To my sister. Love, JJ

Two days after her birth, she was not yet home. Two weeks later she was taken to LeBonheur Children’s Hospital in Memphis for the diagnosis of Down Syndrome and significant concerns for her viability with multiple other issues. At ten months, open-heart surgery. Multiple surgeries since.

On her bookshelf are college-ruled notebooks that hold the gospels, hand-written, word by word, verse by verse. On her face, a smile. In her prayers, confidence. In her heart, love.

Picture of me and my sister smiling. She has downs syndrome
Lori and I

Endless memories of playing together and laughing. Countless times we wrestled, with me body slamming her on pillows. Again, brother! Undisputed champion of hilarity. Thousands of tosses as we sat at opposite ends of the hallway – now bounce it once, now bounce it twice. This is fun!

In July 2021, I took a trip to Mississippi to visit my sister, Lori. I took her to visit her friends and our mom’s sisters and my dad’s last remaining sibling. There is never enough time to visit everyone she (or I) wants. I just do the best I can and she’s happy. While driving around we went down a road in New Albany I’ve never been down and she said, “I want a picture there.” So, we jumped out and took a picture, which will become a part of a designed photo book for her, that moment hers forever.

I drove hundreds of miles with her and this is what I have noticed and admired: even when she is tired or sad, she has the acute ability to also be happy and content. For instance, Thursday when I drove her back to Starkville, I was lamenting our short time together (3 days) and how I wish someone would have thought to put New York and Mississippi closer together. Every time her response was, “I have had a good visit with you, brother. This is so good to see you.” Never a lament. Never a complaint.

It’s never perfect and life is rarely what we want it to be in its fullest sense, but gratitude for what is and what has been fills the cracks of what-if and I wish.

She has spoken for years about her desire to live on her own, and it has finally come to pass. She loves having an apartment with a roommate at her group home. “I am enjoying my freedom,” she says as we pass the green fields of Okolona. She is so happy and we are happy for her, this lovely and loving woman.

It’s been a difficult patch to lose Mom, the heart of the family, but I must say that finding this outstanding facility and making the necessary decisions might be the best, God-ordained thing we’ve ever done. To drive ~900 miles in 4 days with conversation upon conversation and visits to the cemeteries, etc, is a lot to do and to process and to make meaning out of, yet it is emerging. To know Lori is to love her. To love someone with special needs is to love both a revelation and a mystery.



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