Caregiving a Sick Child is Hard -
Getting Support While Doing So is Essential
I have a kid living with a rare, often debilitating and complex medical illness. On our journey, I have gotten a lot of advice - some of it good and some of it, let's just say well-intentioned. One of my favorite pieces of advice has been to let my daughter "Eat The Cake First". Simple , brilliant, and effective - guaranteed to preserve the magic of childhood.
When my daughter got really sick - I kept looking for the "What to Expect When... " book for parenting a really sick kid. Or even an app, you know, a resource like those baby books or apps that would pull together awesome advice and toolkits from professionals and parents into one place and at least give me some solid starting point. Nope! Still looking - So I decided to create my own.
Welcome to "Eat the Cake First" - My Version of What to Expect "WhenYour Kid Gets Seriously and Chronically Ill..."
You can read more about my family in this Today's Parent magazine article
"I Don't Know How You Do It?" -
Choosing Gratitude & Creating Ecologies of
First of all, a secret, I don't do "it". I had to learn and lean into a term alien to me "collective care". I had to step away from "self care" as an isolated act of self preservation. I learned to combine #squadcare with individual acts of choice. I choose to be grateful for the small moments, count my blessings, and look for the good as much as, and everywhere, possible. I just do what I think any one of us would do in this situation - I love, I caregive, I parent, I advocate, I figure it out as I go along, I drop a lot of balls - and I let others help me.
And I have collected and created evidence-based strategies and tools to successfully advocate for my daughters' complex medical and childhood needs; ranging from coordinating over a dozen medical specialists and getting into a limited clinical drug trial-- to keeping childhood magic alive by "eating the cake first" and balancing normative developmental needs with all the medical/healthcare stuff and the impact it has on everything from breakfast to bedtime. Basically how to become a "mom-ologist" - the job you wish you didn't have, but you do.
Offering the Resources I Wanted ...
Online tools, support, and resources for caregivers; workshops/classes for caregivers and families in partnerships with local providers.
There is an adage "there are no sick kids,
there are entire families living with a sick kid".
THE BIG PICTURE
Having a really sick kid is horrible, because there are some things we cannot make "all okay". Sometimes we can influence how what happens next occurs.
ADVOCACY - "HOW TO'S"
From 'unlearning' the "good patient" mindset and learning to lobby for your child's specific needs to creating treatment dream teams and building ecologies of care.
TAKING CARE OF YOU
Unlearning the "I can do it on my own- selfcare culture" Resources for mapping circles of care to identifying wellness resources.