Navigating the Minefield of a Grandchild’s Diagnosis: Some Help for Grandparents
This post was written by Lynnae Allred, co-founder of Playdatebox.com.
“Mom, does one of her legs look longer to you than the other one?”
My adult son was on the floor changing his 18-month-old and holding her little heels in his hands so I could compare.
I managed to stifle my shoot-from-the-hip response: “Wouldn’t your pediatrician let you know if there were something wrong with her?”
Instead, I looked closely, and sure enough, one leg did look a bit longer than the other. But was this something serious or something she would grow out of? The pediatrician wasn’t alarmed. Should we be? I didn’t want to be dismissive of his concerns.
Emotions Run High When Grandchildren Aren’t Doing Well - How Should We Respond?
I know what it’s like to be given a diagnosis of a serious medical issue. After all, the handsome, intelligent adult I was talking to had once been the infant son I handed to a pediatric anesthesiologist who carried him into the operating room for delicate heart surgery. I’ve been through the shock of a child’s medical diagnosis before. I’ve also experienced what it’s like when someone wants to reassure you or support you and says exactly the wrong thing. I didn’t want to get this wrong.
How Is My Own Nervous System Doing Right Now?
When your grandchild is suffering from a serious illness, medical issue, or difficult developmental diagnosis, they don’t suffer alone. The people who love them are also going to feel distressed. If there’s no official diagnosis yet, it’s extra tricky territory. What if you are noticing something the parents don’t seem concerned about and you don’t know how to bring it up? No wonder grandparents dread the minefield of a serious diagnosis!
When you initially learn of a diagnosis, you may only get a moment to calm your own nervous system before you frame your reaction and an appropriate response. Denial is powerful, and saying and doing the wrong thing in a situation like this is common. We feel upset ourselves, and often we say the first thing that comes to mind, rather than pausing to consider the impact of our words. I know because I’ve taken the wrong approach more than once. Maybe you can find a better path by learning from my mistakes.
What is the REAL Question Here?
Let’s look at my son’s question again:
“Mom, does one of her legs look longer to you than the other one?”
It sounds like he is looking for a yes or no answer—a diagnosis. But he knows I’m not a qualified medical professional. Instead, what if he’s actually searching for a path forward—a way to confirm that his concerns are valid, or reassurance that he’s overreacting? My initial mistake was my own sense of denial. I didn’t say it, but I thought it: “Of course there’s nothing wrong with her. She’s perfect. Everything about her is perfect.” In other words, “I will not be OK if she is not OK.”
Then, he ticked off additional evidence: “She often cries for no logical reason during diaper changes. Now that she walks, she never lifts her left leg to go up the stairs. It’s always her right leg. Watch the hitch in her hip as she swings her leg to the side as she walks. That doesn’t look normal.”
Wanting Everything to Be OK is Part of the Grieving Process
One thing that is difficult about a conversation like this one is that parents are often the first to notice something isn’t right. And for a while, they wonder whether they are crazy. It’s a vulnerable thing to face the possibility that your fears are legitimate. Parents desperately want everything to be OK while deep down something is telling them it isn’t. No wonder they often reach out to their own parents. This is scary, and despite being adults, they need a safe space. If you are lucky, you can become a safe space.
In this scenario, my mistake was jumping in with a solution. I shot a video of my granddaughter walking down the hall and sent it to an acquaintance who is a pediatric radiologist. His response was to recommend an orthopedic surgeon for them to visit. “Now we will get somewhere,” I thought. But it wasn’t that easy. Instead of listening and reassuring, I assumed the role of “rescuer.” When we take on the rescuer role, we inadvertently make those we want to help feel incapable and controlled.
With some time to think it over and agree on a course of action together, my son and daughter-in-law eventually made an appointment with the surgeon so they could get a medical diagnosis. But it took a day or two for them to find the courage. Instead of supporting them and reassuring them of their capability, I had overstepped my authority and I think that may have actually delayed getting the correct diagnosis for their daughter.
A Curious Listener, Not an Advisor
On another occasion, a daughter-in-law sat on the couch across from me and delivered a shocking message: “The pediatrician thinks our little one could be autistic. She says we won’t be able to have her diagnosed until she is a few months older, but she wants us to consider early intervention. This is keeping me up at night and consuming my thoughts. What do you think?”
I missed the cues here too. Hindsight helped me see what was lurking behind the question: Fear of the unknown. Exhaustion. A hope for a shoulder to lean on. Worry about how the future of this child might be different than what the parents had dreamed of. Concern that the pediatrician might be wrong. Frustration at the lack of clear answers.
Instead of listening, I offered my knee-jerk response. I told her what I knew about neurodiversity research, I spouted a set of possible solutions, and I told her she had nothing to lose by pursuing the pediatrician’s advice. Later, I suggested I thought she could help by spending more time with her daughter playing one-on-one. My response was crushing for my daughter-in-law. She didn’t need an advisor. She certainly didn’t need my criticism. She needed a listener.
What our adult children need most in these darkest hours is a trusted listener who will help shoulder the heavy emotional load, not pile on more bricks. This was a very vulnerable and emotional time for my daughter-in-law. I realize now that I responded in this arrogant way partly because I was scared and upset too. It wasn’t my finest hour.
My good fortune is that my daughter-in-law was emotionally mature enough to let me know what I had said hurt. Without that honesty, our relationship could have been irreparably damaged. I have apologized, but the lesson was a hard one to learn.
Mistakes and Grace - What to Do When You Don’t Get it Quite Right
We all make mistakes like these, and that’s what makes family relationships so thorny. To succeed as our families grow, we have to give ourselves, and others, a lot of grace. I like this definition of grace shared with me by Aaron Larson, a grandparenting advisor:
“Grace means freely providing unearned and undeserved kindness or favor to yourself and others.”
Without this kind of grace, and a willingness to forgive quickly, we suffer in some relationships more than is necessary.
As I develop my capacity to be a better listener, I am learning to be much gentler with myself and those I love. I’m learning to lean in with genuine curiosity instead of offering unsolicited advice and becoming a rescuer.
Here are some things I wish I had said instead:
Our family is only complete because you and this grandchild are part of it. You and this child are beloved, come what may.
What can I do that would help the most?
Do you have information you would like me to read? I’d love to learn how to support you best.
This is so hard, and I am so grateful you are willing to share it with me.
You have important gifts as a parent and you are especially suited to handle this difficulty.
I have every confidence in you and even though this is very difficult, you are a great parenting team and you will be able to find a solution together.
I know you will do the right thing for your child.
Some Additional Considerations for Grandparents After A Grandchild’s Diagnosis
Here are some additional thoughts, adapted from a thoughtful article by the Autism Awareness Center that you might consider as you navigate the new normal brought on by any serious medical diagnosis:
Remember your first duty is to love your own child, the adult. That may seem less obvious than loving the sick child, but when you shine the light of love on the parents, the grandchild will benefit as well.
Avoid judging or placing blame. Assigning blame is inappropriate, even cruel, and does nothing to improve the situation.
Parents may need significant logistical support with meals, carpools, medical appointments, and more as they manage what is ahead, and you can be an important part of the team that lifts that burden.
The financial support you hoped to leave as an inheritance for your grandchild someday in the future may be needed now instead. If you are in a position to do so without endangering your own financial stability, consider ways you might be able to help with therapy, medical bills, childcare, and other unexpected expenses.
Think of thoughtful ways to give the parents some time off.
Make a special effort to remember and reassure siblings of the impacted grandchild.
Respect the parents’ expectations and boundaries.
Accept and love your grandchild for who they are now, even though your dreams for them may have changed.
Lynnae Allred (Grandma Nae) is a Play Enthusiast and Professional Grandma. She is the co-founder of Playdatebox.com, a site dedicated to helping Grandparents connect with Grandchildren and build relationships as they spend time together in playful ways.