Jeff Goes to the Upstate NY Synod Convention

 
The best thing about Lutheran conventions is seeing long-time friends and meeting new ones!! Bob and I just enjoyed this three-day Event at the Rochester Convention Center. Our pastor and his wife attended with their 11 1/2 month-old son, and other families also brought their little ones. Four of my long-time friends purchased "Journey With Jeff" from our convention table at the Mission Faire. One was my close friend, Nan ("Through It Together" - pp.77-78, and "Little Shoulders" -p.101) who I still meet at many Events of many kinds. Peggy and I were on the Lutheran Women's Board in the 80's, and I remember writing a poem about an awesome experience I had had, which brought her to tears! Surprise!!! An "Aha" moment for me -- I was able to move people with my words! It was good to be able to tell her how much her reaction had meant to me. My buddy, Anne and I spent many years volunteering at "Seeds and Camp Joy" (pp.265-266,) and we lamented the lack of energy to continue with those wonderful events. Pastor Fred married the daughter of one of our pastors about 20 years ago. His comment about Jeff's life being "quite a legacy" invited my response of how I'd written this book. "I often prayed with my hand in the air, asking God to 'Make me Your keyboard!' I told him. "You've been God's keyboard for a long time," he said. So, Dear Readers, do you see why I relish these wonderful gatherings?!?!?!

Another LAI Mother

 
Waiting for an Informed Consent meeting for LAI to begin, one of the staff who was there to present a change in meds for a resident said to me, "Thank you for your book. I am a mother of a child with Down Syndrome, too, and I lived those scenes right along with you." (Another bulls-eye to right where it was needed!! YES!) Afterward, I asked about her 'babe' -- who actually is 21 years old -- living with her mom and dad, and beginning to talk about wanting to live in a residence. For a long time this daughter said, "I'll ALWAYS live with my mom and dad!" Now, she's ready to talk of transitioning. I pray that "Movin' On," the story in "Journey With Jeff," about the difficulty for parent AND child of leaving home, is a huge help for everyone. (This photo of Jeff with his friends at his residence probably was taken even before the child in this blog was born.)

Change of Pace

 
Activities at schools are coming to an end. This Sunday our Pastor added a special "Blessing of the Brains" for students and teachers in our congregation involved with year-end testing. In a couple of weeks Theo and Roxy's classes will invite us to their exhibitions of what they've learned this year about Rochester explorers and settlers. It seems just a little while ago that "The Wizard of Oz" was produced by a special group Jeff enjoyed. He was the cowardly lion -- who roared! The young woman who played Dorothy now lives in the Lifetime Assistance Residence over the fence right behind our Brockport home. ~~~ This June I seem to be in a Waiting Mode, after sending a copy of "Journey With Jeff" to the editor of the Down Syndrome News at the National Down Syndrome Congress. Their annual convention is in July, and I've also applied for an ad in their Souvenir Journal Convention Program booklet. With three hotels in Boston filling up with conventioneers, I have great hopes that "Journey With Jeff" will catch a few eyes!!! In August, Barnes & Noble in the Greece Towne Mall will have a Local Author Event, where we will be invited to read excerpts from our books. Another couple of organizations are studying a copy of "Journey," and I am praying that the book might become an important resource for them. Meanwhile, enjoy YOUR summery change of pace!

Cruising the Erie Canal

 
Today I joined several other Seniors cruising the Erie Canal on the restored Mississippi River Boat, the Rose Lummis. About 25 of us enjoyed lunch on our hour trip, listening while our local historian told us about the people and businesses who had settled this area. I thought it was all too soon when we turned around to go back! I would have liked to have gone all the way to Rochester, but we didn't even make it to Spencerport! I want to go again -- further!! ~~~There were several familiar faces on the trip, but one sweet person I hadn't seen for a long time stopped me for a hug on my way to the upper deck. "I just wanted to tell you," she said, "that I thought the newspaper story about you a couple of months ago was extra special. My niece has four children, and the first and last child each have Down syndrome." My heart goes out doubly to people caring for more than one child with special needs. What a blessing to have a supportive family! It seems she hasn't read "Journey With Jeff," so I told her she could find a copy at the Senior Center. "Nice to know an author!" she beamed.

Understanding folks

 
47 years ago today Jeff was born -- on a Pentecost morning. I thought of that in my morning Quiet Time, then our beloved brother- and sister-in-law wrote us an e-mail this morning: "Thinking of you today. It's hard to believe Jeff was born that long ago. Your book has made his years seem so recent." Jack and Kathryn were Jeff's godparents, and they continue to cheer for him. Their thoughts made our day -- such understanding folk!! ~~~Later, when I arrived for my monthly maintenance trip to my chiropracter today a young man with Down syndrome came back into the outer office with his mom. As she took care of the payment, I slipped up beside her and showed her a photo of our family, saying, "from one mother to another." She hugged me and burst into tears. She said that her son will need to wear a "halo" to straighten out the way his neck permanently leans to the right. Two doctors have insisted this is the ONLY way they know how to correct it. I said, hopefully, "Maybe you need a third opinion," and the receptionist added, "You have to keep fighting." Trying not to cry, his mother said, "I know you understand." I told her about "Journey With Jeff," and gave her one from my stash in the car, praying that she'll understand that she is not alone. Please, Lord, may she find the time and energy to read "Journey With Jeff." Thank You.

A Visit to the LANDING

 
This afternoon I spent an hour at the LANDING, a Senior Assisted Living Home. Melody Finn invited me to speak after seeing the February article in our Democrat and Chronicle. About 20 older citizens gathered around the fireplace (today was a cold May day,) to hear me share stories from "Journey With Jeff." I have a great respect for these Seniors, who have lived many, many years. When Jennifer was a pre-schooler she went with us Lutheran women every Wednesday morning to explore the crafts and activities at the Chautauqua County Home. The people were delighted to have a small, wide-eyed child around, and Jennifer still enjoys crafts. Today at the LANDING one lady named Peggy and I compared notes about children with Down syndrome, because her grand-daughter, now 31 years old, visits often and fills her life with much love and hugs. We talked about being caregivers to other members of our families, and another resident shared her scary memories of a husband who wandered at night. Sometimes caregiving is terribly difficult. I ended my presentation with my favorite story, "Big Bird's Car," about the miracle of the car Jeff washed inside and out, drying out in warm June breezes, and running again. Someone asked Lance if the car was ever the same, and Lance said it ran for three years afterward just fine!! I tried to find as many stories as possible to draw laughter from the group, and "Big Bird's Car" won.

Two Ways to Read "Journey With Jeff"

 
This is a photo of me reading to my grandchild's class -- something I thoroughly enjoy!! There are two kinds of books I love to read -- a story that I can't put down, (such as Sue Monk Kidd's "The Secret Life of Bees,")and a book of devotions (I have 5 beside my Quiet Time chair, including the annual Daily Guideposts.) ~~~ I have also discovered there are two kinds of readers of "Journey With Jeff" -- those who read it in one sitting, and those who use it one day at a time, pondering the beginning quote, the illustration about Jeff, and my prayer at the end. One of my friends at church bought a copy of "Journey" to take with her to read on a long flight, but said she picked it up one day and couldn't put it down. Guess I'll have to write another one for her--very quickly!! Our young, energetic, well-read, well-traveled and thoroughly Lutheran Pastor said he sees Jeff's story in devotional form, meant to be read one by one by one. "So I won't be done reading it for quite a long time," he told me. I appreciate both kinds of readers!! I also appreciate those who review "Journey" on Amazon.com, because people deciding whether or not to purchase a book usually read it's reviews first. I'm eager for all caregivers to know they are not alone!