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.
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, Instagram, Twitter, Pinterest, 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.
Chronic Illness
Chronic Illness affects 42% of children, Approximately 32 million children (aged 0-17 years) in the US.
29 % have two or more chronic conditions.
About 25% of children in the US aged 2 to 8 years have a chronic health condition.
Approximately 50% of people affected by rare disease are children.
30% of children with rare disease don’t see their fifth birthday.
Mental Illness
Almost 50% of teens in the US have a mental disorder.
Mental illness globally impacts 16 % of adolescents aged 10-19 years.
1 in 6 U.S. children aged 2-8 years (17.4%) are diagnosed with a mental, behavioral, or developmental disorder.
Globally, depression is one of the leading causes of illness and disability among adolescents.
Suicide is the third leading cause of death of young people aged 15–19 years.
50% of all chronic mental illness begins by age 14 and 75% by age 24.
Almost half of adolescents with mental health issues do not receive any mental health services.
Click here for detailed statistics.
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).
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, what it means to weep, worship, wait, and hope in the Lord. This book will help you cling to Jesus and fight for joy when faced with a life you never expected.
The Blessing: Giving the Gift of Unconditional Love and Acceptance
Gary Smalley and John Trent
Children of every age long for the gift of “the blessing” — the unconditional love and approval that come from a healthy relationship with their parents. This life-changing gift is essential for instilling a deep sense of self-worth and unshakable emotional well-being. Offering solid, practical advice and a fresh perspective on making this gift a bigger part of our families.
A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children
Jolene Philo
The devotional meditations in this book address the spiritual needs of parents of chronically ill children 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
My Child’s Mystery Illness
My Son's Medical Mystery One month after my son, William’s sixteenth birthday, he lay in the pediatric intensive care unit, unconscious. The attending physician said his condition was grave. “If you and your husband are praying people, I advise you to do so. He’ll likely not live...
A Story of Hope – Sam Re
SUFFERING PRODUCES PERSEVERANCE The phone rang. It was 3am. “Hello?” “Mom,” my son Sam said so quietly I almost couldn’t hear him, “can you come get me?” Eight months earlier, Sam had walked across the stage in cap and gown, head held high, a smile playing at the edges of his lips...
Ready for Spring: Learning to Release What Was to Embrace What Is
I was sitting at a table, laptop open, poetry books, hot tea, notebook, and pen spread before me when I saw it, a bright green dot of light dancing at my feet. Half a lobby away sat my son, laser pointer in hand, chuckling. Minutes later, he crossed the lobby, plunked himself in the chair...
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
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
KEY MINISTRY is uniquely called and positioned to serve churches seeking to become more intentional and effective in ministry with children, teens, and adults impacted by mental illness, trauma, and developmental disabilities and their families, and to connect families to the people and resources – both in person and online – that they need to support them in their special needs parenting journey.
ONLY 7 SECONDS – Remember 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