Our daughter, Hannah, age 29, with Prader-Willi syndrome, wrote this touching eulogy to her friend, Johnny, a man of 68 years, developmentally disabled to about the age of two or three, who lived with the same host family as Hannah. Johnny passed away recently, and the eulogy was read at his funeral.
QUOTE
Psalm 24
The King of Glory and His Kingdom
Johnny and I met 7 years ago, and he was the sweetest young man I knew on the face of the planet. I loved helping getting his outfits for him, feeding him, but most of all I liked being mother hen to him. I want very badly to be a mama someday when I grew up, but sadly it couldn’t be. I love him a lot, I will always be sad, and will always remember him way deep in my heart.
I would like to close with a short reading from Psalm 24.
“The earth is the LORD’s, and all its fullness, the world and all therein; for
He has founded it upon the seas and established it upon the waters. Who may
ascend into the hill of the LORD? Or who may stand in His holy place?
He who has clean hands and a pure heart, who has not lifted up his soul to an idol,
nor sworn deceitfully. He shall receive blessing from the LORD, and righteousness
from the God of his salvation.”
May your heart be eternally at peace, Johnny!
Love, Hannah
ENDQUOTE
Now Hannah had asked me to help her find a verse to read for Johnny. I thought and thought and searched high and low for something that would be truly comforting and meaningful and not cliché or sappy. I came up empty, but Hannah’s choice was perfect.
At the funeral, the priest told everyone that when Johnny met someone, that person immediately became family. What a world it would be if everyone had that attitude.
It wasn’t too many years ago that I learned what the term “special needs people” means. These people are special, and they have been placed on this earth because we need them. Though they are often maligned and disparaged as something less than “normal,” these special people are often much closer to humanity’s ideal, i.e. they are humane, merciful, humble, compassionate, giving, sensitive to the feelings of others, loving and expressing that love unabashedly.
Here’s a story from Hannah’s life that I have told previously. One Sunday morning Hannah and I were driving across town to Sunday School. (Kathy had been called in to work unexpectedly at 3:30 in the morning so was not with us). Out of the blue, Hannah says to me "Dad, I wish everyone in the world could be as fortunate as we are." I was moved to tears. Here was Hannah, who was born with a rare syndrome affecting her appetite and emotional control. Because of the syndrome she will never be able to have children, which she loves more than anything in the world except perhaps dogs and horses. She will never drive, likely never marry. She will never be truly independent (she lives outside our home but in a host home with another family, who take care of her). Throw in a mild case of bi-polar disorder, and Hannah has enough problems to give her a hundred excuses to complain, but rather she says, "Dad, I wish everyone in the world could be as fortunate as we are."
Hannah often says to us that she is thankful that God put her in our family, that she has the best parents in the world. Last night Kathy asked her whether so-and-so might think their parents are the best in the world, too. Could they have the best parents in the world, too? Hannah matter-of-factly answered that they could--the best parents for them. We call people like Hannah "special." Some may think this a euphemism, but it is not. She is special, and we are so thankful that God put her in our family. We have learned so much from her.
Before closing this email, I want to talk about two other very special people: Angie, with whom Johnny lived for 15 years, and Itha, who initially obtained legal custody of Johnny in order to get him released from institutional living. Itha found Johnny languishing in an institution and made it her mission to get him out. She went through legal channels and did just that. While Johnny lived with Angie’s family, Itha would often take Johnny away on special travels and fun, local field trips. The word special doesn’t seem big enough for this lady.
Angie is the big-hearted woman who, along with her husband, Zeke, took Johnny in and treated him as if he were her own son. She is the wonderful person who loves and treats our Hannah is if she were her own daughter. Angie and her husband have a family of their own, but find overflowing love to shower upon those they’ve taken into the heart of their home. For Hannah, this is an opportunity to move out “on her own,” as she has seen her brother and sisters do, although she can never be truly independent. Kathy and I spend time with Hannah on special occasions, weekends, take her to therapeutic horseback riding and Sunday School, but Angie is there for her constantly. We can never express the depth of our gratitude to Angie for all she has poured into Hannah. She, indeed, is a special person with a big heart for the special people who have been specially placed among us to fulfill our special needs.
Wishing you the best always, Jim and Kathy
For more information about Prader-Willi Syndrome, check out the web site of the national organization
here, or the Colorado group
here.
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