Sibling Support
Intro
This blog will tell the story of two sisters, Lauren and Grace Loose. Lauren, who has faced several diagnoses stemming from her initial diagnosis of Neurofibromatosis Type 1, lives with resilience every day. Grace, her loving and able-bodied younger sister, generously shared her experiences and perspectives on growing up with a sibling facing physical disabilities and health challenges. We are grateful to Grace for offering her insights into her unique sibling dynamic.
About the Loose Family
The Loose family is well known for starting the charitable foundation Lauren's First and Goal. Grace and Laurens' parents, Marianne and John Loose, started the foundation in 2004 with a mission to support pediatric brain tumor research and cancer services, offer financial and emotional support to families living with pediatric cancer, and increase awareness of the disease.
Open Communication
In an interview we had with Grace, she shared that when she was growing up, she thought she had the typical family dynamic as any of her friends or classmates. It was not until Grace was a little bit older that she learned more about her sister Lauren's health and the physical ailments that preceded it. Grace is now an adult able to handle all the information and the reality of her sister's lifestyle after lots of open conversations with her parents. Having an open dialogue is something that establishes the relationship she has with her sister and her parents. Grace told us that if her parents had kept her sister's health a subject that was not talked about freely, she probably would not be able to empathize and understand the challenges her sister and parents face as well as she does because of the open communication This point has recently been established and understood for Grace as she is an adult because she recalled times when she was growing up and noticed how much extra attention her sister needed compared to herself. As a young child, it is very easy and likely to feel left out when a sibling is perceived to be getting more attention than another. Having an open dialogue with the sibling of a child with physical disabilities is incredibly important for how the child, like Grace in this situation, will perceive actions of daily life.
Outside of her home, Grace noted that some of her peers’ struggle to broach the topic, lacking the familiarity she has. Growing up in a household where supporting her sister's health was normal, Grace finds it natural to discuss it, unlike her friends, who may feel unsure about asking questions. Grace again emphasizes the significance of open communication in her relationships. When her friends ask about Lauren's health, Grace appreciates their concern and sees it as an acknowledgment of her sister's challenges and well-being.
Valuable Lessons
Grace talks about the incredible perspectives and insights she has gained that perhaps someone who does not have a family member with physical disabilities could understand. Grace mentioned that she notices things other people wouldn’t, such as accessibility. She explained, “If you haven’t had to think about that, it's great for you, but it's challenging when you do need to because of the lack of it.” Grace now lives out of state from her sister and parents. When they wanted to come to visit her, it was very important to think about how and what accessibility avenues there are to ensure a safe trip.
Grace mentions that as she continues to grow, she is learning more about the impact her family life has had on shaping her into the person she has become. Grace was able to experience things her sister was not able to for a lot of her life, such as playing sports in school, going to college and moving out on her own. It has been a struggle for Grace to find a balance of empathy for what her sister is not able to do and celebrating her own achievements. The challenge is mostly feeling guilty for the things she can do but her sister is unable to. But those feelings alone have matured into a beautiful perspective. She told us the value of not taking experience for granted, like going to work every day. Her sister Lauren works at a café that hires adults with disabilities. These young men and women are so stoked to get their first jobs and go to work every day for the chance to interact with people and serve others. Grace shared her message, “Life goes on, and you need to be grateful for what you can and are able to do; don’t pass anything up because you feel bad for someone who cannot. Appreciate what you’re able to do because you happen to be lucky enough to have been born healthy.”
Another important insight from our interview with Grace is the importance of engaging with various communities. Grace fondly remembers her involvement with Lauren's First and Goal, a foundation she grew up actively participating in. She recalled the joyous memories of the foundation's camps, which were the highlight of her year. These camps provided an opportunity to bond with friends and family while pursuing a common goal. Grace advocates for individuals with similar family dynamics to seek outlets for discussing their experiences, whether that means confiding in a professional or confiding in friends. Additionally, she stresses the importance of compassion, as everyone has their own unique story. There is a need for inclusivity, and she urges caution in choosing our words, recognizing their potential impact on others.
If you would like to donate to the Cindy Miles Adaptive Fund, head to our donate page.
Resources
https://www.cindymilesfund.org/
https://www.kit.org/inclusion-in-playgrounds/
