A Child's Perspective

Being a parent isn’t easy. As a single mom it’s difficult at times. Throw in chronic illness and it’s overwhelming and isolating. This post I wanted to do something different. It’s a unique take, many don’t think to write about, or even think to think about. I wanted to sit down with my son, and basically interview him. Get his thoughts on a few things. Below are his answers, as a child with a parent that has a chronic illness.

From a child’s view..

1) With my having a chronic illness, how do you feel about that? I’ve gotten used to it. Your low energy days, needing to rest. It doesn’t bother me.

2) Have you often felt overwhelmed? If so, how do you deal with it? No, I did in the beginning, but not anymore.

3) Do you ever feel angry? If so, why? No. I’ve just gotten used to it and I understand there’s limitations, but everyone has some sort of limitations.

4) What is the hardest thing you’ve had to face in having a mom that is chronically ill? Sometimes when we go places that aren’t wheelchair accessible. That can be hard if you’re having a bad day and need your chair. More places should be accessible for everyone.

5) Do you prefer when I shield you from the bad days? Or do you want the truth of how things are? I want the truth. Don’t lie about it to me. That would hurt my feelings.

6) If you could give parents and kids new to this any advice, what would it be? Don’t get upset when they struggle to do certain things.

For Kids: Journal your feelings. Be honest about how you feel. Adjust to doing things at home. We play board games on bad days, we read together, and watch movies. We do what we can together.

For Parents: Your child will get angry, but understand their feelings, and talk them through it. Find things to do at home together that’s low energy. Make memories together. You don’t have to go somewhere to make good memories.

7) If you could tell me anything about how you’ve seen me struggle with my body, what would it be? You’re a good mom, you do everything you can for me. You make sure I'm happy.

8) Do you know how much I love you? Yes, I do.

Opening a dialogue with our kids

It’s always interesting getting his perspective. He’s wise beyond his years. He’s honest, compassionate and understanding. We try to hide things from our kids, to protect them, but maybe that’s leading to more anger, more resentment. We should open a dialogue with them about it. Explain what we can and can’t do.

Most importantly, make memories together in ways that you can. He’s right, you don’t have to go places to make memories with them. We do movie days/nights. We play board games. We find ways to create those memories that we will both cherish.

I know our health can take a lot from us, but it’s not just us that it’s affecting. We push ourselves, sometimes to the brink of injury or exhaustion. We need to listen to our bodies, we need to adjust what we do to be within our limitations. We need to adjust and adapt to what we do to have spoons to make these precious memories with our kids.

I know it’s not easy, I know there will be trials and tribulations. There will also be laughter and joy. Our kids don’t need expensive things, or expensive trips. They need us, they need our attention, and time. Simple things can make great memories.

Are you managing more than one chronic illness? Check out our forum here, and share with others who get it.