Creating a Fulfilling Life for Your Chronically Ill Child

I’m delighted to share this guest post by Wendy Kahn. She is the mother of a chronically ill teenager. Her son’s multiple conditions make him a bit of a “medical mystery.” Dealing with this for many years, Wendy has learned creative ways to deal with daily life, solve problems, and create a little normalcy — while never giving up hope. She shares her experiences and thoughts at BrewingMoreHope.com. Here is her piece:

When children feel healthy, there are so many activities and events they can plan or attend. However, if they are chronically ill and can’t count on their bodies from day-to-day or even moment-to-moment, it’s a whole different world, with a new set of rules.

The thought of missing out makes my son feel so sad. He desperately wants to be like the other teenagers he sees — to be able to do the things they can do. However, no matter how much planning we do, his body simply does not always cooperate. Every day, there are times when he is tired, dizzy, or in discomfort — with some days better than others. As a mom, all I want is for him to experience life fully — hang out with friends, take a walk in the park, watch his favorite music group. I want him to experience life just like everyone else does.

So, I have asked myself many times: “How do I help create and provide life experiences for my chronically ill son who has to miss out so often?” “How can I help and support him so he can experience small joys and activities when he is so often limited by his own body?”

How??

Over the years, I’ve learned to start by finding activities he can experience in very small increments; what I call bite-size moments. These moments become doable because they are tailored to him and based on his specific needs. Although this involves a lot of work on my part, I know it’s worth the effort as soon as I see my son’s eyes light up when it happens. The only thing he has to do is agree to participate!

So how do I select a bite-size moment?

I choose an activity that fits a set of guidelines that work best given my son’s limitations.

Our seven guidelines include:

1. The amount of time spent at the activity is not important.
2. If you need to be later than a scheduled start time, that’s okay.
3. If you need to leave early from the scheduled end time, that’s okay.
4. Breaks can be taken, if needed, meaning you can leave for a moment.
5. Food/drink can be brought along or purchased. (Nutrition/hydration is highly important for him.)
6. If the entire family is going, we can take separate cars. That way, everyone has flexibility to arrive and leave when they want or need to.
7. For guidelines 1–6, embarrassment is not an option.

The hardest guideline to follow is probably Guideline #7, “Embarrassment is not an option.” It takes family discussion and understanding. To be truthful, it did not come easily for my family members. Everyone has to come to their own acceptance, and that takes time.

We have found that embracing these guidelines provides my child with a way to participate in life in a way in which he feels comfortable and safe.

Here’s an example of an activity that led to a successful bite-size moment:

A friend of ours was playing in a band at a local restaurant and my son really wanted to go.

· I packed a snack and drink for the 25 minute car ride each way. (See guideline #5)

· We planned on leaving our house at 7:00 pm. However, at 7:00, our son decided he needed to rest for 15 minutes before leaving. Of course, we said, “no problem.” (See guideline #2)

· At the restaurant, the band was playing outside in a large, tree-lined courtyard. We found a table in the back so we wouldn’t disturb anyone if we left early. (See guideline #7)

· He thoroughly enjoyed listening to the music, but only lasted about an hour before telling us he needed to go because he was tired. As promised, that was just fine with us. (See guidelines #1 and #3)

The music was lively and loud. During the band’s break, our son even got to speak briefly with the band members.

When we got home that night, his eyes, although tired, were gleaming! He was so excited to have gone somewhere new and to have been able to see and hear a music group that he enjoyed so much.

The bite-size moment was all worth it!

An important factor in creating these moments is trust. There has to be a level of trust between you and your child. The child needs to trust that you will listen to them if they need to leave an activity early and that you will not be angry or blame them. They need to know that you will not push them to do more than their body is capable of.

Bite-size moments can be going to the bookstore, doing homework at the local coffee shop, going to a musical and leaving at intermission, attending a baseball game for the first few innings, or simply watching a sunrise or sunset.

Many people don’t understand this kind of thinking — where you don’t stay for an entire event or activity. (After all, you may have paid for it and/or spent valuable time planning.)

But when you have a chronically ill child… finishing is not the ultimate goal. Experiencing is…

Disclaimer

I am not a doctor or therapist. I am not dispensing advice, but simply giving food for thought, discussing my personal experience in relation to parenting a child with chronic illness and the impact it has had on my family. I am not recommending any particular way of parenting; just sharing my experiences. Please consult your physician or personal therapist for issues you are concerned about.