Family Support

 
An excerpt from Journey With Jeff: Inspiration for Caregivers of People With special Needs ~~~ Jonas Salk said, "Good parents give their children roots and wings. Roots to know where home is, wings to fly away and exercise what's been taught them." Grandma Reisch asked twenty-two-year old Jeff at her supper table, "How do you like it where you live, Jeff? Do they give you all you want to eat? He can have all he wants to drink here. Give him another glass of milk!" "If he has too much to drink he may wet the bed," I cautioned. "If he gains too much weight, the dietician puts him on a diet." Jeff responded at once, "No diet, Mom. Don't want!" Grandma asked, "Do you do the dishes at your house, Jeff?" I added details to his affirmative answer -- he did the dishes and his own laundry. Jeff vacuumed and helped get the meals. "He really helps with the meals?" Grandma asked, and I explained that this was one of the goals in his residence program last year -- to get peas out of the freezer into a pot, cook them, and serve them for supper. Grandpa Reisch thrust his fist up into the air and down again in a victory gesture. "I don't care what anybody says! He's all right!" My prayer -- Abba Father, thank you for the work Grandpa Reisch has been doing with the Association of Retarded Citizens for many years since Jeff's birth! Thanks for this grandparent's support! Amen. (Photo is of Jeff with his family, including grandparents.)

Wegmans Stores Welcome Jeff

 
Good news for Caregivers! Journey With Jeff; Inspiration for Caregivers of People With Special Needs is in 5 -- FIVE -- of the Rochester area WEGMAN stores! Been waiting for three weeks while the store installed it in its computers, and sent it to the Brockport, Irondequoit, Latta Road, Pittsford, and Penfield stores. I saw it in the Brockport display today! If I'd have had the agility, I would have clicked my heels in the air! Had a hard time not squealing with excitement the way they do on "Ellen" and "Oprah"! strong>~~~ It seems to me that even more people will see it in a display in a supermarket than in a bookstore. And, more of the people with lower incomes can buy it at a discount. I'm still praying that "Journey With Jeff" will get to all the people who need it. So far, I've sold or gifted 525 copies, and still feel there's more to go, to give caregivers encouragement with their challenges. (And, I hear of more and more people passing it on!) My friend, Kim, is my best PR person -- she was the one who made this connection! Thanks, Kim! We'll keep on keepin' on!!!

Even Churches Have Special Needs

 
Our Bishop, Marie Jerge has blessed me with stories of the ways she has used Journey With Jeff in her ministry within the whole, church-wide ELCA. This weekend she shared this story: A church was closing its doors forever, and Bishop Marie wanted to help them in their grief, and encourage them to continue trusting God. She chose a letter I wrote to God near the end of Jeff's life to illustrate: "O God! My heart is broken with the suffering of Jeff. I ask you to have much mercy. He's ready to go and see Jesus, to take Jesus' hand...he's so weak. After I asked yesterday that no tube be put down his stomach for food, I thought of the enormity of that decision, but medication for seizures didn't stop the one he went through for an hour and a half the night before! O Lord, have mercy! Signed, Your Sybil~~~~ My Sybil, my dear, dear Sybil. My Bob and my Jennifer and several of Jeff's friends whose hearts he has captured are hurting, too. I hear your prayers. My Son died, too. My parent's heart hears yours. Trust me, My child, please. Trust into My care Jeff Reisch. I know how hard it is to wait for me to take him Home with Me. The hugs you're getting and giving are My hugs, My presence. Wait for the Lord; be strong, and let your heart take courage; yea, wait for the Lord! I love you. I hear you! Trust Me. I will not leave you comfortless. You saw a huge rainbow through the hospital window, a sure sign of My presence with you through it all! Praise me, and remember...lean hard! Signed, Immanuel -- God with us!" Bishop Marie was a caregiver to people at a church struggling with special needs, and as she quotes "Journey With Jeff" she continues to bless me!

Inspiration For A Supervisor of Special Education

Lee, a young teacher of students with special needs, loaned, "Journey With Jeff; Inspiration for Caregivers of People With Special Needs," to the Supervisor of Special Education at school. Lee says, "The woman praised your book as the most caring she has read. She has made it recommended reading." This school district has had Down syndrome children in their classes for the past six years.~~~ This is great, affirming news! A welcome recommendation from a professional in school administration. Thank you, Lee, for passing on her compliment and recommendation! (Photo of Jeff in his school in Dunkirk, NY)

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!!!

Caring and Me

 
Presenting a Workshop to Lutheran Women about caregiving, Journey With Jeff: Inspiration for Caregivers of People With Special Needs, naturally came into play. The person writing the review of my Workshop reported: "Sybil explained how her experience as a caregiver of a developmentally disabled son has shown her the importance of support for caregivers. She also shared with us several stories from "Chicken Soup for the Caregiver's Soul." Points she made that can help the caregiver included: 1. Laughter can change things - look for the silver lining; 2. Respect the dignity of the person - treat an adult as an adult, not a child; 3. Comfort for caregivers can be found in 2 Corinthians l:3 and 4; 4. Ask for help - others may want to help, but don't know what you need; 5. Find a friend who is willing to listen to you, or join a support group where you can receive encouragemnet from others; 6. Take care of yourself - you are very important to the person you care for. Since many people attending this workshop were, or had been caregivers, there was a lot of discussion and sharing of caregiving experiences based on the above points. Sybil suggested several resources caregivers might find helpful. They included "Chicken Soup for the Caregiver's Soul," and "Chicken Soup for Children with Special Needs." These books can be found in most bookstores. Sybil's book, "Journey With Jeff," is available on Amazon.com, or, along with a 5CD copy, can be ordered from her e-mail address, rsreisch@frontiernet.net." (Photo is of Lutheran Women convention table.)

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.)