For the past 14 years, Annie and her husband Chris have been immersed in the medical world and all of the appointments, durable medical equipment, and nursing needs that come with it.
As the parents of two children – now ages 14 and 10 – with an extremely rare chromosomal disorder (so rare, in fact, that there are currently no other known people in the world with their exact chromosomal make up), they looked for opportunities to find community and friendships within the medically complex population from very early on in their journey. Events where they could connect with parents on a similar path, and their children Zak and Callie could play with other kids.
When Annie and Chris weren’t finding these options, they started to think about taking matters into their own hands and creating a resource for families in the area.
When Callie was 1 year old, Annie and her husband Chris was approached by a bank in the community to do a home makeover that would help them to build their home to meet the medical needs of their children who required wheelchairs in addition to their equipment and supplies.
During the remodeling process, an area of their home became dedicated space for the non-profit organization Annie was working on – a support system that arranges playgroups and activities for medically complex children and their families.
“This incredible gift from the community helped us to create a home that was for our children, of course, but was also a way for us to give back to our community by starting this network and foundation for families,” said Annie.
In 2011, Shared Blessings was born.
After their home was built, Annie started setting up playgroups in the dedicated space of their house, and working with the community to understand the type of support they were really searching for.
Since its inception, the mission of Shared Blessings has shifted from monthly playgroups to seasonal events that families might struggle to go to in a normal setting like pictures with Santa or the Easter bunny, and a Halloween party.
“These families are constantly concerned about the germs in public areas, and the stress of waiting in a long line with an upset child while they try to juggle equipment and an oxygen tank,” said Annie. “Those traditional settings are really tough for a child with medical complexities.”
With that in mind, Shared Blessings organizes its events in a relaxed environment where families can find comfort in being surrounded by others who understand these special needs and aren’t phased by the cares many of these children require.
When Shared Blessings first began, Annie focused on families who have just received a diagnosis for their child and are looking for support and community – often the birth to 7 age range. But as they evaluated the needs of those in their organization and considered other groups in the area supporting this population, Annie and the board members recognized a gap that they could help fill by expanding the age range they served.
“There is another local organization, Adaptive Communities, that really focuses on providing opportunities and community involvement for the 18+ group,” said Annie. “That left a 10-year age gap between the children we were supporting and the options for adults, so we expanded our mission to serve children up through 17 years old, allowing us to interact with this organization seamlessly.”
With that change came a shift in the types of events Shared Blessings was hosting so it was geared toward middle age kids as well as the younger age group – adding activities like swimming and climbing wall.
The next program Annie and the Shared Blessings Board is excited to be rolling out? A lending library available to local and surrounding counties that supplies items like wheelchairs, walkers, standers, or therapy toys.
“Often time a therapist will recommend a particular toy for a child’s development, but you will only need it for a few months – or a parent wants to try out a walker for their child before committing to it,” mentioned Annie. “This library will give them access to these items without the risk or expense of purchasing it outright.”
The library system will be managed online, with families able to check it out, pick it up, and drop it off according to their needs.
Looking ahead Annie hopes to be able to continue growing their events and impacting even more families and communities.
“As much as this is about supporting families of those with medical complexities, it’s also about impacting the community,” says Annie. “By seeing us out and about and enjoying everyday life, we’re building acceptance and awareness into our neighbors and the city.”
The most meaningful part of this experience for Annie has been being able to help families who are where she once was – new to this world, and unsure where to go next. By providing events that can help them find other families and feel less alone, Shared Blessings has truly been an answer for the families it serves and an advocate for a complex population as a whole.