The Negative Space

06/17/2026

The summer season can bring with it extra challenges for caregivers, including heightened feelings of isolation and being left out, complications during travel, and heat - among other things.

Join us for a free virtual support group on this topic on Monday, June 22 from 6-715pm CT. Caregivers of all kinds are welcome! Have questions about what to expect from our support groups? Feel free to send us a message!

Register here for the 6/22 group: https://thenegativespace.charityproud.org/EventRegistration/Index/28258

06/16/2026

There are aspects of summer that can make caregiving feel particularly tricky.

⛱ It can feel like everyone (but you) is on vacation.
✈ Travel (if you are able), either with or without your person, can be harrowing.
☀ The heat can cause extra health challenges.
💊Your medical team may be harder to access.
👧You may have kids who are out of school.

We've covered a few of these topics at the "In Sickness" podcast in the past and will have a free virtual support group on this subject on Monday, June 22 from 6-715pm CT.

Caregivers: what parts of summer feel tricky to you? And/or are there parts that are easier? Share in the comments below!

Listen to the podcast: www.insickness.care (search for featured titles)
Register for the support group: https://thenegativespace.charityproud.org/EventRegistration/Index/28258

06/16/2026

Yesterday was a huge day! Not only was it our 24th wedding anniversary, but Sean was cleared to begin drinking clear liquids, so he had his first water since May 28th!!!! He will be on clear liquids for 3 days, then move up to thicker liquids for a few days, then move up etc etc etc. He gets all of his hydration and nutrition needs met via the gtube, so the great thing is that for now he can just drink whatever sounds appealing.

At the clinic they also removed all the staples from the neck incision, which means that no longer requires wound care and all the staples from the leg. The leg patch is still working on healing, so they put him on an antibiotic just to be safe and I will continue to do wound care on that daily.

We met with the speech team again and they said that starting to drink and eat will help with speech. She also recommended that he read aloud each day for 3-5 mins and that he practices talking as if he's annoyed-slow and well-articulated. 😂 She doesn't know that he is the kindest man alive and that he doesn't typically need or use an annoyed voice.

Part of his lips are paralyzed and they don't know when/if that will return. We go back to see the other surgeon tomorrow and will meet with the speech person who focuses on mouth paralysis then.

Tomorrow is also a big day because the Fanconi Anemia virtual tumor board is meeting to discuss Sean's case. These are FA experts from around the world including his local team. For a typical case like his, they would recommend that he has radiation next. But radiation isn't typically recommended for people with FA because it's a DNA breakage syndrome and Sean has already had radiation on his neck years ago and they don't typically want people to have radiation in the same area twice. But, his surgeon had said before the surgery that the surgery only takes care of 70%, the radiation covers the other 30%. We are not thrilled with either option. So tomorrow at 1130 the tumor board meets and then at 130 we meet with the surgeon for a check up and to discuss their conclusions. We're back at a crossroads moment and we don't love that.

So today we will enjoy drinking water and not having huge life-altering decisions to make! Thank you for your continued support!!

06/15/2026

We're hoping the gift for 24 years of marriage is medical permission to drink water!! Spending our anniversary at the clinic, hoping and praying that this appointment will bring clearance for Sean to start having sips of water. Can you imagine not having anything to eat or drink by mouth since May 28??? Also hoping the rest of the neck and leg staples will come out today. Happy Anniversary to the love of my life. ❤️❤️❤️

06/14/2026

My fellow caregivers know that the phrase "sleep when the baby sleeps" does not just apply to newborns AND that no matter the age of the person you're caring for, that advice is easier said than done.

Today when Sean went to rest, I walked the dog, chatted with my mom, ate some lunch and then headed to the bedroom to nap. When I opened the door and saw him sitting up, wide awake, I promptly burst into tears. "I missed my chance!" I cried. He sweetly assured me that he was happy to continue napping so that I, too, could rest. ❤️

Having another human rely on you for their every need is a lot, my friends.

Caregivers: do you rest when your person rests or is that when you get all the things done??

06/12/2026

Last Friday, I wanted to run away.

We were 8 days post-op and had been home for 3. I was (and still am) fully responsible for Sean's nutrition, hydration, medication, and wound care needs. He could not (and still cannot) safely move from one place in the house to another without support. As I worked my way through the six typed pages of daily medical tasks, I felt like I was living in a Groundhog's Day nightmare. I could not stop crying.

Yes, I was grateful that the surgery went so well. Yes, I was happy his kidneys were holding up. Yes, I was amazed that the hospital stay was shorter than expected.

And.

Every single aspect of his care depended on me - a fact that would be true for the foreseeable future - and every ounce of me wanted to run far far away. Not from Sean, the person who continues to be delightful and kind and loving through it all, but from my current reality.

Spoiler alert: I didn't run. Instead, I called a friend and said all of these things out loud. A friend who didn't problem solve or bright side, but said, "Of course you want to run away. That makes perfect sense." I told Sean how I was feeling. I thought of small but realistic ways I could run away in the days to come: a walk around the block, a trip to the neighborhood shoe store, a visit to the nearby garden store. I let myself say and feel and acknowledge that what I'm doing is impossibly hard and I cried myself to sleep.

It's a week later and I continue to be responsible for every ounce of Sean's well-being. There are still absolutely moments when I want to run and I'm sure as the days and weeks tick on there will be many more to come.

I share this so that if you're a caregiver wanting to run away you know that You Are Not Alone. If you know a caregiver (you all do!!!), a powerful way to help is to offer to come over for even an hour to let them shower, nap, take a walk, run away.

Caregivers: I see you. I'm with you. I am you. Feel free to share in the comments or privately with me times you've wanted to run away. ♥️

06/12/2026

Are you a caregiver and have questions about Minnesota Paid Leave? 💛 We can help!

Please join us next week to hear helpful information for caregivers who are helping a loved one apply for medical leave or are applying for caregiver leave.

Weds., June 17 from 12-1pm 💛 Register here: https://us02web.zoom.us/webinar/register/WN_MIT0USXwR2axtdpJ6HWVyg #/registration

06/09/2026

I was grateful to be a guest on the Inheritance of Hope podcast recently. They do such incredible work supporting families dealing with terminal illness. Take a listen to our conversation and check out their beautiful resources.

06/09/2026

A few tips and tricks that are getting me through the day.

06/08/2026