Inchstones

A while back, I wrote an Instagram post about how a child’s diagnosis can totally waylay a family’s hopes and dreams. It’s easy to lose faith that you’ll ever get back to any version of the life plan you had envisioned. I’ve pondered this very subject for 5 years now. Will my life ever again be filled with things that were once pillars of my dreams? Or is it only insurance battles and disposable diapers for me from here on out?

Advocacy in Action

Today we have, what I hope will be, our final court hearing to overturn the insurance company’s denial of Oliver’s g-tube supplies.  I’ve been embroiled in this battle for months and I am very much hoping that the judge can see what an unnecessary waste of time this entire thing has been for all parties involved.  ... Continue Reading →

Seizures & Santa Claus

Parenting a medically complex child is not as cut and dry as it may seem. Sure, doctors may be very clear on what “proper protocol” might be, but for the people actually living this life, there are many factors to weigh while making decisions. In the medically fragile world, the battles choose you. And today, we chose to fight this one at home.

Studying Sleep

Wow!! We won the sleep study lottery today! The hospital called at 3 this afternoon saying they had a last minute cancellation and could get Oliver in tonight if we rushed down to Seattle. So here we are. The 6 hour round trip, a small price to pay, for possible answers that might relieve his... Continue Reading →

Life Flight

As much as I hone my writing skills, I don’t believe I will ever be able to fully capture in words, the beautiful tragedy of the medically complex life.  Most outsiders would see only the suffering and the limitations. But what is missing from that perspective, is the striking beauty and unique opportunities that stand... Continue Reading →

Peeling the Onion

It has been said that the grieving process is like peeling an onion.  As each layer falls away, it gives the gift of deeper understanding and also reveals the next level of processing. The stages don’t go smoothly from 1-5… denial, anger, bargaining, depression and then acceptance.  They are interwoven and revisit you many times even after... Continue Reading →

May the Angels Fly High

Most of us share the basic human desire to escape pain. It is weeks like this one that illuminate the desperate attempts my mind makes to transcend my own.  Our HIE community was shaken by the passing of 3 of our children over the last week.  This unbelievable loss has thrust me hard back into... Continue Reading →

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