Hi Everyone,

Thank you for all you do to support our family! I created this page to organize specific needs that we have. When you want to help, you can simply browse the task list and assign one (or more) to yourself.

Stay up to date on updates (and very adorable pics) by following.  

Why do we need support? We're glad you asked!

As you may, or may not know, I have been playing the role of skilled medical caregiver to Jordi since he was born in September of 2018. 

Because Jordi was born with a rare condition called a Congenital Diaphragmatic Hernia, he has needed a lot of extra support in his life. 

We spent 74 days in the Neonatal Intensive Care Unit (NICU). We now juggle specialists, therapies, and coming up with ways to support activities of daily living. 

What kind of support feels right for us? All kinds! Well, kindof. 

As you can imagine, it has been tricky navigating the world as a support needs family. Sometimes I don't want to ask for help becuase unfortunately, I've had a lot of experiences that centered others' grief/discomfort about our situation, rather than a true supportive helping hand. 

Sometimes that leads me to pretend I have it all together, but I don't! I would love to have your help. 

Sometimes people don't know what to say/do to help us out. This registry will be a great starting place. When you're unsure, you can always check in with us: 

-Was that ok for me to ask?

-Does what I'm doing feel supportive to you? 

-I have some free time on x day at x time, give me a task! 

Learn More

What is CDH? https://www.forehadley.com/about-cdh-2

Thanks,

Darragh