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!

Caregivers of People With Special Needs

Met Rosalie at her presentation of "Sage-ism, Not Age-ism," about helping elders be all they can be. Since my aim for Jeff was for him to become all he was created to be, I offered "Journey With Jeff; Inspiration for Caregivers of People With Special Needs" to her to examine. She said she knew someone who might really appreciate it, and took it home to read. Today she wrote to me: "I have finished reading 'Journey With Jeff', and it is truly an amazing book. I fell in love with Jeff early in the book. I felt his pain as the seizures came and went. I was overwhelmed by the love you and Bob have expressed. I had empathy with Jen.~~~I found your style of writing short chapters very, very effective. For me, it was "just enough" to learn what was going on in Jeff's life. If the chapters went on and on, it would have been overwhelming emotionally for me. ~~~I would read one, maybe two or three chapters and stop to reflect on your experiences, the scriptures that you chose. I loved the use of words from songs as well.~~~In my experience, there is only One Story...it is the story of God's love for all of life. So, for me your story tells me that Sybil and Bob are reflecting that One Story. My life is blessed even more because I have met you and Bob, and read "Journey With Jeff." You gave me such a beautiful gift, Sybil, when you asked me to help you share this story. The Spirit of the Living God wanted it to happen, and I pray you find more ways to share your story."~~~This is the way the story of God's love in our life is spread -- by those who share "Journey With Jeff" with others in their world. Thank you so much!!!

"Journey With Jeff" on Google Alert

About seven blogs ago I wrote of Michelle, who had lost four babies by miscarriage. When she was expecting again, tests showed the possibility of having a child with Down syndrome. The doctor asked if she wanted to abort, and she said, "No way!" Her son is a fine, flourishing four-year-old today. The tests were wrong! ~~~Here is another story, quite the opposite. Patricia Bauer writes in her blog about an Oregon couple who seeks $14 million in a "wrongful birth" lawsuit. This is to cover the cost of raising their 2-year-old daughter born with Down syndrome, providing education, medical care, and speech and physical therapy. Deborah and Ariel Levy said they would have gotten an abortion if they had known their daughter would have the condition. They said they were given incorrect information , and their lives were changed because of it. There were many responses to this article: Keri says, "Some people expect their children (and other people's children) to be born perfect and to stay that way." The NWDSA is concerned with the tyranny of perfection at the heart of this. Two readers say," Just think what this is saying to their two older children..."We love you both so much (just like we love your little sister) but if you had a birth defect (or maybe if you develop a problem) we'd wish that you'd never been born." Chris says, "Since the Levy's don't want their burdensome daughter, I'll take her!" Keri continues, "I get such joy from my daughter, and I couldn't imagine her any other way. She's an amazing individual and I know that she will go far in life. Anyone who doesn't think so needs to get out of her way!" I love that last statement! What enthusiasm and encouragement! It's an acceptance of their daughter, and her incredible potential to be all that God created her to be!

Caregivers at Retirement Community

We did it! One of the women at the Passavant Lutheran Retirement Community bought the 500th copy of "Journey With Jeff." She was very surprised when I told her she had won the prize -- my 5CD package of "Journey With Jeff." So, she can read the book or listen to the CDs in her car or in her home, or pass it on. She was pleased, and so was I! ~~~ Other great moments for me were the women who came forward to where half a dozen posters hung of Jeff's life -- from his 3 month-old photo with his big wide-open eyes, to the photo of him sitting in his favorite innertube the last summer he went to Camp Joy. One person shared with me how she worked with children at a Lutheran Institution for Children with Special Needs for 25 years, another shared the years she lived with a son who didn't speak until he was a teenager, and a mother of a Down Syndrome girl shared her joys and challenges. These are the things I treasure! It was an awarding trip!

God Doesn't Make Mistakes

Discovery!!~~A video on You tube that celebrates the joy of a child with Down Syndrome! The video, "God Doesn't Make Mistakes" can be found on www.youtube.com/watch?v=NfuaNhXI1Ao. Why was Jeff born with D.S.? Why was his friend next to him on the stairs born prematurely? What made his older friend take them both under her young wing?!? I do not know; but what I do know is that all of us mothers were blessed more than we ever thought possible!
Doctors don't know it all -- they need to learn from us mothers! We need to stay on top of situations, and be a team with doctors, teachers, and other people in our special needs children's lives. No, God does not make mistakes!!

Music Lover

Look closely at that face ~~ innocent? Plotting? Maneuvering? Mom has just said, "Get down! Now!" after a book in Jeff's hand "helped" the record player play the records. This photo is an illustration of one of the stories in "Journey With Jeff" about his love of music, which began very early. As soon as he discovered that melodies came from that box we called the record player, Jeff climbed up as close as possible to watch and to listen. One of his favorite albums was A Child's Introduction to the Orchestra. He learned the sounds of all the instruments, often pointing them out within the music being played. "Bass Fiddle, Mom!" he'd shout out with glee. We were hearing more and more words, and delighting in Jeff's delight. When the music began at a church service, Jeff's head lifted from whatever he was doing, ready to sing along in "Jeffanese" with the congregation. By the time he was an adult, people were aware he was attending church that Sunday when they heard his voice singing the melody -- just one beat behind. (FYI, Jeff did get down. He left the book on a table and climbed right back up.)

Lifetime Assistance Inc. Celebrates 30 Years!

What a wonderful party! 700 people were there for dinner, and to hear our host Don Alhardt (Channel 13 TV) introduce the people behind LAI's success, and then ready to Rock and Roll to 50's music. (See photo on the right ~~ Jeff would have been loving this!) ~~~ The highlight of guests was J Mac, the Athena High School athlete with autism who made national news when he scored 20 points in a basketball game, and when he met President and Mrs. Bush. He gave autographs and posed for pictures with several people after dinner. There was a slideshow of people and activities down through the years - and Jeff was up there! But the many clients who attended were anxious to get to the dancing, and the M.C. known as Bowser, played rock 'n roll music and hoola hoop contests, and dance contests, so several people ended up with "Bowser" tee shirts. ~~~ The best part of the evening for me came with the people who said they had read "Journey With Jeff," and thanked me for it. One of the training staff was surprised when I told her she was a Caregiver, too. She had never thought of her job that way -- her "eye-opener" from the book was the way we as parents coped with having a child with special needs. We had a long, warm conversation. My husband and I sat at a table close to the stage, with long-time friends, and new friends. It was an awesome celebration!

How do you read "Journey With Jeff"?

Hello again! My schedule was much too full a couple of weeks ago, and consequently my back stressed into spasms which lasted longer than usual. My doctor found that my asthma was aggravating things, slowing the healing down. I knew my doctor had picked up "Journey With Jeff" when a friend from church took it to a doctor's meeting and he proclaimed that he should have it first because he knew the author best! I asked if he had finished reading it, and he explained he's reading it a little at a time. My pastor is using the book as a devotional, reading it a day at a time. A couple of friends have said they read it through in one day, not wanting to put it down. How are you reading "Journey"? Have you written a review on Amazon.com yet to recommend that others read Jeff's story?~~~ This excerpt follows the previous blog's excerpt. It is titled, "Struck Numb." ~ "My God, my God, why have you forsaken me? Why are you so far from helping me, from the words of my groaning?" Psalm 22:1 ~ Eighteen-month-old Jeff was happy anywhere he went. He loved to smile at people and to give them hugs. I knew he wouldn't mind seeing another doctor, but I was on edge outside the unfamiliar office and impatient to know what this doctor would tell us about the persistently noisy breathing. ~ The nurse opened the door and called our name. Jeff grabbed my fingers and two of Bob's, lifted himself up, and led the way into the office. The nurse smiled, and I returned her smile, hoping it foretold good news. ~ Healthy ivy and spider plants hung from the windows and there was a palm tree in the corner of the room. I wondered, Did I water mine at home? The faint smell of rubbing alcohol, the tall cabinet of instruments, and the examining table in the middle of the room rudely reminded me of where we were. But I liked the Mozart that was playing, glad it wasn't popular or show tunes because when I had something important to do, classical music always helped me concentrate. ~ The tall, slim, forty-ish looking specialist appeared and spoke to Jeff and to us. He was quiet and friendly, and took his time checking Jeff's history, watching him pull himself around the office mostly in a sitting position. "Okay, Cowboy!" he finally said, "Are you ready to get up here and let me check you out?" ~ With a big smile, Jeff allowed himself to be lifted up onto the examination table. While he checked Jeff's active body and I held my breath, the specialist asked unhurried, studied questions about that noisy breathing. I began to relax and to feel optimistic. ~ Then he asked about the age at which Jeff had raised his head, sat up, stood up, and started walking. "Jeff took his first steps along about four weeks ago," I told the doctor with a proud grin. "He loves walking around our house, pulling us by our fingers, trying to race with our bouncing dog." ~ "Seventeen months old when he started to walk..." said the doctor slowly. "Did you ever think, Mr. and Mrs. Reisch...did you ever think that Jeff might be retarded?" ~ Suddenly I couldn't breathe. The room seemed very hot. Retarded? Our baby? Impossible! Slow maybe, but nothing to be worried about. The doctor's voice, describing various signs of retardation, darted in and out of my thoughts, shooting down bright hopes and dreams for Jeff one by one, exploding them out of existance. ~ I wanted to scream at the doctor, "No! You are wrong!" Instead, I gathered our papers and our coats mechanically, cold shivers running down my back. I needed desperately to get away from that office. Bob's arm steered us steadily to the car. Holding Jeff close in my arms all the way home, I rocked him and crooned insensibly, "Bye baby bunting, Daddy's gone a-hunting." ~ My voice cracked, but I kept on crooning. Numbly, staring into space, with tears running down my face, I repeatedly told myself, "When Jeff wakes up he will be our normal child again. Please, God." How do I pray, Lord? How do I pray? (Photo is Jeff at 2 years.)