Real Stories from People Living with Sickle Cell Disease | CDC

Real Stories from People Living with Sickle Cell Disease | CDC

Rae Blaylark’s Story

Rae Blaylark is the founder and Executive Director of the Sickle Cell Foundation of Minnesota; a certified community health worker; a certified hemoglobinopathy (red blood cell disorders) counselor; and the sickle cell patient family health advocate at the local children’s hospital, but her first and most important role is as a mother of a young adult living with sickle cell disease (SCD).

Knowledge about SCD

Rae’s son, Treyvon, was born in 1996. At 2 weeks of age, he was identified with SCD through a newborn screening program in Minnesota. Rae was shocked; she didn’t know a thing about SCD. Although Rae was diagnosed with sickle cell trait (SCT) in high school, the nurses never explained to her what SCT was, how it affected her body, or how it could affect her family planning in the future.

Resources about SCD

Surprised and overwhelmed with her son’s diagnosis, Rae did her best to learn about the condition and found ways to manage her son’s care. “As a young person with my first child and as a single mother, the only people who I had to go to [for education] were the people charged with treating my son, and that was his hematology team (medical team that specializes in blood and blood disorders). My family had very little knowledge of SCD, so I couldn’t go to my family about it.”

At the time, Rae knew of no community-based organizations where she could learn more about SCD and find support within her local community. In 2004, Rae attended an event in St. Paul, Minnesota commemorating the release of the SCD postage stamp by the United States Postal Service. This was the first time she and her son were surrounded by providers, SCD advocates, and other families impacted by SCD. At this event, she met a young man in his early 30s living with SCD, who gave her and her son hope for the future. “I finally met a man who was on track to be older than the age they [doctors] gave me for how long my son would live. When he talked to us, he didn’t talk to us from a sense of hopelessness. He talked to us about living life, enjoying life, and the reality that we would have challenges, but how we view those challenges could not take away from the life that we were still meant to live. It was a level of hope that I had not allowed myself to have up to that point. Up until then, all I thought about was that SCD was a disease that was going to kill my child, and it was devastating. That encounter changed the course of my life and my son’s life. I truly believe that my son is still alive because of that conversation.”

Looking back, she realizes that the lack of community resources and support left her and Treyvon feeling isolated, making it difficult to learn more about SCD. This motivated her to get active in her community, and it led to her current roles in which she empowers and supports other families with SCD.

Challenges/Impact on Caregivers

The first few years of Treyvon’s life were a whirlwind–overwhelming and stressful–but Rae dove in, focusing on his health. “I put my goals on the back burner so I could be present with Treyvon in his pain. I was still learning about the disease while I was expected to be a knowledgeable caregiver who is expected to provide solutions, and I chose, because I was a single mother, to stop pursuing my own career goals for a period of time to focus on him.” Despite being college educated, Rae chose entry-level, part-time jobs once Treyvon started school because these jobs provided more flexibility to pick him up when he needed her.

“There were many moments, particularly in the first several years, that I felt at the brink of a breakdown because of the emotional, psychological burden of caring for a child with special needs.” Early on, she made an intentional decision to not have any more children. “For me, I couldn’t wrap my head around how I could provide the same level of love, attention, time, and effort to additional children knowing that I have a child who will likely take up more of my time.”

Rae had her family to lean on for support, but sometimes it was hard for Rae to ask for help. “I felt some sort of guilt asking for help because this is my only child, and I chose to have him. I felt it was unfair to put undue burden on others in my family.” Still, her family was always willing to come by and help watch Treyvon, giving her some time to catch up on sleep or to run errands.

When Treyvon was young, Rae chose not to date to avoid burdening a partner. It was hard to get into a serious relationship knowing that a partner and her son would have to share her. Eventually, Rae met her now husband and married when Treyvon was about 14 years old. Her husband has been a source of comfort and emotional support for Rae, and even after more than 10 years together, he is continuously learning about what it means to support a caregiver and a loved one with SCD.

Transition

“One of the things I needed to do as he became an adult was to be a partner in his care,” said Rae. She helped prepare Treyvon to take responsibility for his own health care, a process known as transition, but emotionally, it was still hard for Rae to fully let go.

“You have to come to terms with the fact that your child is not perfect. There are things, in your opinion, that they will fail at. I picked and chose my battles. I’ve made mistakes and, at times, fractured our parent-child relationship, and as a result, I’ve had to look at my fears–my fear of losing him–and how that may impact my approach with him.”

Today, Treyvon and Rae continue to be partners in his care. They live in a duplex, with Treyvon living independently on one side of the home. He works two full-time jobs, working as a caregiver and as a supervisor in two different group homes for adults with mental illnesses.

Tips for Others

Rae offers the following tips for caregivers of a child with sickle cell disease:

1. Find something that grounds you and gives you hope. For Rae, her faith kept her grounded. “It is through faith that even during the dark days–during the visits to the intensive care unit and the encounters with less-than-compassionate providers–faith has given me the ability to see the bigger picture.”
2. Don’t put your child in a bubble. Encourage them to remain engaged in school, and work with the school to ensure receipt of accommodations so that your child can get the education that they need and deserve.
3. Find someone to talk to, even if it’s not a therapist. Find someone in your community who can provide you support–a church group, a friend or family member, or neighbor.
4. Transition is not a one-time event. It’s a continuum, a process. Educate yourself by asking questions, visit other facilities, speak with other families who have gone through transition or who are also going through it, and use a collaborative team approach. Don’t feel like you have to do this alone.

CDC would like to thank Rae for sharing her story.