I have always liked to add some holiday flair to my house when there is a special day coming up, and I do
Many people are aware that I care for my grandma, but they don’t know about or understand my connection with Calvin. I often call us the ‘Odd Couple,’ because people are always curious about us and how we could possibly be ‘family,’ which is what I normally tell people when they ask what our relationship is.
Calvin is 52 years old and he is deaf and blind. He was born deaf due to being born on the tail end of the rubella outbreak that happened in the 1940s, 50s, and 60s. At five years of age, he lost his parents. This loss set him on a trajectory to some of the most unwanted, unloving places (training schools and institutions). Around 15 years old, he lost his vision. Calvin met my friend Michael McCarthy around this time at Woodhaven, a training school in Columbia, MO. Mike took Calvin up to the Helen Keller National Center, where he learned independent living skills, how to communicate, and even had a job (and was featured in the New York Times! When he graduated from Helen Keller, Mike brought him back to KC and helped him buy his house (1997).
I met Calvin supporting him in his home as a direct care professional working my way through college (2007). Mike told me about the agency that supported him, and I went and applied and eventually began working with him. I had to move on from direct support to get a ‘real job’ once I graduated, but I still stayed involved in Calvin’s life. By that point, he was part of my family, coming home with me on holidays and going to church with me on Sundays.
Almost five years ago, when Mike passed away, there was no succession plan, but everyone on Calvin’s support team (I am in fact, his only nonpaid support) agreed that I was the obvious choice to be his next guardian.
For almost five years now, I have been serving in the role of Calvin’s guardian. This past five years I have been very involved in his life and seen him often, but have been very hands off.
A lot has changed since I worked with Calvin over ten years ago. While Calvin used to be able to do a lot of things for himself, Calvin is now pretty much total care, which means he needs support from everything to getting dressed, moving around, eating, and taking medicine.
Calvin has been in the hospital for over a week and we are in the process of setting up hospice for him. In the interim, his residential provider (who provided his care 24/7 before his hospitalization) has decided that they do not have the capacity to meet his needs and will no longer be supporting him when he is discharged.
That means I will be completely responsible for caring for Calvin when he is discharged until I can get supports in place. We have a plan, but it will take a couple of weeks at least to get it all set up. Once it is set up, I will be overseeing his in-home supports like never before.
I will be bringing him home today. I hope you will follow along with us over the coming weeks as we work to get Calvin back settled in his home and I settle into this new role with Calvin. Keep us in your thoughts and prayers and send all the good vibes our way!
God bless you and thank you for being part of our lives.