Parenting Children with Chronic Illness

Raising a child with chronic illness – a blessing in disguise.

Parenting a child with chronic illness requires more strength, resolve, perseverance and courage than we likely ever dreamed possible, yet it also blesses us with the gifts of compassion, perspective, presence, and profound love as we are daily drawn closer to Christ.

Did You Know?

Chronic Joy Ministry offers awareness materials for chronic illness, which highlight the significant impact of illness on every aspect of life – parenting, marriage, family, faith, finances, friendships, education, hobbies and work.

FREE printable Chronic Illness Awareness Fact Sheet creates awareness, grows knowledge and supports education in a quick and easy format with those in your sphere of influence – friends, family, churches, small group communities, co-workers and neighbors.

The DID YOU KNOW? Awareness Campaign features images posted across our social media platforms – Facebook, InstagramTwitterPinterest, and even Linkedin. LIKE or FOLLOW Chronic Joy to see us in your feed, then like and share the images to increase awareness.

Begin the conversation with the question, DID YOU KNOW?

And you will be changing the landscape for children affected by chronic physical and/or mental illness.

Because the statistics show that either you or someone you love is affected by chronic illness – far more people than most realize.

Together, as we raise awareness, increase knowledge, and utilize educational materials tailored for all who are affected by chronic  illness reminding each other and ourselves that while chronic illness is hard, there is hope.

There is always hope.

DID YOU KNOW?

 

Chronic Illness

Logo Bullet Chronic Illness affects 42% of children1, Approximately 32 million children (aged 0-17 years) in the US.2

Magenta Bullet 29 % have two or more chronic conditions.1
Magenta Bullet About 25% of children in the US aged 2 to 8 years have a chronic health condition.3

Logo Bullet Approximately 50% of people affected by rare disease are children.4

Logo Bullet 30% of children with rare disease don’t see their fifth birthday.4 

 

Mental Illness

Logo Bullet Almost 50% of teens in the US have a mental disorder. 5

Logo Bullet Mental illness globally impacts 16 % of adolescents aged 10-19 years. 6

Logo Bullet 1 in 6 U.S. children aged 2-8 years (17.4%) are diagnosed with a mental, behavioral, or developmental disorder.7

Logo Bullet Globally, depression is one of the leading causes of illness and disability among adolescents. 4

Logo Bullet Suicide is the third leading cause of death of young people aged 15–19 years. 6, 8

Logo Bullet 50% of all chronic mental illness begins by age 14 and 75% by age 24. 7

Logo Bullet Almost half of adolescents with mental health issues do not receive any mental health services.9

Click here for detailed statistics. 

Prayer for Parents

Chronic illness is hard. Often finding and/or being a part of a community as a parent of a child with chronic illness can be even more challenging. 
 
You’re invited to the Chronic Joy Prayer Pond, a community rippling with radical hope and compassionate change. A place where you can share your prayer requests, updates, and shouts of praise. Whether a request, praise, lament, suffering, loss, hope, grief, or joy, each prayer ripples far beyond this day and the boundaries of our world.
 
How often we hear, “Prayer is the least I can do,” when in reality, prayer is the most we can do. 

Featured Books

Comfort: Inspirations for Parents of Chronically Ill Children,

Kathy Hardy

This sensitive, honest, and heartfelt devotional doesn’t pull any punches. It encounters all aspects of raising a chronically ill child and helps others understand the day-to-day struggles and joys. It is eight weeks of reality: the good, the bad, and the ugly. At the end of each week of devotions, you’ll find a short chapter of Kathy’s family’s continuing story of raising their eight children, three of whom have Cystic Fibrosis (CF). This book will touch you. It will make you laugh, cry, and feel less alone. You will feel understood and know that your journey is shared by others who experience similar emotions. You can give this book to family members and friends whom you feel lack understanding of your family’s dynamics. You will feel comforted to know that God and others walk this difficult path along with you.

The Life We Never Expected: Hopeful Reflections on the Challenges of Parenting Children with Special Needs

Andrew Wilson, et al.

Sometimes life throws you a curveball. Andrew and Rachel Wilson know what it means to live a life they never expected. As the parents of two children with special needs, their story mingles deep pain with deep joy in unexpected places. With raw honesty, they share about the challenges they face on a daily basis—all the while teaching what it means to weep, worship, wait, and hope in the Lord. Offering encouragement rooted in God’s Word, this book will help you cling to Jesus and fight for joy when faced with a life you never expected.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs

Jolene Philo 

Parenting can be difficult and tiring, especially when you have a special needs child with medical, behavioral, or educational issues. In Different Dream Parenting, author Jolene Philo offers guidance and encouragement through biblical insights and her own personal experiences. Find spiritual wisdom, practical resources, and tools that can help you become an extraordinary advocate for your child. Discover how you can move beyond the challenges and experience the joy of being your child’s biggest and best supporter.

A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children

Jolene Philo 

For years, Jolene Philo’s son was hospitalized many times as he battled a life-threatening birth defect. Far from home, without friends and family to support them, Jolene and her husband felt utterly and completely alone. Today, support networks for parents of critically or chronically ill children have improved, but most only provide for urgent physical needs. The devotional meditations in this book address the spiritual needs of these parents as the author shares her own life lessons, as well as those of other parents who have walked this road. No matter how difficult the road, Philo says, you do not have to lose hope.

Blog Posts

When a Kiss Can’t Make It Better

    Walking Through Your Child’s Chronic Illness with Hope   “Mom, my back hurts,” my 11-year-old Anna complained. “Did anything happen to cause the pain?” I asked. “No,” she said. Time went on and things seemed to be fine again, so I didn’t think twice about it. But then “my back...

Christmas Cinnamon Rolls – Dairy Free

For many people, Christmas is a time of year where reminiscences of food often come to mind. It might be baking and decorating sugar cookie cut-outs, the smell of roasted ham filling the house before Christmas dinner, fresh peeled oranges squirting everywhere on the first bite, or maybe it’s...

Cinnamon Rolls

12 Pillars of Faith for Parents of Children with Disabilities

Theology of DisabilityThe society we live in expects life to be trouble-free; there is an assumption that we somehow have a right to an easy life. This mindset is reflected in the answer to a typical question. “What is the number one question an expectant parent is asked? ‘Are you hoping for a...

"Believers need a theology of disability that both glorifies the Creator and honors the incredible value of every human life." Dr. Paul Tautges

Resources

ARTICLES

To Those Caring for Sick Children, Lexi Behrndt

You are heroes. You are angels. You get to see miracles happen daily at your job. You get to see little lives come back after catastrophe and devastation, and you watch as they heal and grow and smile again.

And then sometimes you don’t.”

To the Momma of a Critically and Chronically Ill Child, Lexi Behrndt

“You are brave. You are strong. You are loving. You fight for your children when they can’t fight for themselves. You hope for them and you stay positive for them, and then run to the bathroom just to cry in the stall where they can’t see. You research and talk to doctors and talk to other parents to find the best possible treatment plans and solutions to give the best life to your child…You go to the places no one wants to go. You know a side of the world that most would like to pretend doesn’t exist.”

Parenting Through Chronic Illness, Rachelle Wiggins

“For the past decade, God has allowed me the gracious trial of raising my children from the bed of chronic illness.  The learning curve was steep: I battled against the desire to be more and do more while living within the limitations of a broken body. Over time, I recognized a few principles that helped me survive — and still be a good parent — during the storm of ongoing illness.”

VIDEO

Children are a gift from God.Welcome to Holland, Emily Perl Kingsly

Trying to describe being the parent of a child with a disability or chronic illness can be very challenging. This short video offers a beautiful and creative explanation.

“The loss of that dream [a well child] is a very significant loss, but if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

 

 

WEBSITES

ONLY 7 SECONDS

Only 7 SecondsRemember that time when you felt like disappearing and were sure no one would even notice? That moment was real. So real, that millions are experiencing the same moments of hopelessness in their daily lives. Your story is important. Isolation, depression and anxiety are real, and they have a bigger effect on our lives than we realize. It only takes seven seconds. Send one simple message. You could impact a life, forever.

When Kristin Wall’s son, Ethan, was bedridden for twenty-three days, he missed a lot more than school and the regional basketball championships. Over the course of his illness not one friend or teammate reached out to him, and as Kristin observed, that had a devastating impact on her son’s mental state. “I watched him go into depression,” she said. “These boys are boys I’ve fed and treated like sons for years… and not a single text came through.” 

“Because of everything my family went through with my son and what our small town had faced, I felt led to create a movement called #only7seconds.” The goal of the movement was simple: spread kindness through thoughtfulness. “Take seven seconds out of your day to send a text telling someone that you are thinking of them.” To Kristin, this simple thought meant everything. “You never know if that text could be the one thing giving them an inkling that life is worth living.”

 

Even More

GRIT - STRENGTH OF CHARACTER

“In order to cultivate gratitude in kids who are sick, the focus must be on allowing them to tell their own #story, creating a safe space for them to share, and creating opportunities to highlight the blessings and strengths around them.” DiggingDeep.org

MY CHILDREN'S PAIN

“There is a purpose to suffering,” says Timothy Keller, “and if faced rightly, it can drive us like a nail deep into the love of God and into more stability and spiritual power than you can imagine.”

CHILDREN COMMUTE BETWEEN WORLDS

“Children living with illness inhabit two worlds: the medical world and the wider world of “normal.” Most of the time children ‘commute’ between these worlds, an extraordinary challenge.”  DiggingDeep.org

INTERVIEWS

SHARING LIFE, DISCOVERING HOPE AND A FEW FUNNY MOMENTS

by Diane Bailey | The Consilium Lakeside

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