Combating and coping with a child’s chronic illness is one of the most difficult jobs any parent will ever have to face. Your emotions, energy, and ability to function on a daily basis are all strained and under a constant state of duress. At the same time, you must present a stoic and upbeat outer appearance and attitude for your family and, especially, your ailing child. It is a daunting task, to say the least, yet one that is met with strength and love. And one which requires assistance and guidance, often daily. Luckily, you’re not alone in this fight.
Understand Your Own Emotions
For many, the news of a child’s ailments will send them into a tailspin of thoughts and emotions, which can last quite a while for some. For others, bottling it all up sounds like the only way to survive. The truth is, everyone will express their emotions the way their own mind dictates. There is no right or wrong emotion. And, when it’s time to act and react to a diagnosis, some will inherently know what to do, while others will face a great obstacle at its mercy. Just like emotions, though, you aren’t wrong if you don’t know what to do. Asking for help is so important, even for the most equipped parents. You’ll never be too prepared, too experienced, or too practiced to not need some help. It is a fundamental trademark of a healthy society to help one another and will be a cornerstone in the building of a strong foundation of support.
Find Your Tribe
Research and join support groups, forums, and other networks of parents and health professionals who have experience or are experiencing these same health issues with their child and or patients. With the advent and popularity of social media, there are so many more accessible methods for connecting with those akin to your situation. Finding individuals and groups who inherently understand your situation will give you an outlet to discuss, question, and even vent about your daily struggles and triumphs. A simple keyword search can reveal so many helpful and informative links.
Research your child’s illness and regularly inquire about new treatments and medicines in development and entering the medical landscape. Databases for medical information, particularly pediatrics, can be valuable troves of constantly updating information. The research and information searches help many keep their minds active and focused, instead of wandering and lost. The following are a few examples which may be of great assistance or will help spark even more research.
- JAMA Network
- American Academy of Pediatrics
- Michigan Medicine
- Centers for Disease Control and Prevention
- Healthy Children
- American Psychological Association
Whether your child has cancer, an autoimmune disorder, potentially life-threatening allergies, serious asthma, or something else, chances are there are typical childhood experiences they are missing out on. You might not be able to really go camping at this point, but you might be able to set up a tent in your living room, pull out flashlights and sleeping bags, and toast marshmallows over a candle. If building a real snowman isn’t possible, see if you can fashion one out of styrofoam balls, play dough, pillows, or something else.
It takes a village to raise a typical child, but you need a full-blown army to raise a child with chronic illness. If you’ve been trying to manage everything on your own, we have one word of advice: Don’t. Your friends and family may be more willing to help than you realize. Especially if you have more than one child, leaning on your support network can help siblings find normalcy away from doctors and hospitals. When your child with a chronic illness is hospitalized, it’s natural to want to be there every moment. But it’s important to let someone else do a shift now and then so you can take a shower or get a nap. Your entire family will benefit if you let friends and family lighten the load.
Don’t Feel Guilty About “Me” Time
You have a huge responsibility to your child, but you also need balance. As much as possible, make time for your life and the lives of the rest of your family. Set timers, create calendars, and organize events, such as doctor’s appointments, on regular schedules as much as possible in order to leave time for the intangibles.
Empower Your Child
Children with chronic illnesses are often poked, prodded, and talked about as if they aren’t in the room. As much as possible, it’s important to empower your child and treat them as a partner in this mission of wellness. Talk to them and help them to understand what is happening to them. Support them by asking questions and listening to their thoughts and feelings. Conversations and a constant open forum of information will help ease some of the anxiety you are both feeling.
Childhood chronic illnesses are difficult and heart-wrenching for all involved. Finding the right answers won’t often come easy, but there is hope. Remember to continue to live some sort of normal life, whenever possible, but understand that things won’t be the same, either. With help, though, you can find light and gain the confidence and know how to make the best possible choices for you and your child.