Zebra Mamas: Parenting a Child With EDS
The Ehlers-Danlos Syndromes (EDS) are a collection of heritable connective tissue disorders* that affect many organ systems and often come with several other conditions. It’s a genetic condition, which means many families manage the lives of several zebras simultaneously. Living with complex conditions such as EDS as an adult is challenging at the best of times, but parenting children with EDS can be heartbreakingly hard.
Finding support and community with others who live with EDS is critical. Connecting through social media can create instant friendships that provide invaluable resources and encouragement. But sometimes you can meet friends in the most unusual of places. If it hadn’t been for our beloved family dog, Charlie, a scruffy wire-haired terrier, I would have never met Laura.
We live in different neighborhoods. However, my son transferred to an elementary school in Laura’s neighborhood, so it had become my morning habit to drop off my son and meet with Laura and her dog Pal in a nearby park. But in the fall of 2015, I abruptly stopped my morning routine because my 15-year-old daughter, Tali, had been struggling with health issues.
One March morning, I took Charlie on a fortuitous walk through Laura’s** neighborhood. We passed by Pal’s house, who barked insistently at seeing her old buddy. Laura stepped outside to quiet her. It was a chance sighting, and we could have simply exchanged our usual pleasantries, but for some reason, we started talking about our daughters.
Before I could self-censor, I found myself sharing that Tali had been out of school for six months and had been recently diagnosed with hEDS. Unbeknownst to me, Laura had been consumed with her 16-year-old daughter, Ellie’s, health issues. Just the day before, they had been to the pediatrician, who suggested she find a geneticist to confirm an EDS diagnosis. Laura was tearfully overwhelmed, not sure what to do. “Now that I had this scary diagnosis, I had no idea how I was supposed to handle it?” Laura recalls.
We were both in the early days trying to get our heads around what it meant for our daughters to have a connective tissue disorder. Over the following years, we became part of each other’s support systems. So did our daughters, helping one another through their ups and downs.
Recently, we met for coffee, reflecting back on the last eight years since our daughters’ diagnosis. Could we offer an insider’s perspective on raising a child with EDS? Maybe our experiences could lend a “helping hoof” of sorts from one zebra mama to another. Would our insights be too limited? While we recognize that our perspectives are from privileged moms with supportive partners and the means to quit our jobs to be full-time caregivers, we hope we could shed light on handling those early days of diagnosis, slogging through the grief and denial that follows. Once we moved from crisis to chronic mode of managing EDS, we discovered we gained some coping skills that may seem small but genuinely made a big difference.
We sat for hours, talking, sharing, and reminiscing. In the following days, we confided how utterly exhausted we felt from rehashing the past. I considered not writing this piece at all. It was too hard, too emotional. What could we possibly offer with our own unique experience? Finally, after some serious reflection, we decided that if we could help even one other parent, that would be the greatest reward in itself. Our chance meeting that fateful day back in 2015 made a significant difference in our lives. We hope we can make a difference in yours.
We offer two perspectives, Laura’s from the point of view of a parent who does not have hEDS or a chronic illness, and myself, a Zebra of a different stripe. I have a rare metabolic disorder called Homocystinuria (HCU), an inherited rare condition that causes homocysteine to build up in my urine and blood. It is also a connective tissue disorder. During these early days in 2015, when our families were learning about hEDS (and there were far fewer resources or awareness back then), there were a lot of hard emotions to contend with–both ours and theirs. Laura and I talked about anger, depression, anxiety, feeling overwhelmed, and even escaping into denial. As parents, we experienced our daughter’s emotions as well as our own. We also wracked ourselves with guilt. How did we miss those early warning signs?
Listen to your intuition.
For years, we both experienced a ‘mama intuition’ —a sense that there was something askew in our daughters’ development. Ellie was extraordinarily flexible, complained of body pains, GI issues, and had a speech delay. The County determined that Ellie had slight challenges with her fine and gross motor skills, but they said she would grow out of it. “I’m still waiting for that to happen!” Laura says.
There were other red flags. She had frequent rashes; she’d fall often and scraped her knees. But don’t all kids? Her scraped knees healed slowly and left scars. In a toddler gymnastics class, Ellie was the oldest, and yet she couldn’t figure out how to jump. “I put her on a swing set. She couldn’t figure out how to move her legs and body,” Laura recalls.
In early high school, Ellie’s stomach problems really began flaring up. “It became clear that something was amiss. It’s just very hard to put your finger on it.” At a pediatrician’s visit, Laura asked the nurse if perhaps all of Ellie’s symptoms were part of a bigger problem? The nurse looked at her dismissively, “No, it’s not.” Laura persisted. “But this isn’t normal, is it?” The nurse just shook her head. Laura worried that the pediatrician might accuse her of child abuse if she kept insisting Ellie was sick.
While Ellie is the youngest in her family, Tali is the oldest in ours, so we didn’t have a frame of reference for what was normal or unusual child development. Having my own rare disorder meant that, in some ways, I was hyper-attentive to her health, but in other ways, perhaps I was distracted by my own health issues. There were little incidences, though, that nagged at the edges of my mind. Similar to Ellie, Tali was a toddler when she scraped her knee on the pool’s rough bottom. She cried and wouldn’t bear weight on that leg. A month later, it still hadn’t fully healed. Was that normal?
All through preschool and elementary school, Tali got sick with unusual illnesses like mono, shingles, and pneumonia, and it took her a long time to recover. She had frequent rashes and bruised easily. But then, I was the same. Did I normalize her experience because of my own health issues? When she said her hips hurt, I told the pediatrician I had hip dysplasia as an infant. We were dismissed. When she repeatedly sprained her ankle and then developed bursitis in her knees from running, we took her to physical therapy, but it didn’t help.
Let go of the guilt.
Learning to let go of the guilt–” I should have listened more or seen the red flags” is not easy. Letting go of the anger that multiple doctors dismissed what, in hindsight, seems obvious, takes time. The only way forward was to keep persisting even while being dismissed. Contending with my chronic health issues taught me to ask a lot of questions and search for multiple ways to get seen and heard.
Unbeknownst to us, our daughters reached a point when their symptoms could not be ignored. Ellie suffered several unexplainable injuries and went to see an orthopedist. As luck would have it, the orthopedist was married to Ellie’s pediatrician. Ever resourceful, Ellie read an article online that if you can do these “party tricks” with your body, you might have Ehlers-Danlos syndrome. Astonishingly enough, the pediatrician listened to Ellie and ordered various blood tests. The doctors concluded that Ellie may have EDS but didn’t know what else to offer. They sent Laura to find a geneticist to confirm the diagnosis.
Persist when dismissed.
Just as Ellie was experiencing these cascading sets of injuries, we were muddling through our own “perfect storm.” Timing was such that the escalation of both our daughters’ symptoms followed an illness or injury and the HPV vaccine. Although we can’t be certain there is a correlation, it seemed like an interesting coincidence.
Tali had just returned to school after a prolonged flu. During band class, she simply bent down to pick up her instrument. Suddenly she felt a jolt of pain as her shoulder fell out of its socket. Her shoulder had spontaneously subluxated, but no one could explain why. When tests came back “unremarkable,” doctors dismissed her pain. “Take some Ibuprofen and Tylenol. It will go away.” Nothing helped, and thus began a roller coaster process of chasing pain and sleepless nights.
It was the Children’s Hospital pain doctor who initially suspected Tali had EDS, and my own geneticist confirmed the diagnosis. I had a long history of follow-ups with the genetics department at Children’s and knew how to coach Laura on persisting and insisting on getting seen. Rather than waiting months for the appointment, I urged Laura to call back and request an earlier appointment. Out of sheer necessity, I learned to persist when told to desist. Admittedly, it helped that I could email my geneticist and beg her to see Ellie. Over the last eight years, my geneticist has gained more insights into hEDS and has opened up a clinic within Children’s Hospital to help detect and diagnose EDS at an early age.
Lean into your grief.
Coming to terms with a diagnosis is exhausting and draining. “There is a lot of grieving that happens, and there is no other way around it but through it,” Laura says. She cried, felt lost, and leaned on friends and her mom. But there would be others who let her down; friends and family who just couldn’t or wouldn’t comprehend. Laura’s sibling told her, “Ellie has got to work; she’s got to go to school, do something. As a supervisor, I wouldn’t hire someone in her shoes.” Ellie’s aunt told her to get another doctor as the current one is enabling her to wallow in her health issues. Hearing harsh judgments (especially from family) about your child when you feel so vulnerable can be devastating.
“She lost a lot of friends over the years,” Laura says. Suddenly you and your child find yourself living in a different world from your peers, and that is a hard reality to swallow. Friends couldn’t understand when Ellie canceled plans at the last minute. “What others see on social media can be very detrimental,” Laura says. Friends respond to the smiling pictures Ellie posts, but no one sees what happens when she gets home. People say, “If she is well enough to go out, why isn’t she well enough to have a job or go to school? ”
“When the going gets tough, tune it out.”
“There were coping skills we needed to gain in dealing with all this overwhelming information,” Laura says. When the initial crisis subsided and turned into a more chronic situation, there was yet another mental hurdle. It’s difficult to be caught in the mindset of “waiting for the other shoe to drop” or feel like you are constantly “on-call.” There is a very delicate balancing act that you need to maintain between holding on and letting go.
“When the going gets tough, tune it out!” became Laura’s motto. “There is only so much I can take. I need to focus on what I can do best for Ellie, and if there is something emotionally that I can’t handle, I tune out.” Creating a protective bubble from others (those unsympathetic family and friends) is so important. “You have to remind yourself that people will pass judgment, and you gotta tune that out. You don’t know what she’s going through,” Laura says.
Early on, we’d both get lost in research, moving from one article to the next, stopping to look up terms while being careful about source reliability. I discovered an invaluable podcast, Hypermobility Happy Hour, connecting communities and experts. We were vigilant about what we shared with our daughters so as not to overwhelm or frighten them. We needed boundaries to protect ourselves from going down that rabbit hole of the internet’s tragic stories. “You don’t want to lose hope for what your child can or cannot do,” Laura says.
“My emotions are so intertwined with how my daughter is feeling. If she’s in a bad place, I’m in a bad place.It’s hard for me to untangle that,” Laura says. She compares her relationship with her daughter to a fragile balloon. “I feel like I’m trying to keep a balloon from hitting the floor. I don’t want her to ever hit bottom, but I can’t turn around for too long because that balloon is going to fall. You can’t push balloons in the air that high, which means you can’t take your eyes, your mind, and your thoughts away for too long. But if you keep doing this for a very long time, you get tired. And that is when you need someone else to step in or you need to take a break.”
“I work very hard to compartmentalize,” Laura says. She knows that whatever issues she leaves behind will be there when she gets back. “Separating myself from the house, being with friends, and doing my own thing is really important. I try to do activities that really immerse my brain and my body, like kayaking. The goal is for the kayak to stay in the water, not for me to end up in the water.” Taking a needed break from the constant stress can take an unusual form. One day, Laura noticed her car mechanic had a motorcycle sitting in his garage. “I asked him if I could have a ride, and we have taken a few rides together, and I love it. I feel free. I’m focusing on holding on and staying on, enjoying the air and the sights.”
At some point, I realized that if I don’t press the pause button and do self-care, I risk getting ill myself and won’t be able to care for Tali. I had to accept that this chronic stress of caregiving was not going to go away. In doing my own self-care, I was also modeling it for my daughter. My self-care comes in the form of writing, walking, reading, cooking, and baking, and when I’m feeling good, I tap dance my heart out. Being kind to ourselves is not laziness or entitlement but a way of surviving with the best positive frame of mind.
Laura and I each came up with ways to get through those umpteen dreaded doctor visits. Tali and I plan a ‘carrot’–something to look forward to after a doctor’s appointment. It can be as simple as sitting on a sunny bench in the park, finding a nice cafe, getting ice cream, or browsing in a bookstore. For a long while, we’d follow our Children’s hospital visits with a “read-and-relax” program at the local animal shelter. We read to the anxious puppies to help socialize them, and we felt calmer, too—a win-win for all.
It’s the little things.
“It’s really about the little things that make all the difference,” Laura says. “I think nothing of just turning up the music when we are in the car to the doctor’s, or I’ll put on music at home, and we’ll get up and dance.” Doctor’s appointments are interspersed with smaller outings like lunch or manicures. Bigger procedures are followed up with bigger treats, like taking Ellie on her favorite beach getaway. “Even though financially we have to be very careful, at the same time, I have to let her have these treats,” Laura says. In retrospect, we see how vital those shared moments were in building stronger bonds and trust with our daughters.
Always something you can do.
For years, I have contended with unpredictable flares. A wise counselor told me, “You may not be able to do everything, but there is always something you can do.”
You may not be able to fix what’s ailing your child, but you do have the power to make the moment more bearable with an understandable gesture or acknowledgment. Knowing there are still the smallest steps you can take even when your body says, ‘I can’t’ is empowering. That experience has taught me to let go a bit more and indulge in that extra dose of kindness for myself as well as my daughter.
It’s really hard to have an invisible illness and make others understand that just because I am sitting in a cafe smiling, doesn’t mean I’m fine. People rarely want to see beyond the surface and are quick to judge. I’ve spoken to other parents who don’t have a chronic health condition, and understandably their patience can run thin; they feel frustrated, helpless, and even wary of their children. I’ve heard them say, “I think my child can do more,” or “They are just unmotivated or lazy.” We all get angry and frustrated, and I don’t deny that I, too, wondered early on whether Tali was being dramatic about her scraped knee or painful hands. I regret that now in hindsight. I refer those parents to the “Spoon Theory” as a means of explaining to others what fatigue and brain fog looks like. Whatever the case may be, I know Tali can be harder on herself than anyone else would. There are plenty others out there ready to pass judgment. Do I want to join those voices? Instead, I decided I would listen, validate her feelings, and give unconditional love.
Untangling your emotions from theirs, compartmentalizing, taking a break to do self-care, sprinkling the hard days with the” carrots,” and giving out extra doses of kindness are all within your power to control.
Ask for help.
When caregiving days get tough, let others step in. Sometimes I feel depleted or find we are knocking heads with each other. Handling my own difficult emotions and hers at the same time can be hard. Sometimes this means I let go, and my husband steps in. Knowing there is someone out there my daughter will listen to or I can lean on makes all the difference. At times, others are much more effective in saying the same words and being heard.
“I know Ellie will listen to her dad a little more than me because I am the one at home with her all day. When I realize she won’t accept it from me, then I have her dad deliver the news or have that difficult conversation,” Laura says.
Caring for our daughters with chronic health issues impacts every member of the family. Considering our other children’s needs is a balancing act. Ellie’s big sister is her constant cheerleader. “I will find them lying in bed together, giving each other hugs or a massage. It’s the best.”
Don’t forget the other kids.
Tali’s younger brother will jump to help her in any way he can. It could be giving her a helping hand when she wants to do some stress-release baking or simply snuggling up to watch a movie. Admittedly, I feel guilty at times that he doesn’t get enough attention. Even just acknowledging that fact out loud seems to make a difference.
“I do the most ridiculous things for my older daughter to show her that I care for her,” Laura says. “You need to show your other child or children that you still love and care for them, and you will bend over backward to meet their needs as well.”
“Becoming a well-organized unit helps, too,” Laura says. They have put together a shared family document with lists of current medications, doses and allergies, diagnoses, and how the symptoms manifest. “Having this tool has empowered the rest of the family and, at the same time, takes some of the burden off of me,” Laura says.
Acknowledging and accepting our own limitations takes time. Being okay with what we can and can’t do for our daughters isn’t easy, but perhaps it takes some of the angst away. We are still learning when to hold on and when to let go, but isn’t that the same for all parents?
At the moment, Ellie is a full-time patient living at home. And yet she is an adult working very hard to ensure her illness doesn’t become her identity. At 23, Ellie manages most of her health care on her own. At times, Laura feels that maybe she would be asking different questions of the doctors, but sometimes Ellie “doesn’t want me to go,” Laura says. There is this feeling that “I got this, Mom.” Respecting her wishes is more than half the battle.
Accepting that we are doing our best within our own limitations is not easy, but as time goes on, it allows us to recognize that we are still constantly learning, making mistakes, and growing. Respecting that our daughters know their bodies best, even when they act otherwise, can be hard to accept, but it is a necessary part of letting go.
Caring for another zebra in a forest of horses is understandably hard a lot of the time and challenging most of the time. My sibling summed it up in a comforting way–” we do what we have to do to take care of our kids. Knowing it’s right doesn’t mean it isn’t hard.”
Be kind to yourself.
Being a Zebra Mama “can feel like you are in a never-ending game of Whac-a-Mole,” Laura says, but our hope is that perhaps our stories help remind each other that we are not alone. We see you. We may have different experiences and different relationships, but we also speak a similar language and have the capacity to understand deeply if only we are willing to listen.
Image by Maria R Trigo
Guest Post by Avi Zahavi
*For an in-depth understanding of EDS, read “Disjointed: Navigating the Diagnosis of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder,” edited by Diana Jovin, Hidden Stripes Publications, Inc, San Francisco, 2020.
** I’ve chosen to use pseudonyms to protect the privacy of our families.