Parenting a Chronically Ill Child

I’m sitting in the hospital with my son right now. It’s become routine for us over the last six months. We know the names of the doctors, nurses and porters in the Pediatric Medical Day Unit, and they know us. They know my son’s preference for his IV in his left hand, and that he likes gingerale. I know that one of the porters has a similar tattoo to my husband and one of the nurses loves Disney World as much as we do. There are amazing Child Life Specialists here who support the kids through rough procedures. Kellen’s child life specialist brings in things to entertain him and help him stay calm while he gets his IV, and she does a great job of making an unpleasant situation not quite so bad.

There are a lot of things to deal with when you have a child who is ill, and I’ve discovered some ways to make life a little easier. Here are some suggestions from a newbie Mom of a chronically ill child:

• Tell people what you need. It’s hard to ask for help, but there are always many people ready to help if they just know what you need.
• Write everything down. I thought I would remember everything but there’s so much to take in that I found myself forgetting the details. I now have a notebook just for my son where I write down all of the information from every appointment.
• Take pictures. Photos are a great way to track your child’s health. While Kellen is still not in remission, I can look at these photos and see how far he has come.

• Make sure he knows that his illness does not define him. He is the same person as he was before, with a new story to tell.
• Keep the family, teachers and friends informed on what is going on. When my son was at his sickest, he was off school for six weeks and I had no idea that there were so many rumours going on until a parent called me to ask about him. Kids have big imaginations and worry about their friends, so it’s nice to keep them informed.
• Listen to your child’s concerns. Kellen is only ten years old and he told me today he doesn’t know how he will ever have a job because he has to spend so much time in the washroom. It’s a valid concern, but it hadn’t occurred to me that he was thinking that far ahead. It lead to a discussion about coping strategies and how other people we know have managed to work with IBD.
• Be strong, but not a robot. It’s okay to let your guard down and even let your child see that all of this gets to you too, but remember it is ultimately about him and when he needs you, you put on your brave face and be there for him.
• Let him have his meltdowns. There are times when your child doesn’t know how to cope anymore, so he has a meltdown. It may be about a favourite toy being out of place or a missing sock, but it’s more likely about a loss of control in his life and sometimes you just have to let him fall apart.
• Be his best advocate. You know your child best, so speak up and tell medical staff what he needs and how it is best to deal with him.
• Expect the unexpected. No, this isn’t Big Brother but things do change quickly when you are dealing with a chronic illness. A two hour test can turn into a week long hospital stay. A simple procedure can turn out to be challenging. Plans will have to be changed due to changes in his health and housework will be set aside while you take care of his needs. This is hard for me. I like to plan things and once we head down the path of uncertainty, I get a little out of sorts. I am learning though!