How Do You Cope With Knowing Your Child Has a Terminal Disease?

I get asked daily, “how do you cope knowing Carter is terminal?”

It’s a fair question, and I think those who ask genuinely come from a good place. They want to understand what is an unfathomable situation for most people.

When you have a child, you dream of who they will look like, what their hobbies will include, who their friends will be, and what they will do in life.

You picture pride-filled and joyful moments such as riding their first bike, going on the first date, graduating high school, all ordinary hopes and dreams. The last thing you probably think about is if they’re going to be healthy.

The truth of the matter is, I have no idea what I’m doing. Navigating a terminal disease does not come with a manual. It’s a step-by-step, day-by-day thing, and what works for one person may not work for another.

What I can tell you is that it became abundantly clear after Carter’s Sanfilippo diagnosis that time is not on our side. I tell everyone to tell those you love them daily. If you want to visit a friend, relative, or loved one do it now! Please don’t put it off because you never know if you will get the opportunity to do it again.

In the last four years, I have found that I cannot focus on the negatives. When I do, I go to a dark place, and I miss out on some fantastic days. I need to find the positive every day because there is something to be thankful for every day. Doing this helps keep me present and live in the moment.

Carter’s motto is, “live today, hope for tomorrow.” Our family tries to do this every day. Every day is good! Right now, Carter is still here, and he is happy. That’s all we can ask for but here’s to hoping that tomorrow will be an even better day and show us something new to be grateful for.