Motivating yourself and pushing through the pain – these are things that we may have figured out in managing our own chronic illness. But what do you do when your child has a chronic illness? Parenting takes on a whole new dynamic when managing the needs of child who has multiple doctor appointments and a list of medications that may be longer than your own.
Take heart in the fact that you fully know how frustrated your child feels, as you have walked this path. Maybe your illness did not come until later in life, but the strategies you have learned to regulate your own condition will be essential to your son or daughter.
Here are 6 tips to help you manage when your child has a chronic illness:
- Keep a file folder or some type of system with all of your child’s test results, doctor’s information, any notes from visits and lists of medications. Yes, the doctors will have your records, but you will quickly find that when you’re navigating a chronic illness and sometimes need to see multiple doctors, the system of sharing medical records is not always seamless. You are entitled to your child’s records – request them at each visit. If the office staff tells you they cannot provide them to you, ask for the office manager. You will thank yourself later when you’re able to present a folder of all pertinent medical info to a new doctor.
- Find a support system outside of your immediate family. If you’re able to find one for both you and your child, that’s even better! You’re walking a very unique path in parenting. When so many other moms are worried about whether their daughter makes the dance team or what grades their son is getting, you have that and more. Some children won’t be able to attend school regularly. Many people don’t understand how someone can feel better one day and not the next. It’s just not their reality. You need to surround yourself with people who understand and empathize. Find other mothers who know exactly what you’re going through and lean on one another.
- Be a cheerleader for your kid. Celebrate every little accomplishment. After being stuck in bed for days, today they got up and made it to the couch. Celebrate it! No, they didn’t put in a full day at school, but they got in for the last period of the day. Acknowledge and celebrate the incredible effort it took to take that step.
- Help them find a hobby. Maybe they used to spend their days on the soccer field and now they’re not able to exert that much energy. Explore different options. Perhaps they would enjoy art lessons, painting, jewelry making, or even knitting! Find an activity that they can do within their limitations, and build on that. This helps to keep them distracted and feel like they are making progress with how they feel. And while we’re on that subject, find a hobby for yourself for the very same reason!
- Make sure you practice self-care. It’s easy to get caught up in the day-to-day caretaking that your child needs and end up neglecting your own needs. Follow through with your scheduled doctor’s appointments. Make sure you’re eating healthy food and sleeping a normal schedule. Remember, if you can’t function, you can’t take care of anyone else either.
- Become an expert on your child’s condition. Almost every chronic illness that you can think of has a foundation or organization to raise awareness. Join it. Read up on the condition from trusted sources. Ask your doctor for information or trusted sources to find more information about it.
Parenting a child with a chronic illness definitely presents challenges, but following these tips will help. Remember you are not alone. There are many other parents in your same situation. Reach out, get the support you need, and know that you can get through this!