Chemotherapy and "Journey With Jeff"

Donna writes from Kentucky: "A short while ago, I received a phone call from the man who is the chaplain at the hospital. Remember, I told you I had loaned him your book? He was amazed at the honesty and emotion of the book. Not just the stories in there, but that you were able to convey them with such a fine balance of professionalism, personal expression, humility and intestinal fortitude. Seasoned authors often are unable to pull that off. Your faith shone through the pages. The chaplain's name is Kerry, and he needs prayer. He has been diagnosed with and is being treated for colon cancer. That's when he finally was able to read your book --during chemotherapy! This precious child of God enjoys the interaction involved in what he was chosen to do. He still "tends his sheep" about five days a week, and whenever he can be there when he's needed. Kerry requires one day a week for recovery from the chemo sessions. He knows that whatever happens will be part of God's plan and to His glory. He gratefully and humbly accepts the love shown by any and all prayers offered on his behalf, knowing that prayer changes things. If you can get this kind man on a prayer chain, please do so. God bless you and yours."

Camp Joy Memories

 
Jeff loved music, inner tubes and Camp Joy ~~ not necessarily in that order! This is a photo of Jeff listening to Joan VandeWall, Director of Camp Joy, ready to roll his tube next into the swimming pool. The week-long camp was organized in the 1980's, and Jeff and I went every year. The summer of 1988 was his last summer. Jeff's spirit continued to be high even though he wasn't well, and this excerpt from "Journey With Jeff" includes a quote from Helen Keller (1880-1968): "Although the world is very full of suffering, it is also full of the overcoming of it."~~~"Yes, Joan! Camp Joy! Tube in Camp Joy pool!" Jeff said emphatically at a Seeds gathering when Joan Van de Wall asked him again, almost in disbelief, if he intended to be there this year. Everyone at Seeds knew that Jeff had been in the hospital repeatedly these last few months, so he was included often in their prayers. This is the way Joan remembers it: "Jeff loved Camp Joy! He had been in and out of the hospital time and again, and he doctors had begun to suspect leukemia, but he still was going to camp! And he did! Everyone was thrilled to have Jeff there that summer and great care was given to him to make him comfortable. Then, on the night of our dance, I was worried that the excitement and loud music might cause a seizure. So I asked him, 'Jeff, how are you doing?' He quickly said, with that smile on his face, 'I'm fine, Joan, how are you doing?' Again, he turned a trying situation into light." The closing prayer says, "Gracious Lord, Jeff was so full of life, even when he hurt! Thank You for all the people who loved him, and whom he loved. Thank You for his joie de vivre! Amen!"

Praying With Lior - A Documentary by Ilana Trachtman

This is a photo of Jeff and Jennifer with their rocking, singing grandmother (my mom!) It illustrates the feeling of family that was obvious in the film, "Praying With Lior." I've been waiting to see this documentary since someone recommended it to me in February. It tells the story of Lior, a Jewish boy who is preparing for his Bar Mitzvah. Lior's mother was a rabbi, and when he was little, she rocked, and sang the prayers in the Psalms to him with much delight and enthusiasm. He grew up loving the beat of the music, and began making the prayers lively for the worshiping community. ~~~ An Excerpt from "Journey With Jeff"~~ "And all your children shall be taught of the Lord; and great shall be the peace of your children." Isaiah 54:13 (Jewish Bible.) "Meanwhile, Jeff continually surprised us with his understanding of God's love and presence in our lives. One evening we were singing around the table after supper and were astounded when he seemed to know all the words of the first verse of 'Beautiful Savior.' How we praised him and cheered him on!! An Easter service on TV caught Jeff's ear. 'Church!' he exclaimed. There was a wide grin on his face when he recognized the 'Hallelujah Chorus.' At our own Sunday worship, he often sat with a friend and his family, whose mom said Jeff was a good, quiet exmple for her own children. Wow! Thank You, Lord!! Jeff learned the motions to 'Jesus Loves Me' at Sunday School and combined them with his record at home. He clapped at the word yes in 'Jesus Loves Me' to convince me to start singing it with him from the beginning. He also enjoyed the music and motions for 'Climb, Climb Up Sunshine Mountain,' and 'Two Little Eyes.' We were glad to see this really meant something when Jeff was sick with a cold and couldn't breathe. He'd implore me to, 'Talk to God, Mom!' The Amen at the end of our prayer was emphasized by his quiet, 'Yeah!'" The page's closing prayer was, "All praise to You, O God, for the faith You have given Jeff! Amen!" ~~~ Imagine...Jeff and Lior being good friends, and making happy Jewish music together!

Holiday Band Music

 
If Jeff had been here to enjoy the Pittsford band playing at the Genesee Country Village & Museum Independence Day Celebration, he would have been directing it from his seat! I discovered a young woman sitting under a tree in her wheelchair, excitedly directing this band with all her might. Memories!! Joyful Memories!!Being able to let every reader know that God really blesses children with special needs to the people around them, AND, sends people to help, keeps Jeff very much on my mind. Twenty years he has been gone from us, and with the Lord, but in that time I've gathered Journaling Notes, and a number of photos into "Journey With Jeff" so that other caregivers may know our GodStory; so that they may know they are not alone. Read Jeff's story, and see if you agree!

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!