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Barbara and Barry’s Story: Looking Beyond the Parents

April 30th, 2022  | HIElights of Hope

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Name: Barbara Levin and Barry Rosenberg

Location: Missouri, United States

Grandchild’s Birth Year: 2015

Keywords: Advocacy Work/Blogging, Seizures/Epilepsy, Cerebral Palsy, Communication Challenges, PTSD & Mental Health, Grandparent Support Role

Barbara and Barry are both professors at the Brown School of Social Work at Washington University in St. Louis. In September of 2015, Barbara and Barry were excitedly anticipating the birth of their first two grandchildren, Leah and Elana. As parents to Becky, they were overwhelmed with joy, not only that she would be starting the wonderful new journey of motherhood, but that they would start their own journeys as grandparents.

However, when, at birth, Becky and Mark lost Leah, and when Elana suffered an HIE event, they felt helpless, as both parents and grandparents. Seeing their daughter endure so much pain and trauma, and not knowing how to comfort her, was something neither Barbara or Barry could have ever prepared for. On top of that, they, too, struggled with grief and loss, but their number one priority was to be there for Becky and Mark. As grandparents, Barbara and Barry offer a unique perspective as to how extended family members can balance supporting HIE parents, while also taking care of their own well-being.

In the wake of Elana’s traumatic birth, Barbara and Barry held the mindset that they could only serve as advocates by first listening to the needs of Mark and Becky. They very much believe that there is no one-size-fits-all approach for how extended family members are to support parents and children with HIE, but that each approach will have to shift and adapt to fit with what each parent is personally going through. At times, this meant suppressing their own needs, desires, and thoughts. It also meant that, at other times, they would have to be more behind-the-scenes, waiting for whatever information Mark and Becky felt comfortable sharing about Elana’s condition. As Becky’s parents, even though Barbara and Barry so badly wanted to “fix” the situation, they knew Becky didn’t need them to solve a problem, for HIE really is a waiting game.

While there is no template for how grandparents or extended family members should be supportive, Barbara and Barry have slowly pieced together how they believe they can best be present for Mark, Becky, and Elana. From early on, they saw how much of a burden it was for Mark and Becky to have to constantly explain what had happened to Elana to various doctors, family members, and friends. Especially right after the birth, sharing their story meant reliving a trauma that they still needed time to process.

Barbara remembers once, when Elana was in the hospital due to seizures, there would be a new shift of nurses or interns asking Becky the same questions over and over again: “Can you share your birth story?” “What are Elana’s medical diagnoses?”

Barbara would see the frustration and pain in Becky’s eyes as she repeated the story for what seemed like the tenth time that day. So, as Becky’s mom, she quietly went to the desk and asked them to not to ask those questions every time someone entered the room.

Another way Barbara and Barry tried to relieve some of the burden Mark and Becky felt having to repeatedly explain their story, was by serving as translators and helping answer some of their family’s questions. Even though they didn’t understand all the medical issues to the extent that Elana’s parents did, they kept people updated to the best of their ability, so that Mark and Becky could focus on their more-pressing role of engaging in Elana’s care.

And instead of asking Mark and Becky to explain everything to them, Barbara and Barry also took the initiative to do a lot of their own research about HIE, disability, and subsequent diagnoses, such as cerebral palsy and seizure disorders. Barbara and Barry were fortunate to have friends who were doctors, and other medical and mental health professionals, who they were able to reach out to, and, because they are both professors in a school of social work, they are often updated about political changes in the language and proper terminology surrounding disability (“person-first language”). Moreover, around thirty years ago, when they were still living in New Jersey, Barbara had worked at a community center and sponsored a camp for children with different types of disabilities, such as cerebral palsy. Because of this experience, she already had a background in, and some knowledge about, disability advocacy.

Although their personal network of friends, and drawing from their past experiences, has been helpful in becoming more informed, Barbara and Barry have noticed a major gap in existing resources. Currently, the vast majority of materials that exist about caring for a child with a disability are written specifically for parents. While these resources are very much necessary, a large proportion of informal caregiving is also done by extended family members, so resources directed toward this population should exist too. There are various organizations that support NICU parents, such as A Hand to Hold, but support for people, such as grandparents, is far and few between. That is why Barbara and Barry are staunch advocates and supporters of Hope for HIE—they know firsthand how isolating this experience can be for grandparents, so they are grateful that, through the Extended Family Support group on Facebook, Hope for HIE is finding ways to help extended family connect with others who understand what they are going through.

In addition, one way that medical providers can potentially empower grandparents is by first asking parents what they want the involvement of other family members to look like. If the parents want grandparents to be involved, it would make a world of a difference for providers to include grandparents in important conversations regarding care from the start, highlighting what their potential roles can be, and explaining ways to approach those roles. Not only can this help grandparents feel less in the dark, but it can also relieve parents of the role of “educator” and ensure that a child with HIE receives the best, most informed care possible.

Throughout their family’s journey with HIE, Barbara and Barry have learned that, even if children have extensive limitations, they can go on to live meaningful, enriching lives. What has helped Barbara and Barry maintain hope these past six years has been shifting their focus away from deficit and toward possibility. Even though Elana may not look like a neurotypical child, and it may be harder for her to engage in daily activities, it has been a joy for them to witness the efforts Mark and Becky have made to normalize life for Elana. Elana has been to more five-star restaurants than most adults will ever visit, and she has traveled all over, from Israel to Iceland to Denmark. Among Barbara and Barry’s most powerful memories are seeing Elana’s contagious smile as her stroller flew over the bumps of the cobblestone streets in Virginia. Since Elana’s younger sister, Louisa, was born a year and a half ago, it has been fulfilling for Barbara and Barry to observe the sweet interactions between their two grandchildren. They have already seen how much of an impact Elana has had on those around her, so they’re excited to see the wonderfulness and value having an older sister with disabilities will mean for Louisa’s life in the years to come.

Yes, having a child with a disability comes with complications and difficulties. There are many places that have yet to be made accessible for those with disabilities, and dealing with glances of curiosity or pity from strangers when out in public can be frustrating. Barbara and Barry applaud Mark and Becky for not letting this deter them from showing Elana the beauty that exists in this world. And perhaps that can be a major role of grandparents—to figure out ways to make the rest of the world see their grandchildren through their eyes, as lovely individuals.

In the future, Barbara and Barry hope for progress to also be made from a larger social policy perspective. Because Mark is in the military, they have had exceptional health insurance coverage for Elana, making their ability to financially cope with HIE dramatically easier than others who do not have access to supportive insurance. The costs of adaptive equipment, medication, appointments, and medical treatments add up quickly, so families who do not have adequate insurance coverage are often forced to pick and choose what resources their child will receive. On top of all this, there is the added complication of the policies surrounding Supplemental Security Income (SSI), Medicaid, and Disability Insurance (DI) that vary widely from state to state. Challenges associated with disability do cut across all economic levels, but Barbara and Barry acknowledge that those of low socioeconomic status must endure added stressors that make the HIE journey even more overwhelming. Because they have access to resources, an education, and a voice, they view it as their responsibility to spread awareness on these issues surrounding disparity of care. For grandparents who have the resources and platform, but feel lost as to how they can help, joining in this cause can be a great way to serve as an ally to the HIE and larger disability community.

From their experiences with Elana, they have also seen firsthand just how much the medical field silos things. Each diagnosis, whether it is cerebral palsy or epilepsy or autism, is viewed as a separate entity. This partitioning of diagnoses clashes with the realities of many children with HIE, who often have multiple comorbid conditions that interact with one another. By only focusing on one color of a painting at a time, instead of also considering how those colors blend together, you can miss out on the full picture. Similarly, if you aren’t looking at the whole child with HIE, it’s difficult to offer the most effective treatment plan possible. Barbara and Barry hope that more research and advocacy will explore this intersectionality, for this exploration can lead to improved prevention, diagnosis, and treatment options. They appreciate how Hope for HIE, through posting about various conditions (e.g., parental mental health, epilepsy, cerebral palsy, sensory impairments, learning disabilities, etc.), connects the various diagnoses that can arise from HIE.

These past few years have been far from easy, but they have also led Barbara and Barry to discover a newfound purpose—to become advocates for extended family members who have been impacted by HIE and to support the disability community. The loss of Leah added another complicated layer of grief in their family’s experience. Barbara and Barry tried to support Mark and Becky as best they could, while also realizing that their grief was, in some ways, private. At times, this led to Barbara and Barry feeling isolated. However, they want other extended family members to know that it is 100% okay to feel that loss, and finding avenues to express grief is so important. For them, they found that being vulnerable to one another and talking through their emotions together was wholeheartedly healing. For others, the avenue that works for them might look different, but that is okay too. It’s about finding what works best for you.

In addition, supporting Mark and Becky sometimes meant messing up, apologizing, and taking a step back. They hope other extended family members know that there will inevitably be times where they don’t phrase something the right way, or where what they may perceive as support isn’t actually helping. What matters is not being the perfect support system (as that is impossible) but being able to learn from these mistakes by staying attuned to the unique psychological needs of the parents. Listening is key.

Barbara remembers reading one essay in particular, “Welcome to Holland,” by Emily Kingsley, about the experience of raising a child with disability. In the essay, landing in Holland when one was expecting to arrive in Italy, is an analogy for having a child with a disability when one is expecting to raise a neurotypical child. Life with Elana may not be the future that everyone had envisioned. But, as Kingsley says, “If you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, very lovely things about Holland.” To all the HIE grandparents out there, Barbara would remind them to appreciate the beauty of this unexpected journey, instead of ruminating over what could have been.