Where was I?

Just coming down from a magical weekend full of time with Mymom and Anna, hanging with old friends, meeting superheroes, and listening to informative, brilliant, inspiring information. Where was I?

ALD Connect’s Annual Meeting and Patient Learning Academy!

When I was asked to speak at the conference, I was honored but intimidated. Being among so many people who are changing the direction of our disease, I wondered what I could contribute. “The Burdens of Caregiving” was the topic. After some discussion we added “and Joys”. THANK GOODNESS – I couldn’t imagine spending 30 minutes listing burdens!!

I included two other ALD stories – other phenotypes of our disease — so that I could share a broader picture of what caring for a loved one with ALD looks like. Thank you Miranda and Laurie for your honesty and perspective (two of my ALD superheroes). I ended the presentation with a little story that I thought I would share here.

Three weeks ago, I fell. Just out walking my dogs, enjoying the fall weather. I can’t tell you exactly what happened – or if my own ALD had something to do with it — but suddenly my feet got confused and I hit the ground, hard. I broke a rib and without any notice I wasn’t able to do any of the caregiving that has defined my life for the last 15 years.

Anna came up from Baltimore to help out. She had to get Jack up and ready foschool which can be a bit of challenge. One morning I heard her get Jack out of bed and then I heard a few comments about a mess. I watched from the couch as she walked to the laundry room with a big pile of laundry. A few minutes later, she walked through again holding a bag that I could only assume was a very soiled diaper.

I am so sorry you need to deal with that Bananz”

No worries mom – Sometimes you’ve just gotta wash your hands and move on”

And that is just what she did. A minute later I heard her singing along with 70s on 7 while dancing with her brother in the bathroom.

I think it’s important for us caregivers to remember that there will be a lot of messes to clean up – a whole lot of burdens – but if we can learn how to wash our hands and move on, we have a chance of appreciating some of the joys of caregiving.

Thank you, Anna, for your words AND your attitude!!!

Love, Jess