Erica Cahill from Illinois and Mary Jackson from Minnesota have never met. But they have at least one thing in common: They both have families coping with a child's chronic illness.
Erica's daughter, Grace, was diagnosed when she was 5 years old with childhood central nervous system vasculitis, an inflammatory disease of the brain's blood vessels. Physical effects of the disease can include seizures; severe headaches; difficulties with memory, behavior or cognition; and severe neurological deficits, including impaired vision, speech or movement abnormalities.
Mary Jackson's son, Michael, was diagnosed with spastic quadriplegic cerebral palsy shortly after birth and short bowel syndrome when he was 18, after a major medical event almost took his life. Michael has had more than 70 surgeries, has been on IV nutrition and tube feedings to maintain his nutrition and weight, and gets around using a power wheelchair.
Ten to 20 million children like Grace and Michael are living with chronic illness in the United States, according to the American Academy of Pediatrics. Chronic illness is a health condition that is either persistent or develops over time. Common examples include anemia, asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile arthritis, kidney disease and tooth decay. Chronic illness can be slow-moving and long-lasting and can lead to continuous or episodic periods of pain and incapacity, as well as other physical, emotional and social effects.
Grace's treatment plan has involved high-dose steroids, which caused her to gain 25 pounds, and chemotherapy, which put her at greater risk of infection and other side effects. Michael has had numerous complications from surgeries, including ischemic colitis and septic shock.
Chronic illness is life changing, and coping with it affects more than just the child who has been diagnosed; it impacts the entire family.
"There are very few worse things in life than being told your child has a life-threatening, chronic illness," Erica says. "It felt like in the blink of an eye our family's goals, dreams and priorities were forced to take different turns."
Erica had to go from full-time teaching to part-time, and Mary hasn't been able to work outside the home. Despite the challenges, both parents exude optimism and courage.
"You never know how strong you are until being strong is the only choice you have," Erica says.
With knowledge and help, Erica, Mary and their families have redefined "normal" to lead happy and fulfilling lives. You and your family can, too, with these 10 ways to cope with your child's chronic illness:
Proactively seek information to understand the illness and consider treatment and care options. Write down and ask your child's doctor questions, and search the Internet and library for reliable sources. A number of age-appropriate children's books related to chronic illness can help you explain things to your child simply, in terms they understand.
Get professional help from pediatricians, specialists and therapists to form a care team for your child. Get community help from family and friends.
"We don't want sympathy," Erica says, "but we are grateful for all the acts of kindness from family, friends, teachers and the community."
Get social help from support groups, national organizations and local hospitals, where you'll find others with similar experiences, so you know that you and your family aren't alone.
"It's okay to ask for help and admit you don't have all of the answers," says Jacquie Hart, global CEO of Starlight Children's Foundation, which is a nonprofit that partners with experts in healthcare, entertainment and technology to create a blend of family-centered services from hospital to home. "When you have normal, everyday challenges that are amplified by additional struggles of a child's chronic illness, it becomes infinitely more important to not feel isolated."
Erica joined Facebook after Grace was diagnosed with CNSV and has found a small cohort of parents from around the world whose kids also have the condition.
"We share our victories and challenges with this disease," Erica says. "Sometimes parents are overwhelmed, but that's just part of having a child with a chronic illness."
Mary also recognizes the value of community support in helping Michael.
"It has been so beneficial for him to connect with other teens and young adults that can relate to him," she says. "In recent years, he has enjoyed becoming a Community Leader in the Starbright World community and helping other members feel just as at home on Starbright World as he does."
Starbright World by Starlight Children's Foundation is an online social network for young adults, ages 13 to 20, with chronic and life-threatening medical conditions and their siblings. Moderated and available 24/7/365, children can connect with peers, trained medical experts and celebrities.
Create and follow a plan of action for treatment and care. Prepare a medical summary and emergency care plan, and make decisions on legal issues, guardianship and transferring care. Set short-term, realistic goals.
"We have to carefully coordinate schedules around Grace's appointments and periods of good health," Erica says. "And since this disease and other chronic illnesses are so unpredictable, you need a backup plan for everything. What do you do if she gets sick at school? What if you need more time off from work for her appointments and treatments?"
Listen to your child, verbally and nonverbally, and help him constructively express his emotions. Be open, honest, available and supportive.
"Don't ever be afraid to advocate and stand up to doctors about your child's medical condition," Erica says.
Consider your child's age, maturity and development to judge how appropriate it is to share information with her, involve her in decision-making and health management, and what social activities she's able to do. Teach your child to manage her own condition and be her own advocate with her healthcare and education.
Keep perspective and manage elements in your life you can control, such as your own emotions and stress, and let go of unnecessary obligations. Encourage self-management and independence for your child, and help him make decisions, especially ones he can control, such as which arm to draw blood from or what date to have surgery.
Don't forget to be a parent. Maintain structure, discipline and daily family routines to normalize the whole family. Offer praise and encouragement without being overly protective or permissive.
- Find time for yourself. "Build respite and relaxation into your schedule," Jacquie says. "As a parent, you need your own time to provide the best care for your kids."
- Help your child find things he enjoys by emphasizing his strengths and encouraging him to try new things. "Michael has always had his sense of humor and gift of gab," Mary says. "He has been a well-adjusted kid, and we encourage him to participate in as many things as possible." Michael has been a student senator at his school for two years and a freshman orientation and welcome week leader for three years.
- Participate in family activities. "Celebrate milestones for the whole family to enjoy," Jacquie says. "You're all on the same journey, just in different seats."
- Schedule one-on-one time for your child with other children. "Our first priority is that Grace can enjoy childhood just like her other peers in light of living with a chronic disease," Erica says. "We want Grace to one day understand her own illness, but know that she is more than just her diagnosis." Grace enjoys Irish dancing, swimming and reading books, thanks to her first-grade teacher.
Be willing to make lifestyle changes and be patient—change takes time. "We try and live the best days we can, every day," Erica says.
Continue to check in and assess your child's illness, as well as her emotional and social health. Make sure she understands her illness and fill in missing information, correct misunderstandings and add personal responsibilities as appropriate. Keep informed of the latest treatment and care options, and recognize changing physical, emotional and social needs.
By actively coping with your child's chronic illness, you can improve your family's quality of life while minimizing the negative impacts and affects of the condition. You can also help your child have more positive outcomes, such as reduced pain, better recovery from symptoms, improved quality of care and physical function, and ultimately, feelings of peace.