Journey With Jeff in Hometown Library

This weekend has been full of inspiration, encouragement, family and friends! Since one of my
High School classmates knew I'd be in Middleburgh, NY, for my
nephew John Paul's 40th birthday, he arranged a presentation of Journey with Jeff at my hometown library. Usually 8 - 15 people attend the library presentations. There were 12 who came this time -- schoolmates (some with spouses,) cousins, teachers and librarians. As I shared how I came to write Jeff's story, and our joys and challenges along the way, I read three vignettes: "Welcome To Holland," which helps people stop mourning what they wish their child could have become, but open their arms to the trip to come; "Movin' On" which includes many of the events and emotions of Jeff moving from home; and "Big Bird's Car," my favorite story, and one which causes much laughter.~~~Six people bought a copy of Journey With Jeff, and a few shared their own stories. One woman bought a copy for her sister whose daughter has severe Cerebral Palsy. I learned that a young man in his 30's was there, along with his parents, who is slowly deteriorating, and the doctors can do nothing about it. They seem to be handling it bravely. I left a book for the Middleburgh Library shelves as well. I hope the people will Read It, Review It, and Pass It On!

"Journey With Jeff" on Google Alert

About seven blogs ago I wrote of Michelle, who had lost four babies by miscarriage. When she was expecting again, tests showed the possibility of having a child with Down syndrome. The doctor asked if she wanted to abort, and she said, "No way!" Her son is a fine, flourishing four-year-old today. The tests were wrong! ~~~Here is another story, quite the opposite. Patricia Bauer writes in her blog about an Oregon couple who seeks $14 million in a "wrongful birth" lawsuit. This is to cover the cost of raising their 2-year-old daughter born with Down syndrome, providing education, medical care, and speech and physical therapy. Deborah and Ariel Levy said they would have gotten an abortion if they had known their daughter would have the condition. They said they were given incorrect information , and their lives were changed because of it. There were many responses to this article: Keri says, "Some people expect their children (and other people's children) to be born perfect and to stay that way." The NWDSA is concerned with the tyranny of perfection at the heart of this. Two readers say," Just think what this is saying to their two older children..."We love you both so much (just like we love your little sister) but if you had a birth defect (or maybe if you develop a problem) we'd wish that you'd never been born." Chris says, "Since the Levy's don't want their burdensome daughter, I'll take her!" Keri continues, "I get such joy from my daughter, and I couldn't imagine her any other way. She's an amazing individual and I know that she will go far in life. Anyone who doesn't think so needs to get out of her way!" I love that last statement! What enthusiasm and encouragement! It's an acceptance of their daughter, and her incredible potential to be all that God created her to be!

Encouragement For Friends

Sue's my long-time friend who says that "Journey With Jeff" helped her to let go and let God bring good out of the birth of Christine, her still-born baby. Sue believes that Christine has angel wings which helps her know her baby lives in God's presence, and which gives her a peace beyond understanding. She thoroughly enjoys creating angels from lace and ribbon, feathers and pipe-cleaners, and distributing them to people who need the encouragement these symbols give. "I have a ministry ," she says, "of making angels for people who are struggling in their lives. They tell me these angels make a difference in their lives every time they see them."~~~Sue tells me,"Your 'Journey With Jeff' has just begun to be a success! People read it and lives are changed! You and I in our ministries are blessed when they tell us about it!! " Amen!

10 Reviews of "Journey With Jeff" on Amazon.com

I have been looking for Reni Hy's review on Amazon.com since she promised me at the Lutheran convention to write it. Earlier, another friend had been told that since she hadn't purchased anything from Amazon.com, her review couldn't be accepted. "Quick!" I e-mailed Reni, "buy something! (Only kidding!)" She laughed by e-mail and said, "I will do that in a heartbeat, if I can. I'm excited to contribute in anyway to help the sale of this book." And,...today it is on Amazon.com -- the 10th Review! Reni's heading surprised me: "A must read for High School students enrolled in Parenting Classes or those interested in working with children." She continues, "This book is a great instructional tool on the psychology of a family expecting a baby and finding after the baby is born, that the child has Down syndrome. Well written, heart rending, it leaves one with the experience of what an average family travels through with Downs the same way one experiences Nazi Germany through the eyes of Anne Frank. I highly recommend the book to all. Everyone will benefit from it." ~~~If you, Dear Reader, can recommend "Journey With Jeff," let the world know through Amazon.com!!! Thank you!!!

Caregivers at Passavant ~~150 Years Ago

I met Dolores Fruth at my presentation of "Journey With Jeff" at the Passavant Retirement Community in Zelienople, PA in May. I was impressed with her 25 year history of working at a Home in Rochester, PA for the care of epileptic and mentally retarded adults. Passavant Memorial Home and the Retirement Community were named after a great man who in the 1800's went about establishing churches, children's homes, hospital, colleges and seminaries. ~~~When Dolores' husband, Bill was called as the Administrator and Pastor of the facility, there were almost 100 residents -- at a time when there was little or no support from the government. They relied upon churches in that area to help support the Home. The Fruths lived with the residents on the grounds and felt that they were their family. Dolores said it was a long hard struggle for 25 years, working and praying and trying to improve their family's lot in life. This is Dolores' first poem after moving to Passavant~~~~
WHAT IS A MOTHER?
Ninety people call me "Mom." I don't know how I rate.
Their ages go to 84 And I'm just 48.
I plan their meals and buy the clothes, Take care of many needs.
We play and work together now, So caring is a breeze.
The family here at Passavant Has taught me how to share
My mother instincts with the ones who now are in our care.
God give me strength to do the best As we live with each other,
To earn the name they place on me, That I am truly "MOTHER!"
~~~How good it is to learn how well the people with special needs were cared for in this Home!! (Photo is of Dolores Fruth and the author in Passavant Retirement Community auditorium.)

The Down Syndrome News

The Down Syndrome News is the monthly newsletter of the National Down Syndrome Congress.
Lately the issues are full of stories about people with Down syndrome written by people with Down Syndrome. The writer's ages range from 16 - 40. The 16 year old is a drummer who wrote a Game Review of "Guitar Hero" for the Mentor High School newspaper, with some help from his siblings.~~~A 21 year old boy described a plane ride where the flight attendants announced to everyone on the plane that it was his birthday and sang to him. They made a roll of toilet paper into a birthday cake with pretend candles, making it "a real special day!"~~~A Louisiana Self-Advocate earned his Eagle Scout rank and 2 Eagle palms in 1992, and has been active as an assistant Scoutmaster for 16 years. He's also happy working at his church as a custodian three days a week.~~~A 38 year old woman wrote a newspaper piece titled, "I Really Want Them to Treat Me Nice." She says, "Part of my dream is to be independent and help people. I like living by myself. I can make my own decisions and not be told when to do the laundry, when to clean, when to go to my room. I know I have Down syndrome. That's a disability, so I need help. I'm not perfect. I know I am not like others, but I really want them to treat me nice."~~~On the Heading of these news stories, the word 'Down' in Down syndrome is crossed out, and 'Up' is written instead. They are truly Self-Advocates!! (Photo is of Jeff in his hero outfit, with his friends.)