8 minute read
Meet the David Family: Remembering Reagan
My beautiful daughter, Reagan, was born in October 2000. It had been an easy pregnancy with no problems. I maintained good health and had access to excellent prenatal care. Reagan was born on time and appeared to be in perfect health. Then came her six-month pediatrician visit and things felt a bit off. She did not roll from her tummy to her back. She couldn’t support herself sitting up. As a new parent, it felt like I was worried about everything, and it was easy to feel relieved when the doctor reminded me that all children develop differently. By her nine-month appointment, I knew something was definitely wrong. She wasn’t making distinct sounds, she didn’t lift her arms to be picked up, and she couldn’t sit without support. Her pediatrician again tried to reassure me she would be fine. I didn’t agree and found a different doctor. Reagan was immediately referred for physical therapy to help her gain strength while we figured out what the cause of her delay was. A year and many specialists later, the diagnosis came: It was Rett syndrome.
For me, there was an immediate relief to have a diagnosis. It meant there was a path forward to help her catch up with her peers. It meant we could find a solution to her problem. What I didn’t know then was she would never be like her peers. What I would learn was that my life would completely change with her diagnosis, and all for the better.
When I was pregnant with Reagan, I imagined us playing in the park, going on trips, helping her through her first break up and fights with friends, and seeing her walk down the aisle one day. I knew my vision would not match reality perfectly, but I didn’t imagine my vision not matching reality at all. It took a lot of time, reflection, and some therapy to accept that I felt like someone took my child from me. Even though she was with me, there was a loss, and I grieved it.
Rett syndrome is a neurological disorder, almost exclusively occurring in girls. It affects all aspects of life, including purposeful hand movement, and the ability to breathe, eat, walk and sleep. I was told she could never go to school, she might be bedridden, and I would have to take care of her for the rest of her life. It was scary. It was overwhelming.
What nobody told me, though, was that having Reagan would make me a better person. I had a lot to learn and many battles to take on to make sure she could live her best life. She started school programs when she was three years old and attended school full-time, year-round, since age five. Reagan thrived around other kids and loved the activities, even if she could not fully take part in them. She used a wheelchair for mobility; a communication device, to differing levels of success, to communicate; and eventually got a g-tube for feeding.
When Reagan was 7, I married the most wonderful man I know. Donald not only loved me but loved Reagan as if she was his own. He still jokes that he married me just so he could have Reagan in his life. Caring for one’s own child with complex health needs is difficult and sometimes feels impossible to handle. But to choose to care for and raise a child with complex health needs takes love and character that most people don’t possess.
Donald and I created a life that focused on Reagan’s care and how to best support her without sacrificing our life. There was a conscious choice to normalize her condition. We wanted her to be exposed to the world and the world to be exposed to her. Between doctor’s appointments, therapy sessions, and ER visits, we lived life to the fullest. At age 6, she took her first of about a dozen trips to Disney World. We went shopping on Miracle Mile in Chicago, visited family all over the Midwest and east coast, and enjoyed Michigan’s “Up North.” She went to prom, enjoyed two cruises, and earned her high school certificate. She played Miracle League baseball and made friends. She laughed at her little sister, Chloe, when she would get in trouble. We soaked up the obvious joy she found in life.
Along the way, I learned a lot about myself and humanity. First, I learned humility. I watched my daughter fight to do almost everything, including breathing. She did it with a smile on her face and mischief in her eyes. It is hard to see yourself as important in the face of such grace. I learned what it really means to love someone. I loved taking care of her and never felt like I was sacrificing anything to be with her. She filled my whole heart. I learned to not take things for granted. Every day with her was a gift. I didn’t know how many I would have and vowed to treasure every day with her.
Also, I learned that there are a lot of great, caring people in the world. Reagan had physical therapists, occupational therapists and doctors who became like family members to us. They cheered her on, helped her grow, and supported our family. When we struggled to push her up a dune at Sleeping Bear Dunes in a beach chair, some young men came to help us.
People held doors for us, and smiled and talked to her, even though she could not speak to them. There were multiple times when we were out shopping or at Disney when people randomly came up and gave us a gift for her. At Disney, one man told us he was so moved by seeing her enjoy the park that he had to buy her a souvenir. She had that effect on people.
It’s easy to focus on the hard parts of raising a child with complex health concerns. There are a lot of hard parts. I cried many nights about how unfair life can be. I yelled and complained about how difficult it can be to get the right care or to find the right specialist. I have experienced immense frustration with insurance companies and state services. It was difficult to travel, to go to a restaurant, or to leave Reagan in someone else’s care. All of that is real, but we focused on the joy Reagan brought to our family.
Life is precious and it can change in a moment. On December 2, 2023, our lives changed. While Chloe and I were traveling, I received a call that would turn my world upside down. Reagan had passed away peacefully in her sleep. We had always been told that this could happen, but we still never expected it. No one trained me to handle this. I could handle ER visits, mysterious illnesses, and fighting with insurance companies, but I was not prepared to handle my daughter no longer being with me.
All the memories people shared about Reagan and all the cards, calls, and donations in her name reminded us of the impact she had on so many people. That was a comfort. Again, I made a conscious decision to honor Reagan’s life the best way I knew how. I didn’t worry about what other people thought; I grieved in private. Our family went on a cruise that we had planned months prior. I didn’t care who judged us for it. We told stories about Reagan (Do you remember when she did this?), talked about how much we missed her, and had fun pointing out what she would have hated about the trip (the ocean water was too cold). For us, this kept her memory alive and allowed us to keep living. Our family will never be the same. We are still coming to terms with our new normal. Just like when I received her diagnosis, everything has changed. We are learning to find the joy in life without her experiencing it with us. We are learning to keep her in our hearts and still love life. We have made a choice to continue to stay part of the disabled community and spread information and awareness. This is our way of honoring her.