Extra Rewards!

The responses I receive from long-time friends who have read "Journey With Jeff" are extra special to me! These words come from an Oneonta SUNY friend:"I can't begin to relate to what it is like to have a special needs child because I have never been down that road. Even though we have kept in touch over the yers, I never had a clue about what a rough road you had. I remember visiting you in Port Jervis when Jeff was a tiny baby. You explained to me about the 'crow' and that it might possibly be CF. Even that didn't mean very much because I'd never heard of it, and didn't realize what a serious illness that is. He just looked like an adorable little guy to me. I have such great admiration for the way you and Bob raised Jeff and helped to make him such a strong brave young man, secure in his faith and your love for him. After I married, I met my landlady's sister who was a special ed. teacher. During our conversation I discovered that she had had Jeff as a student. She said she had never met a more loving child. I surely hope your book reaches those who need it most. You didn't surgercoat anything. You told it like it was. You shared your most intimate feelings. You show that your are only human and that it's normal to get angry and frustrated with your special child. And how it is so important to let them do things for themselves when it would be so much easier to do it for them. And to give them every opportunity to become all they are capable of becoming. And you also show all the good times that made the struggle worth it." Thanks, Tut! You made my day!

SPENCERPORT-HILTON POST Story

Discovered a web site for this newspaper where one can read the article Mike Costanza wrote about "Journey With Jeff." Go to www.MPNnow.com and click on HOME. Write the title of the article in the Google Search box ~ "Mother shares her journey of the heart" ~ and choose the first option. Scroll down to this title. The photos of Jeff and his dad in front of the Hamlin fire truck, and of we three, which accompany the article, are not included in the web copy of the story. They ARE in the center of "Journey..." however, and you can check them out there. The Democrat and Chronicle has not yet published Mark Hare's story, but I'm checking out his space in every Tuesday, Thursday and Saturday issue. This is an exciting place to be!!

Memories Jogged!

Michael Constanza interviewed me re: "Journey With Jeff" for the Spencerport-Hilton Post, which I'm hoping will appear in this Thursday's issue. When he called back and asked what it was like to work for the Greece School District I told him it was a great experience. The teachers and counselors were supportive, and I often worked with the students in their home, or the library, or in the hospital. The common ground for me and the parents was that I also had a child with special needs. Mr. Constanza started the memories flowing, and I pulled the file of students I'd kept, checking details and dates. There was the seventh grader who was a computer whiz back in 1985 who wanted to work for IBM. He came to tell me about a dozen years ago that indeed he was a CEO at IBM. One of my students taught me what a switchblade looked like, but quickly put it away when I told him the librarian might take it away if she saw it. There was a bar-mitzvah I was invited to attend. Today a former student recognized me in the mall even though I'd retired in 2000! She thanked me for encouraging her at Hillside. Now she's going to MCC, along with being a wife and mother. It has been a rewarding journey!

"Interruptions are your ministry" Marva Dawn

Two interruptions threaten my present schedule! One is a request to move my mother's piano from my home on Sunday morning into an apartment for a great niece and nephew to use, and one is for an 8AM ride to Unity Hospital for a friend to take a stress test. The first response is "NO!" -- We're in church Sunday mornings and I want to say goodbye to this piece of my history, my mother's piano, sending it with a blessing as her great grandchildren pursue the joy of music. The second is "YES!, Monday AM is open and my friend has few people to ask. When I was writing "Journey With Jeff" there were many interruptions, and the wisdom in Marva Dawn's quote, "Interruptions are your ministry," kept me sane in the midst of meetings, appointments and family time. It has brought things into focus for me -- what's important, and being aware of God's call to me in the midst of getting "JWJ" where it needs to be. It brings me peace.

Interview With Mark Hare

The Press Release for "Journey With Jeff" which BookSurge of Amazon.com sent to newspapers in our area produced an interview with a reporter whom I admire a great deal! Mark Hare works for the Democrat and Chronicle in Rochester, NY, and writes stories about people who struggle with challenges and become stronger because of them. Mr. Hare sat in my living room and asked me questions about what the world was like for children with special needs in 1961 when Jeff was born, how we were able to help him grow, what schooling he had, how he was ready at 18 to leave home for a residence, and what life was like for him at his Lifetime Assistance home and Day Habilitation unit. Mr. Hare and I found mutual ground in describing how hard it was to leave our sons at a new home/college, especially when they were eager to say, "See you later!" My favorite story in "Journey With Jeff" is called, "Big Bird's Car" (read it on the www.luther95.com/UNYSWE-ANY/ website, by clicking on Resources and scrolling down to "Journey With Jeff") which illustrates the grace which surrounded Jeff. I'm eagerly looking forward to seeing this article in a Tuesday Democrat and Chronicle in a week or three!

An Excerpt From "Journey With Jeff"

This excerpt is called, "Sitting On My Hands?" and the quote is from Anonymous: "Real Friends are those who, when you feel you've made a fool of yourself, don't feel you've done a permanent job." ~~~ My friend Carol's personality was the opposite of mine, even though we were both teachers and we both had babies with special needs. Unhampered by any worry of what people might think of her, she asked all the questions needed to discover what she wanted to know and said exactly what she believed ought to be said. Other people might have been afraid to offend, but she felt free to speak out. I found her advice to be sound - even though I might not like it - such as the time when Jeff was 20 months old and having trouble coordinating his spoon with his mouth. Since his growth had been so slow, I was feeding him to ensure all the food necessary for that growth went inside him rather than down the front of his bib. When Carol discovered I wasn't letting Jeff work at feeding himself, she planted her hands on her hips, tucked in her chin, and said in her best classroom voice, "Now just a minute, Mama! Aren't you actually defeating your purpose with this child? You want him to grow and do things for himself, yet you're feeding him as if he were still an infant. For heaven's sake, he'll be two years old this spring!" I opened my mouth in protest, but she quickly added, "You're so finicky! Give Jeff a spoon of his own while you continue to make sure he gets most of it inside, but let Jeff keep trying to feed himself!" I had to admit I hated cleaning up the mess that covered the table, high chair, and floor whenever Jeff insisted upon wielding his own spoon. However, I began sitting on my hands and letting him do it. It took day-to-day sitting, but by the following April, I could write in his Progress Report, "There was much more mess last spring when Jeff ate his meals!" And my prayer, Mother God, You understand! Yet, You encourage us to grow. Thank You for sending friends to help in that process! Amen.

Jeff's story becomes their story

Just finished reading, "Miracle in the Andes," by Nando Parrado. The trek to get help when his rugby team crashed in the Andes is a story of perseverance, and I couldn't put it down. For a long time Nando wouldn't do speaking engagements because he didn't believe he was the hero the media was painting him. Finally, he gave in and discovered that his Andes story paralleled stories of his listeners. A woman who had accidentally backed over her 2 1/2 year old in the driveway, killing her said, "I know now that I have to go on. I have to find the strength to live for my husband and my other children. Your story makes me believe it is possible." This parallel happens as people read "Journey With Jeff." A special education teacher writes: "I was born two months early. My mom had trouble carrying babies full term. I stopped breathing and as a result had mild Cerebral Palsy. I was considered spastic paraplegic. It just affected my legs. I wore braces until the age of eight, and was delayed in lots of things! Doctors said I'd never walk, ride a bike, etc. I started walking at the age of 2 and rode a bike at 10 or 12. I was always good in school cognitively but was afraid to try sports. Probably that's why I am in my profession today. All my therapists were great. I loved the early start that all the "special teachers" gave me. Thanks for writing your book! Many people will love it, just as I have!" I really appreciate hearing from those who have read "Journey With Jeff"!