April 7th. There will forever be a before and after. The day our lives changed in the worst way imaginable. 

It was a Friday and I left work for my umpteenth appointment regarding my strange left hand weakness. I declined offers from friends to accompany me because I had already been evaluated by numerous medical professionals and had zero expectations of hearing any new information or possible diagnoses. Neighbor was home with baby Henry- the appointment would overlap his naptime and nobody needs that, so I’ll just pop downtown solo and be back to work in time for our surgical case later that afternoon. 

Ten minutes into my appointment, he said ‘I think you have ALS…Life expectancy is around two years…I don’t think you’ll be alive to see your kids off to kindergarten…Need to run a few more tests to be certain…But I’m confident it’s ALS.’ 

I don’t remember checking out, getting in my car or driving home. I do remember calling Dr Hupfer, my boss, laughing because ‘you’re never going to believe this, this guy thinks I have ALS, there’s no way!’
He said, ‘RBD, I think you should probably go home and skip surgery.’ 

Is that when it sank in? Or was it when I walked in the house and told Neighbor? Or was it later that evening as I was taking Henry’s 7 months photos in his 7 months onesie? I didn’t cry because it wasn’t real. I was still nursing Henry, Isaac was three and young moms don’t get ALS, old men do. He was wrong, had to be.

Seven years. I wish he had been wrong, but since he wasn’t wrong about the diagnosis, I will choose to celebrate the wrongness of my life expectancy. I choose to celebrate the goodness that has risen above the heartbreak. The Glitter that I’m graced to experience daily. Glitter is the outpouring of love from those surrounding my family and I. Glitter is the new friends who’ve entered our lives and are committed to walking this road with us. Glitter is life-long friends who’ve sung our rally cry through it all. Glitter is former patients who’ve become dear friends. Glitter is a boss who has become family. Glitter is family who give so generously and graciously of their time to love and support us well. Glitter is College Wood Elementary where we’ve experienced the very best example of community. Glitter is pressing pause on the busyness of life, buying an RV and jamming as many memories in the time we have together.

We none are guaranteed tomorrow, so let’s go out and celebrate TODAY!

XO,
Rachel 

Join me for a stroll down memory lane…