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Meet Brodie and Beau, brothers who both live with a disease that deteriorates their muscles to the point that they are unable to hold themselves up in a chair. Although their minds are active and their attitudes are bright, they are physically challenged and unable vocalize their needs. Their devoted mother, Melanie Armistead, relies heavily on visual cues and non-verbal communication to read the boys’ faces for pain, fatigue, or worry. These cues are hampered when a child is slouched over or reclining.
Melanie knew that her sons needed specialized chairs to improve safety and mobility, enable them to sit upright, and give them the ability to participate in normal family life. However, the insurance provider declined the request for this expensive, yet vital, equipment. Out of options, Melanie admirably made do with what she had.
When members of the Sandpiper Team, who care for children in our Pediatric Palliative Program, visited Brodie and Beau, they immediately knew what the children needed. They also knew that it was a BIG ask. Even so, the team members advocated on behalf of this family. In their minds, we needed to fix this situation. Emails flew back and forth discussing how we could support this family and make this much needed purchase; two chairs, a small one for the 7-year-old and a large one for the 14-year-old. Melanie even said they would be thankful for just one chair that the boys could share.
As Dr. Diane Danly shared, the chairs were essential because dignity is “being able to see another person’s face for comfort, acknowledgement, and smiles. To be treated as a human being with a need to be comforted, spoken to respectfully, and since most of communication is nonverbal – essential, especially for those with life limiting illness.” In terms of comfort and function “to be able to do what a person can do, requires a person for the most part to be upright to move arms, and especially to enjoy the video games. Every minute counts.”
The CEO, the Compliance Officer, and the St. Francis Reflections Foundation Board members all agreed that purchasing these special chairs for Brodie and Beau was the best and most appropriate and compassionate course of action. The Foundation’s donors had done a great job in gifting, and we wanted to be good stewards of their donations. While visiting Sidney at Adaptive Specialties, we asked if it was possible to receive a discount for the two chairs and in-turn we would be happy to thank them via our social media. Sidney was on board to help, so we ordered two chairs for two great boys.
Melanie is so thankful for the way these chairs have improved the quality of her sons’ lives. She explained that these chairs mean “safety, interaction with family. The chairs are dynamic in that they can lift or lower and can be pulled up to our dining room table or counter and the boys can be a part of whatever we are doing as a family. These chairs have and will improve quality of life for our boys. One of the greatest aspects is the ability to add the boys to whatever we are doing as a family and they are safely strapped in their chairs able to be involved!”
As an RN, I’ve had the privilege of meeting, many patients throughout my career, but there are some that leave a lasting impact on your heart. A few months ago, I received Beau and Brodie, as my new patients. They are huge fans of Spider-Man and despite their young age, they were fighting big battles, and it was humbling to witness their strength and resilience. During my visits with them, we communicate mostly through gestures and expressions, and they have taught me many things.
Recently, the hospice foundation donated two hi/low chairs to help make their lives better, and I was able to see the excitement on their faces as they tried out the new chairs. As I reflect on my time with these two boys, I am reminded of the quote, ‘Sometimes, real superheroes live in the hearts of small children, fighting big battles.’ They may not have super powers, but they have made me a better person, and I will always be grateful for the impact they had on my life. – Cathleen Baker RNCM
As my Face Book page says, “I work for hospice because I believe in the importance of compassionate care and dignity.” The chairs provided to Beau and Brodie gives them dignity! A seven-year-old should not have to be in a highchair to keep him safe when a chair is available. – Chaplain Ann Owen
You can make a difference in the lives of patient like Beau and Brodie with your donation to St. Francis visit https://reflectionslsc.org/donate/
