Ansley's Story: How Supportive Services Transform the Lives of Medically Complex Children

by Sara Baker Pendleton

My name is Sara Baker Pendleton. I live in Biloxi, Mississippi, in my home region of the Gulf Coast, with my husband Nic and five children. We’re joined by a fluffy white cat, Princeton Lollipop, and two dogs, Sissy and Luna. I like to say I just have a mid-size family! Sometimes our house is chaos, but it’s always full of so much joy. 

I grew up in a very traditional Southern Baptist home with parents who raised me to speak up for people, to speak the truth, to do what’s right. I never intended to become an advocate, until I started fostering children and realizing that they needed someone to advocate with them. 

From a very young age, I felt I’d been called to foster children, as a person of faith and a firm believer in Jesus Christ and His love for every person that God ever created. Together, Nic and I have fostered around 30 children over 14 years, including some we later adopted. Our shared medical backgrounds as former EMTs became critical in our lives as foster parents, especially after we met Ansley and I realized I would need to fight for her to have quality of life. 

When the social worker called to tell me about a baby with severe medical issues who needed a foster home, I knew even before I picked up the phone that this was my baby. For a big decision like welcoming another foster child, Nic and I usually check in, but not this time: I said yes to Ansley, and both of us fell in love with our little girl. We had five beautiful years with an amazing child who loved ballet, balloons, and music. She was my baby. Ansley had such a vibrant, lively personality; everyone who had the privilege to meet her describes her as a force of nature. She brought so much joy to our lives. Ansley transformed our entire family for the better, deepening our connections to each other and the foster children we welcome into our lives. 

She’s my child that I wish I could shout from the rooftops! Being able to testify to what she meant with us is so important to me. 

During her time with us, Ansley needed some complex and sometimes challenging medical support and care. I like to think of her as “a little extra.” She had a tracheostomy to help her breathe, and sometimes had central lines, feeding tubes, and basically all the things. After a cardiac arrest at just six months old, she was classified as terminal. Medically complex children like Ansley are often reduced to their needs and conditions, but those were only a part of her incredible life.

I had to become a fierce advocate for Ansley, who taught me a lot about speaking up for children and others whose voices aren’t heard. Thanks to Medicaid, which has saved the life of every foster child in my care, Ansley received coverage as a foster child and also accessed continuing benefits after we adopted her. Ansley’s Medicaid met many of her medical needs, although sometimes it was a fight to get her specialty care and support, especially therapies that some considered not medically necessary. It was just so important to us that Ansley be at home with her family, not in a facility somewhere, which is where kids in the foster system with medical needs sometimes end up. 

People view children in a “persistent vegetative state” or “minimally conscious state” as not really there. They don’t expect them to go to school, to read. We often heard that Ansley didn’t need given treatments or therapy because she was making “no meaningful progress.” We don’t tell people with cancer “sorry, you can’t have treatment because you’re going to die,” you exhaust all possible options. I felt that way about Ansley, who was considered terminal but was very much a living child. 

Everything changed for us and Ansley the day I entered the Children’s Center for Communication and Development at the University of Southern Mississippi. The Children’s Center focuses on providing medically complex children with the best care and supports possible, to give children quality lives, no matter their progress or the resources their parents have. At the Children’s Center, they don’t go by what children can do, or what their “progress” should look like. They value children because they are people who deserve the best possible lives. 

I was so used to meeting people who would talk about my child, not with her, who would make assumptions about who Ansley was and her capacity based on what she looked like. That day, the director of the program scooped Ansley up into her lap and started talking with her, informally evaluating her and getting to know her. It was her and Ansley. Being a part of that program really opened my eyes to what all children should have a right to, not as a privilege, but as a basic benefit. And maybe Ansley didn’t make “progress” in the way a lot of people define it, but while at the Children’s Center, her grip improved, she was able to hold things, she could use a stander with equipment, she could use a switch toy to entertain herself, and she interacted with peers. 

Because of a group who didn’t put boundaries on who received services, we were able to get to know our little girl before she died. She was surrounded by people who saw her, who loved her, who counted her, regardless of what she could give back. We should be open to caring for all vulnerable people, regardless of their progress, regardless of outcome, regardless of income. Everyone should have access to resources like the Children’s Center. They should be everywhere.

People sometimes talk about children like Ansley as a “burden,” but it’s the lack of schools, respite care, community support, places to go, proper therapies, and resources for families who need help that’s challenging. Loving a child is never a burden. It has been so amazing to see the Children’s Center expand the area and number of children they serve. Watching them do this has really inspired me to push for all children everywhere, for all disabled people, for all elderly people, for everyone who needs care to have what they need. 

Because of what the Children’s Center’s support taught us about Ansley and ourselves, we opened our home to other children we might not have been able to accept if it weren’t for knowing her and seeing how much she meant to us. Meeting Ansley allowed us to welcome more medically complex foster children into our home, including several who live with us today, both as foster and adopted children. 

Medicaid helped Ansley stay with us, and the Children’s Center helped us stay with Ansley, to get to know and love her and see her thrive. Because of her, I am a person who sees people as valuable no matter what they are, who they are, what they’ve done. People want their children’s lives to have “purpose.” She existed, and she was beautiful, and she filled our home. Her spirit is still here. We get nothing out of it except love, and that’s more than enough “purpose” for me.