Most would-be parents wish for a baby who is “healthy and happy.” Fortunately for most parents, that happens. For some parents, however, the baby may be happy but not healthy. Living with a child with a chronic illness can challenge a family’s patience and resources. As the parent of a 13-year-old who has been ill since his toddler days, let me offer you these 5 tips for caregiving for a chronically ill child.
1. Keep excellent records from your visits.
Computer outages happen. You may be asked by new specialists for the dates of past treatments and surgeries. Creating a timeline of symptoms may become valuable. For all of these reasons, it is vital to keep paper copies of your child’s medical records. Our family is on Binder #3 of medical information for my son. This binder has lab reports, diagnosis information, and visit notes. We can use it to provide copies to doctors or to look up information ourselves if needed. Good records will allow you to help doctors with accurate information.
2. Do your research beforehand.
Let’s be honest here. Who hasn’t used Dr. Google for a diagnosis? When a child is ill, it’s natural to look up information. In fact, doing research before going to appointments can be helpful. WebMD or just a basic Google search is a place to start but be careful of trusting this information. The National Institutes of Health and the Centers for Disease Control and Prevention are two excellent sources. Especially as you move to see specialists, read beforehand about what to expect at appointments.
3. Give your child a life as normal as possible.
As a parent, it is tempting to be overprotective of a child who is sick. As a child, it’s annoying. As my son has reached his teenage years, he has become less tolerant of me reminding him to drink enough water and asking him if he feels well. I have tried to answer that call and give my son as life as normal as possible. There are some activities that he cannot do, and he has to take more precautions for days out in the sun or long walks. Still, doing as much as possible that other kids do allows both the family to function better and the child to feel comfortable.
4. Guide your child to take more responsibility for medical information.
Children with chronic illnesses are not incapable of caring for themselves. Asthmatics can learn when to take their inhalers. Diabetics can learn how to monitor their blood sugar and determine how much insulin to take. For children like my son, who has an autonomic dysfunction disorder, they must learn to monitor their body temperatures and heart rates. As children age, they should get more of that responsibility. Teach them how to use oximeters or read ingredient labels or take medications. Of course, parents always should check behind them and give reminders, but the goal should be to prepare your child to be medically independent as much as possible.
5. Take time for yourself and your other relationships.
Children with ill siblings often report feeling left out because of family resources—both time and money—going to the sick sibling. While studies do not show higher divorce rates for couples with ill children, they do show higher rates of marital discord. Self-care is important, too! Even if you have to schedule it in on your calendar, make time to spend with your spouse. Take time to do something for yourself, whether it’s getting a massage or taking an afternoon for a coffee and reading. Make sure other siblings get to choose activities. Plan date nights—even if they have to be inside your house—to keep in connected to your spouse.
Living with a child with a chronically ill child can be a challenge, but it is possible! Take a deep breath and consider how to move forward best for everyone.