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.
The holidays are a special time of year for every child. But when a child is medically fragile, making sure they have the same holiday experience as other children takes a special touch.
That’s one of the areas where A Rosie Place for Children shines. The nonprofit, specialty hospital for medically fragile children hosts quarterly Here And Visible Educational Network (H.A.V.E.N.) events. One of the goals of the events is to give medically fragile children the same sense of normalcy that a healthy child has around the holidays.
“H.A.V.E.N.s give families a sense of normal. They get to see Mr. and Mrs. Claus, they get to have a Christmas party, they get to have a birthday party, they get to have a big picnic in the summertime,” says Mark McGill, director of community engagement at A Rosie Place for Children. “Those are things that we and parents of healthy children all do and all take for granted. It gives our families, and our kids especially, a sense of being a kid and a sense of a normal lifestyle.”
A Rosie Place for Children provides respite care for medically fragile children — those who require life-sustaining medicine or devices as a part of their daily care. The specialty hospital serves all 92 counties in Indiana, and is the only one of its kind in the state.
The winter H.A.V.E.N. is a major holiday event for the children and their families.
“We transform our house into a winter wonderland for the holidays. We had lots of Christmas trees and decorations that took days to put up,” says Ronda Spaulding, the development office assistant at A Rosie Place for Children. “We’d have volunteer groups come in to help us set up because it was such a big job. We would take our house and turn it into something really special for the kids.”
CARING FOR THE WHOLE FAMILY
H.A.V.E.N. events are a way that it can provide an opportunity for families to gather and connect with one another. That’s part of the nonprofit’s commitment to whole-family care.
“It’s an opportunity here that families don’t have anywhere else,” Spaulding says. “It’s important for parents to learn from each other, to share resources and to honestly enjoy being with people who understand your life.”
Being a parent of a medically fragile child can be an isolating experience and it can take a tremendous toll on families. That’s why A Rosie Place for Children looks at the larger picture and focuses on how their services help the entire family, not just the children they care for.
“We want to help people and help the kids be kids. We want to help the siblings. We want to help families,” McGill says. “The divorce rate is 86% for families with a medically fragile child. We want families in the community to know that we’re here for them and to make them aware of our services.”
An example is a parent of a medically fragile child whom McGill talked to in the middle of 2020. The father explained that the isolation and worry Americans were feeling during the pandemic lockdowns was how he’s felt every day for the past 19 years.
“The new COVID lifestyle that we’ve all been living — isolation, not seeing people, being worried about sickness, not having supplies — that’s what these families live with every single day,” he says. “This dad has a 19-year-old daughter, and he’s been living that COVID lifestyle for all of those years. The toll and the stress on a family is incredible.”
Unsurprisingly, the pandemic forced A Rosie Place for Children to modify some of the ways that it hosts H.A.V.E.N. events. Fortunately, adapting and overcoming challenges are what nonprofits do best. At the time, Spaulding was unsure how the children and families would respond, but she says it turned into a successful event.
“We had near-normal numbers, and people waited in line for up to two hours! Families were beyond grateful,” she says. “I thought they would be frustrated, but people kept telling us: ‘Thank you for having this. Thank you for doing this.’ We had a line of about six to eight cars waiting the entire time.”
Spaulding says they learned a lot about the 2020 Winter Wonderland event, and that they’ve modified a few things to make it even more streamlined than last year.
This year the nonprofit plans to have an outdoor parade of cars instead of having an in-house holiday H.A.V.E.N. Families will be able to come and enjoy the sights while still participating in some of the activities like taking pictures with Santa and Mrs. Claus, getting prepackaged crafts, and receiving a gift from Santa’s Workshop.
Donations are what make A Rosie Place for Children’s events tick — whether it’s toys from programs like Bears in the Air, manpower in the form of people dressed as elves and reindeer, or cash to help with decorations.
“Community support is everything. It’s time, treasure, and talent — the community donates all three to us at A Rosie Place,” McGill says. “We could not do what we do, day-in and day-out without the community support.”
While many donate their time and talent during the holidays, nonprofits like A Rosie Place for Children need donations and volunteers all year. McGill says that every donation, no matter how small, adds up to big returns for the children who attend A Rosie Place — whether volunteers pulling weeds around the building, donating toys for the holiday H.A.V.E.N., or giving cash to help with programming.
“Volunteering and donating is really the community throwing their arms around these families and giving them a hug that says: ‘We’re glad you’re here and we want you to thrive,’” Spaulding says. “That means the world, because being medically fragile can be isolating for the children in many cases.”
If you’d like to volunteer or donate to A Rosie Place for Children, visit their website. Families who use the services of the nonprofit don’t pay a dime thanks to the generous donations of individuals and businesses in the community. For more information, contact A Rosie Place for Children at 574-235-8899.