by jphilo | Oct 18, 2012 | Books and Resources, Different Dream, Spiritual Support
Infant Loss and Miscarriage: Teske Drake Offers Hope
Infant loss and miscarriage may seem like an unusual topic to address on a special needs parenting website. But many of these infants are diagnosed with special needs in utero. Teske Drake, author of Hope for Today, Promises for Tomorrow: Finding Light Beyond the Shadow of Miscarriage or Infant Loss is one of those parents.
Infant Loss and Teske Drake
Teske and her husband are parents of five children, two who live on this earth and three who live in heaven. Throughout the deaths of her daughter at birth and a daughter and son through miscarriage, God led Teske on her grief journey. Along the way, she met other mommies dealing with similar losses. Then, she and a friend created a local support group for grieving moms. Next, they created a website, www.mommieswithhope.com (editor’s note 2024: now defunct). Finally, she wrote Hope for Today, Promises for Tomorrow, released by Kregel Publishing, to reach even more families affected by infant loss and miscarriage.
Infant Loss and Hope for Today
Tesse quietly unfolds her personal story and offers hope to struggling parents, especially moms. Chapter by chapter, she encourages grieving families by exploring these promises of God:
- The promise of His love
- The promise of His goodness
- The promise of His purpose
- The promise of comfort
- The promise of peace
- The promise of refinement
- The promise of restoration
- The promise of hope
- The promise of eternity
The book ends with stories of how other parents found hope after the loss of an infant or unborn child. It also recounts the history of Mommies with Hope support groups and provides contact information for those interested in starting new groups. Hope for Today’s Promises is a resource parents who have lost infants, churches and grief support groups need on their shelves.
Infant Loss and You
If you have experienced the loss of an infant, I am so sorry. I invite you to share your child’s name and story below.
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by jphilo | Oct 10, 2012 | Books and Resources, Different Dream, Spiritual Support
Medically Fragile Children: Practical Parenting Help
Medically fragile children need parents with a unique set of skills. Because these skills aren’t taught in parenting classes or addressed in parenting books, dads and moms with children who have critical medical needs are forced to scramble to find resources while they’re still coming to terms with an unexpected diagnosis. My book, Different Dream Parenting, has several chapters about parenting kids with medical special needs, but a new book by Margaret Meder deals exclusively with this subset of medically fragile special needs children.
Meet Margaret Meder
Margaret Meder and her husband Randy are parents to Jonathan and Evan. Evan, their second child, was diagnosed with Apert syndrome shortly after his birth in June of 2004. Their newborn spent 4 weeks in NICU and was hospitalized numerous other times because of respiratory issues and corrective surgeries. Margaret looked for books to help her family on their parenting journey but found none. Once her son’s health stabilized several years later, she wrote a book to share what she learned with other families in similar situations.
Check Out Margaret’s Book
Margaret’s book about parenting kids who are medically fragile is called Uncommon Beauty: Crisis Parenting from Day One. It contains over 100 tips covering diverse topics such as dealing with insurance companies, setting up a schedule, advocating for your child, and staying positive. Each tip includes current information and an excerpt from Meder’s journal when Evan was very young. The juxtaposition of past and present shows Margaret’s initial identification of new problems and how she found solutions.
Her advice provides practical examples, as one about how to prepare for the arrival of paramedics and an ambulance shows. Meder suggests creating a vital information sheet – long before a crisis, of course. A five bullet point list outlines what the sheet should contain. On the same page, Meder explains what to pack in an emergency visit backpack and how to tailor the contents to your child’s specific medical condition.
Advice About Medically Fragile Children
Meder’s book is a valuable resource to parents of kids who are medically fragile, and I recommend it. You might also like to visit her website, www.uncommonbeauty-crisisparenting.com. But before you go visit Margaret’s site, perhaps you would like to share a tip or two you’ve discovered as the parent of a child who is medically fragile. If so, leave a comment below.
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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.
