Are you looking to get organized and level up your productivity?
Read MoreEmpowering the Neurotypical Sibling
Are you struggling to balance the needs of your neurotypical child while raising a sibling with a rare disease?
Read MoreTess Goes to Camp
Quick update about Miss Tess and her adventures at summer camp.
Read MoreMedical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself -- Part 2 of 2
How could you change your mindset about 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 is about your mindset--learning to trust yourself and others.
1. Enlist two types of co-pilots for visits to make sure you don't miss anything.
2. Trust yourself, since you know your child better than anyone.
3. Hear from Harvard-educated pediatrician Dr. Bell about the best ways to help your doctor help you.
Tune in now to gain these actionable tips to make the most of doctor visits!
Medical Visits: Essential Moves for Rare-Disease Parents to Get Your Kid Feeling Better Without Depleting Yourself
Do you dread the exhausting ordeal of taking your child with a rare disease to the doctor?
Read MoreHow to Get an Autism Spectrum Diagnosis and Why It Matters More Than Ever
Are you worried your child might be struggling with social interactions or communication, and wondering if it could be autism?
Read MoreHealth 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 process and ensure you get the coverage you deserve without the added stress.
Read MoreSpecial Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 2 of 2
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 must-listen.
Read MoreSpecial Education: 25 Power Moves to Make Your Child Seen and Known at School - Part 1 of 2
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.
Read More#494: Surfer Girl
I have watched you on the shore, standing by the ocean's roar. Do you love me? Do you, surfer girl?
Read More#493: The Eyes Have It
One day, in a nondescript office building in Portland, three adults give something to Tess. And she comes alive.
Read More#492: Community
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.
Read More#491: Three Little Letters
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.
Read More#490: Crunch
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.
Read More#489: Becoming an APS - Two Rare-Disease Tools I Can't Live Without
If you're trying to cure a rare disease, there are two tools that you can't live without.
Read More#488: The Cloak of Ban D'aid
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.
Read More#487: Nate the Ultra-Fantastic
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.
Read More#486: Trampopoline
To quote Princess Leia, the more you tighten your grip, the more star systems will slip through your fingers.
Read More#485: Costa Rica - Part 2
More stories from near the equator. Part 2 of 2 about our recent trip with Tess to Costa Rica.
Read More#484: Costa Rica - Part 1
It's time. It's time to take Tess out of the United States and into another country.
Read More