How to Cope with a Sickly Child
Upon finding out that you’re pregnant your mind races with the possibilities. A son? A daughter? What if they like the things you like and you can do them together? What if they don’t? What should you name your baby? Who will take on what new responsibilities? Sleepless nights, new budgetary concerns, and everything else can add up to a lot of unknowns. One thing people often fail to consider though is what will change if their child is diagnosed with a chronic illness or even just falls ill often?
The old refrain of “as long as they are healthy” seems a bit cruel when you have a sickly child. Whether it’s a chronic illness or just a smattering of infections that come one after the other it can feel hopeless and lonely taking care of a child who is sick more often than they are well. Guilt and pain are a daily struggle and exhaustion are ever present. When it seems like things will never be “normal” again, how do you cope?
Adjusting to the new normal
When your child is diagnosed with a chronic illness it’s completely normal to go through a grieving period. Questions about how their life will be can bring about all kinds of emotions, especially if the answers aren’t immediately available. Learning to live in a new normal of medications and doctor’s appointments and restrictions can be overwhelming at first, and it’s common to become anxious or even sad.
Coming to terms with the situation is best achieved by giving yourself room to process these feelings and then looking for comfort in new routines and finding the good that is still there. Focus on what your child can do, and you’ll find many things to be joyous about.
Enlist your partner to help make out a schedule and routine for medications and other treatments. Having a framework for what to expect and plans to deal with eventualities can help your anxiety a ton.
If you have other children don’t forget to put time with them on the schedule. It’s easy for a crisis to take over the family’s attention but when your child is chronically ill you’ll have to make some adjustments to make sure everyone gets a fair shake at a quality time.
Educating others
You’ll soon become an expert on your child’s condition and it’s important that you don’t keep that knowledge to yourself. Anyone caring for your child will need to know the do’s and don’ts so start thinking about the most important information you can pass along and get it written down for babysitters, grandparents, and other caregivers.
The information should include the doctor’s phone number, what medications they are on, when they are taken, and how to recognize a problem. Knowing the signs of trouble and when to act will help others feel more comfortable helping care for your child.
Reaching out
No matter the diagnosis there is probably already a support group, national organization, and other resources for parents to learn more, make friends in the same boat and become better equipped to advocate for their child.
You’ll want to know the laws protecting your child’s rights for when they enter school, but also tips and tricks from parents that have been where you are right now. You may be able to find a local support group through the national organization, or you can find them on the web with a quick search.
Remember that every child is different, and to be wary of people selling cures for the incurable or treatments that you haven’t discussed with your doctor. While they may mean well, it’s important to keep your child on the path their doctor has laid out. Only you and your pediatrician or other health care provider can know the exact specifics of your child’s case.
It’s important to have a bird’s eye view of the treatment plan and to know what steps are next. Ask questions of your doctor about what the prognosis is, and make sure you have your legal papers in order to continue care of your child should something happen to you. Having a specific game plan can be helpful to anyone who needs to assume care either temporarily or permanently depending on the circumstances.
Finding time for yourself
Self-care becomes more important than ever when you are the caregiver for someone with chronic illness. Respite is important to try to make sure you get enough time for yourself to recharge. Whether it’s setting aside a few hours daily to do a hobby or to take a long bath or getting someone to watch over your child for a weekend, it’s important to plan ahead.
Don’t just assume you’ll have time later, be purposeful. Sometimes it can feel selfish to take time for yourself like this, but it’s important for your child to have your best you. Try not to over commit. Your child should come first, and your well being should be next. Don’t put yourself at the bottom of the list even if that’s been your habit before.
You’re not truly obligated to do much so bow out of activities that are eating up your time and making your life harder, people will understand.
Learning the limits
In general, your doctor should be able to prepare you for what to expect from your child regarding developmental milestones, ability to tolerate activities and what to pay attention to and notice to see if you’re pushing too hard. However, since each child is different you’ll want to inform your expectations based on what you know of your child. A blending of these two approaches provides the best results.
Your limits may be stretched as well and it’s important that you monitor your stress levels as well to make sure you’re not getting burned out. Make sure you are eating right, getting enough rest, and coping well emotionally. Don’t be afraid to ask for help in these areas if you notice things slipping away.
