My sister, Tiffany Self, went home to be with the Lord on Oct 3, 2021. She too had Down Syndrome. She died from Covid pneumonia. Our family understands what y'all are going through. You know, I never thought anything could hurt more than losing my mom until Tiffany went home ...
Click here to continue the story ...
I am so very for your loss. We lost my dear sister-in-law at DePaul Baptist Hospital in Norfolk VA last year in the same way. Not allowing my brother, her partner of over 15 years in the hospital and venting her without permission.
Having just watched the interview with Mel K, I have a couple of thoughts in response. Before I get to them, I would like to thank you for this outlet. We all want to be heard and I will try to summarize my story. I grew up knowing I have two ears and one mouth for a reason: so I did read several other stories before writing this.
My wife has been disabled since '90, gradually needing more care each year. Our son, Mark was among those '90's children first punished for being active (not hyper) with many 'behavioral' chemicals instead of paddles. The brain tumor grew slowly enough for him to have five children. His complaints of headaches were dismissed as 'drug seeking' for over ten years... up to and including the day it exploded in 2017. The following two years, I was given the strength and support to care for his oldest two children, his disabled mom, keep a factory job and act as Mark's legal guardian until he passed in mid-2019. With no short-term memory, very little vision, and no endocrine regulatory system, he was passed between 13 institutions in two states, the majority of the time at Vanderbilt in Nashville. Halfway through this, an argument at another hospital over whether taking him home was an option (NOT) caused me a mild stroke. I am not ready to delve into Grace's story yet; I need more practice controlling my tears. Mark’s mom was near death of a fungal infection a few months before he passed. Because of Michael's help in getting her doctors to see truth, she is still with me.
You told Mel you were using what you had saved for Grace for this project. I would rather you had said 'blessed' than 'fortunate' that you have the resources. Luck steals credit from divine providence. My other concern is that you filed (501C3?), continuing to work within a corrupt system. I pray that yours and other nonprofit groups will soon have no need to jump through their hoops. The regulations too often protect rather than prevent corruption.
I eagerly anticipate harmonizing with you in the joyful reunion celebration.