Sarah Bloom loves hearing the laughter of her five-year-old daughter Marian. As a mom, she melts when Marian breaks into a big, wide smile. But in March 2020, when Marian was two, Sarah worried that those happy moments would fade into a memory. Through it all, she never gave up hope, and that’s what Sarah wants to share through her family’s story – there is hope for anyone in similar situations, even in desperate times.
“I just want to help others,” Sarah says. “I want them to know there is light.”
Sarah Bloom Shares Marian’s Story
On March 1, 2020, Sarah was awakened by one of her sons who told her that Marian was in trouble, and he was worried about his sister. When Sarah went into her daughter’s room, she realized Marian was seizing. “We immediately called the ambulance,” says Sarah, 12 On Your Side morning anchor.
The family had just returned from a weekend trip. Everyone seemed healthy at the time; there was nothing out of the ordinary. “We had three kids asleep in the car, and we put them to bed,” she says.
At the hospital, the doctor confirmed that Marian had contracted the flu, specifically the H1N1 strain, sometimes called swine flu. It had caused swelling in her brain. Marian stayed in the pediatric intensive care unit for the month of March. “Early on, we thought she would wake up and come back to us [the same as before],” Sarah says. “But it became apparent it was a life-altering [event].”
Marian’s prognosis wasn’t clear for several months. “We were getting mixed messages,” she says. “[We heard] every brain is different; every injury is different. It’s hard to compare brains. We just have to wait and see.”
At the same time Sarah and her family were dealing with the “most devastating time” of their lives, the COVID pandemic hit. Schools were going virtual, and hospitals in the region were going into lockdown.
The family had to rush to get Marian into a rehab hospital out of state for an eight-week period. During that time, Marian needed help with almost every aspect of daily life. The two-year-old was unable to move on her own.
The hospital’s visitation policy allowed only one parent to be with Marian at a time. “I had been with her, and now they were saying I couldn’t see her for eight weeks,” Sarah says, adding that her husband went to the hospital to be with Marian at first. “It was quite scary.”
The hospital eventually eased the COVID-related restrictions, allowing Sarah and her husband to switch off for periods of time during the two months Marian was at the rehab center. “Then, when we came home, the world was still shut down,” Sarah says.
With the pandemic worsening, Sarah worried about getting her daughter into a physical therapy program in Richmond. Fortunately, there was room for Marian at Bon Secours Richmond Hope Therapy Center.
Helping Marian Thrive
“There were blessings in all of this. One of those was getting into Hope,” says Sarah about the clinic. Pediatric physical therapist Shannon La Spina has worked with Marian since June 2020.
“When we first saw her, she presented with a significant brain injury and loss of gross motor skills like sitting and walking,” says La Spina, who works for Hope Therapy Center. “She’s been making steady progress … she can roll by herself, and that’s her new favorite thing. Marian’s also making progress on pushing up from the floor. She’s working with walkers to learn to walk again.” Remember, at two, Marian hadn’t been walking for long when the brain injury occurred.
La Spina is now working with Marian on “pushing up on her hands and knees to get off of things like the couch or her bed. She’s made really good gains,” she says.
La Spina enjoys working with Marian. “She is joyful. She makes me laugh. Her smile can light up the room,” she says. “She can be feisty at times like any five-year-old. She’s spirited, and she’s a hard worker.”
Marian, who is in preschool now, works with a vision therapist, speech therapist, occupational therapist, and a physical therapist at school. All of those sessions, combined with the sessions outside school, add up to hours and hours of therapy each week.
Marian has been on a solid path of improvement since the beginning of her journey. “She’s rolling over and picking up a spoon, reacting to sounds. After the incident, she couldn’t lift her head, see, or eat,” Sarah says. “The people at Hope are incredible. They are always encouraging her and me.”
A second blessing in Sarah’s life came in the form of friends who stepped up to help the family. Sarah notes that there were specific people she loved dearly and thought she knew well, but she came to understand that their professional expertise was indispensable as she encountered these new challenges. “They were exactly the people I needed. I didn’t know the ins and outs of the world of therapy, government paperwork, etc. All these people lined up in my life,” she says.
For Sarah Bloom, Part of a Plan
Trying to cope with life and manage the emotions associated with her daughter’s health has been challenging for Sarah.
“I’m not going to lie. It’s hard for me. I can see a little girl dancing around, going to a Taylor Swift concert, doing the things I thought Marian would do, and it’s hard for me,” she says. “When you are in those moments as a parent, it feels so desperate. What is this going to look like?”
Sarah has relied on her faith, trusting that God has a plan. “And that you are loved, and He is with you,” she says. “You get exhausted, and you’re grieving what you lost.”
She has come to an understanding that maybe this was always the plan in her life, but it wasn’t what she imagined for her daughter. “Her course looks different now,” she says.
The darkness that surrounded the family is slowly dissipating as Marian improves. “She’s wonderful. She’s a light in our family, and we love her so much,” Sarah says. “Marian has made us all better [people]. She’s made me better… more patient.”
Sarah believes if the family hadn’t been on this path with Marian’s health, they wouldn’t have encountered so many “wonderful people,” she says. “[Marian’s] therapists are angels. They cheer for her. They celebrate her victories. They celebrate her where she is and meet our family where we are. Sometimes it’s hard to see the joy.”
It’s a Different World for Sarah Bloom and Her Family
During the past three years, Sarah and her family have learned how to be more accepting of people with differing abilities. “Marian makes me so much more aware of what people with disabilities deal with,” she says. “While the country is working to be more accessible, we are not there yet. How many people are left out of things because it’s not accessible to them?”
Her two boys are more accepting of people who may look different, and they recognize when someone with disabilities is treated differently. They understand accessibility and look for features in a building that make it more accessible. Sarah says the boys are starting to see how these challenges will impact their sister’s life and happiness.
“When they are at an amusement park, for example, they may see something and say, ‘Marian would love these.’ [They know] she would like this toy or these lights or sounds,” Sarah says.
Last year, Baking Memories 4 Kids, a nonprofit that helps families with kids who have complex medical needs, presented Sarah and her family with a vacation to Disney, which they plan to take at the end of February.
“One of the reasons this trip to Disney is more than a trip is because it’s an accessible vacation. Our daughter can actually ride the rides. She is a thrill seeker, and all the kids are very excited,” Sarah says. “We can go as a family and get to go do fun things together.”
Even the thought of planning a vacation for a family with a child who has complex medical needs is overwhelming because of every detail that has to be considered.
“This will be a core memory for our whole family forever,” says Sarah of the vacation. “We are going to Disney over the anniversary of her brain injury. She could have died, and we are well aware of that. We are so lucky to have her.”
Marian is a gift, she adds. “She loves music. She brings laughter to every room she is in. She likes funny sounds, is empathetic, and recognizes people’s voices and her favorite songs. She’s a great listener. She likes to get her brothers into trouble. She charms anyone she is around.”
Having a child with extraordinary needs changes a parent and a family, Sarah says. “We want people who are going through this to know there is hope.”
For anyone in this situation, life can be exhausting. It takes an emotional toll. “A lot of people are doing this on their own. We want them to know it can get better,” she says. “People who are not in a situation like this can support other people by all the ways they can include that person and their family. It’s needed because it can be an isolating thing. It’s a community that could use the support.”
Support for Families with Children Who Have Extraordinary Needs
Sarah and her family have been assisted by several organizations over the past three years. She wants to share that information with other families in the hope that they can find help as well.
Richmond Hope Therapy Center The first clinic in Virginia to offer highly effective intensive therapy for children and young adults with complex medical conditions. Children receive three to four hours of therapy a day, five days a week, for three consecutive weeks in an individualized program. bonsecours.com
Children’s Assistive Technology Service (C.A.T.S.) This no-cost resource for children with disabilities who need adaptive equipment provides for the re-use of pediatric rehabilitation equipment and assistive technology devices for families in Virginia who have limited resources. atdevicesforkids.org
REACHcycles This all-volunteer nonprofit organization provides adaptive bikes to children with disabilities in an effort to increase their mobility and boost their independence. reachcycles.org
Team Luke Hope for Minds The organization works to enrich the lives of children with brain injuries and gives hope to their families. teamlukehopeforminds.org