Written by: Brady Crandall
When our daughter was born with HIE (Hypoxic-Ischemic Encephalopathy), it felt like our world had shrunk to the size of a hospital room. But little did I know, we were about to become part of a vast, supportive community that would change everything.
Finding Our Crew
At first, I was angry and overwhelmed. But as we connected with other HIE families, I realized we weren't alone. These parents became our lifeline, sharing experiences and advice that no medical textbook could provide. The Hope for HIE community showed us that our daughter's life would be full of joy and achievement, even if it looked different than we'd planned.
The Daily Grind and Community Wisdom
Our days are a complex dance of medications, appointments, and care routines. Here's where community knowledge has been invaluable:
● Medication schedules? A mom from our support group introduced us to mejo, and it’s been a game-changer for managing it all, especially with new schools and providers.
● Balancing work and care? Fellow medical dads like Ryan shared strategies that helped me navigate being both a startup founder and a caregiver.
mejo: Connecting Care and Community
Speaking of mejo, this app has become our bridge between our daughter’s care needs and new providers. During a terrifying choking incident, I handed my phone with the mejo app to the paramedics, giving them instant access to her info. It was like having our entire care team and support network right there with us.
The Birth of Youth Crews: Community-Inspired Diapers
As our daughter grew, we faced a challenge many in our community shared: finding appropriate diapers. Discussions in support groups revealed that this was a universal frustration. This shared need sparked Youth Crews. We;re creating diapers for disabled kids who've outgrown the baby aisle but aren't ready for adult products. It's not just about a product; it's about addressing a community need and providing dignity. Our way of saying “hey, we see you, and we get it.”
Youth Crews was born from countless conversations with parents who, like us, wanted better for their kids.
Leveraging Collective Wisdom
The medical community - from fellow parents to dedicated professionals - has been our greatest teacher:
● Valuing small victories: A concept we learned from seasoned parents in our support group.
● Navigating the healthcare maze: Tips from parents who've been there have saved us countless hours and headaches.
● Adapting home care: Occupational therapists and experienced parents have shared invaluable hacks for daily life.
Moving Forward, Together
To other parents new to this journey:
● Seek your community. Whether it's online forums, local support groups, or organizations like Hope for HIE or other diagnosis specific groups, connecting with others is crucial.
● Share your story. Your experiences could be the help another family needs.
● Embrace help. Apps like mejo not only organize our lives but help us stay connected with our care networks.
Remember, you're part of a resilient, innovative community. Every challenge you overcome,every tip you share, contributes to our collective knowledge and strength.
Our kids are more than their diagnoses. They deserve products and care that recognize their unique needs and personalities. We're not just managing medical challenges; we're creating a world that truly sees and celebrates our kids. This belief, shaped by our amazing community, drives Youth Crews.
Comments