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Sam’s Story: Fear is Not an Option

April 30th, 2022  | HIElights of Hope

Name: Sam Villeneuve

Location: Wisconsin, United States

Child’s Birth Year: 2017

Keywords: Navigating Sibling Relationships, Seizures/Epilepsy, Cerebral Palsy, Self-Care


“She taught me that fear is not an option.”

-Diane von Furstenberg


Sam and her husband, Drew, have two children, Bren and Sage. Bren, their son with HIE, is five years old, while Sage, their post-HIE baby, is two. During Sam’s pregnancy with Bren, everything went smoothly, and she and Drew were inexorably excited to finally become parents. Sam went into labor a day after her due date, and the entire labor and delivery process went super quick, lasting under ten hours. Bren’s heart rate decelerated at times while Sam was pushing, and he swallowed some meconium, but nothing visibly dramatic happened that the doctors thought would cause an HIE event. Yet, unexpectedly, Bren came out unable to breathe, needing to be resuscitated for fifteen minutes.

After two hours of monitoring, Bren’s condition didn’t improve, so he was transferred to a larger hospital to undergo cooling. Right as Bren arrived at the new hospital, doctors noticed he was having continuous seizures, which were eventually controlled with medication.

The three weeks in the NICU were an emotional rollercoaster. Since the hospital was close to where Sam and Drew’s families lived, visitors seemed to pour in every day. It was amazing to have all that support, with people bringing Sam and Drew coffee, food, or anything else they needed from home. However, there were times when Sam and Drew told people not to come, as they needed space to process their emotions about such an overwhelming situation.

In terms of informational resources, Sam and Drew were introduced to Hope for HIE six days into the NICU stay, right after they received Bren’s MRI results. Aside from that, because Bren was pretty unresponsive to most environmental stimuli, none of the providers really knew what additional resources to connect them to.

Luckily, because Sam had worked in social services previously, she had an idea of what programs would be useful. Upon discharge, Sam began calling various agencies and filling out applications to get Bren plugged into the appropriate therapies. Sam soon realized that, to make this jam-packed schedule work, she was going to have to be a caregiver full time. So, after Bren was born, she did not return to work.

Right away, Bren was placed in speech and physical therapy, and when he was around six months old, he began occupational therapy as well. He has been going to those three therapies every week ever since. Now, at four years old, Bren has made progress, even communicating via a device that is attached to his wheelchair. He has been crawling for a little over a year, and he loves moving around as much as he can. In terms of his subsequent diagnoses, he has epilepsy and cerebral palsy, and he also has a feeding tube. Bren and his younger sister, Sage, truly are best friends. As soon as one of them wakes up in the morning, they wake the other up. Bren gives Sage the sweetest hugs and kisses and makes sure she is included in everything. It’s truly been a joy for Sam to witness how inclusive and caring an older brother Bren is to Sage. Bren also loves being outside, playing with cars and trucks, and watching Daniel Tiger and Mickey Mouse.

Throughout all of this, hope for Sam is the idea that Bren is not done yet—he’s not done growing, learning, developing, and showing the world what he is capable of. Every day, Bren seems to be learning and reaching new inchstones. For instance, Bren is beginning to mimic those around him. Sage plays a silly game where she points to her nose and have people say “beep,” and then she will grab her nose and have people say “honk.” Bren now tries to do that, too, beeping and honking his nose.

Even though he is relatively nonverbal, Bren comes up with his own syllables and tones for the names of each member of his family. It’s been so fun for Sam to witness the amazing boy Bren is becoming, and even though the prospect of having to “wait and see” can be scary, Sam has, in many ways, learned to enjoy it. Each day is an adventure, for she never knows what new little sign of incremental progress Bren will show. Sam would urges other parents, as hard as it might be, to try to reconceptualize the future of uncertainty as a future of possibility waiting to be discovered.

Furthermore, it’s natural to feel that, if your child has disabilities, they are missing out on major parts of life. Sam has days where she feels bad for Bren, thinking how he cannot play with his friends because he has a doctor’s appointment or how he can’t enjoy restaurant food because he is tube-fed. But in those moments, she reminds herself, though she may view something as being sad or negative for Bren, he doesn’t necessarily view those things the same way. Bren has grown up with his disabilities his entire life, so this is all he has ever known. And while his life may look different from his peers, Bren doesn’t perceive his life as any less happy or joy-filled, so why should Sam? Bren may not be able to order off the kids’ menu at a restaurant, but he still has fun interacting at the table with the people he loves. This whole journey has really shown Sam that it’s the perspective of the child experiencing the situation that matters most.

When Sam feels like the challenges just seem to be piling up, she is grateful for all the support systems she has built. All of Bren’s local providers, such as his family doctor and therapists, are amazing, and they have, in many ways, become like family. When Sam takes Bren in for appointments, she can tell they don’t view Bren as just one more patient in their busy day—they truly take the time to validate Sam’s concerns as a mother, as well as individualize care to meet Bren’s unique needs. Sam would encourage all healthcare providers to follow suit and fully hear what is going on in each family’s life, especially since there is no one-size-fits-all look to HIE.

The Hope for HIE community has also been invaluable throughout Sam’s journey. Raising a child with a disability can be an incredibly isolating experience, so remembering there is a community out there, cheering her on, has been empowering. Sam remembers how overwhelmed she felt during, and shortly after, the NICU days, so she helps mentor and encourage new families through posting about her experiences in the Hope for HIE support forums.

In addition to leaning on and into these communities of support, another way Sam has coped is by engaging in self-care. Because she stays at home all day with two kids, Sam gets overwhelmed more easily with the children than her husband does. So, what helps her avoid burnout is being open with her husband about when she needs a break. When he comes home from work, Sam often lets him know that she needs fifteen minutes to do something for herself, whether that is working on a puzzle, going for a run, or riding her bike. On the weekends, she sometimes goes on longer outings with her friends. At the beginning of this journey, Sam was not always so vocal about her need for respite from her caregiving responsibilities. But since then, Sam is proud of how far she has come in terms of prioritizing her well-being as a mother and as an individual. That time in her day, when she can be active with her body, or use her brain for something aside from making medical decisions, is not a luxury, but a necessity.

Overall, this journey has shown Sam that HIE isn’t always the worst-case scenario. Sam will never forget how devastated she felt when Bren first received his HIE diagnosis, and the pediatric neurologist made it seem like Bren would do absolutely nothing in his life. After hearing that message, Sam couldn’t help but internalize it, thinking that Bren’s quality of life would be next to none. But reflecting upon her life now, Sam realizes that, even with disability, there is still room for so much hope, goodness, and happiness in life. When she sees Bren making a beeline for Sage’s bedroom right after he wakes up, so he can play with her, Sam’s heart aches with joy, not with pain. When she sees Bren learning seemingly small, but still significant, things every day, Sam feels excited to see how the future will unfold, not fear of the unknown. She vows to never let worries control her life and to forever teach Bren that succumbing to fear is not an option.

 

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