Stronger Every Day: For Parents of Children with Rare Diseases

Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor? Doctor visits can be overwhelming, especially when managing complex medical needs and balancing your family's well-being. This episode tackles practical strategies to streamline these visits, ensuring your child's needs are met without leaving you completely drained. 1. Discover simple, time-saving tips you...

Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism? Navigating the challenges of parenting or caregiving can be overwhelming, especially when it comes to understanding and addressing potential developmental disorders like autism. This episode explores how to identify signs of autism, the steps to get a diagnosis, and why ea...

Health Insurance: 7 Tips to Beat the Insurance Company and Get Your Family's Bills Covered Have you ever felt like navigating insurance claims for your child with disabilities is a full-time job? As a parent or caregiver of a child with disabilities, you're likely dealing with an overwhelming number of medical appointments and insurance claims. This episode addresses how you can simplify this proc...

Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode (part 2 of 2) dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you're seeking ways to better support your child's educational journey and ensure their rights are upheld, this is a mus...

Are you ready to navigate the complex world of special education and become the best advocate for your child? This episode dives into the challenges and triumphs of special education, offering insights that directly address the struggles many parents face today. If you're seeking ways to better support your child's educational journey and ensure their rights are upheld, this is a must-listen. By t...

I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl? Shout-out to Special Surfers, a non-profit organization sharing the empowering experience of surfing with children and adults with special needs of all diagnoses. specialsurfer.org     

One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.

Taking some time this week to reflect on community. The one we've built and continue to build, and what it means for Tess and our family.

If you have a kid with disabilities, your life is full of stuff you'd perhaps rather not do. Go to a million appointments, wind up in hospitals, deal with paperwork. But there are three letters that create more dread than nearly everything else.

I'm in the bleachers at a field. I watch two opposing lacrosse players collide with a massive crunch that's audible from the stands. Many parents gasp. I don't. I just watch in dismay and disbelief.

If you're trying to cure a rare disease, there are two tools that you can't live without.

It's a common problem in our house. A certain young lady who gets cuts from time to time. And who hates Band-Aids more than anything.

I want to tell you a story this week of someone who grew up here in Maine. I've gotten to know him over the past few months, and he recently raised his hand, boldly stepped forward, and made a massive difference for Tess and our foundation.  

To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.

More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica. 

It's time. It's time to take Tess out of the United States and into another country.

We have a saying in our house. We talk about "the age of independence". And yes, there are some eyerolls from our kids, but we push them to do stuff for themselves.

A rare event. A solar eclipse in the United States. Where was Tess on that day, and what was she doing?

You're busy. Sometimes you think about how busy you were a year ago and think wistfully--man, that wasn't busy at all compared to now! But in spite of this busyness, there's something that's required from all Hao-Fountain patients.    If you need to donate to our biorepository because you haven't yet, email me here: bo [dot] bigelow [at] gmail.com.    Buzzy - personal vibrating ice pack for easier...

I always tell you I got more questions than answers. But this week, I've come up with an answer. And it's helping me every single day. 

Student-athlete Tess. She's been on a team this winter through her school, and we've just come off a massive, colossal celebration of the whole shebang.

Sometimes when you're on the road, your plans go out the window. You have only a fraction of the stuff you need. But something unexpected comes up. And you have to MacGyver a solution.

Tess has this thing. It's not a superpower, but a way of seeing the world. The best way to describe it comes from a movie from 1982. 

Tess has developed a new habit. It's about her breathing. And it seems like she may be trying to tell us something. If you're from the Hao-Fountain community and you see behaviors that you're working to address, give me a shout:  bo.bigelow@gmail.com    

If you're like me, you're bombarded these days with articles all about the importance of regularly getting good sleep. My wife and I would do this if we could. But instead, we have children.