I view the glory of the end of this year with tinted lenses. Several of the students that Libby went through school with have graduated from college. This really hit me yesterday, last day of school, as I went to give Libby her 6am feeding and start getting her dressed. Her feeding tube was out- again. Last day of school when grades are due and mandatory check out procedures have to be completed. That didn’t matter as much as desperately trying to coax the tube back into her belly to avoid the trip to the ER.
Called our head secretary Becky, who is amazing, and told her the funny news that we’re heading to the ER instead of school. Not funny, but you gotta laugh.
The attending doctor couldn’t get a feeding tube back in as the track was already closing up. So off to radiology we go. Luckily Liberty feels pressure around her tube, but not pain. So grateful for that. I had to look away several times as they had to stretch out the tract to get the new tube in. Brutal.
I would give everything I have to take even a part of her conditions away. If only it worked that way.
Don’t know how many more times I’ll be willing to put Liberty through procedures like this. The feeding tube is keeping her weight steady for the most part, but she still loses a little weight at every check in. It is necessary to help her get the additional nutrients she needs.
Here’s the epiphany: while her peers are getting married, having babies, or graduating college Libby got a new feeding tube. Could spend a lot of time being sad. Instead, I have to acknowledge that and move on. I have nothing but happiness and love for her peers. Hope for where they are going and their our journeys. For us, this isn’t the life we dreamt of for her. No parent would wish for this. Not the life she asked for either. But it’s the life we have. We are grateful for the days with her even the hard ones. We are all changed by Liberty and her conditions. All of us. Our goals and priorities are different. Everything is different. And that’s okay.
It’s okay. Sometimes it’s heartbreaking and sometimes it’s heart-taking, but this life remains beautiful. And better than I could’ve imagined.
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