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!!

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.")

"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!!!

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!!!

Movin' On (Conclusion)

Sometimes I even forgot about Jeff...a thought of him would surprise me as I passed his old room. Guilt! Guilt! How could I forget my own child? I had to ask God to forgive me for trying to be "Super Mom!" I was acting as if I should be able to handle this major change in our lives with no trouble at all! My own free time was filling up with new activities. Now I could be on the Lutheran Church Women's Board. I went to a counselor for help with this major change in our lives. She said I was like a kid let loose in a candy store -- I wanted it all -- now! After four months at MDC, Jeff moved into the Lettington Drive Residence. More caring people continued moving in and out of our lives, surprising us with their capabilities and availability. Jeff tested the staff as they encouraged his independence. He didn't want to do all that work around his house. He wanted to play his records up in his room. "I want to come home, Mom." I shook my head, choked up. The final time he asked, he said, "I want to go home, Mom...Tough?" Where had he heard that response? From me? From the staff? Lifetime Assistance Inc (LAI) opened a Residence in Brockport. Five years ago in August Jeff became part of the family of ten. Now he was closer to home! People in Jeff's residence go out to so many activities together! They go to the Ice-Capades, circuses, magic shows, games, movies, parties, picnics, out to dinner...I'm jealous! Several people come to the Seeds Group from the LAI Residence. We get to see Jeff there at least twice a month. And he and I share a whole week at Camp Joy. We have him home for a few days at holiday times. The staff help him get to our church several Sunday mornings. We see him at LAI parties and picnics and games. It's good to have him come home, and it's good to see him go. We stay on top of things with the staff -- ask questions, help out. We're a team...with a fierce detrmination for Jeff. Leaving home is hard all the way around...But it's pure joy to see how much these young men CAN do in God's world. Just watch, my fellow-parents! You'll see!~~~ (Journey With Jeff: Inspiration for Caregivers of People with Special Needsis available on Amazon.com. Note their descriptions and reviews.)

Inspiration and Encouragement

Jeff loved Camp Joy! He loved Joan Van de Wall, Camp Joy Director! Joan was there at the end of Jeff's earthly life, when he told her he was ready to go to see Jesus. For a while I couldn't go back to Camp Joy, but I wrote about it in the script of "Journey With Jeff," first produced in a 5-CD package. When Joan listened to these she wrote, "Your tape is an absolute spiritual piece of hard and struggling work! It is an inspiration to all who listen. I can feel your hurts, struggles and at times discouragement. I could also feel Jeff's emotions, which brought back many memories. I could feel Bob's struggles, too, and his faith. Yes, Jennifer, too --her patience at times and her love for her family, and Jeff. This work of Discipleship is great for anybody who is struggling with their problems -- the same 'God, hear my cry;' and 'God, help me to listen and trust;' and 'God, I love you, help my unbelief!' Jeff's faith just shines through like the light in a dark room. He sure is a precious gift to all he encountered."~~~Joan bought a couple dozen copies of "Journey With Jeff" to give away to her Camp Joy staff. Memories were stirred. People became aware of what parents of people with special needs go through. Some said it was amazing what Jeff could do, and what he could understand. Camp Joy's staff is incredible, too. They have been loving caregivers for more than 25 years! I can hear Jeff's affirming, "Yeah, Mom!!" now.

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!

Caregiving For Caregivers

My neighbor is a Social Worker, a caregiver for many people. Last summer she bought a copy of Journey With Jeff: Inspiration for Caregivers of People with Special Needs.Today I asked if she had been able to plug in Jeff's story with any of her work. She said the book opened her eyes so she could help parents deal with difficulties. She was enthusiastic as she spoke of sharing it with co-workers who had people living with Down syndrome in their care, and with others in her office. Parents to whom she loaned her copy told her it was worthwhile reading. Caregivers need caregiving, and I'm so glad to see my neighbor pass it on!

Encouragement On The First Day of Spring

 

It pleased me very much last Friday when the Wellness Center elder seniors responded with laughter, questions, and their stories at my presentation for Journey With Jeff! We encouraged each other with such comments as, "All the children with Down syndrome I've ever met are very loving." Of course, I was happy to agree with this! One mother has a son who is differently abled whom she knows she will lose soon. I'm glad she could share that grief. Caregivers need caregiving,too. A woman said there were twins in her family years ago, both of whom had special needs. Many resources were not available then as they are today. One of the boys grew up to live a fairly normal life, while the other was shut away from the public eye. An Asian grandmother asked me if I agreed with her about not allowing the teacher of her granddaughter, who is an adopted child from China, to put her back in the previous grade now, instead of in September. My encouragement was to agree that she tell her children this. Before my presentation began, a woman bought Journey With Jeff, but her husband said he had no time to read such books. As everyone was leaving, he said, "I think you've convinced me that I should read your book, too." Yea! Now that was encouragement for me!

Encouragement

We all need encouragement! This week at our Lenten mid-week service our Pastor encouraged our sharing with someone else the Good News of God's love and care, by giving each of us a $5 or $10 bill to match and to pass on. There was a Benefit Show for Caitlyn, a 10 month old girl with Neuroblastoma this weekend to help off-set the costs of her treatment. To encourage Caitlyn's caregivers, Bob and I tucked the bills into four of my favorite chapters of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs" and signed the book, "From one caregiver to another." We deeply hope God's love and care come shining through! (Photo is of Jeff at one year.)

Jeff as the "Cowardly Lion"

With March coming in "Like A Roaring Lion" here in upstate NY, I think of Jeff's imitation of the Cowardly Lion in "Wizard of Oz." Jeff had a mighty roar!!~~~Here is an excerpt from "Journey With Jeff" called "Jeff's Roar." The quote, "Be strong and courageous" is from Joshua 1:7a -- "Sheila Matthews, on the staff at Jeff's residence says, 'One of the fondest memories I have of Jeff is the morning wake-up routine. I thought and thought about the difficulty of waking Jeff up because he was such a sound sleeper. One day I remembered how much he liked The Wizard of Oz, especially the Cowardly Lion. So I talked to him about the Cowardly Lion as I was calling his name to wake him. Once Jeff realized what I was saying, he would awake with a roar, then go into the different scenes from the movie. I'd try to do scenes along with him but he said, 'No Sheila, not that way. I do it.' No one could do the Cowardly Lion like Jeff, which is why he was cast in the role for the LAI play.' Sheila continues, 'The other memory I have of Jeff is how he tried to scare staff members. Jeff was not very steady on his feet so you could hear him coming. But almost everyday Jeff would try to scare some staff person and I do believe a few times he actually got some of us. Doing direct care with Jeff and many of the other South Avenue gang were some of the greatest times I had in this agency. When Jeff said he loved you, you knew it came from the heart. He is missed but not forgotten. The closing prayer: Lord God, we give special thanks for the staff on night shift, responsible for getting the residents on their way in the AM. It's so easy to forget about those we never met. Bless them good, Lord!! Amen." (The photo is from the LAI production of Wizard of Oz with Jeff as the Cowardly Lion, and Claudia as Dorothy.)

"Journey With Jeff" Goes Home with Caregivers

Three women, all caregivers, bought a copy of "Journey With Jeff" at the Women's Prayer Retreat this past weekend. Amy is a psychologist in Ohio, and plans to share Jeff's story with another friend who also came from Ohio. Martha and Karen are caregivers in special education with children with special needs. They shared the challenge of helping a child become all he or she is capable of being. Mary, a single mother, returning to the retreat this year, told me the book she bought last February had helped her in the caregiving of her own self as well as of her children. Pastor Mary Anne and I lead the retreat, choosing "The Shack" for discussion with our 28 women. Many of us have been through a "Great Sadness," and learned how much a relationship with God gives us inspiration, encouragement and hope. We caregivers are not alone!!

Merry Christmas to My Readers!!

One day I visited our Brockport Library to check out the number of times their copy of "Journey With Jeff" had been borrowed, and found 8 due dates listed! Yay!!!! Maybe someday soon I shall be able to check out the six other town libraries where "Journey" lives?~~~The day before Christmas I received an e-mail from a mother who wrote: " I recently borrowed your book from the library, and I have started reading it. I am finding it fascinating and very uplifting, and I can relate because years ago we found out our daughter was profoundly deaf. As I read your book, I keep thinking of other people I would like to recommend it to. I tried to purchase it today at Borders but they said it was out of print. Is there a way to still order it?" Immediately, and with great joy I e-mailed her back: "If you live in Brockport you can buy "Journey With Jeff" at Liftbridge Book Store, or Salvation Station. If you live in Greece, you can order it from Barnes & Noble. You can also order it from Amazon.com, or, I can send you a copy. The cost in the stores, and at Amazon.com is $17.95. Covering shipping and handling, I can send an autographed copy to you for $20.00~~Whatever's best for you and for the other people to whom you'd like to recommend it." And of course, I invited her to take a look at my blog at this website. (Photo is the author with the CD of "Journey With Jeff,"which entered the Brockport Library about a year before the book edition.)

Grant Me the Serenity to Accept the Things I Cannot Change

Today I was surprised by the turn of a conversation with a colleague at our Lifetime Assistance Inc. December meeting. Discussing writing and my present marketing of "Journey With Jeff" I mentioned I'm thinking about a second book which would include the responses of people who had read "Journey," especially the mother who wrote that she could finally work through the last of her "mourning" over the loss of the child she'd hoped for, and was now ready to accept her son just as he is. ~~~"That's why I appreciate your book about Jeff," my friend said today. "My husband has brain injuries from an auto-motorcycle accident six years ago, and I also have had to get to the point of saying, 'Yes, this is who he is now - not the same man that I married." She shared how she and her family have dealt with this 'mourning,' this dose of reality, this grounding of expectations for who he is now. Not only is she a caregiver with LAI, but one at home as well. I offer her my deep respect! (Photo-Garden Step imprinted with Serenity Prayer.)