Monthly Archives: November 2022

Where was I?

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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 for school 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

tHaNkS Team Torrey!!!

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How many people does it take to care for our boy?

A lot.

Day 14 with a broken rib. Although I’m healing, I’m still not able to do much for Jack these days. Showering, changing, toileting, medicating, feeding – none of these things are particularly difficult, but there’s the Jack factor. Jack moves and grabs and hugs – it’s the hugs that scare me most – they’re magical, but I worry they could be dangerous!! 

Some samples of the (potentially dangerous) Jack HUG!!!!!

So, I haven’t been doing much other than watching bad tv, studying for the National Counselors Exam, and counting my blessings that Jack has an amazing team of people who have stepped up to help out.

Dan has taken on the brunt of the responsibilities, but he has a job. Anna is home now for a few days – yahoo (she had offered to come home sooner, but she had a cold – if you’ve ever broken a rib, you will understand that a cold is terrifying). Luckily, Jack also has an arsenal of other mothers, and they’ve been amazing! Maria, Monica, and Lilly have all been keeping Jack entertained, fed and clean. And, we have a new addition – Natalie. We’ve known Nat since she was a tiny thing. She’s one of Anna’s best friends and she’s now a nurse. She offered to bring her skills and hang with our boy as needed. Lucky Jack – lucky us!

So, I continue to sit, watch bad tv, study for the National Counselors Exam, and count my blessings.

Thanks everyone for being me! I look forward to being able to care for our boy again (and enjoy one of Jack’s magical/dangerous hugs), but it sure is nice to know that Jack has a team who is ready, willing and able to help!!!

Love, Jess