Having a child diagnosed with a chronic illness can be overwhelming and stressful for parents. You may feel a whirlwind of emotions - sadness, anxiety, anger, guilt. It's important to allow yourself to process these feelings. With time and support, many families adjust to the 'new normal' of living with a chronic condition. Here's what you may expect as a parent.
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Medical Care
Caring for a chronically ill child often means frequent doctor visits, hospital stays, tests, treatments and medications. You'll need to learn about your child's illness, track symptoms, give medications, communicate with healthcare providers and manage insurance/bills. Having a binder or app to organize medical info is helpful. Be an advocate for your child, but don't be afraid to ask for help navigating the medical system.
Be sure to make use of all the services available to make yours and your child’s life easier. Things like medical transportation take a lot of the stress away. For example, if your child needs to travel to a rehabilitation center in a different state, a flying nurse can make the journey safer and more comfortable. You can contact Flying Angels to learn more.
Lifestyle Changes
Your family's routine will likely need adjustments to accommodate your child's needs. This may include dietary changes, activity limitations, physical/learning aids (hearing aids, wheelchair, tutor), therapy and daily medication or treatments. Discuss with your child's doctor and teachers to find adaptations that allow your child to participate as fully as possible.
Siblings
Healthy siblings often worry their ill brother or sister might die. They may feel jealous of the attention given to the sick child or resent the limitations placed on the family. Make time for your other children and teach them about their sibling's illness. Consider counseling to help them cope.
Finances
Even with insurance, there are often significant out-of-pocket costs for things like medications, equipment and therapy. Look into financial assistance programs and Medicaid/CHIP. Talk to a social worker at the hospital/clinic for help. Budget carefully and seek support if you are struggling.
School
Missing school for appointments/illness can cause children to fall behind academically and socially. Talk to teachers about modifications or an IEP to accommodate your child's needs. Homebound instruction or online school may help kids keep up.
Your Mental Health
It's draining managing medical needs round-the-clock. Make time for self-care. Join a support group to connect with other parents who understand. Seek counseling if you are experiencing anxiety, depression or burnout. Speak up if you need practical or emotional support.
Finding Joy
Don't lose sight of the fun of being a family. Make happy memories during hospital stays. Celebrate every accomplishment. Enjoy your child as a person separate from illness. Laugh together often. Focus on the positive when you can.
Over time, the new routines will start to feel familiar. You'll grow more confident caring for your child's condition. Rely on social support, communicate with your child, and work closely with the healthcare team. Keep the bigger picture in mind - with your love and care, your child can still live a happy, meaningful life.