Caregivers, Take Note!

 
All Caregivers~~~plus many who have learned that the baby they are expecting may have special needs~~~please take a look at these words: "My face may be different, but my feelings the same. I laugh and I cry and take pride in my gains. I was sent here among you to teach and to love, as God in the heavens looks down from above. To Him I'm no different, His love knows no bounds; It's those here among you, in cities and towns that judge me by standards that man has imported, but this family I've chosen will help me get started. For I'm one of the children, so special and few, that came here to learn the same lessons as you. That love is acceptance, it must come from the heart. We all have the same purpose, though not the same start. The Lord gave me life to live and embrace, and I'll do it as you do, but at my own pace.-- Unknown author.~~~There are many e-mails, articles and blogs filled with the question about what it's like to have a child with Down syndrome. Comments and responses have spoken of the joy of being loved by one of these children, and of the help from new research and resources. I am deeply thankful that so much is going on these days with children who have special needs!

"Journey With Jeff" under Caregiver's Arm

 
"I'm bringing my copy of "Journey With Jeff; Inspiration for Caregivers of People With Special Needs" with me for our stay at Strong Memorial," a caregiver friend told me. She and her husband will be spending a couple of months at this University of Rochester hospital for cancer treatment for her spouse. Yes, caregiving for a child like Jeff may be different from caregiving for a spouse, but my friend believes she'll have the same feelings I wrote about dealing with Jeff being in the hospital. She pointed out the inspiration of the scripture quotes chosen for each of our God-stories. She liked the prayers following, which ranged from utter dismay at downturns in Jeff's health, to thanks for sending the right person at the right time, to exuberant praise when I sensed the holy in the ordinary.~~~My friend and I have not talked for almost five years as one thing after another has challenged her while being caregiver for her spouse. Now, I expect we may have some time together, with me as a "been there" listener and encourager. Perhaps she'll write an "Abba Father" letter or two to God, just as I did at low and high points.~~~O Healer God, put Your arms around this couple. Bless her as a caregiver, and heal her spouse quickly and thoroughly. Grant their doctors and caregivers at Strong much wisdom. Thank You! Amen.

 

Jeff and Mitch Miller

 
Earlier this week the world learned that Mitch Miller, a caring, charismatic, always smiling musician died at 99 years of age. Jeff enjoyed looking at his record album covers while listening to the "Sing Along With Mitch," popular songs, which came out in the early 1960's. A couple of long-time Lifetime Assistance, Inc. friends (who are sisters) wrote on their Facebook pages, "I bid a sad farewell to Mr. Mitch Miller followed by wonderful memories of an inspirational young man. Thanks, Mitch Miller for letting me think about him today." I replied, "Just a guess that you're thinking about Jeffrey Reisch and his great love of Mitch Miller? Jeff met him at Eastman School of Music in July 1988, when Mitch was here to conduct the Rochester Philharmonic Orchestra. Were you one of the staff who arranged that?" She quickly replied, "No, I was not one of the ones that arranged that meeting. I just remember hearing 'Mitch Miller!' so many times from Jeffrey. Anyone who knew and loved Jeffrey was well aware of his love for Mitch Miller. When I learned he had passed away my first thought was that Jeffrey would be so upset." Dennis Brown, one of the LAI managers who has been with LAI more than 30 years wrote, "Jeff was probably there to welcome him when he crossed over. What I wouldn't give to see that!" Yes, Dennis, that's exactly what I was thinking!!!~~~Another great outcome of these Facebook messages, is that I learned Marla Chefalo was the one who arranged Jeff's meeting with Mitch Miller. She said, "It was so much fun! They were both such good guys! I thought of that when I heard." My thanks to you for good memories because of your special efforts, Marla! The second sister concluded, "It's nice to have such happy memories returned to us. Jeff will forever be remembered with a song in my heart. Thank you for sharing him with the world." YES!!

More Alike Than Different

There are so many good things happening for people with special needs this summer! The National Down Syndrome Congress held its convention in Florida at Disney World. There's a great "We're More Alike Than Different" campaign happening, full of stories of how people with special needs are impressing the world around them. I loved the photo of Anthony Shriver (nephew of John F. Kennedy) lifting up a competing swimmer at Camp Shriver in Boston to congratulate him in winning.~~~Our son, Jeff would have loved all this activity. He began attending Special Olympics Events when he was little. Their Oath said, "Let me win. But if I cannot win, let me be brave in the attempt." Here is an excerpt from "Journey With Jeff; Inspiration for Caregivers of People with Special Needs," titled, "Courage! Sharing! Joy!"~~~"Good morning, God!" The chaplain, Jeff's dad, asked God's blessing on the day as the bright, warming May sky welcomed the Special Olympic games. Our excitement for Jeff and the other participants was brimming over. Jeff's teachers plus several of the families of his classmates were eager to cheer on every athlete's endeavor to succeed. Special Olympics began for Jeff in the spring of 1970 in Dunkirk, when he was almost 9 years old. I am eternally thankful to Eunice Kennedy Shriver, who started a day camp with her husband, Sargent, in their backyard in the early 1960s. This day camp for individuals included her sister Rose, who was developmentally disabled with mental retardation, and it launched the way for Special Olympics in the United States and around the world. Our opening parade in the city of Jamestown began forming with the mayor and our state senator at the head. A Sousa march burst forth from the loudspeaker, accompanying the athletes around the track, and their excited waves fired our applause. Then the sight that continues to thrill me every time I see it -- a runner lighting the Olympic torch. Let the games begin! The cheers from parents, teachers, aides and clasmates were deafening! At the end of the event each athlete received a special hug, among much cheering and applause. People in charge made sure all players were rewarded. In the 1970s everyone received a ribbon, even if it was simply for taking part. Now it was Jeff's turn for the softball throw. "You go, Jeff!" He earned a red ribbon -- second prize! "Yay! That's great, Jeff! Come get your hug!" (My prayer at the end of that day was, "Hallelujah! What a day! All that courage and sharing and joy! You enjoyed it, too, didn't You, Jesus?"

Parents as Advocates

 
These three women and I joined together in the mid-sixties to create an Association for Retarded Children. (In later years it became the Association for Retarded Citzens.) Each of us had a child with special needs, and we became aggressive advocates in order to learn everything we could to help them become all they were capable of being. In Massachusetts at this time, Eunice Kennedy Schriver and her husband had begun a Day Camp in their backyard for their daughter Rosemary and other children with special needs. This evolved into Special Olympics, which has grown into International Special Olympics today. When we moved to the Rochester area in 1976, ARC was already here. BOCES (Board of Cooperational Educational Services) continued to help Jeff with his learning. By the time Jeff was ready to move on, LAI (Lifetime Assistance, Inc.) had programs and residences ready to help. For the nine or ten years that Jeff was blessed by these services, I served on the LAI Board, whose programs and residences have extended to a total of 40. Several other Associations are also in the area. Now that professionals begin working with children with Down syndrome much earlier than we'd been able to when we began ARC in Port Jervis, NY., these students are graduating from school and even taking college courses! We've come a long way, Baby! YES!!

Keeping A Sense of Humor

When Jeff was little he created this hat for his daddy out of the innards of a box he found. He made us laugh heartedly -- as he made something out of nothing! Part of bringing up a child who lived with Down Syndrome demanded that we keep a sense of humor. (That has helped a great deal these past weeks as I attempt to get my computor working again after the chirps and clicks in the tower indicated the end of my hard drive.)~~~Meanwhile, "Journey With Jeff"continues to make ripples in the lives of readers of Jeff's story. One of the women in our Lutheran congregation is a nurse who's going back to school to advance her degree. Her family of teens and pre-teens with all their activities create an awesome schedule! She says, "Journey With Jeff"has great short chapters that I could read, and put down, then pick up again without forgetting what I'd read. I really enjoyed that book!"~~~A fellow-writer at a new group I've started attending followed up a meeting with a message to me on Facebook. She wrote: "I just finished reading the book about your son and very much enjoyed it. I like that you didn't glorify what happened -- you were very honest about your feelings and experiences, good and bad. Thank you for writing about your son." And,I thank you for YOUR encouraging words!