What It’s Like To Be A Sibling Of A Medically Fragile Child

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Children who are medically fragile come to A Rosie Place for up to 10 nights at a time for respite stays. During this time, parents are given the gift of time. If you are seeking respite care for your medically fragile child, call A Rosie Place at 574-235-8899.

By: A Rosie Place For Children and Impress Jewelry Creations

Hanna Miller can’t remember a time when she wasn’t helping provide care to her younger brother.

“I’ve always been very involved in Cameron’s life. Getting him up, taking care of him, feeding him, taking him places,” she says. “It’s very different, but it’s always been my norm. It’s been different for me than it is for other kids.”

Their mother passed away when Hanna was 3 and Cameron was only 18 months. Her brother is medically fragile and requires a lot of help to get through his daily life. Their grandparents, babysitters, and family friends were able to help watch and care for Hanna and Cameron, but life was undeniably difficult for the young family.

Her dad eventually remarried, but much of her young life required Hanna to grow up quickly and pitch in to help the family.

“Growing up, it’s one of those things where you just kinda get used to your situation. I had to learn how to take care of a seizure that was happening to a kid who is considerably heavier and taller than me and who would just drop down,” Hanna says. “I’d have to call 911, time the seizure and give him his medicine if need be. It’s not something that the usual 13-year-old would have to deal with.”

Emergency situations aren’t the norm for Hanna when it comes to helping her brother, though. More often than not, she helps him when he gets home from school at the end of the day, she helps get him off the bus, gets him dinner, gives him medicine, and gets him to bed.

“It’s very different from the life that most other teenagers have,” she says. “It’s a big responsibility, but it’s something that I would not trade for the world.”

Hanna’s friends without medically fragile siblings — or who have no siblings at all — often struggle to understand her situation. She says it’s difficult for them to comprehend why she has had to leave sleepovers early throughout the years, and why she takes so much responsibility for her brother’s care.

“It’s weird to someone who is not used to that life. I’ve been used to this for a few years. I’d say since I was around 12 or 13 this has been my norm, and I wouldn’t change it,” she says. “From my friends’ point of view, they can get up, go about their day, and do whatever they want. Some of them don’t even have younger siblings so it’s especially different, because they just get up and worry about themselves. They don’t have another person to necessarily worry about.”

While she’s had to grow up quickly, she credits her dad for creating an environment for her and Cameron where they know they’re loved and cared for. She says it’s shaped her worldview, and she knows it sets her apart from what she describes as “normal teens,” those who may fight with their parents or have strained relationships with their family.

“As I’ve gotten older, I’ve always kinda been that ‘parental’ friend because of how I grew up,” she says. “I look at life a bit more realistically now, because I’ve been thrown into the midst of things that are quite realistic. It’s always been my reality. I take every day and make it like it’s my last.”

Hanna is in her senior year of high school and is looking at her options for college next year. She’s thinking about going away for school, but that also means being away from her brother and family — that’s something she hasn’t had to face before.

“It’s something I think about a lot. I don’t think it’s deterring my view of going to college or my decision,” she says. “It’s going to be tough, but I think he’s older now and we’ve found a lot of people we trust to take care of him and help us out. I think it’ll be a little bit of a shock, but I think it will be a little bit of weight off my shoulders.”

Part of that relief has come in the form of A Rosie Place for Children.

A Rosie Place for Children is a specialty hospital located in St. Joseph County. It provides respite care for medically fragile children from all 92 counties in Indiana. It allows the families of medically fragile children to take a much needed break from providing constant care on their own.

“A Rosie Place was a huge relief for our family,” Hanna says. “They have been so flexible with us. It takes a huge weight off of our shoulders, and Cameron enjoys it so much.”

Hanna explains that when her brother visits A Rosie Place for Children, he’s able to hang out with friends he’s made there. She also says he has fun with the activities and staff. The nonprofit has allowed her and her family to be able to take vacations that wouldn’t otherwise be possible because of Cameron’s medical needs, she says.

The licensed nurses at A Rosie Place for Children provide 24-hour care to medically fragile children in a kid-friendly setting that feels more home-like and less like a hospital. Children can stay overnight at the nonprofit hospital for up to 10 nights. The services of A Rosie Place for Children are funded by donations, so families never pay for the children to stay.

The nonprofit hospital has afforded Hanna another opportunity, too. The chance to connect with others her age who have siblings who are medically fragile.

Hanna was with her family at one of A Rosie Place for Children’s H.A.V.E.N. events, which gives families with medically fragile children an opportunity to connect with other families. She noticed there were a lot of siblings at the event.

“I thought: ‘What if we do something for the siblings?’,” she says. “I know that my daily life isn’t normal. It really sparked an idea, because I saw that there were other kids who had to go through something like me.”

The sibling program at A Rosie Place for Children is still in its infancy. Hanna’s hope is that it will become a support group for siblings of medically fragile children, where they can meet up and chat.

“Right now, we’re just throwing ideas out there to figure out what might work and what would be the best option to get things going,” Hanna says. “I want to start something, even if it’s just a place where people can get together, support each other, and talk.”

Life has thrown a lot of challenges at Hanna and her family in the past 18 years, but she remains upbeat.

“I don’t think I’d look at life the way that I do now without Cameron,” she says. “I take every day one day at a time and just try to enjoy it. There will be times where I’m sitting on the floor playing with Cameron and I’ll think: ‘Wow, this is special. This is one of those special moments!’”

Nonprofit organizations like A Rosie Place for Children require the generous financial support of donors to offer programs and expand services. Donations ensure that families like Hanna’s never have to pay for the vital service that A Rosie Place for Children offers. For more information, contact A Rosie Place for Children at 574-235-8899.

1 COMMENT

  1. Good morning. I am Hanna and Cameron Miller’s grandmother. I would like to share Hanna’s interview with your station via e-mail. I have family who do not use Facebook or Twitter. Is there any way I can do this?

    Thanks. Victoria Welles

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