The Negative Space

The Negative Space Our mission is to change the way caregivers of all kinds are seen and supported.

You know your caregiving is complicated (and that you're exhausted) when you find yourself drawing a diagram to help kee...
06/05/2026

You know your caregiving is complicated (and that you're exhausted) when you find yourself drawing a diagram to help keep track of all the body parts! This is in addition to the six page document my nurse friend created for me that walks me through the daily steps. 🥺

I'm starting to get the daily routines down, but then there are the moments like when he stood up from the couch to try to maneuver to the backyard for a bit and was so weak and dizzy and short of breath we had to abort the mission. Or when I was changing the layers of bandages on his leg and the flap was a different color than yesterday, leading to photos and texts and MyChart messages.

This caregiving thing is no joke, my friends. I keep reminding myself that surgery was just 8 days ago and that it is a true miracle he's doing SO well. ❤️

06/04/2026

The first 36 hours home have been A LOT for this tired caregiver.

HOME❤️
06/02/2026

HOME❤️

06/02/2026

Sean Update: he's coming home today! 🥳
Caregiving Update: he's coming home today! 😬

I know I've got the best people in my life, because when I texted a few folks yesterday when talk of discharge began, their first response was: How do YOU feel about that? ❤️

He is doing better than our wildest dreams and is absolutely ready to be home and I am absolutely ready for him to be there.

And

My mind is swirling with the variety of body systems that need care and support in the weeks and months ahead. I have been caregiving in intense situations for 15 years and still feel 🥺 about all I'm about to be in charge of. In a matter of hours, I will be the ENT, palliative, pain, wound care, nephrology, nutrition, physical therapy, and occupational therapy "team." I have a notebook with instructions, photos of wound care, handouts with notes, bags of supplies and two different companies delivering more supplies later today.

We will be fine and all will be well, but just know that for many caregivers, discharge day is the beginning of a whole new chapter of unseen work for which we are not paid or trained - just want you to have a peek into the negative space even as we rejoice in Sean's miraculous healing! Thank you for your support on surgery day, hospital days, and in the days ahead! ❤️

Caregiving can be isolating and lonely for many reasons:✔ caregivers tend to be more homebound than their peers✔ friends...
06/02/2026

Caregiving can be isolating and lonely for many reasons:

✔ caregivers tend to be more homebound than their peers
✔ friendships can change or disappear
✔ it can feel like no one really understands

Today we're looking back at all of the In Sickness podcast episodes we've done relating to the topic of loneliness. Find these episodes as well as a slew of resources from meditations to processing tools to videos that we created specifically for caregivers experiencing loneliness at The Storyline (no membership or cost required!).

Join us for a free virtual support on this topic on Sunday, June 7 from 6-715pm CT.

Loneliness Episodes and Tools: https://www.thenegativespace.life/storyline/chapters/loneliness/
Register for the Support Group: https://thenegativespace.charityproud.org/EventRegistration/Index/28108

Ended up being a beautifully boring day! They removed a drain from his leg, which is a great milestone but which was ver...
05/31/2026

Ended up being a beautifully boring day! They removed a drain from his leg, which is a great milestone but which was very painful during and after. His vitals are stable, so they were able to disconnect a bunch of monitors. He got up into the chair and got a sponge bath and a fresh gown. His spirits are definitely feeling the weight of it all, but he remains so kind and hilarious.

His dad had been here since Tuesday from Indiana and we had our last visit with him today before he heads home tomorrow. And we did a video visit with Maya, which always lifts our mood. (Click on photo to see all 3 of us)

Hoping for more boring tonight and tomorrow! If all stays on track, he'll go home Wed or Thursday, which will be a whole new adventure. We'll just take it one day at a time!

A few of many of the acts of kindness we've received from our community. Steal an idea from this list to support someone...
05/31/2026

A few of many of the acts of kindness we've received from our community. Steal an idea from this list to support someone in your life!!

1. I came home from the hospital last night to a fridge full of food and snacks from my dad and this cute new freezer bag from my mom so that I can stop eating hospital cafeteria food.

2. Homemade scones on my doorstep? Yes, please.

3. Texts reminding me that I have support and love with zero pressure attached are The Best!

4. A friend knew that the zinnias I had bought earlier had died before I got them into my garden, so she drove to a bunch of local garden stores to replace them for me and included an offer to help plant them!

5. I came home from the hospital on surgery day to find a care package in the door with this special gift for Winston. 🐶

05/31/2026

Today was harder than yesterday. Sean was way more swollen, in more pain, and less energetic than yesterday, all of which is to be expected and they say tomorrow may be even moreso. We had visits from my mom, Sean's dad, and Sean's brother Adam and sister in law, Amanda, all of which were good for our souls. He just got transferred to a non-ICU floor and I'm heading home after being there 11 hours. Hoping for a restful and restorative night for both of us!

This man is a miracle! I would have never dreamed he'd be doing this well less than 24 hours post op. He even took a sho...
05/29/2026

This man is a miracle! I would have never dreamed he'd be doing this well less than 24 hours post op. He even took a short walk and spent time in a chair today. Pain is managed, humor is intact. Two units of blood helped his hemoglobin bounce up a bit and we're hoping it stays that way! Rejoicing in this unexpectedly great day.

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