Caregivers at Convention

Caregivers are found everywhere! The fellow who typed my message on powerpoint about "Journey With Jeff" for a repetition cycle throughout our intermissions during our Synod Lutheran Conventionthis week said his wife and daughter are involved with programs for people with special needs. His daughter will be helping out at Camp Joy this summer. They also are caring for his mother -- in a "Sandwich Generation" situation. I autographed his copy of "Journey of Jeff" to his whole family of caregivers.~~~During a breakfast conversation with Joan, a new friend, she asked me about my children. I told her how Jeff lived with Down Syndrome and Jen was a National Honor Society member, a huge difference on the spectrum. In order to help Jeff develop and become all he was capable of being, I earned my masters in special education. Joan's mother is involved with people with special needs, too, and while she was growing up there was a young woman in their family who had Down Syndrome. Her mother came down with Multiple Sclorosis, and the young woman cared for her until she died. Then she cared for her aging father until he died. What an interesting switch in the role of caregiving! God is full of surprises!

Encouraged By Other Caregivers

It's like a Sisterhood; caregivers being encouraged by other caregivers! Two years ago I wrote Emily Perl Kingsley asking her permission to use "Welcome To Holland" in "Journey With Jeff'; Inspiration for Caregivers of People with Special Needs." She wrote, pleased to give her permission and asking me questions about Jeff. She told me her son Jason, who also lives with Down Syndrome, has written a book called, "Count Us In: Growing Up with Down Syndrome." I have read this encouraging book about two high-functioning young men. They remind me of Corky in the "Life Goes On" TV series in the 1990's. Wish that well-written program was still airing! ~~~ Just finished a book my favorite son-in-law found for me, "The Year My Son and I Were Born," by Kathryn Lynard Soper. I identified with many of her experiences, such as our babies' noisy breathing -- it led us to an Ear/Nose/Throat Specialist who asked if we'd ever thought Jeff could be retarded! Our world blew apart! Soper's comment, "He's slow, slow, slow. So what?!?" compared with our great pediatician's "So what!? Record everything Jeff CAN do in the back of his Photo Album." This became the beginning of my book about Jeff. When I see a child with Down Syndrome now, I think of the woman in Soper's book whose baby died at 5 years of age. Whenever she saw another child with Down Syndrome she cried, "His face, his face. It's been so long." Tears came when I read this ~~~ I wrote Kathryn Soper of my enjoyment of her memoir. She wrote back, "I appreciate you taking the time to contact me -- like you, my greatest reward is hearing from readers and fellow travelers." From one caregiver to another!

Jeff's "I love you!"

Joy! Pure joy! That is what I sensed in Michelle as she told me about her youngest child. After she had miscarried four babies, and was pregnant once more, tests showed that there was a possibility of the baby having Down Syndrome. "Do you want to abort?" the doctor asked her. "No! No way!" she said, "I've waited a long time for this baby!" She carried her son full term, and when he was born, he was fine. He is four years old today, and being a very "normal" child. "What if I had aborted?" she reflected. "This beautiful son of mine would never have been born!"~~~I read that 90% of pregnancies which predict a child with Down Syndrome are aborted! 90%! Many families who want to adopt a child with special needs find there are not many available. Please spread the word that if a mother-to-be cannot handle the possibility of a baby with difficulties, she should deliver this precious child, and offer it for adoption! So many people will be blessed!

Special Needs Children Responding to Special Needs Children

Gathering up our things after my presentation in the Passavant Retirement Community auditorium, an older man with special needs came through the door.
"What are you doing?" he asked. My brother-in-law, Dutch gave him a flyer from one of the seats and explained that we had just heard about this young man called Jeff. Dutch showed him the six posters of Jeff's life hanging at the front of the room, and the man seemed excited to match the photo in his hand with the ones on the posters. "I'm John," he said, and pointed enthusiastically to Jeff then to himself, back and forth, back and forth, until I understood that he wanted me to introduce them. So I said, "John, this is Jeff. Jeff, this is John." He grinned a wide, "Hello!" Then he thanked me. Thus, Jeff has made another friend!

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!

"Journey With Jeff" IS Out There

Oh, my ears and whiskers! Have you ever entered your own name for a Google search?!? When I did that I found 42 entries of my name as author of "Journey With Jeff." This included a website for the United Kingdom~~~ Amazon.co.uk! Jeff is in England! Some websites were in another language, German, I think. Do you suppose Jeff's over there?!?" Journey With Jeff" is listed in a Pennsylvania County Down Syndrome Interest Groups website, and on the National Accessability website. I was especially touched by the book being mentioned on Dads4SpecialKids.com ~~ that was a serendipitous find! Every couple of months I receive royalties from BookSurge/Amazon.com for books, and I have no idea who has ordered "Journey With Jeff." However, now I am aware of the wide width of possibilities!!

Support From Family and Beyond

Never would almost 500 copies of "Journey With Jeff" be broadcast from sea to sea without the help and support of my husband Bob, Jeff's sister Jennifer, and her husband Jim. Their encouragement, and technical and financial expertise have been inestimable! Before the book was published, Jim's mother, Jeanne, helped make a collage of Jeff's photos and a Table of Contents to fit into the 5CD package of "Journey With Jeff," which I read from the original script. There are approximately 100 copies of the CD 'Out There!' ~~~ This week Bob and I will travel to Zelienople, PA, to visit his sister and her husband who live in a Lutheran Retirement Community. I'll take CDs and copies of the book to accompany my presentation for the Women of the ELCA. Perhaps I'll make the last few sales for the total of 500 copies of the book!? Hope springs eternal!