Last night I had a Instagram messaging conversation with a CF patient about Miralax vs Senna. I’ve also recently met three other ladies who were diagnosed in their teens who have very similar stories to Lexi’s. They are in their 20s now, so it is nice to know people who are about 10-15 years out from where Lexi is. It gives me a vision, and nice to see that, at least in their cases, they are pretty stable overall. That perspective is really important.
Lexi just coughed up blood for the second day in a row. This is one of those abnormal for the rest of the world, but normal in the CF world. Those are the things that I’m not sure I will ever get used to. She has clinic in two weeks. She isn’t coughing up enough that we need to be seen. Just enough that we need to monitor. So I’m working from home this week.
There will be several more posts coming out soon, as I’ve been keeping a list of things I want to work through. Writing for me is just a way to release thoughts from my overactive brain. I’m definitely thinking too much. Brooklyn is ready to start sharing her journey more. She’s enough like me that I think writing things down can help her too. Time will tell how much she wants to share. As always Adam and I both believe our kids journey’s are their stories, and so we will never share more than they want shared.
I’ve learned a few things over the last 15 years. I’ll share them and leave you with something to think about.
- The first is it is ok to say yes. Yes to offers of help. Sometimes you need a little help from your friends. It definitely does take a village. People want to help you. Yes, you need to pay it forward. You should always pay it forward. But realize that when people help you during a difficult time they also feel better. By saying yes, you enable them to feel like they are making a difference.
- The second is that you can overshare with your family and friends. That probably seems weird as I put things out there for the world in social media. I see that as different. We created a public site so that people can choose to follow. We don’t track what family and friends join those sites. Our public FB page is largely family and friends. Our Instagram page is largely strangers. I post far more often on Instagram then Facebook. I understand that my bad day is not the worlds bad day. I try to teach that to my kids. People can choose to follow our bad days, and reach out or comment. But I choose not to place the constant burden that sometimes is our reality on everyone around us.
Life is about choices. Choosing happiness or sadness. Choosing how we react to a situation. Choosing our village. I choose happiness where I can, and when I can’t I seek a village.
Have a good night friends. Until next time.