For those of you following the Support System for Parents Video Series, Part 2 is up and ready for viewing. You’ll find it and the previous videos in the series at the Life Dreams Channel of WebTV4Women. In the new clip, I share five more ways you can support parents of a hospitalized child, even if you can’t get there to visit. Next week, I’ll upload the final episode in the series – five ways to help parents when you stop in for a visit.

If you’ve had a child in the hospital and have stories about how people helped you, leave a comment. When enough new ideas pile up, maybe another clip will be in order.

Thanks!
Jolene Philo

The previous post in this series introduced you to Justin and Victoria Nelson, proud parents of Moriah, age two. In this post, you’ll hear their answers to some questions about how Moriah’s medical saga has impacted them.

How Has This Changed You?

Justin: I learned to come to God and give him each day. Trust in God and constant reliance on who He is. That’s the only way to survive.

Victoria: As a mom, I used to be shy, but learned I can’t be. I have to speak up, be strong, and advocate for Moriah. I have to keep going, stand my ground, and be firm.

Justin: The situation simplified my perspective on life. I used to be ambitious for my family, but I’ve learned to be content with little things. I have my wife, my daughter, and God. I don’t need any other stuff.

Victoria: I’ve become passionate for kids with medical needs. Someday I would love to give back – support families and show appreciation to doctors and nurses.

Do You Have Advice for Parents?

Justin: Spend time with God each day. Hold onto his promises. He loves us more than we understand. Seek him even when you’re ticked off about what’s happening. Only God can help you do that.

Victoria: They should read your book, Jolene. It covers everything and says it all.

Jolene’s Disclaimer

Just so you know, I didn’t pay Victoria or bribe her in any way to say that about A Different Dream for My Child. In fact, this young couple is much more mature than my husband and I were when Allen was little. So I encourage you to visit www.momentswithmoriah.com often to see how they are doing and benefit from their wisdom and insight. Along with updates about Moriah, you’ll find links to other parents’ websites, information about support organizations, and much more.

You’ll also fall in love with Moriah and her parents. I sure did.

Blessings to the Nelsons,
Jolene

Every now and then, God flabbergasts me with his creative ways of bringing people together. Recently, he used modern cyberspace and an old-fashioned book to connect me with to delightful young parents.

Moriah’s Mom and Dad

I first learned about Moriah’s mom and dad, Victoria and Justin Nelson, by clicking on a google alert link to www.momentswithmoriah.com. A young mom I didn’t know had posted a review of  A Different Dream for My Child. Victoria said someone had donated to the San Francisco Children’s Recovery Center, so she picked it up and read it. Touched by whayt she read, she wrote a review and posted it.

Once she did, visits to DifferentDream.com and books sales increased significantly. So I went to Moriah’s website and was intrigued by her parents’ positive attitudes, even though Moriah has been hospitalized most of her short life.

Justin and Victoria Nelson

The Nelsons shared Moriah’s story during a recent phone call. Their website describes their daughter’s medical journey completely, so there’s no need to recount it here. Instead, here are a few of the struggles Justin and Victoria have experienced since they knew their daughter was on the way.

• They learned of Moriah’s heart defect when Victoria was six months pregnant. Abortion was out of the question for them.
• They became advocates for their daughter after she was born in Los Angeles on January 23, 2008. They researched the heart surgery she needed and contacting the San Francisco surgeon who saved Moriah’s life.
• Eventually, Justin took a job demotion that allowed him to transfer to San Francisco so Moriah’s medical care could continue there.
• Justin and Victoria don’t feel sorry for themselves. Since Moriah’s health has stablized and she’s become stronger in the last few months, they went through a “let down” and are now receiving counseling for post-traumatic stress.
• These parents are 26 and 25 years old, close in age to my kids. Their maturity and faith is marvelous.

In the second post in this series, the Nelsons talk about how Moriah’s life has changed them. Their insights will warm your heart and challenge your faith. Until then, you can learn more about them and see pictures of the adorable Moriah at their website.

Jolene Philo

In the previous two posts in this series, you learned about Chad Gray, childhood cancer survivor and Rita Gray, his mother and author of TLC for Parents of Seriously Ill Children. TLC is a ten week Bible study for parents. Though it was originally designed as a group study, it can be used individually as well.

What’s Inside TLC for Parents of Seriously Ill Children

The Bible study begins with an introductory chapter and then nine lessons grouped into four categories:

• Caring for the Caregiver (three lessons)
• Caring for the Clan (two lessons)
• Caring for the Child (three lessons)
• Caring for Our Future (one lesson)

The lessons include devotional readings to be completed individually during the week. Prayers, scripture, TLC truths, and discussion questions are provided for use during group meetings.

TLC Snapshot

Rita tells her family’s story and snippets of other families’ stories in the devotional readings. The attitude of Nancy Brown, whose son Ryan was diagnosed with advanced cancer at three, made a particular impact on me. Because so much of Ryan’s young life was consumed by inpatient cancer treatment, Nancy decided to make Ryan’s hospital stays fun. She says, “I invented ‘chemo camp.’ That is what we called our three to four day stays in the hospital for chemotherapy. For this event, we had special bedding. He opted for the red, purple, turquoise and green dinosaur sheets and comforter…We also hung up window clings, and brought some favorite toys from home.”

Nancy then describes one of their favorite activities. “We would walk the halls, with IV pole in tow. To make camp more fun, we invented what Ryan called ’ski-watering.’ This involved Ryan standing on the IV pole base with me pusing him around the place as quickly as he could tolerate.”

What a wonderful story! If you need a spiritual boost, practical advice, and the encouragement of parents in similar circumstances, consider organizing a TLC Bible study. Books are available at Rita’s website www.tlcforparents.com. If you start a group, leave a comment about how it’s going. Your experience could encourage someone else to start a study, too.

Blessings
Jolene

After sharing Chad’s story in the first post in this series, I knew you’d want to see a picture of this handsome young man. It makes you smile, doesn’t it?

Rita’s Advice for Parents

When Rita and I talked on the phone a few weeks ago, I asked her to share advice with parents of kids with special needs. Here are her suggestions for staying strong spiritually:

• Read your Bible every day, even if it’s only a few verses.
• Claim some verses when your child is diagnosed and lean on them throughout the journey. One of Rita’s verses was Psalm 46: 10 – Be still and know that I am God.
• Ask people to be on your prayer team and pray for your specific needs.
• Pray for the doctors and educators working with your child.
• Instead of focusing on the possibility of death, be thankful each day that your child is living with his condition.
• Adjust your attitude by paying attention to the other families in the hospital. There’s always a family experiencing greater difficulties than you are.
• Schedule play dates at your house so you can answer questions friends have about your child’s condition.

Rita’s Advice for Friends

Rita also shared the following advice for friends of the family:

• Remember what the parents enjoyed doing before the life-altering diagnosis. Talk about hobbies or interests with parents instead of focusing only on illness and treatment. Parents will welcome the change and find it refreshing.
• If you want to give a gift to the child, give gifts to his siblings so they don’t feel overlooked.

In the last post in this series, you’ll learn about what’s inside Rita’s group Bible study and how to use it. Until then, choose one of Rita’s suggestions and give it a try. If it makes a difference in your attitude or ability to cope, leave a comment.

Thanks,
Jolene Philo

One of the most gratifying aspects of my work is connecting with parents of kids with special needs and hearing their stories. One of those parents is Rita Gray whose son Chad is a childhood cancer survivor.

Chad’s Story

Chad was diagnosed with high risk leukemia in September of 1996 when he was four years old. He endured twenty spinal taps and eight different kinds of chemo treatments in three years. Many of the friends Chad made in the hospital are now in heaven, but Chad beat the odds. He was declared cancer-free in 1999 to the delight of his parents and older siblings, Ryan and Katie.

Chad Today

In September 2009, Chad celebrated ten years of cancer-free life. He’s considered cured, but is still being followed as part of a survivor study at Johns Hopkins Hospital. As a result of aggressive chemo, Chad experienced short-term memory loss which required an Individualized Educational Plan (IEP) during his school years.

Impact on Rita

When Chad was first diagnosed, Rita searched for faith-based resources to help her family. But she couldn’t find any. So once Chad’s health stabilized, she created a group Bible study for parents of children with special needs. In the next post in this series, Rita will share advice and encouragement for parents of kids with special needs. You won’t want to miss it!

Jolene Philo

PS  – Jenny, a childhood cancer survivor I interviewed for A Different Dream for My Child, just celebrated twenty years cancer-free. She’s now a church youth leader in South Dakota. God is good!

Sometimes parents long for a boost to keep them focused and positive about the challenges that accompany caring for a child with special needs.

Meet Steve Siler

Steve Siler is the parent of a son with special needs and a musician with the heart to help people as they navigate their way through difficult times. He created his ministry to encourage people engaged in a variety of life struggles including suicide and grief, eating disorders, and breast cancer to name a few.

Music for the Soul

To appreciate the breadth of his compassion, you need to visit his recently redesigned website www.musicforthesoul.org. One of the products available is Whole in the Sight of God, a CD for parents of kids with special needs. It includes orginal songs, an interview with Joni Eareckson-Tada and one of her friends, and readings by parents and kids. You can learn more about it at the Loving Special Needs Children link.

If you need a boost, or know a parent who does, Whole in the Sight of God might be just what you’re looking for.

Enjoy,
Jolene Philo

When our son was born and flown 750 miles away for emergency surgery and a 3 week NICU stay, people wanted to help us.

There’s No Stopping Good Friends

But we were so wrapped up in our son’s needs and negotiating the hospital, our minds went blank every time they asked. However, that didn’t stop our friends. And from what I’ve learned from other parents in similar situations, it didn’t stop their friends either.

Five Ways You Can Help

To hear about five creative ways friends and family can help parents with hospitalized kids, check out Support Systems for Parents, Part 1 at WebTV4Women’s Life Dreams Channel. In the next few weeks, two more installments in this series will be uploaded, so check back often for more ideas.

And leave a comment about ways people have helped families with kids in the hospital. Good deeds deserve to be shouted from the rooftop!

Ready to shout,
Jolene

In the last DifferentDream.com post, you learned about Balanced Living All Year, Joan Celebi’s new book for parents of kids with special needs. In this post, you’ll hear about her favorite new IEP resources.

IEP Phone App

One of Joan’s picks is the IEP Phone App available at no charge, compliments of the Parent Educational Advocacy Training Center (PEATC). You can download the app at their website, www.peact.org. According to Celebi, “it has every step, fact, and law – arranged in easy to access categories and sub-categories, color-coded, with space for your notes.”

IEP/504 Comparison Chart

If my blog post awhile back, Which Does My Child Need: IEP or 504B, didn’t clear up your confusion between the two, onother one of Joan’s picks might do the trick. She found a handy-dandy chart that explains the difference between an Individualized Education Plan (IEP) and a 504b plan. As she says, “This simple little 3-page chart finally answers that question, with a side-by-side, point-by point comparison.” You can Download the Comparison Chart Here.

SpecialNeedsParentCoach.com

You can read about Joan’s other top picks for 2010 at her website www.SpecialNeedsParentCoach.com. While you’re there, sign up for her newsletter which alerts parents to many great finds like these, especially about IEPs. Hope they help.

Jolene Philo

If you are looking for a way to assist a family caring for a child with special needs, a new series at the Life Dreams Channel will give you lots of ideas. Go to WebTV4Women to watch the series introduction. Then visit weekly for each new installment of the three part series.

You can leave your suggestions about how to support families below. Or you can rate the clips and leave feedback at the Life Dreams Channel.

Thanks for watching,
Jolene