6 ways to find balance when juggling a health care journey
When a child has a chronic illness, there’s a lot to keep up with. Families may face challenges including significant financial and time investments, psychosocial and developmental aspects, organizational needs and medication management. We understand that this all comes in addition to the everyday responsibilities of parenthood and life.
Dena Wentz, LMSW is a social worker on our pediatric pulmonology team. She helps kids with cystic fibrosis and their families with day-to-day and ongoing management of their medical and other related needs. Dena shares some tips that can be helpful no matter what the health condition.
Balancing a chronic illness with knowledge and support
1. Feelings are key
Living with a chronic illness can come with many emotions, including highs and lows. Allow your child – and their siblings – to talk through how they’re feeling. It can be helpful to make a list of questions and concerns and share them with the medical team, especially if there is anxiety around new a treatment, medication or task that is needed. The team can provide information about what to expect.
Kids who can identify feelings are more likely to have good mental health, but it also helps to develop resilience. Your medical team’s psychologist or social worker can provide support or referrals as needed. Child life specialists can also offer age-appropriate explanations to help ease worries related to specific procedures and appointments.
2. Make sustaining daily care a priority
The best way to help keep flare-ups, exacerbations or unexpected issues at bay is to be vigilant about treatment adherence. This means keeping up with medications and appointments. We also know that sometimes you can do everything your doctor advises and there might still be setbacks. Avoid language that blames your child and engage with empathy or affirmations. This is really challenging for you. You feel really sad. You work so hard to stay healthy. I am sorry you have to go through this.
Accept that there will be a few misses and hiccups along the way. It’s ok to be honest with the health care team when you’re struggling to stay on top of everything. When you partner with your medical team, they can help you navigate challenges and make adjustments as needed.
3. Maintain routines and expectations
Kids thrive on routines. While chronic illness doesn’t always go according to plan, try to keep your family’s routine as consistent as possible. This includes bedtimes, wake times, meals, medications and other daily/weekly activities. As your child grows, they will be able to take on more responsibility, such as testing their own blood sugar, or knowing when it’s time for medicine.
Parents and kids can share the load. Provide your child expectations and habits for discipline. Not only do they help develop a sense of responsibility and accomplishment, but they afford structure and security as well. Provide room for building skills toward independence and increasing responsibility based on developmental needs.
4. Team up with the school
Keep the school informed about your child’s condition, including the school nurse, school counselor and teacher. Your medical team can provide documentation about medications, nutrition and other daily care so they can help make sure all your child’s needs are being met while in school.
This information will also be important in securing services through the school, such as physical, occupational or speech therapy – or in developing individualized education plans, if needed. If your child will miss school regularly, or for extended periods at a time, open communication will be helpful in allowing teachers to plan accordingly and keep them up to date on their work. Educational plans, such as IEP or 504 plans, help students have a successful school year and allow for equal opportunities as their peers, without penalties for having a medical need.
5. Seek support, accept help
Family, friends, neighbors, spiritual leaders and others throughout the community are often eager to help but don’t always know how. Don’t be afraid to take them up on an offer to provide a meal or run an errand. It’s okay to ask them to do something special with your other child(ren) to allow you to focus on medical appointments, or simply lend a listening ear when you need to chat.
It can also be helpful to find support groups or other children/families with similar diagnoses to share experiences and guidance. It’s not always easy, but finding a community of support helps.
6. Take care of yourself and each other
Each family is unique and only your family understands specifically what you’re going through. Look out for each other, offer love and support, and make time for fun. Providing kids simple choices, such as what’s for dinner or what board game they’d like to play for family game night, can make a big difference when so many things feel out of their control.
When unexpected situations arise, your child’s medical team can answer questions, offer guidance and connect you to community resources. You are not alone – we’re here to help!
Find more information and tips on a variety of health-related topics on our blog.