"Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain."
I’ve been thinking about that quote a lot lately, trying to lift myself out of a pity party.
I’m a person who likes routine and things that don’t change. Up until Grace got sick in December, we had a pretty good routine. It was unique to our family since taking care of Grace has special requirements, but it worked.
And then in early December, Grace ended up in the hospital for two and a half weeks, with another nearly week-long stay at the beginning of January. Things just haven’t been the same since then.
It started during her first hospital stay with the realization that I could no longer feed Grace anymore, as the risk of aspiration was too great. That meant an NG tube through her nose temporarily with the goal of a G-tube through her stomach eventually.
Medical things just aren’t my things. I prefer a career in writing and photography, although I have learned and done much more for Grace than I could have ever imagined. An NG tube meant learning how to make sure it was always in the right place before feeding, as well as how to use the pump and the feeding bags. I can’t say that any of it is hard, just different.
When Grace was discharged from the hospital in December, it took us several days to find a new routine that kept us closer to home. Things were finally starting to fall into place when she got sick again and needed another hospital stay.
We were very lucky the second one was so short, but I found myself feeling very stuck.
I began to see friends’ photos from trips to fun places over the holidays and started to really struggle because I felt so trapped at our home and in Hillsboro.
Kyle and I are very lucky that both sets of our parents help out taking care of our girls which gives us the chance to work for the paper. I have stepped back to part-time since Grace was diagnosed with INAD, but it definitely gives me an outlet and something to do for myself.
But with the new feeding tube, I found myself running back and forth from work in the afternoon to make sure and get it started or shut off.
My mom and dad have offered a couple of date nights, but instead of picking our favorite places in St. Louis, we stayed closer to home to take care of Grace.
And I just felt stuck.
Then one day, I got a text from one of my favorite people, Tina Leefers, who is also hairstylist to the Galer and Herschelman families. She and my mom had conspired together for a special afternoon, and had it all set up. Mom made the appointment with Tina for a new cut and color and then made plans to keep the girls so I wouldn’t worry.
Although I got everyone else in my family haircuts before Christmas, I just didn’t make time to get my own done. And it felt great to have a few hours to myself with a brand new haircut as well.
I drove all the way home from Coffeen smiling. And that quote popped back into my head. "Life isn’t about waiting for the storm to pass, it’s about learning to dance in the rain."
Sometimes the storm that comes with Grace having INAD is hard. Right now, it means we can’t be far from home or take Grace all the places we used to. Kyle would love more than anything to take her back to Disney World one more time. But it’s just not in the cards right now.
I let that storm take over my whole life, resentful of being stuck at home. But one afternoon ten miles from home helped me remember that my dancing shoes just might be waterproof.