Humble and Kind

2020 has been a year of unprecedented occurrence.  To varying degrees, the virus has affected us all.  It’s led to isolation, loss of livelihood and in many cases, loss of life itself.  Families ripped apart, so many have suffered deeply.  Fights over equality, politics and government control have left gapping wounds in the unity of our people.  There is no... 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.

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 →

Unexpected Blessings

I was in rare form this morning. Well, let's be honest, it's not so rare these days. LOL After all of the craziness of the last couple weeks, I completely forgot about our Gastroenterology appointment at UCLA this morning. Luckily I had glanced at my calendar last night and caught my oversight before missing it... Continue Reading →

The Anger Stage

Today was hard.  I was inarguably consumed by the anger stage of grief.  Before I write though, I want to preface this post by saying… I do not share our experience for pity or attention.  My writing is a way to help me process through the harder parts of our journey.  Sharing what I write fulfills a different purpose... Continue Reading →

Coming Home

It’s our first day home from the hospital and while I do feel great relief, there is also a weight of sadness plaguing my heart. I know this feeling. I recognize it because I’ve experienced it many times before. It is the resurfacing of grief.  The unique thing about having a child with a brain... Continue Reading →

Armpits and Toothpaste

The early hours of this morning felt like something right out of a twisted psychological thriller.  Oliver’s schedule is pretty off and he was still wide awake at midnight.  I lied down in the parent chair next to his bed, put on the tv and tried to rest, hoping he would fall asleep too.  We both started to... Continue Reading →

Hospital Life

Hospital life is a crazy life.   The pace of the people there is fast but the process is slow.  The stakes are high.  Reactions are quick and things can shift unexpectedly.  Ironically, the hospital is the last place you’d want to go if you actually needed rest.  There are rounds, vital checks, meds, meals, treatment protocols, social workers, dieticians,... Continue Reading →

1 Step Forward, 2 Steps Back

If, five years ago, someone would have told me that I would soon be a person who not only used a calendar, but absolutely depended on one to keep an insanely packed schedule of appointments straight, I would’ve laughed out loud. Calendars were never my style. I was way too carefree and laissez faire for... Continue Reading →

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