Distance. That's all I need. A step away from the past couple of years. Here's why.
When you have a chronically ill childchronically ill child, every day is struggle. First, dealing with the unknown which is frightening as hell. Then, the frustration of navigating the health system, trying to get people to take you seriously and too many doctors to count. When you finally get answers, it's a relief but the reality is the stress doesn't stop. The reality is you still have a sick child. You just know about the beast.
I've spent the past few years writing about our journey because I knew in my heart that our story would help countless others. People get paralyzed when someone gets sick. There's no manual to tell you how to deal with doctors or what to say at the ER. There's no flowchart that says “if you have this symptom, do this next” to take you from A to B to C. Essentially, you're out there on your own trying to figure out how to juggle symptoms and keep your sanity while you search for answers. And many times it feels as if all the doctors are working against you instead of trying to help. It's a complex and confusing time. So, I've been open and honest in the hopes that our struggles will make someone else's life easier. The good thing is I know it has.
The bad thing? Sometimes illness all people want to talk to me about. They want to ask me how to advocate for their children and I'm happy to help. And, often they need to vent because no one else understands. I totally get that. But, my life isn't defined by illness and I'd like to talk about other things (and so would my teen).
I've talked about the dividing line with chronic illness. It's the line that separates the way life was before and the new normal that it is now. People tend to forget that on the other side of that line, I had a successful full-time career, played tennis and read lots of books. I was an involved dance mom and avid volunteer. I still have all those interests and sometimes, I'd like to talk about them instead of bad doctors and hospitals. And, you know what? I bet your children would too.
Here's what I know about conversation. If you talk about being sick all the time, your children listen and it becomes the entire bubble surrounding them. They don't have a chance to escape illness because you're not letting them. We need to let our chronically ill kids experience life as normal as possible and that means when you have answers, you deal with what you have and move on. There doesn't need to be constant chatter.
So, right now I ask for a little distance please. It's summer, the sun is shining and we're getting ready to head to Nashville for my teen's pageant. While her volunteer focus is on terminal and chronic illness, she's not focused on her own illnesses. Let's talk about other things.
Disclaimer: This post is not directed at a specific person so please do not be offended.