by jphilo | May 9, 2012 | Books and Resources, Different Dream, Spiritual Support
Those of you who visited DifferentDream.com yesterday met our special guest, Jill Kelly, when she shared the story of their son, Hunter. Hunter was diagnosed with Krabbe Disease as an infant and died from the condition at age seven. In today’s question and answer session, Jill explains how her family continues to advocate for children with special needs.
How are you involved in the special needs community now?
We have both a national and local presence. We do fundraising through Kellys for Kids, which is a global organization. Hunter’s Hope Foundation holds an annual medical symposium. During the four day conference, families come from all over the world to gain in-depth information about leukodystrophies, learn about the latest developments in scientific research and medical care, identify available resources, and develop support systems. We minister personally to those families when they are there. On a local level, we are active throughout western New York state. We join families as they fund raise, meet with kids at school. Hands-on love is a great blessing.
Erin and Camyrn have a ministry for tween girls. The first book in their Hot Chocolate with God series was released in September of 2011, and tweens can visit their website at www.hotchocolatewithgod.com.
What can churches, schools, friends, family, and the medical community do to better support parents of kids with special needs?
My advice is that people listen to parents. They are special needs advocates and very busy caregivers. They speak up only when the need is pressing. If they come to you, it is important. So listen because parents want listeners. I also encourage people to get involved with families. Live beyond yourself and get to know families and children. Once you leave your comfort zone, you will be blessed. And of course, pray for families.
Tell us about your books.
Without a Word is a memoir of life with Hunter. My prayer books are taken from my journals. They are raw and real, and God uses them with parents who are struggling with God. Prayers of Hope for the Brokenhearted comes from a season of confusion. Prayers for Those Who Grieve was written after our season of grief. My new book, Etched on My Heart: What We Learn and Why We Never Forget goes deeper into the moments when God reveals himself, even when we aren’t aware. It will be released in January of 2013.
Thanks to Jill Kelly
Thank you, Jill Kelly, for visiting DifferentDream.com and for sharing Hunter’s story with us. I was encouraged by what you shared and hope others did, too. Readers, leave a comment about how Jill and Hunter’s story touched your heart or changed your outlook. She would love to hear from you!
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | May 8, 2012 | Books and Resources, Different Dream, Spiritual Support
Today DifferentDream.com welcomes Jill Kelly for the first of two Q & A special needs parenting sessions. Jill and her husband Jim, former quarterback for the Buffalo Bills, are the parents of three children – Erin, Hunter, and Camyrn. Hunter, their second child and only son, was diagnosed with Krabbe Leukodystrophy as an infant and died when he was eight. In 1997, they founded the Hunter’s Hope Foundation to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies.
A few weeks ago, Jill and I spent an hour talking. Today’s post relates what her family learned from Hunter. Tomorrow’s post will be about how they remain active in the special needs community.
Would you share some of your special needs journey with DifferentDream.com readers?
Until and after diagnosis, we didn’t consider Hunter as special needs or handicapped. Because his condition was terminal, we treated him as terminal. It wasn’t until Christ intervened and we put our faith in him that we considered him as living. Early on, we were afraid and desperate. Our education was a continuous learning to let go and to let others come into our lives. Though Jim had an public career, we were a private family until we started sharing Hunter with therapists and caregivers. Everyone gained – Hunter, them, and us. Our girls never saw Hunter as a child with special needs. He was who he was, and they saw beyond the special needs to the person inside.
How did being Hunter’s mom change you? How did he change your family?
God used our one and only son to bring us to his one and only Son. Everything fell into place after that. Hunter had to have everything brought close to him so he could experience it. He taught me to be patient, to stop and be still and take in God’s creation. Most people don’t pay attention to those things or to anything God shows us. So Hunter opened our lives to the gift of life, to the gift of breath. I also learned to hold plans loosely because plans change quickly with a child who has special needs. Hunter taught me how temporary our lives are, how we are being prepared for eternity. He also taught us not to be afraid of death and suffering, but to trust God’s sovereignty because all suffering reveals God’s greater glory.
Jim learned a great deal, too. He recognizes he is not in control. Jim’s a natural leader, so surrendering control wasn’t easy. He now leads from the heart of God. He’s always had a great deal of compassion, but he’s compassionate in a different way now. He’s much more thankful for people, mindful what volunteers give, and appreciative of people.
Our daughters, Erin and Camyrn, learned to be humble and compassionate. They see beyond material things.
Who’s been your greatest support other than God?
My mother. We came to faith together. Her relationship with Hunter was willing, generous, and loving. She’s been an amazing example for me and our daughters. Erin once said, “I love Granny as much as I love you, Mom.” Our girls see her love poured into their lives.
What was the best piece of advice you were given when Hunter was with you?
After we received the diagnosis, my Uncle Mark visited. He said, “Jill, you’ll never know what real love is until you know love through his Son.” I didn’t understand what he meant then, but his words made me want to know. That’s when I started to seek after God.
What encouragement do you have for parents of kids with special needs?
Trust that God’s grace is sufficient in both your darkest valley and your greatest triumph, so persevere. This isn’t the end of the story. The story culminates in no more tears or suffering. Because we know what’s coming, we have hope in the moment.
Share Your Thoughts
Thank you, Jill, for sharing your journey with us. Did her words touch you? Encourage you? Inspire you? If so, leave a comment to encourage Jill. And come back tomorrow to learn about how her family continues to advocate for children with special needs.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Mar 12, 2012 | Books and Resources, Different Dream, Spiritual Support
I love bargains and love to pass them on to friends. Today, I’m passing along something better than a bargain – a free prayer guide from my book, Different Dream Parenting.
Why a 30 Day Free Prayer Guide?
This prayer guide, along with the other 6 in Different Dream Parenting, is a 30 day guide – a whole month’s worth. Our pastor hooked me on the concept years ago. A monthly guide, as opposed to a weekly one, doesn’t get so repetitive. And it’s much easier to catch up on a missing day in a daily guide compared to a yearly one.
Why So Much Scripture?
Praying Scripture is another thing modeled by our pastor. He encourages people to pray Scripture because we can pray confidently when we pray his Word back to them. So each entry in the guide begins with a Scripture followed by a prayer based upon the verse. Hopefully, the guide will be a tool you can use to draw closer to God. To download the guide, go to Free Stuff and click away.
More Free Stuff Coming
After you download the prayer guide, leave some feedback in the comment box. And check the free stuff page often because more freebies will be uploaded in the next few months.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Mar 7, 2012 | Books and Resources, Different Dream, Spiritual Support
Peter and Amy Julia Becker weren’t expecting a special needs diagnosis after the birth of their first child. When the doctor said he suspected their daughter Penny had Down syndrome, Amy’s life and her expectations for her daughter changed.
A Good and Perfect Gift: A Mother’s Memoir
A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny is Amy Julia Becker’s memoir about the first three years of her journey as the parent of a child with special needs. Becker describes the grief she experienced after the diagnosis. She details her reluctance acceptance of her role as Down syndrome advocate and expert, as well as her anger and frustration with the responses of well-meaning, uninformed friends and acquaintances.
Questions Pondered
The book also provides an accounting of the faith questions that plagued Becker during her daughter’s first months and years. Was Penny’s Down syndrome caused in part by Becker’s struggle with eating disorders in high school? Would her faith be strengthened or broken by this special needs diagnosis? Was God in control? Did Penny’s Down syndrome make her less perfect than other people? The author honestly recounts her thought processes, tracing her changing perspectives as she sought answers.
Beautiful Writing and Quiet, Intelligent Faith
Clear, beautiful prose mark this memoir. Becker writes transparently, sharing her doubts and feelings without becoming overly emotional or sentimental. She presents her faith quietly and intelligently, never shying away from complex theological dilemmas. She accomplishes this without being preachy or self-righteous. In fact, humility and brokenness pervade the pages of this memoir.
Thank You, Amy Julia Becker
I am thankful someone recommended Becker’s book to me. It is, perhaps, the best special needs parenting memoir I have read in either the Christian or general market. I will recommend A Good and Perfect Gift to friends whatever their faith affiliation may be. In fact, if you haven’t read it yet, I recommend you do so as soon as you can. If you have read it, what did you think of the book. Leave a comment about your response to Amy Julia Becker’s memoir about being the parent of a child with special needs, A Good and Perfect Gift.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Sep 6, 2010 | Books and Resources, Different Dream, Spiritual Support
If hope is in short supply at your house, watch The Butterfly Circus. If you’re wondering why God is allowing your child and your family to struggle and live with pain, watch The Butterfly Circus. If your child with special needs is looking for a role model, watch The Butterfly Circus.
Starring Nick VujiciC & Eduardo Verastegui
This short film, part of the Doorpost Film Project, stars Nick Vujicic. An inspirational speaker, born without arms or legs, has turned down numerous film projects. But not this one. He accepted the lead part in this Depression era story. Once you watch it, you’ll understand. You’ll know why Eduardo Verastegui of Bella fame accepted a role, too, along with Doug Jones who you might have seen in Fantastic Four.
Watch & Discuss “The Butterfly Circus”
You can view the short film at The Butterfly Circus. The film can also be used to stimulate discussion about differently-abled kids and adults. Here’s what Lynn Jackson of www.connectedfamilies.com says:
Nearly every film or show of substance has some Biblical idea (or not so Biblical idea) that can be thought about and discussed with children. Perhaps you’ve discovered this, or perhaps this is new to you. Either way, we found this film a great opportunity to discuss God’s grace, compassion for people, popularity, and a number of other themes the Bible speaks to.
Lynn Jackson’s Discussion Questions
In her most recent newsletter, Lynn provided discussion questions to use after viewing the film. Here are a few for younger children:
- What did the Butterfly Circus master do that was kind to people?
- How did each of them make people feel?
- Do you know anybody that feels sad because people are unkind to them?
- How could you be kind to that person?
- Why was it called the Butterfly Circus?
And here are a few for older kids:
- How do you think the two circus masters viewed life – what’s important, what does it mean to be successful? How did that affect how they treated people?
- How did Will discover his strengths and the courage to use them?
- What might Will say he was uniquely created to do?
You can find more parenting tips and sign up for Lynn’s newsletter at www.connectedfamilies.com.
What Did You Think of Butterfly Circus?
After you watch the film, come back and share your thoughts. Or if you discuss the film with your kids, share their insights.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Apr 28, 2010 | Books and Resources, Different Dream, Spiritual Support
On the surface, caregiving for an infant or child appears to be quite different from caring for an adult. But as someone who grew up with a father who required nursing care and as the mother of a newborn with major medical needs, I can tell you the two experiences had a great deal in common. One of the greatest common needs of caregivers in both situations is for someone to care for them.
Precious Lord, Take My Hand
In Precious Lord, Take My Hand, Shelly Beach does exactly that. True, her story is about taking first her elderly father-in-law and then her parents into her home and caring for them. She shares her frustrations and joys with honestly and spiritual insight. Humor and compassion carry her, her elderly family members and the reader through end-of-life issues. By the end of the devotional book, Shelly’s father-in-law, her mom, and her dad will be your dear friends, encouraging you on your caregiving journey.
You will identify with the stories in Precious Lord, Take My Hand because it cares for the caregivers. Whether the person needing care is eight or eighty, their caregivers need the same things: an encourager who understands the challenges they face, a compassionate voice assuring them they are not alone, a guide who can point them to practical resources, and the assurance of someone who knows God is faithful in the joys and sorrows of life. You’ll find all those things in Shelly Beach’s book.
More About Shelly Beach
You can learn more about Shelly and her other non-fiction and fiction books at www.shellybeachonline.com. She’s a versatile writer, and her other titles may interest you. She’s got several other projects in the works, so visit her site now and then to see what’s new.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
