A Caregiver Revitalized and Reinvigorated

 
It was just the right medicine this caregiver needed! The Fire Captain manning the serving table for a community dinner of barbecued chicken asked me how my book was doing. I wondered how he knew about Journey With Jeff. "The action has slowed down a bit," I replied. "That happens," he sympathized. I pondered the connection we may have had as my husband, Bob and I enjoyed the deliciousness of the meal. When we left, I asked him how he was aware of Jeff's story. "I took your picture at the Barnes & Noble Author's Event last year. Remember the fireman I was phographing all evening, and then he gave you the copy of his poem, "Snowflake"? I asked you that evening how your husband was doing." Yes, I remembered. I had been twice-blessed!!

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!

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!

Family Support and Encouragement

 
This past weekend bitter mixed with sweet as we celebrated my husband's sister Lois' "Giving Tree" life of 88 years, and as we realized the deep, empty hole now in our close family.~~~Jeff has always been welcomed in this huge family. The pebble of his 27 years on this earth, tossed into this family, has caused ripples in people's lives resulting in careers in special education for at least three or four members, and in several volunteer's hours. Caitlyn is in her Junior year in college, ready to do her Student Teaching in classes of students with special needs. Her nine year-old sister has Down syndrome and has been integrated into a third grade class. We're so pleased...amazed at her progress!~~~Our nephew, Mark has been working with people with developmental disabilities for many years. There are more and more discoveries of things the members of our family are doing with people with special needs. The folks in the photo above are only about half of the family who gathered for Lois' funeral. More are scattered around the country, with a number of them involved as caregivers of people with special needs. We're so proud of them!!

Caregivers in Batavia, NY

There were several caregivers in the audience when I made my presentation of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"at the GO ARTS! evening program. Some had heard the broadcast on WBTA the previous Thursday with Joe Langen and me inviting everyone to come.~~~Some of the caregivers were both mothers and special education teachers. I was moved by their tears of empathy as I told the story of going from "Why us, Lord?!" when we discovered Jeff had Down syndrome, to "Where do we go from here?" then examples of all the people God sent to help during the years Jeff was growing up.~~~There were great comments and questions, such as, "How did your husband respond to Jeff's special needs?" (He believed his job was to be breadwinner, and that my mother's wisdom would get us through -- that was the way families operated in the 60's and 70's -- although he was very supportive in helping whenever I asked.) "How did your daughter, Jennifer handle the teasing, and the extra time spent with Jeff's special needs?" (She told them, "He's my brother!" because that's just the way it was, and she became very independent.) We talked about GUILT, and I read an excerpt titled, "Movin' On," a letter I'd written to other parents who were considering a Residence for their son. This covered guilt pretty well. Joe Langen suggested that I ask Jennifer how I could spend more time with her NOW. YES! That's a great idea, Joe!~~~By evening's end, a number of listeners had bought copies of "Journey With Jeff," plus the CDs of Jeff's story. One man told me he bought the CD so he could hear it again. "I have learning disabilities," he said, "but if I can hear things again I can absorb it, and once I have it, I don't lose it." I'm so glad Jeff and I could touch his life, plus some other lives. It was a wonderful evening with wonderful caregivers!!

Community Support at WBTA--Batavia,NY

Wanda Frank, WBTA Host, was a great encourager as I spoke about "Journey With Jeff; Inspiration for Caregivers of People With Special Needs," this morning. My writer buddy, Joe Langen was there too, to present this as a springboard for the GO ARTS program across the street next Tuesday evening. Wanda asked me about what Jeff was like as he grew (happy, busy, loving music, loving people;)what I said to people who stared or were negative ("Hi, this is Jeff. What's your name?" - he's a regular person;) what helped me as Jeff grew up(patient friends, teachers, and doctors, and reading as much as I could get my hands on;) when I decided to write this book (when a doctor told me "These children never learn to read. They never go to school. They never This. They never That;" and how I wrote the book (by bringing together Jeff's Progress Report I kept in the back of his photo album, and my Journaling when I felt challenged, or full of joy.) In the one minute left to sum up, I said, "I wrote this book to encourage caregivers of people with special needs, including the Sandwich Generation who care for aging parents as well as children. I wrote it so they will never feel as if they are all alone." I hope the people who heard the program on WBTA will want to hear more at the GO ART presentation in Batavia on Tuesday evening!!

Adopted Children with Down Syndrome

"The cover of your book about your son, Jeff has his picture on it when he was one or two, doesn't it?" asked the sales clerk when I checked on its progress at Alpha and Omega. "No, Jeff was four in that picture. He has Down Syndrome." The man's manner brightened immediately. "We have a lady who works in here who adopted two children with Down Syndrome, a girl and boy only four months apart. She wanted them to grow up together. She has six other children who do not have Down Syndrome. This is one special lady!!" He was enthusiastic to tell me he had invited them out to his home where they could ride horses, which they thoroughly enjoy. "I love to have them around. There are lots of smiles and hugs, and there is no pretending with them -- they are right up front!" We concluded that the love that children with Down syndrome give is an unconditional love. I remember Jeff often saying to the people in his Lifetime Assistance, Inc. residences "I love you!" Some would say to him, "Ah, Jeff, you say that all the time. You don't mean it." And Jeff would simply reply, "I love you!" and leave it at that. This conversation in the store was a great blessing for me.

Music Eases Special Needs

I don't cry as much anymore remembering Jeff's death, but I cried today. We celebrated the life of my friend's daughter, Kathy who died after four and a half years of battling cancer. People came and came and came, as they did to Jeff's funeral. Music was a big part of Kathy's life. She used to play her guitar for a group of people with special needs at the SEEDS group which met every other week at her church. (Jeff loved going to his SEEDS group!) Her Memorial Service was full of the music she loved, and it comforted us who cried. Kathy's mom and I had served together on a Lutheran Women's Board years ago, and mutual thoughts of losing a child were felt in our moment of clasped hands on the way to communion. The music at Kathy's Memorial service eased our own special needs as caregivers, as well. Thank You, loving God! (Photo is of Jeff enjoying "making his own music.")

Respect for an Inherent Dignity

At a Lutheran Book Club discussion of "Journey With Jeff," one of the members experienced an "aHa Moment." She wrote, "Your book has made me more accepting of everyone just as God made them!" A new respect for the inborn dignity of all God's children was born! What an accomplishment, AND what a blessing this will be for everyone! She also said she "liked my format and found it easy to read -- each chapter a lesson in itself." She thanked me for putting my feelings "out there where hopefully we can all learn from them."~~~The presiding pastor added, "The discussion went really well. We talked about the style of writing, which we appreciated, especially the letters to God. We could picture Jeff, his struggles, the seizures and surprises, and talked at length about the time period that Jeff was alive. It was a great conversation that flowed well, and I encouraged everyone to send you an e-mail, or a letter, or to friend you on Face Book."~~~YES!~~~What a joy to know that eight Lutheran Book Club members joined together to read and discuss the story of our joys and challenges, and how God has blessed us and so many people through Jeff!

US Representatives Help Kids With Special Needs

The National Down Syndrome Congress reports that on March 3,2010, the Keeping All Students Safe Act (S.2860) passed the House of Representatives on a 262-153 vote! U.S. Representative Cathy McMorris-Rogers, mother of 3 year old Cole who has Down syndrome stated: "I am genuinely pleased by the House's bipartisan support for the Keeping All Students Safe in Schools Act. This critical piece of legislation confronts the unimaginable situation in schools across the country whereby some of our nation's most vulnerable children are treated in an inhumane and degrading manner. The thousands of incidents reported by the Government Accountability Office and others together with the piecemeal approach taken by the states demonstrates the need for federal guidance. I've been proud to work with many organizations and this is a victory for them. I thank Chairman Miller for his leadership and my colleagues for their support. Together, we work to ensure this bill is passed by the Senate." The focus now turns to the Senate and the intense effort that will be needed to pass the bill. Keep tuned, folks, we need to be aware of how to support, and be effective advocates for our children with special needs. Thank you!

Singing to Grandbabies

 
From the moment the tenor grandfather could finally hold his granddaughter, born prematurely at 24 weeks, he sang to her! She struggled with lung, heart and brain issues, and his singing calmed her. Our congregation, and many other people held this baby with special needs in prayer. She lived for 162 days, affecting the lives of many. At her Memorial Service this weekend, her grandfather sang, acappella, "Here I am, Lord." Cheeks were wet. Sniffles were audible. Music is such a special way to communicate!!~~~When my children were small, my mother used her beautiful voice to sing to Jeff and his sister, Jennifer. (See photo.) When Jeff had trouble with his seizures, and said with panicked eyes, "My head moved, Mom!" I remember singing nursery rhymes with him until he quieted down.~~~ When Jennifer's children were born they lived 1000 miles away, and I feared that our grandkids would not know who we were. I read stories on tape for them to listen to in the car as they traveled, singing the rhymes to them, wrapping them in a long-distance hug each time. Singing to grandbabies is a special way to communicate.

Review #11 on Amazon.com From Long-time Friend

Two differently abled boys grew up together,...one with scoliosis and one with Down syndrome. Jeff's friend wrote about "Journey With Jeff" in the Amazon.com review: "This is an inspirational story about a family that I knew when I was growing up in New York state. Jeff was a friend of mine and was full of love and joy. He was one of the most happy people I have ever met even though he was born with severe challenges. This book chronicles my friend's life, his parents' struggles and joys, and the family's incredibly strong faith as they journeyed with Jeff through his special life. The book is written specifically for inspiration for caregivers of people with special needs, but the story is inspirational for all people. This is one of those books that you keep after you've finished reading and turn to it when life throws you a curve."~~~I was delighted to discover this eleventh review on the Amazon.com page! I invite everyone who has read "Journey With Jeff" to write a review to help others know this encouragement. Thank you!!

Hospital Days With caregivers

 
When Jeff was in the hospital his last three weeks with leukemia, many caregivers walked in and out of his room. These included his pastor, the Lifetime Assistance Inc. staff, as well as family, friends and the nurses on his floor. We were deeply blessed with all the people God sent to care for him.~~~Since September 2009, a micro-preemie from our congregation has been surrounded by caregivers at Strong Hospital, with her family sticking very close. She has struggled with heart trouble, bleeding on the brain, difficulty breathing, even some pneumonia. For these past 162 days her mother has kept a daily journal and photo log on a Caring Bridge website, writing from the baby's point of view. (When Jeff was young I wrote his thank you notes and kept Jeff's Progress Record using his voice.)The support of family and friends, and even strangers has added up to about 22,000 hits on her Caring Brige website, with 126 responses to her story. Sunday morning our congregation learned that this precious baby we'd carried in our prayers for five months had gone Home to be with Jesus the night before. Pastor Mike had baptized her while she slept in her mother's arms and then her mom and dad were able to hold her and each other. We are sad that this little girl was on earth for so short a time, but we rejoice that her mom and dad and their family believe she'll be welcomed by her great grandparents waiting for her in Heaven.~~~Seeing Jeff again is our great hope, as well!! (Photo is of Pastor Don Miller visiting Jeff in the hospital, Oct.1988)

"Journey With Jeff" for Caregivers

My book,"Journey With Jeff; Inspiration for Caregivers of People with Special Needs"has been on the Rochester, NY, communities' Wegman's Store shelves since the middle of November. Four copies were in each of five Wegman's stores, where I checked a couple of times, and was pleased to see only one or two left on their shelves! This week only three books were returned to me, which means 17 are now out in the community, telling caregivers they are not alone! I hope they'll accept the invitation on the last page of "Journey With Jeff," to send their responses to me at my e-mail or snail-mail address. Those responses are such an encouragement to me!!~~~Jeff's special needs were spelled out by Down Syndrome. His friend, Brian, who wrote the response to "Journey" in the previous blog, "A Tribute to My Special Friend," was inspired by Jeff when he had to face experimental treatments and finally spinal fusion surgery for scoliosis as an 11 year old. I asked Brian how he'd learned about the book and he pointed to this blog and/or Amazon.com. "It's one of those books I'll keep," he said, "and, refer back to when I need inspiration."~~~The first lines of a poem by James W. Foley titled, "Drop a Pebble in the Water," suggest how Jeff's story has spread to -- who knows where? "Drop a pebble in the water: just a splash, and it is gone; But there's half-a-hundred ripples circling on and on and on. Spreading, spreading from the center, flowing on out to the sea. And there's no way of telling where the end is going to be." All praise to You, O Lord!!!

One Special Friend's Tribute To Another

 

Brian's tribute to his special friend: "When I was young, I had a special friend that I saw almost every Sunday in church. My friend was special in many ways and helped me learn many things that a little boy might only learn from having such a friend. I can't remember when we first met, but I do remember that he was such a regular part of our worship that I could not recall attending church without him being there and missed him when I no longer saw him. He sang the songs, loudly, and just a little bit longer than everyone else. He prayed loudly, and added his 'A-Men' just a little later than everyone else. He was not shy and he was not embarrassed, he was proud to sing and worship and perhaps he made the entire congregation feel loud and proud as well, because that church could sing!~~~We would usually meet after the service and I remember at first feeling awkward when he hugged me, as a young boy sometimes does, but eventually I learned what an amazing greeting and gift these hugs were. His Mom would help him explain his latest accomplishments and helped me understand some of the challenges my friend faced~~~Of course, the friend that I am remembering so fondly is Jeffrey Reisch and what I remember so clearly was how much he loved people and the church. I can't recall most interactions with Jeff, it was about 30 years ago, but I can convey how much of an impact he made on my life. He was so enthusiastic with everything that he did, he was so very proud of his accomplishments, and he genuinely cared for other people.~~~Facing a physical challenge when I was young, I could look to Jeffrey as an example of how to be brave in difficult times and to keep my chin up. Jeffrey's positive outlook and cheerfulness were an inspiration to me as I faced experimental treatments and finally spinal fusion surgery for scoliosis as an 11 year old boy.~~~Although Jeffrey was a part of my early life, his entire story eluded me until I saw that Mrs. Reisch had written "Journey With Jeff."Although I am not a parent of a special needs child, I was compelled to set aside all other reading material to read Jeff's story. The book not only enlightened me to all of the joy and difficulties the Reisch family faced, but gave me inspiration as a parent of two young children. Mrs. Reisch's amazing perspective and faith are an inspiration to parents struggling with raising children and facing any sort of adversity.~~~Jeff truly was an amazing individual and anyone that met him was truly blessed by his spirit. Reading the book brought back memories of the wonderful spirit that Jeff had, and reminded me how lucky I am to have known him. Someday, I hope to be welcomed into the kingdom of heaven where my friend Jeff will greet me with one of his great big hugs!" Me, too, Brian!!! I can hear Jeff now, saying, "Brian's my friend, Mom!!"

Caregivers! Don't Give Up!

A long-ago friend surprised me with a note about her own care-giving years with her little girl, born in the mid-sixties. "We almost lost her from birth," she wrote. "She couldn't assimilate her food, and would fall asleep as soon as she began nursing. She cried incessantly! Only a goat's milk formula saved the day. She was born with a mal-formed hip, with her little foot smack up against the front of her leg. The pediatrician put her in a brace when she was about toddler-age for night-time use." My friend almost didn't make it through the baby's birth herself, and now she and her husband had to handle this challenge. "I cried my eyes out!" she said. "I had postpartum depression big time! I didn't want my baby! That changed, and I still adore her, and admire her for coming through her own family difficulties."~~~Her conclusion: "So you see we can readily empathize with the trials you write about in 'Journey With Jeff.' There was a time I shut God out. It was a long, lonely time. It is no longer so. I have grown in grace." This is the reason 'Journey With Jeff' was written, so that other caregivers also may have hope and faith, and grace. (Photo is of Jeff at six months.)

Community Inspiration and Encouragement

Community inspiration and encouragement came early in Jeff's life, interlaced with those who tried to point out that Jeff might have special needs. I did not see it, and I did not want to hear it.~~~Helene and I were young together in our congregation, and she says she remembered me sitting in the back of the church with baby Jeff, and hearing his breathing, and being afraid he would choke. She admired the way I dealt with it, with seemingly calm courage. Actually, for about two years I was in deep denial.~~~Helene's husband, Ed, was a professional photographer. He took photos of Jeff, beginning at three months, through his fourth birthday. What a legacy! His photo of Jeff at four years made the cover of "Journey With Jeff: Inspiration for Caregivers of People With Special Needs."~~~This past Christmas Helene requested a copy of "Journey With Jeff." She wrote: "When I received your book I decided that from now on nothing gets done until I have finished!" Her conclusion: "Journey with Jeff is a heart-warming, heart-rending book. It portrays the devotion, frustration and courage demonstrated by parents and caregivers of special needs children. It also teaches parents of children who have other either mental/physical disabilities how to cope -- with the Lord's help. Even in the 60's the term mongoloid was a cruel definition. A professional never should have used that term. Retarded isn't any better. God bless you both for nurturing Jeff's heart and soul with love for his Lord. Bless you for keeping the faith in times of trial, and loving each other so much, so Jeff could thrive in that atmosphere. Bless you for letting us all know that Jesus is our Best Friend as well as our God who we can talk to just as we speak to our earthly friends. The format of "Journey With Jeff" is special. Appropriate quotes at chapter beginnings, and the prayers at the end. Jeff gives to all who read his story his love and caring through his dedicated parents who helped him achieve his full potential." Helene's words are an example of the kind of community support and inspiration the Lord sent to encourage us, to show us we were not alone.

Hope For Challenges of Children with Special Needs

Sharon Gibson has written, "The Seven Habits of Highly Effective Parents Raising Children with Special Needs." modified from Stephen Covey's, "Seven Habits of Highly Effective People." We strongly supported these Habits as parents of Jeff and Jennifer. They are intertwined within stories in "Journey With Jeff: Inspiration for Caregivers of People with Special Needs," written to encourage other parents, families and friends, so they'll not feel alone! Gibson writes about them on "About.com: Special Needs Children."~~~In short, these Seven Habits are: (1) Be proactive. Educate yourself. (2) Begin with the end in mind -- the next 10 minutes, the end of the day, 20 years down the road. (3) Put first things first. Your life doesn't need to be completely defined by your child's disorder. You are still a family. Don't forget other family members. (4) Think WIN/WIN. Help others understand how helping your child will help them. (5) Seek first to understand, then to be understood. You may need to educate, educate, educate. (6) Synergize -- Connect with other parents and families. You are not alone. (7) Sharpen the saw. Take care of yourself -- spiritually, mentally, physically and socially. Yes! YES! YES!!! Check these out in full on www.abaresources.com/familycorner/

A Caregiver with a Tail

A caregiver with a tail has been coming to our church services and activities for about four months now! KODA is an eight-month old sheepadoodle dog who is being trained to sniff out life-threatening allergies for his teen-age master, Tyler. The family has named him KODA, which is an anachronism for Kids Overcoming Deadly Allergies. Right now they are teaching Koda to "Search!", so that he can later find the foods that will harm Tyler. He will learn to react to each allergy with a different response. Koda loves playing ball with Tyler and his sister Becca, and this ball will be his reward when he finds the threatening foods for Tyler.~~~The important job of all parents is to prepare a child with special needs to be able to live on his own in the future. These days, when there is a party, his parents will make it a special point to put the foods Tyler can eat in a bowl especially for him. In this way, others helping themselves to the main bowls (ie. potato chips, cheese curls, taco chips, etc.) will not contaminate the bowls with dangerous food on their hands. He has his own food at school and at church. As Koda completes his training, he will help Tyler go through his high school years by sniffing out allergies, and if Tyler does have an attack Koda will pull his medication from his backpack and bring it to him. Therefore, Tyler can live a life at school, at college, at work without the constant worry about foods making him sick. How amazing new developments for children with special needs have become! (Photo is of Tyler and his dad putting Koda's working vest on him at church.)

Caregiver Finds "Welcome To Holland (Part 2)"

A parent of a child with special needs was searching for a story she had heard about landing in a country much different than where she had been heading. Someone sent her to a website quoting, "Welcome to Holland," by Emily Peri Kingsley, which I had used with her permission in "Journey With Jeff."~~~On the same website was Part2 of "Welcome to Holland," by Anonymous. I found this so profound, I'd like to share it with my readers.~~~"I have been to Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.~I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.~I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.~Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.~I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?~Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways, too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.~I have come to love Holland and call it Home.~I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.~Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!" Thank you, Anonymous -- dear caregiver of special needs children -- for your enthusiasm and encouragement!!

Caregiver Newsletter AND Book Study

 
Sent "Journey With Jeff: Inspiration for Caregivers of People with Special Needs" off to Illinois this morning. It was sent in response to a request from a man for a review copy in order to include a few excerpts in their Parent Support newsletter. Now, THIS is the reason my book was written! Parent Support! I have no idea where this man learned about "Journey With Jeff," but this blog has been included on my Face Book page, plus I often respond to other blogs about children with special needs. So,...it's out there!!!~~~Another pastor friend has asked about acquiring copies of "Journey With Jeff" for their Book Study group to use in February. I am delighted that the story of our joys and challenges of living with a child with Down syndrome is finding its way to so many! The responses from my readers are extra special, and I look forward to every one!