gwendolyn Messer, MD, board-certified pediatrician and child and general psychiatrist, and division head of Child and Adolescent Psychiatry at Cooper University Healthcare. “You had a certain vision for your child’s life, and now it isn’t how you thought it was going to be.”
The resulting grief can be difficult to navigate. “We know we have to assemble the medical team for your child, but what sometimes gets missed is what it all means to you as a parent,” says Messer. “But it’s essential to acknowledge your emotions. If we pretend everything is OK, our family and relationships will be more negatively impacted in the long run.”
A way to begin processing your grief is to accept that this is your new normal as a family. “This doesn’t mean you’re OK with it,” says Messer. “Acceptance isn’t about giving in. It means you’re acknowledging that this is what’s really happening so you can move forward.”
There’s no road map for what works best for everyone, but these tips may help you find the support your family needs:
EDUCATE YOURSELF
But resist the urge to consult Dr. Google before you even leave the doctor’s office. “Try to use restraint and not read everything you find on the Internet,” says Kelly N. Moore, Psy.D., director, Center for Psychological Services at Rutgers University. “The information may be outdated or not even apply to your child. Every case is different.”
Moore’s son was diagnosed with a chronic illness as a baby. “If I had read and believed everything out there, I would have been overwhelmed,” she says. Instead of general medical websites, she suggests visiting websites focused on the specific condition, such as Autism Speaks or the American Diabetes Association. Your medical team also can guide you to reputable information.
FEEL WHAT YOU NEED TO FEEL
It’s OK to feel sad, fearful and angry at the world, the doctors, other people with healthy kids, or even your own family members. You may be surprised or ashamed for having these thoughts. “Parents often don’t want to admit these kinds of emotions,” says Messer. “But avoid judging yourself. These feelings don’t mean anything bad about you.” These are normal emotions as you’re processing your grief.
Parents also often experience guilt, especially when it’s a genetic condition. “I was angry with myself for not knowing I had the genes. I definitely blamed myself at first,” says Audra Coleman, whose son was diagnosed at two months old with a chronic condition. Coleman has been part of the parent advisory board for The Bristol-Myers Squibb Children’s Hospital at Robert Wood Johnson University Hospital for several years.
You also may be in denial. “At first, you don’t want to think about it, but what helped me was to keep talking to people,” says Moore. “I realized I had to figure out what I needed to know and do. I had to become the expert so I could inform his teachers and caregivers. Once you reach this point, you begin to problem-solve.”
KEEP YOUR PERSPECTIVE
While you’re busy figuring out treatment plans and how to keep the rest of the family functioning, recognize that the illness does not define your child. “Your child is not the diagnosis. Children are so resilient, and this is just one part of your child’s experience,” says Moore.
Also, resist the urge to become overprotective and hyper-vigilant, which isolates your child. “A parent’s perception of what’s happening can influence the child, so let your kid be a kid,” says Messer. Your child still should do kid things when possible, such as ride a bike and go to birthday parties.
BUILD A SUPPORT SYSTEM
Many families find emotional support by joining a group or meeting with families of kids who have been diagnosed previously. “This can give parents reassurance that somehow you’ll come through this,” says Messer.
Your medical team can share resources, and local chapters of national organizations can be helpful. Online support groups also may be an option. “There are more people in this situation than you think,” says Moore.
On the other hand, support groups aren’t necessarily for everyone. “I didn’t join a support group but instead leaned on my church family,” says Coleman. There’s no one way to work through this; the key is learning what feels right to you, whether that’s a formal group, a clergy person, therapist, friends, or all of the above.
TAKE CARE OF YOURSELF
You know the basics: Get checkups, prioritize sleep, go outside for some fresh air, exercise and eat right. “Taking care of yourself is just as important as everything else you’re doing for your child,” says Messer. “This isn’t about adding one more thing to your ‘to do’ list, but rather making sure you can function well.”
This includes accepting help from friends and family. You may feel like you need to show the world that you’ve got this, but it’s OK to let people help, says Messer. You need downtime, too, and kids need to see you doing things like spending time with your partner or friends.
Staying in the moment also helps. “We take it one day, sometimes one hour, at a time,” says Coleman. “When we have a medical crisis, we just do what we have to do. That’s our motto.”
How to Help a Friend or Family Member After a Diagnosis
If a friend or family member has a child with a serious illness, here’s how to help, with suggestions from Dr. Messer, Dr. Moore, and parent Audra Coleman:
- Avoid clichés, which aren’t helpful. Instead, say something simple but heartfelt like, “I’m so sorry you’re going through this,” or “I’ll be thinking of you,” or “I’m praying for you.”
- Resist the urge to offer comparisons about people you know who had this same condition ten years ago; it’s not encouraging because every situation is different.
- Take a chore off their list, such as mowing the lawn or shoveling the walk. Then text something like, “I did your walk because I was doing mine and was on a roll.”
- Help with childcare by saying something like, “I can pick up your son when I pick up my daughter at school tomorrow. Is that OK?” This gives them the opportunity to say ‘no’ but shows you’re willing to assist.
- Offer tangible support. For example, ask if they need anything from the grocery store because you’re on the way there, or ask what day you can bring over a meal (then put it in a disposable container and include cooking instructions).
- Do not post any details whatsoever about the child or the family on social media. This is the parents’ choice, not yours. Period.
— Arricca Elin SanSone is a New York-based health and lifestyle writer.
Get the latest on the best things to do with your family in and around New Jersey by signing up for our newsletter and following us on Facebook and Instagram!
