Music Eases Special Needs

I don't cry as much anymore remembering Jeff's death, but I cried today. We celebrated the life of my friend's daughter, Kathy who died after four and a half years of battling cancer. People came and came and came, as they did to Jeff's funeral. Music was a big part of Kathy's life. She used to play her guitar for a group of people with special needs at the SEEDS group which met every other week at her church. (Jeff loved going to his SEEDS group!) Her Memorial Service was full of the music she loved, and it comforted us who cried. Kathy's mom and I had served together on a Lutheran Women's Board years ago, and mutual thoughts of losing a child were felt in our moment of clasped hands on the way to communion. The music at Kathy's Memorial service eased our own special needs as caregivers, as well. Thank You, loving God! (Photo is of Jeff enjoying "making his own music.")

Respect for an Inherent Dignity

At a Lutheran Book Club discussion of "Journey With Jeff," one of the members experienced an "aHa Moment." She wrote, "Your book has made me more accepting of everyone just as God made them!" A new respect for the inborn dignity of all God's children was born! What an accomplishment, AND what a blessing this will be for everyone! She also said she "liked my format and found it easy to read -- each chapter a lesson in itself." She thanked me for putting my feelings "out there where hopefully we can all learn from them."~~~The presiding pastor added, "The discussion went really well. We talked about the style of writing, which we appreciated, especially the letters to God. We could picture Jeff, his struggles, the seizures and surprises, and talked at length about the time period that Jeff was alive. It was a great conversation that flowed well, and I encouraged everyone to send you an e-mail, or a letter, or to friend you on Face Book."~~~YES!~~~What a joy to know that eight Lutheran Book Club members joined together to read and discuss the story of our joys and challenges, and how God has blessed us and so many people through Jeff!

US Representatives Help Kids With Special Needs

The National Down Syndrome Congress reports that on March 3,2010, the Keeping All Students Safe Act (S.2860) passed the House of Representatives on a 262-153 vote! U.S. Representative Cathy McMorris-Rogers, mother of 3 year old Cole who has Down syndrome stated: "I am genuinely pleased by the House's bipartisan support for the Keeping All Students Safe in Schools Act. This critical piece of legislation confronts the unimaginable situation in schools across the country whereby some of our nation's most vulnerable children are treated in an inhumane and degrading manner. The thousands of incidents reported by the Government Accountability Office and others together with the piecemeal approach taken by the states demonstrates the need for federal guidance. I've been proud to work with many organizations and this is a victory for them. I thank Chairman Miller for his leadership and my colleagues for their support. Together, we work to ensure this bill is passed by the Senate." The focus now turns to the Senate and the intense effort that will be needed to pass the bill. Keep tuned, folks, we need to be aware of how to support, and be effective advocates for our children with special needs. Thank you!

Singing to Grandbabies

 
From the moment the tenor grandfather could finally hold his granddaughter, born prematurely at 24 weeks, he sang to her! She struggled with lung, heart and brain issues, and his singing calmed her. Our congregation, and many other people held this baby with special needs in prayer. She lived for 162 days, affecting the lives of many. At her Memorial Service this weekend, her grandfather sang, acappella, "Here I am, Lord." Cheeks were wet. Sniffles were audible. Music is such a special way to communicate!!~~~When my children were small, my mother used her beautiful voice to sing to Jeff and his sister, Jennifer. (See photo.) When Jeff had trouble with his seizures, and said with panicked eyes, "My head moved, Mom!" I remember singing nursery rhymes with him until he quieted down.~~~ When Jennifer's children were born they lived 1000 miles away, and I feared that our grandkids would not know who we were. I read stories on tape for them to listen to in the car as they traveled, singing the rhymes to them, wrapping them in a long-distance hug each time. Singing to grandbabies is a special way to communicate.

Review #11 on Amazon.com From Long-time Friend

Two differently abled boys grew up together,...one with scoliosis and one with Down syndrome. Jeff's friend wrote about "Journey With Jeff" in the Amazon.com review: "This is an inspirational story about a family that I knew when I was growing up in New York state. Jeff was a friend of mine and was full of love and joy. He was one of the most happy people I have ever met even though he was born with severe challenges. This book chronicles my friend's life, his parents' struggles and joys, and the family's incredibly strong faith as they journeyed with Jeff through his special life. The book is written specifically for inspiration for caregivers of people with special needs, but the story is inspirational for all people. This is one of those books that you keep after you've finished reading and turn to it when life throws you a curve."~~~I was delighted to discover this eleventh review on the Amazon.com page! I invite everyone who has read "Journey With Jeff" to write a review to help others know this encouragement. Thank you!!

Hospital Days With caregivers

 
When Jeff was in the hospital his last three weeks with leukemia, many caregivers walked in and out of his room. These included his pastor, the Lifetime Assistance Inc. staff, as well as family, friends and the nurses on his floor. We were deeply blessed with all the people God sent to care for him.~~~Since September 2009, a micro-preemie from our congregation has been surrounded by caregivers at Strong Hospital, with her family sticking very close. She has struggled with heart trouble, bleeding on the brain, difficulty breathing, even some pneumonia. For these past 162 days her mother has kept a daily journal and photo log on a Caring Bridge website, writing from the baby's point of view. (When Jeff was young I wrote his thank you notes and kept Jeff's Progress Record using his voice.)The support of family and friends, and even strangers has added up to about 22,000 hits on her Caring Brige website, with 126 responses to her story. Sunday morning our congregation learned that this precious baby we'd carried in our prayers for five months had gone Home to be with Jesus the night before. Pastor Mike had baptized her while she slept in her mother's arms and then her mom and dad were able to hold her and each other. We are sad that this little girl was on earth for so short a time, but we rejoice that her mom and dad and their family believe she'll be welcomed by her great grandparents waiting for her in Heaven.~~~Seeing Jeff again is our great hope, as well!! (Photo is of Pastor Don Miller visiting Jeff in the hospital, Oct.1988)

"Journey With Jeff" for Caregivers

My book,"Journey With Jeff; Inspiration for Caregivers of People with Special Needs"has been on the Rochester, NY, communities' Wegman's Store shelves since the middle of November. Four copies were in each of five Wegman's stores, where I checked a couple of times, and was pleased to see only one or two left on their shelves! This week only three books were returned to me, which means 17 are now out in the community, telling caregivers they are not alone! I hope they'll accept the invitation on the last page of "Journey With Jeff," to send their responses to me at my e-mail or snail-mail address. Those responses are such an encouragement to me!!~~~Jeff's special needs were spelled out by Down Syndrome. His friend, Brian, who wrote the response to "Journey" in the previous blog, "A Tribute to My Special Friend," was inspired by Jeff when he had to face experimental treatments and finally spinal fusion surgery for scoliosis as an 11 year old. I asked Brian how he'd learned about the book and he pointed to this blog and/or Amazon.com. "It's one of those books I'll keep," he said, "and, refer back to when I need inspiration."~~~The first lines of a poem by James W. Foley titled, "Drop a Pebble in the Water," suggest how Jeff's story has spread to -- who knows where? "Drop a pebble in the water: just a splash, and it is gone; But there's half-a-hundred ripples circling on and on and on. Spreading, spreading from the center, flowing on out to the sea. And there's no way of telling where the end is going to be." All praise to You, O Lord!!!