When your toddler helps with your infusions
The power of normalizing hard things
Greetings lovely readers,
When we’ve got a curious two year old and home infusions regularly, we have to make the experience feel safe for her.
We are big fans of normalizing. July knows Nurse Stacy comes over and gives Mommy her medicine to keep me strong.
We don’t get into details, but she’s seen the nitty gritty. I don’t use a port, so it’s an IV in my arm. It’s unpleasant and I have tricky veins. I heat my arm, my nurse searches for a good access point, I squeeze Zach’s hand and try to look like the pain isn’t “that bad.”
She sees me cringe and then be okay.
Last time, she unboxed the $130K worth of meds with my nurse and “read” me a children’s book. We snagged a little very cute video of the process before her bedtime.
The older she gets the more she’ll have to face the realities of our situation. For now, it manifests in a lot of medical play and pretending to be Nurse Stacy.
We’re incredibly proud of how well-adapted July is despite all we’ve been through. Sometimes I feel like I can’t take credit for her, she is so her own person.
But I know we’ve created a framework of safety, fun, and joy in the face of life’s challenges.
Ask Me Anything
Have you been reading the substack and following our stories and wanted to ask me a question? Feel free to drop questions in the comments and I’ll be happy to answer them.
Zach has a new song out!
Get this hot new track in your playlists! It’s so so good:
COMMENT OF THE WEEK
“Hi Taylor, Great videos and advice for any patient and caregiver. Keeping records of your symptoms and treatment etc is exactly what caregivers in USA and now UK are sharing with each other, templates and ideas to empower ourselves. You may be interested in the 'origin story' of Tiago Forte who wrote 'Building a second brain' https://fortelabs.com/blog/the-story-behind-basb/ There is a whole 'productivity' following behind his ideas now. Like you, I'd love to see an integrated physician-patient-caregiver info-system, I keep updating my excel sheets on Mums med-history. Having 6 copies ready in our go-bag for Dad saved time, and EVERY copy was used, because the I was asked by every physician / nurse for the same info, between A&E and admission to a bed.” Victoria
If you’re new here and wondering, “what happened to this lady?” read:
Welcome to my disease. What is atypical Hemolytic Uremic Syndrome (aHUS) or Complement-Mediated Thrombotic Microangiopathy (CM-TMA)?
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.
Thank you to CC Couchois, Roy Lenn, and Dr. Richard Burwick for your founding level donation.
H Taylor, Aww July is SO adorable as a little doctor. Bless!
How are you doing? Sending over some strength and hugs (sterilised first though because over here we've had a stressful few weeks of hospital admission for Mum. Long story short - COVID+ve, febrile fever, blue-lit-trip with sirens, diagnosis of pneumonia, and I turn COVID +ve with severe strep throat) We're still trying to recover, but we're in calmer waters.
Thank you for sharing my comment. Even when I had the medical history and summary of medications I STILL had to voice the essentials at least 5 times, between the time we arrived in A&E at 3.30pm and when she was admitted onto a ward at 10.30pm. It's a good thing I still had a voice at that time. Given Mum wasn't coherent because of the fever, imagine if I couldn't voice key facts. These events spike my adrenalin and cortisol. Each one of these trips to ER leaves a scar on my heart being in fighter-protector mode whilst my insides crumble.
Here are some 'hacks/tips' that may be useful - I hope it's ok to share here? https://www.carermentor.com/p/caregiving-hacks-and-tips