Rarely Familiar

Rarely Familiar Gritty adventures in raising kids with disability and rare medical complexity.

10/26/2025

After a successful emergency craniectomy (brain surgery where they remove part of the skull to relieve pressure on the brain due to swelling), Julian’s journey was far from over. He spent months in rehab relearning how to walk and reclaiming his independence. Jen and he family navigated the complexities of FMLA, short-term disability, and the emotional toll of crisis. Through it all, they discovered the importance of self-care, documentation, and clear communication with medical teams.

Julian’s story is one of hope. Against the odds, he walked out of the hospital three months later—smiling, laughing, and ready to embrace life again.

Thank you Longfellow Market in Minneapolis The Market at Longfellow for listening to us mamas who need a Caroline's Cart...
10/20/2025

Thank you Longfellow Market in Minneapolis The Market at Longfellow for listening to us mamas who need a Caroline's Cart to go shopping! Not only do I love it, but Julian thinks it is pretty cool!

Tips if you need a cart for your local grocer:
1. Talk to the manager of the store in-person with your child in tow and explain what it is (most haven’t heard of them) and explain why it is needed and how it will allow you to return and give them business.
2. Get their contact information and follow up in a few days via email.
3. Follow up again if they don’t get back to you because they usually don’t right away.
4. Ask to speak to their manager if there’s no movement or support.
5. If all else fails, go back in with your child and make a scene and then maybe they’ll consider it!

Good luck!

10/19/2025

The Arc Minnesota is hosting a Town Hall Meeting on Medicaid and Disability on Tuesday, October 21 from 5:00 to 7:30 pm.

Participants will receive a training during the first hour on current issues, Medicaid cuts and how to tell your story to legislators. During the second hour participants will have the opportunity to speak to elected officials and hear their perspective.

More information: https://arcminnesota.org/event/town-hall-meeting-on-medicaid-and-disability/

This…is… awesome!
10/03/2025

This…is… awesome!

MARK YOUR CALENDARS (or subscribe to ours https://www.rarelyfamiliar.com/calendar) CKRI Ski & Snowboard Lottery opens Oc...
10/02/2025

MARK YOUR CALENDARS (or subscribe to ours https://www.rarelyfamiliar.com/calendar)

CKRI Ski & Snowboard Lottery opens Oct 15 for 2025 Kenny Ski Season!

From January to March, Courage Kenny offers weekly adaptive ski and snowboard lessons plus “learn to ski/ride” clinics for all skill levels. Our dedicated volunteer instructors provide one-on-one coaching using specialized techniques and equipment for individuals with physical, cognitive, or sensory disabilities—creating a welcoming space for everyone to enjoy the slopes.
Due to the popularity of this program, registration is done by a lottery. To register for lessons or Learn to Ski or Ride Clinics, sign up during the lottery between October 15-31.

Lottery Dates: October 15–31
Programs Offered: Sit ski, bi ski, mono ski, stand-up ski, snowboard
Locations:
Afton Alps – Afton MN,
Trollhaugen Ski Area – Dresser, WI
Hyland Hills Ski & Snowboard Area – Bloomington, MN

To learn more about the Courage Kenny Ski & Snowboard program. https://account.allinahealth.org/events/53656?mc_cid=4969930ed2&mc_eid=596f49734a

Questions? Contact: ckriskisnowboard@allina.com | Phone: 612-775-2270

There's also an informational session
📅 October 7th
📍 Wooden Hill Brewery, Edina
Register Here
https://forms.office.com/pages/responsepage.aspx?id=78NehJqp5Uqhq8rPfIYuk5OxJsgQOTxBvskurNjWYWdUREY4VlA5Q0xOSVJBS0NORUM3NlJINDVCTCQlQCN0PWcu&route=shorturl&mc_cid=4969930ed2&mc_eid=596f49734a

09/29/2025

In another rare moment, the three of us were in the same place at the same time! 🎉

Huge thanks to for pulling off the very first Santa in September—what a smashing success. 🪩✨

This reel doesn’t even come close to showing how magical it was. Turns out chasing Felix and catching video at the same time isn’t my strong suit 😅.

Next year, you’ll just have to come experience it for yourself. ❤️

As a mom to an 8-year-old with complex medical needs, I can already feel that “next chapter” of health care on the horiz...
09/29/2025

As a mom to an 8-year-old with complex medical needs, I can already feel that “next chapter” of health care on the horizon—the shift from pediatrics to adult care.

If you’ve ever helped a typical teen start building independence and move to adult providers, you know it can be bumpy. When your child has multiple specialists, equipment, or unique needs, that transition becomes a whole new level of complicated and feels like you're about to be pushed off the top of a tall building.

That’s why I’m so grateful for the Health Care Transition Learning ECHO Series kicking off October 6. It’s free, virtual, and created for parents and caregivers of kids 13 and up—but honestly, it’s never too early to start preparing.

I’ve learned so much already, and I know my future self (and Felix’s!) will thank me for starting these conversations now. Register today gillette.mn/echo-webinar

Felix coming home with this sweet little bouquet today made my heart so full. There is a deep desire in me to celebrate ...
09/24/2025

Felix coming home with this sweet little bouquet today made my heart so full. There is a deep desire in me to celebrate the little things, especially when the world seems so full of negativity.

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