Community Caregivers

There's a house on the other side of our back fence, where several people with special needs live. It reminds me of the Residences Jeff lived in for the nine years after he "Moved On" from home, at age 18. A woman is sweeping the porch. A man is enjoying the backyard swing. Yesterday several people were painting their side of our fence. There is always something going on! A family of residents and the Lifetime Assistance Inc. staff are enjoying the sunshine together, as well as dealing with someone who vies for attention by roaring like a lion. (Which sounds like something Jeff might have done, too!!!) I'd like to wiggle my nose and create a Gate I could walk through, and remind them again of Jeff and friends who used to gather for the Seeds group at a local church.~~~Maybe it's a Time-Gate I'm looking for as I remember the great times which we also enjoyed with Jeff's old friends?! (Photo is a view of the house from my backyard, at dusk on a cold night.)

Smiles for Caregiving Memories

 
"Jessica?" At her grandfather's funeral today years tumbled over one another as the young woman and the golden-haired toddler she was carrying traded places and Jessica was again the baby in the story, "Jeff's Sense of Humor," in Journey With Jeff.Jeff was a teenager then, just shy of a year since moving from home to live in a Residence for people with special needs. "There's a baby next door," I told Jeff during his four-day Easter vistit at home. "Want to go and meet Jessica?" "Baby, Mom?" he asked. "Next door?" "Yes, Sue B. invited us over to see her granddaughter. Can you say, Jessica?" After a few attempts, we decided to shorten it to 'Jess.' Sue introduced Jeff to four-month-old Jessica, who was alert and smiling at everyone, including him. "Cute!" he said to Sue, pointing at the baby. In a few minutes he left the stool beside Jessica to have the cup of hot chocolate Sue offered him. The baby began to fuss so her mother gave her a pacifier. Jeff grinned! "Look Mom, a mute!" A mute? Then I burst out laughing and had to explain. "You know how Jeff loves all the instruments, and how a mute goes into a trumpet or trombone to soften the music? This, then, is a baby's mute!" Everyone laughed at Jeff's joke, so he repeated it over again and again with a very wide grin, "Yeah, Mom, a mute!"~~~I hadn't seen Jessica for about five years. We hugged, and she mentioned the comparison between today and years ago. Sue B., her grandmother, has the CD "Journey With Jeff," but not the book. So, as I left the family's home later that afternoon the people were looking thru the pages to find the story about Jessica. Thank You, Lord, for good memories and warm reunions!

Brenda and John~~Caregivers

When I found Brenda on my Facebook page, I was delighted because she and her husband, John have long been important caregivers in our family's lives. They took particularly good care of Jeff when he was part of the Lifetime Assistance world for nine years, at his residence and in his work program. Then,(captured in the above photo) when Jeff was in the hospital for the last three weeks of his life, they often visited, listened to the joy of his music with him, and made him laugh. Brenda and John still pop up every so often in our lives. I asked Brenda what she remembered about Jeff. She wrote these details: "Mitch Miller, drums, walks; his love for everyone; so many special memories. He had a smile that lit up the night. He is thought of often, and always with a smile. Thank you for sharing him with the rest of the world." We were blessed by so many people!

Caregivers for Special Needs People

 
Before Jeff was born, caregiving was going on for children with Down syndrome in this upstate NY home. I visited with my friend, Joan when we were studying to be teachers at OSUNY near-by. Because Joan was familiar with Downs children, she knew Jeff had Down syndrome long before the E.N.T. doctor suggested it to Bob and me. Now, more than 50 years later, this home has become a Village -- of NINE homes. Lois Ennis has been a caregiver here for 21 years. After reading "Journey With Jeff; Inspiration for Caregivers for People with Special Needs," Lois writes: "In reading this book, I learned that Jeffrey was a very loving person. He brought joy and laughter to everyone he came in contact with, and they all loved him. Yes, there were very difficult times, but God pulled everybody through it." She continues, "I take care of children and adults, ages 10 - 69, with Down syndrome. I always remember that they depend on me and I need patience during a tough situation, but at the end of the day, the joys outweigh everything else. I'm so glad Jeffrey had his family, friends and music throughout his life, and so many programs to help him. This book was amazing, and a learning experience for anyone who will be connected somehow with special needs people. God bless Sybil and her family."~~~God truly HAS blessed our family with the stories of widening circles from the pebble of Jeff's life. Thank You, Lord!

Inspiration For and From Readers

It wonders me how many people have read the 565 copies of "Journey With Jeff" which are in a dozen libraries, or in their own library, and who have passed it on! One of my friends at church bought a copy, declared it "Fantastic!" and told her daughter, who is a nurse, "You have got to read this!" Her busy daughter made it a point to tell me, "I like the format, because the chapters are short. This makes it easy to read, put down, and pick up again."~~~The young music teacher who wrote the Forward to "Journey With Jeff" exclaimed, "The book really has taken on a life of its own, hasn't it?!?" She sometimes quotes a tidbit or two to the parents of her special needs students, hoping they will want to pick it up and read more.~~~One of the young neighbors we met when we first moved to Hamlin, NY, in 1976, is now a policeman. He saw the book in the library, recognized my name, and when he saw my husband at the library, he made a point of telling him he had read it. I am anxious to get in touch with him to hear his response to the story of Jeff, who was just about his age when we were neighbors. Yes, "Journey With Jeff" seems to have taken on a life of its own! It's pretty exciting, and I relish every single response from my readers!!

Family Support from "Journey With Jeff"

 
Most responses to "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"are from those who are caregivers of children with special needs. But, tonight I was surprised by a phone conversation with a member of our family, Dutch, who just lost his wife (my husband's sister)about three weeks ago. In his Pensylvania retirement community, Dutch was invited to be in a play called, "It's Laughter We're After." It will be presented on May 16th, the day before their wedding anniversary, and Dutch said, "Oh no, I don't think I can do that." He didn't feel much like laughing. Dutch has been re-reading "Journey With Jeff," and found himself at the last chapter titled, "And the Beat Goes On." As he put down the book he said, "Well, if Robert and Sybil can continue on, then I can too. Life does go on. And, so will I!" Dutch has a part in the comedy, and also will sing a happy little ditty he sang to Lois on anniversaries that made her laugh. Yes, Jeff's unconditional love and influence continue on! God is full of surprises!

The Joy of Life by Kids with Down Syndrome

 
Can you see and hear, and touch the joy in this photo of Jeff who is being treated to a ride on one of his very favorite things?!? Love of Life is his "shout-out" for the rest of the world to find the holy in the ordinary!~~~About a month ago, Susane Ashline wrote in her Democrat and Chronicle, "Mom's World" column about being at a Disney show at a resort. The staff was rounding up kids who would briefly go on stage later that night. While waiting for her own 5 year-old son's turn to practice, Susan became "wrapped up watching a little girl with a sandy blonde mop of hair and baby fat cheeks. She had Down syndrome. More than a dozen kids were practicing bit parts, but she was doing her own thing. When staffers talked to her, she talked to someone else. When the others were walking in line, she was jumping off steps. I wondered how this would play out on stage later. I worried for her. After several scene changes, to the tune of 'Under the Sea,' the girl with Down Syndrome entered stage left with a dozen other resort children; but she blew on like a tiny cyclone. She grabbed onto the adult actor playing Sebastian the Crab. I tensed. The other girls walked in a circle around the Little Mermaid, but the girl with Down syndrome jumped on the prop carrying the mermaid, and the actress' expression turned anxious. Just as quickly, the girl jumped off and went twirling around the mermaid, not in circles, but in her own designs, flapping arms and kicking legs. She spun around the floor, landing with her toes dangling precariously off the edge of the stage, teetered for one breathless moment, and then was off to a fast-rhythm, pounding beat, spinning and fluttering, twirling and floating; hypnotic, oblivious, carefree. She brought down the house -- 600 hands together in thunderous applause, and shouting and whistling. She wasn't the most graceful little girl on stage, but she was the most beautiful -- uninhibited, blissful. And the music rang out:'We got the spirit; you got to hear it, under the sea.'" Susan Ashline caught that utter joy so many people with Down syndrome display. I thank her for writing this column so others can see that beauty!