A New Twinkle in My Eye

"I didn't know you went through all this. You always seemed upbeat and happy." These are words I've heard fairly often from long-time friends and wide-spread family after they have read "Journey With Jeff." There was alot of laughter in our house, and in Jeff's programs and residences, even in the hospital where he spent 22 months. God gave me a calling, and brought others along the way to help. I found that laughter progresses healing, and sustains hope. Especially, "Holy Laughter" which laughs in the face of peculiar circumstances.~~~ There's a chapter in my book called "A New Twinkle," and the quote at the beginning is a poem by Margaret Bailey: "God, give me sympathy and sense, And help me keep my courage high; God, give me calm and confidence, And, please, a twinkle in my eye." Joy prepares us for the long haul when circumstances can lead to tears or laughter -- one never knows!! (Photo of Jeff and friend at Camp Joy)

Don't Quit, Keep Playing

"This is a story about Ignace Paderewski, Poland's famous concert pianist. A mother who had ambitions for her own young son's piano playing bought tickets for a Paderewski concert. When the night of the concert arrived, the mother and her son found their seats near the front of the auditorium and kept their eye on the great, majestic Steinway on the stage. Soon the mother was talking to a friend in the seat next to hers and her son slipped away unnoticed.~~~When eight o'clock arrived the spotlights dimmed. The audience became very quiet and only then did they notice the young boy up on the piano bench, innocently fingering "Twinkle, Twinkle Little Star."~~~Needless to say, his mother gasped, but before she could jump from her seat to retrieve her son, the master pianist himself appeared on stage and quickly moved to the keyboard. "Don't quit, keep playing," he whispered to the boy.~~~Leaning over, Paderewski reached down with his left hand and began filling in the base part. Then his right arm reached around the other side, encircling the child, to add a running treble part. Together, the old master and the little boy held the crowd spellbound.~~~In the same way we know the master surrounds our lives and whispers in our ear, time and again, "Don't quit, Keep playing." (Excerpt from "Journey With Jeff." Photo ~ Jeff at four years old, entertaining a friend.)

Age-Appropriate for an Eighteenth Birthday

"Age-appropriate. What makes something age-appropriate, or especially suitable or fitting? We had been hearing this term since Jeff began his weekends at the Culver Road Home. In the spring of 1979 Jeff was eighteen years old, and we were looking for age-appropriate gifts for a boy who loved music and animals, books and inner tubes.~~We had discovered The Electric Light Orchestra, a teenage rock group that both Jeff and we could enjoy. That was a bit of age-appropriate serendipity.~~Jennifer's idea was to give Jeff a fish tank for the fish he had won at a carnival two weeks earlier. She brought two more fish and gave them both a name. Jeff's face litup with joy and delight when she gave it all to him. We considered that a thoughtful, loving, age-appropriate and downright ingenious gift!~~A friend of ours, a counselor at a junior high school where I tutored invited Jeff to a birthday party at his house. It was on Sunday, so we all enjoyed a woship service at his church beforehand. We took lots of instant photos of guests and of Jeff jumping on his inner tube in Bill's back yard. Jeff smiled non-stop through this fitting birthday celebration~~When we shopped for a suit for his birthday, we found a brushed denim suit jacket, vest and pants that really made him look sharp! With a yellow "foxy shirt," a handsome blue "foxy sweater," plus two more shirts and pants from Penney's, these clothes seemed especially suitable for a handsome young man.~~(Excerpt from "Journey With Jeff")~~(Photo of Jen's hand-made Christmas gift.)

A Busy Month of June!!

 
I try to write a couple blogs a week, but June disappeared, undermining this accomplishment! Jennifer, Jim, Theo and Roxy drove with us the middle of the month to Zelionople, PA, to visit Rob's sister Lois, and her husband, Dutch. We hadn't seen them since they moved into the Passavant Retirement Community more than a year ago. Jim drove our van most of the way, and I was able to enjoy Theo and Roxy. I would have loved to have read to them, but they wanted math problems!! Theo was working a problem multiplying 50 X 50, then the answer by 49, then that answer by 48, all the way down to 2 and 1. I can't remember what the process is called, and numbers have always been a challenge for me, but I can multiply, and multiply I did. (Sunday night Theo asked me to play a new card game, "because you like numbers." Have I thoroughly fooled him ?!?) While we were waiting for the rest of the family to arrive in Zelionople from other PA towns, and from OH and KY, Dutch took us through the Administration building which includes a Main Street, a gift shop, a craft place, and a library. The Activities chairperson was there, who is also a social worker. She said she'd like to read "Journey With Jeff," and maybe even have me come back to present a program. (That would be a 5 hour drive!) So, I left a book for the Passavant Library with Dutch. Wouldn't it be great to get a call from her?! ~~~ Later that week I totally relaxed at a friend's appartment in Charlotte, NC. for seven days. She introduced me to the young man I wrote about in my March 29th blog - "Dignity of Risk," - who is doing really well with his new job. He even gave me a hug!!! ~~~ The last day of June, I had an excision of some sensitive red skin above my right eyebrow, for a biopsy. My surgeon was gentle and efficient. (What hurt the most was the novocaine!) I found myself saying, "Thank you!" as he told me everything was going well, and it reminded me of the times Jeff went through surgeries, like mine and kept thanking the doctor. As Rob and I make choices (whether of food or things to do) we often end up saying, "Both, too!" as Jeff did when he had to make decisions. He may be gone, but there are continual reminders of his presence. Thank You, Gracious Lord!

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!