Lessons from a Medically Fragile Baby with a Significant Disability

Lessons from a Medically Fragile Baby with a Significant Disability

Understanding the power of unconditional love

Just a little over a year ago, Andrea Nielsen became a Solo Mom by choice. Unexpectedly pregnant at age 35, Nielsen chose to have her baby knowing it would change her life. What she didn’t know is how much her daughter, Adeline, would change her heart.

Adeline, known as “Addie,” made an early entrance to the world, and it didn’t take long before doctors suspected she had some significant issues and flew her to Children’s Hospital in Denver. Testing revealed an in-utero stroke and abnormalities in her brain (polymicrogyria). Soon, the medical teams were also trying to address her frequent seizures, as she experienced intractable epilepsy. Addie, with the odds stacked against her, showed her mom and the doctors that she is much more than a tiny, sick baby—she is a fighter.

Adeline qualifies for medical services and support because she requires constant care. Her team has not been able to find medication that will control her seizures, so she experiences multiple seizures every day, which leave her exhausted. She needs to sleep a lot of the time. She also has multiple therapists whom Nielsen takes her to every week.

Nielsen’s only breaks are when Adeline’s father visits with her (he usually takes her one night a week so Nielsen can work as a waitress and make a little money) or a good friend watches her for a few hours. Determined to build a strong life for her daughter, Nielsen uses that time when not waitressing to go to school. Right now, she is in a medical assistant program, but after having Adeline, she is seriously considering a career in early intervention, working with babies who have significant disabilities. “Addie and kids like her are so brave, so wise, and so smart. I want to be more like that and want to help them learn and express themselves because they have so much to say,” she says.

Addie has given Nielsen a reason to get up every day and suit up for a day of caring for her. “Addie is an inspiration. She is the bravest person that I know,” Nielsen says. “I can’t imagine my life without her. Before her, my life was meaningless. I was stuck in low-end jobs.” Like many of us who have a child with a disability, they give us a purpose, a calling. Nielsen has so much to offer other moms with medically fragile children. She knows exactly what it takes and what it gives.

It’s challenging for all parents, but particularly for Solo Moms, to care for a child with so many needs. “Honestly,” says Nielsen, I am just trying to stay in the moment and not let my fears win over our time together. I want to appreciate every moment we have together.” Doctors have warned Nielsen that sweet Adeline may never walk or talk. She hopes that Addie will learn to hold her head up this year and to truly smile at her. “I will keep trying,” she states. “Addie’s dad told me I was in denial about her condition because I am taking every avenue I possibly can to help her. I would go to Mars if I thought it would help her. This is my job as a mother; this is the job of any parent. I am not in denial. I am giving her the best chance possible.”

It’s easy to see Nielsen as somehow more capable than others, but she is doing what all mothers do: loves her child fiercely and gives her all she can to improve her child’s life. “People say I am strong,” Nielsen says. “But I don’t think I have a choice. I don’t regret having her. I just want to do right by her.”

Nielsen is learning that she is strong, that she can advocate to the therapists and Medicaid representatives to make sure Addie gets what she needs. “I put up with a lot less BS,” she says. “I know what is important. I can make boundaries. I can say no.”

When asked about how the proposed health-care act would affect her and Adeline, she says, “I could write a novel on this atrocious and evil ‘health’ (more like ‘lack of health’) bill. I am beyond disheartened that it actually made it through the House. If it makes it through the Senate, it will be a death sentence for millions, Adeline included. She is currently on seven medications, one of which costs $15,000! Yes, that is $15,000 for a 30-day supply! It is really difficult not to feel hopelessness and despair when people who seem to have lost all morals, ethics, and any sense of humanity are running our country.”

Nielsen wishes that Adeline didn’t have seizures or that she didn’t need to fight so hard to get Addie what she needs, but this Solo Mom is determined. She is talking to the neurologist about brain surgery to control the seizures. She keeps going to school and says that Addie is her teacher. She tries to live in the moment.

When Addie was born, Nielsen started reading about her conditions, but the medical information just made her feel hopeless. It was too depressing to keep reading, so she turned to reading about parents of kids with special needs and found good company in the stories of other moms.

“I find great comfort in mothers I have met, many who also have a child with special needs,” Nielsen says. “No matter your support system, your friends and family will never truly understand what we are going through. I am also an avid reader, and a number of books have made me realize that I am not alone.”

Some of her favorites include Missing Michael by Mary Lou Connolly (AuthorHouse, 2005), The Elephant in the Playroom by Denise Brodey (Hudson Street Press, 2007), and Jesse: A Mother’s Story by Marianne Leone (Simon & Schuster, 2011).

Nielsen lives in a small community in the heart of the Rocky Mountains. She takes Addie for a walk almost every day and, like mothers do everywhere, chats with Addie about the people, plants, and creatures they see on their strolls. She is teaching her daughter and hoping for a brighter future. It might include brain surgery. It might include a new career. It might include some new friends who also have children with special needs. For now, it’s one day—and, often, one hour—at a time as Nielsen learns to be a Solo Mom and care for her baby.

Nielsen believes in the lessons that Adeline is teaching her. She has learned the profound meaning of true strength, unconditional love, endless compassion, and fierce tenacity and has allowed it to change every cell in her body to be the mother that Addie needs. She says that Addie is the brave one, but it seems Nielsen is, too.

Do you have a child with special needs? Join our closed Facebook group ESME Special Needs, or reach out on Sister Chat to connect with other moms who understand.

Anna Stewart is ESME’s Kids with Special Needs Resource Guide and the Solo Mom of a daughter and two sons on the brink of adulthood. She’s a champion for the rights of people living with disabilities and those who love them.

Please feel free to contact us with any comments or questions.

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