James' Story: Raising a Child in Community

by Andrea Brooks Dole

My name is Andrea Brooks Dole. I live in Belfast, Maine, in a traditional timber frame home we built ourselves with my husband Patrick and two wonderful children, James and Rafe. As a lifelong Maine resident, I love the outdoors and feel very connected to nature in our beautiful rural community. Our whole family loves canoeing and exploring the natural world. 

James is ten years old, and he lights up any space he’s in. He has incredible presence and spirit. He shows such capacity for learning and engaging with the people around him. Rafe is such a delight, he loves karate, is very musical, and is so caring and loving with his older brother. 

When James was born he was diagnosed with microcephaly, a condition where his head is smaller in proportion to his body, although I think James uses more of his brain than most people do. He has some neurological issues associated with that, including vision problems and a seizure disorder. James also has cerebral palsy and limited mobility, so he uses a wheelchair and needs some other assistive equipment. 

His doctors initially told us he didn’t have long to live, and he’s outlived their expectations; I’ll never forget the day his neurologist looked at us and said: “I guess we were wrong.” Now James is going to school, where he has classmates who read to him and love spending time with him, and he’s thriving with us at home, not in a nursing home or institution.

Having a medically complex child like James was really challenging for me, not because of James and who he is but because entering the medical system can be really intimidating, especially since we have to travel so far to see specialists and get the kind of care James needs. I had to learn to advocate for James not just medically, but with everyone around us, to be the nurturing mama bear he needs. 

Our whole family is on Medicaid. It’s essential for us. Because I had to give up my career to focus on James, we’re surviving on one income and it’s been such a lifeline for us to have that coverage. James is obviously the one who uses it the most. Medicaid pays for all of his treatments and therapies, the medical equipment he needs, his medical specialist visits every couple of months. With treatments and therapy, it’s especially important, because Medicaid coverage provides him with the time and tools he needs to learn on his own schedule. 

Medicaid also pays for home nursing. It’s so important to me to have someone I trust and feel comfortable with who can spend time with James and give our family some normalcy. Right now, he has nursing care for about 60 hours a week although he is eligible for more. 

I feel really passionately about family caregivers like me. I’m not just a mom, I’m also a nurse, a personal assistant, it’s like its own job that I don’t get paid for. In my years with James, I’ve cultivated such incredible expertise, not just in caring for a medically complex child but in hiring and training the people who support us! Here in Maine, I fought alongside other families for paid family caregivers. We recognize that family caregiving is work, and coming together for public hearings and other events was so nourishing, to be surrounded by families who get it. Paid family caregiving has to be part of the picture for making care sustainable in the long term. 

Our timber frame home stands as a testament to the sense of community in Belfast: More than thirty people showed up to help us raise the framing as communities have been doing for hundreds of years to build homes designed to last, offering not just shelter but longevity. We counted on community to build our house, and we count on our community to make a home where everyone is safe, fed, and loved. 

Children’s health care policy should be based on the actual biological needs of our children. Healthcare is a basic human right. We know that taking care of basic needs and providing preventative care costs less in the long term. This shouldn’t be rocket science! The way we invest in our children says a lot about who we are as a culture. Having basic health care needs met creates the society that we all want to live in. Taking that away is like bankrupting the future.