what is the hardest aspect of your child's medical issues/diagnosis?
Question of the Month
What Not to Say to Parents of Disabled Children (And What We Wish You'd Say Instead)
Ahhhh, what a trick. When someone is going through something so wholly different than we’ve experienced before, it’s hard to pluck up the courage to say something. What if it’s the wrong thing? What if it makes things worse?
The Most Meaningful Help Given Us
In his first year of life (and even the months leading up to his birth), we were in and out of the hospital for Kimball a lot. That was tough in and of itself. But we also had a struggling toddler and it was just short of a nightmare.
Impact on Marriage
As discussed in Episode 43 about marriage + medical-complex parenting, the “statistic” that we are higher risk for divorce is actually nonexistent and even disproven.
How we support siblings
Siblings are along for the ride when it comes to medically-complex and rare parenting. Their experience is different than their peers in a similar way as our experience is different from our peers.
What We Want the World to Know About Medically-Complex Parenting
Medically-complex parenting is parenting in a different world than our peers. It has unique jargon, unique fears, unique challenges. And no one can truly understand it without living it.
Our Favorite Self-care Practices
“Self-care”! What a buzz word, right? But it really, truly is critical. Why is it critical? Well, what I’m about to say may surprise you: It’s critical because you are a human freaking being.
The Traits We’ve Gained Because of our Children
This has definitely been one of my all-time favorite questions—the beautiful and relatable answers I received in return were such an honor to read!
We See You—Words of Encouragement from One Parent to Another
It’s safe to assume most of us have been there—we’ve been overwhelmed and heartbroken by a new diagnosis or perplexing medical/developmental issues with no answers for our child.
The Tools and Toys We Use
I’ve been super excited to compile a list of tried and true tools and toys that we use for our children—or really anything we’ve found helpful!
Therapy Hacks
It’s easy to smile and nod when our children’s therapists tell us what to work on each day between scheduled visits. But then life happens and actually doing what they assign can be quite the feat.
Appointment Day Hacks
Appointment days can be super emotionally charged days—If you know, you know.
