I find myself not wanting to go to bed. I’m so tired my head hurts and my body is dragging, but I don’t want to give in. Going to sleep means I wake up the next day and we are one day closer to Cooper’s surgeries. I see Cooper pulling the same trick. He even verbalized it last night “I don’t want to go to bed, then I’m only three days away from surgery” – that’s when I realized I was doing the same thing.
Now I need to get him, and myself, on the next page. We need to get to surgery and beyond. After surgery is cast day #1, which brings us closer to cast day #48, when we get the cast off.
We’re taking one step at a time. And right now, we are enjoying the time Cooper is still literally taking steps.
Most recently, I’m defined as Cooper’s mom. Before that I was just Campbell’s mom. Before that I was Brian’s wife, a daughter, a sister, a cousin - you get it. Life has changed. My 5 year old son Cooper has a rare, degenerative, genetic disease. My 8 year old daughter Campbell is our “typical” kid.
Here I am addressing all the stuff that goes through my head as we progress on our rare disease journey. It’s mostly the hard stuff. The fun stuff is in all the pics on Instagram and stories and check ins on Facebook. Here is where life gets real.
Last summer I saw Andy Grammer in concert for the first time. It was an upbeat, super-fun show! At one point he slowed down to perform “Good Parts”. And I couldn’t help but cry when I heard it. That’s it. “Show me where it hurts, but don’t leave the Good Parts out.” I needed to show where it hurts. If you’d like to see the Good Parts too, follow me on Instagram, @caktippett
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Rare Mom Life 