Book for Kids with Parents with Chronic Illness

We’ve recently come across a great little booklet you can print out and staple together to have a tool that is interesting to your kiddo to explain multiple sclerosis. We know that the people who have MS are just a percentage of our visitors here, but it may provide some helpful ideas to even create your own booklet or talking points about your disease. This is also a great resource if you are a church member or resource center and looking for more tools for helping children cope with a parent with chronic illness. This one is called “Someone You Know Has MS: A Book For Families” and is 38 pages long.

This booklet for kids with parents with chronic illness was obviously put together with great purpose and skill. It has fun cartoon-like photos that kids are naturally drawn to, easy language, and good content. For example, kids as, “Why did this happen in my family?” It helps kids answer the questions other kids may have such as “Will your mom die?” or “Will you catch it?”

The booklet also explains some things that are hard for mom now and how she may use some assistive devices like a cane or wheelchair that may be a bit embarrassing for kids.

And it concludes with feelings, how to do fun things together as a family, and how the family may even get involved in advocacy or fundraising and awareness events.

Regardless of your illness this free booklet is worth downloading and printing out and just replace some of the information on multiple sclerosis to your own disease and read it with your child. It’s a great tool to start conversation and validate what your kids may be feeling and are not verbally talking with you about. This is also an excellent resource for teachers and if you are a parent with an illness, pass along a copy to his or her teacher so s/he gets some refresher tips on handling kids’ questions.

In Nehemiah 4:2 it asks, “Can they bring the stones back to life from those heaps of rubble–burned as they are?” Have you ever felt like a heap of rubble?

This week I felt like that more than I can recall feeling in a long while. Rubble – Dictionary definition: A loose mass of angular fragments of rock or masonry crumbled by natural or human forces. Irregular fragments or pieces of rock used in masonry. The masonry made with such rocks.

I particularly relate to the “angular fragments” mentioned in the definition. When I feel like I’ve been hit by a truck, as I did this week, I know that my edges are cutting into everyone around me. I want to remove myself from my family until it is all over and I am somewhat “smooth around the edges” once again.

But that is not possible and it is so painful emotionally when I feel that way. My vision of a wife and mom never had cutting edges in it. My dreams of family life were filled with love, hugs, encouragement, and lots of close times together. With pain and fatigue the last thing I want is to be close to anyone. I simply want to be left alone.

How hard it is to tell the ones you love you need to rest and shut the door on them and their lives once again, knowing it won’t be the last time you do so?

“So we rebuilt the wall till all of it reached half its height, for the people worked with all their heart,” says Nehemiah 4:6.

1 Peter 4:1 & 2 says, “Therefore, since Christ suffered in his body, arm yourselves also with the same attitude, because he who has suffered in his body is done with sin. As as result, he does not live the rest of his earthly life for evil human desires, but rather for the will of God.”

Done with sin? Isn’t this the one thing the Lord is most concerned with in our lives? He is working at preparing a church in which He can return that is done with sin. If this is part of the process that I must undergo in order for the Lord to prepare me for His return than I accept the rough edges, the closed doors, the loneliness, and disappointments.

What He is doing in my life He is also doing in the lives of my family. They must look to Him all the more when “building the wall” of their lives. So even if from the outside it looks like our home is “crumbled”, it is really only in a rebuilding process. A rebuilding that is according to the Lord’s architectural plans, not ours.

Barbara Blume lives with chronic fatigue syndrome (CFS) and fibromyalgia and various other related syndromes. She has suffered with this since age 12 but only as an adult did she receive a diagnosis. She is in her 50s and lives in New Jersey.

By Georgia Shaffer

Sara sat looking totally overwhelmed. At the age of thirty-five, she had learned she had breast cancer. “I feel like I just got hit by a Mack truck,” Sara said.

As a licensed psychologist in Pennsylvania and a cancer survivor who, 18 years ago, was given a 2 percent chance to be alive in 10 years, I know from personal experience cancer patients confront many challenges that we as counselors need to understand. The shock of the initial diagnosis is only one of the issues they face.

Challenge #1: Making Wise Choices When My Head’s Still Spinning

In spite of numbness and disbelief, within a short time Sara had to share her diagnosis with family and friends, grasp the latest research for her type of cancer, decide on her medical team, choose the treatment plan, and draw up legal documents such as a living will and a power of attorney.

It is during this emotionally draining time, people like Sara need someone to calmly (a non-anxious presence) help them sort through all they’re experiencing and to decide “what is it I need to deal with right now? What is the next step for me?” Encouraging clients to create a notebook or file system where they can manage all their medical information is another way to help them focus at a time when life seems out of control.

Challenge #2: Realizing the Relational Impact that Comes with Cancer

“Now that I have cancer, I don’t understand why some of my friends aren’t talking to me. Are they worried they will get it, too?” Sara asked.

Unfortunately, it isn’t unusual for people to avoid or distance themselves from those suffering. And many times those family and friends who don’t pull away ‘aren’t there’ in the way the cancer patient desires.

While some patients may be tempted to let their pain or unmet expectations isolate them, cancer needs a community of people. Some research has shown that those who participate in a support group can improve their quality of life and their survival rate.

Sara was able to find a faith-based support group that reminded her she wasn’t alone and provided a safe place to share how she really felt.

Challenge #3: Finding the Peace of God

“I’m so angry with God right now,” Sara said. “I’m embarrassed to be in church.”

Some people respond with anger and doubt as they wrestle with many unanswered questions. For others, the diagnosis of cancer drives them straight to the arms of God. They report experiencing God in a powerful, intimate way.

It’s important to allow our clients to work through all their feelings as they seek the peace that passes all understanding-a process for which there is no time frame. As one wise Christian friend reminded someone struggling with their faith, “You’re not losing your faith, you’re living it.”

Challenge #4: Being Sick and Tired of Being Sick and Tired

Being bald and weak with new symptoms popping up every few days can get old pretty quickly. The effects of the cancer treatments can be insidious. It isn’t one bad week that slowly erodes our physical, emotional and mental resources as much as it is month after month of dealing with the illness and other issues such as hassles with the insurance companies.

Sara needed her counselor to walk beside her during this desert experience as she grieved over the loss of things like her hair and her lifestyle. And she needed to be reminded that with God’s help she could not only “go” through this but she could “grow” through it as well.

Challenge #5: Understanding the End of Treatments is Not All Good

With the realization she would no longer be seeing the doctors or nurses each week and actively fighting the cancer with medical procedures, Sara discovered the emotions she had ignored while in survival mode now screamed for attention.

It’s usually at this point in the battle with cancer that people are more prone to anxiety, depression and even suicidal thoughts. They realize their life has forever changed. It’s also during this time that family, friends and co-workers begin to withdraw-no longer actively reaching out with calls, meals or support. As counselors, we need to remember that for the cancer survivors the end of treatment can mark the beginning of some real emotional struggles.

Challenge #6: Living with Uncertainty

What if they didn’t get it all? What if the cancer comes back? What if I’m too weak to work and support myself? These were just a few of the fears that haunted Sara each day.

Helping our clients consider how they will manage or what they will do if the cancer returns can actually empower them. When I was told I had a slim chance of seeing my then nine-year-old son graduate from high school I prayed for the best but I planned for the worst.

Challenge #7: Rebuilding while Redefining Normal

“I want my normal life back again but my whole world has changed,” Sara said.

Cancer survivors, regardless of the amount of time they have, often approach life with a whole new intensity and with clarity about what’s most important to them. As counselors, we can guide them toward a life of meaning and purpose as they accept and learn to appreciate the new normal.

“Cancer was never anything I would have chosen,” Sara said, “but in many ways the experience enriched my life.”

Georgia Shaffer, M.A. is a life coach, licensed psychologist in Pennsylvania and the author of A Gift of Mourning Glories: Restoring Your Life after Loss. As a professional speaker, Georgia’s audiences include oncology caregivers, cancer survivors and wellness groups. You can contact her at www.GeorgiaShaffer.com.

• Living with Breast Cancer: How They Did It (lifescript.com)
• Celebrities Sign on to Help Fight Breast Cancer
• How to Get Financial Help for Cancer Victims, finacial help with cancer billss
• Should You Exercise with Cancer? (healthmad.com)
• Cancer patients need compassion and balanced information (kevinmd.com)

“In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven.”(Matthew 5:16)

In having “silent” chronic illnesses, such as fibromyalgia and epilepsy, I have found some people do not understand the symptoms and feelings I experiencing, such as the deep muscle pain, fatigue or the fear constantly inside of me over when the next seizure would come. I wouldn’t tell anyone. I felt all alone in the world.

However, when I made the choice to change my attitude toward the illness, everything changed for the better. I prayed and lifted up my symptoms and paralyzing feelings to God. I was no longer embarrassed by not being able to do as much as other friends of mine could do.

If a friend asked if I wanted to go out that night, I simply said I could not do anymore for that day. When it was too cold out for me to go to a gathering, I would explain my muscle pain was acting up that day. When I was feeling fear due to a seizure, I shared it with one of my close friends. I left my friend’s reaction up to God.

What I noticed, to my relief, was that there was more understanding from them than I thought. When I explained my illness if they asked, they said that they also had a family member or friend with that disease. This would open the door to me helping them or their loved one cope with chronic illness. I had a chance to allow my light to shine for God’s glory.

Prayer: Dear Heavenly Father, thank You for turning all things, including “silent” symptoms and feelings to work together for good for Your glory.

About the Author:
Jodi Wheeler is a freelance Christian writer who resides in Tucson, Arizona. She enjoys writing articles and Bible studies for God’s glory. She desires to pass on the messages of hope and encouragement she has found in Christ. Christ is the one who not only gave her the ability to cope with the chronic illness, but pulled her through to the other side with a new strength and hope in Christ.

Related articles by Zemanta

• Glorifying God in Suffering of Illness and Pain (chronicillnesspaindevotionals.wordpress.com)
• Being There For Others When You Are Ill And Also The Caregiver (chronicillnesspaindevotionals.wordpress.com)
• Can Chronic Illness Be a Badge of Honor? (chronicillnesspaindevotionals.wordpress.com)

If you do not get the channel (many of us do not) you CAN watch it online LIVE (the actual TV channel airs on the internet, but the programs are NOT archived.)  You can read the original announcement about this program here, Founder of Christian Illness Ministry Appears on National Television Show and Lisa’s thoughts about taping A Peace in The Storm.

The episode with Lisa will be airing each day this week (schedule is below). In North America, LLBN can currently be seen via Glorystar Christian Satellite Channel 105, cable/​low and high power TV stations in select areas (Channel 17 on Loma Linda Time-Warner Cable), MOIPTV, and at www.llbn.tv.

We don’t have any technical tips. We found that it worked on 1 of our 3 computers. Make sure you have the most recent copy of player software installed (it will ask you if you want to update it.)

PEACE IN THE STORM BROADCAST SCHEDULE

DAY:        PST – MST -  CST  -  EST
Sunday:    2:00 PM – 3:00 PM -  4:00 PM – 5:00 PM
Monday:    10:00 AM – 11:00 AM – 12:00 PM – 1:00 PM
Tuesday:    8:00 PM – 9:00 PM – 10:00 PM – 11:00 PM
Wednesday:    3:00 PM – 4:00 PM – 5:00 PM – 6:00 PM
Thursday:    11:00 AM – 12:00 PM – 1:00 PM – 2:00 PM
Friday:    1:00 AM – 2:00 AM – 3:00 AM – 4:00 AM

Often, people sharing their story for this column prefer using a pseudonym in order to protect their child’s identity. Such was the case recently with 37-year-old “Sharon,” the birth mother of 12-year-old “John,” who was born with Down syndrome.

Down syndrome is caused by an embryo cell division that creates an extra No. 21 chromosome. It affects about 350,000 Americans and is the leading cause of intellectual disability.

Said Sharon in a telephone interview, “I was stunned during prenatal testing when we first learned (John) had Down syndrome. I didn’t quite know what having it meant and we didn’t know of anyone with it. But abortion never entered my mind. I told somebody in my family about (John having Down syndrome) and they said, ‘God must think you’re able to handle it. Whatever comes your way, you’re strong.’ That’s why I couldn’t (have an abortion). I knew (John) was going to be special.”

Today, John enjoys watching NASCAR, playing video games, and playing ball. He’s laid back, “fun and funny,” said Sharon, and friendly, “sweet,” and “charming.”

Sharon said, “In other words, he’s pretty much a normal boy going through preteen years. He loves to play Wii, and in order to get to play he’ll do just about anything, including cleaning his room, giving hugs, doing anything just to be able to play the game.”

At school, he gets along fine with classmates with disabilities, but sometimes feels a little intimidated by non-disabled peers. Sharon doesn’t exactly know why, but speculates that in some way John senses he’s different. Many of his classmates look out for him, though.

“I also have a daughter, who is younger,” said Sharon. “When pregnant with her, I asked the doctor about the possibility of her having Down syndrome, too. But really, it didn’t matter to me one way or the other.”

In ten years, Sharon and her husband would like John to have graduated from high school and have a good friend, and an enjoyable job and hobby. As for his health, except for an intestinal blockage in infancy, John hasn’t had anything exceptional to mention.

Sharon offered advice: “I’d tell a mother it’s going to be okay. Kids with Down syndrome are just like any other kid. There isn’t anything different other than their being special. Other people may see their disability, but that doesn’t mean you will.”

Contact danieljvance.com to read more of his columns about disabilities issues. Blue Valley Sod and Palmer Bus Service made this column possible.

Related articles by Zemanta

• How to Improve Down Syndrome Life Expectancy (autism-therapy.suite101.com)