Tuesday, March 18, 2014


I'm meeting with Barb Brandt this Friday:

Her husband died from ALS in January.  He had it for two years.

I mentioned our situation to a customer at work and she knows Barb.  This customer thought it would be good for us to meet and connect.

It feels odd, this random connection.  I feel unsettled about the conversation.  Prying in to her life, opening up my own.

My chicken little worry hat is on too tight.

I sense it will do us both good to share our stories and I imagine her resources, her first-hand knowledge of caretaking will be invaluable.

I love this picture of Michael Brandt and his kids at a bike-riding fundraiser:

Luther and I were talking about his future.  How tough it is to think of things to do when your body won't let you do anything.  The reliance on others to not only get you places but to do things like wrap your hand around a glass.

I'm not going to be with him all the time.  Sure, it's going to be great to have a home health care worker here. But I want his time to be spent with people who love him, you know?  Sit with him, watch a movie with him... can he play cards?  scrabble?  He can't use his arms.  What's he going to do all day??

Looking at the picture in the link above gives me hope we can be outdoors, we can enjoy some ordinary every day things, we can find ways to adapt his immobility and make him feel like he's part of the world and not just a bystander.


  1. Hello Lynn, My name is Jennifer Griffin and I coordinate the Hopes & Dreams Quilt Challenge for ALS. I would love to send Luther a quilt - free of charge. The Hopes & Dreams Quilt Challenge for ALS was started by my boss five years ago after her oldest son was diagnosed with ALS. We accept quilts from all over the country and give them to "PALS" - people living with ALS - as well as sell quilts to raise money for ALS Research. So far we have given more then 3,300 quilts to PALS and have donated more than $80,000 to ALS Research. If you would like us to ship a quilt to Luther - send your mailing address to QuiltersDreamBatting@Juno.com. To learn more about Hopes & Dreams, visit our Facebook page here: https://www.facebook.com/pages/Quilters-Dream-Batting-sponsoring-Hopes-and-Dreams-Quilt-Challenge-for-ALS/150913912237 or visit our website (which is being upgraded!) here: www.hopesanddreams.quiltersdreambatting.com. I wish we could have sent Michael a quilt, too. Good on you for meeting Barb and allow her to help you! Jennifer

    1. Wow! Thanks, Jennifer for the offer! I will definitely look at your Facebook page and I will add your page to my blog so more people can find you. What a wonderful project.