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 →

Happy Birthday Niccolo!!

Being the little brother of a special needs sibling has it's perks and some downsides too. On one hand, there's tons of super cool equipment to climb on, swings bolted to the ceiling of the living room, a therapy center that seems to be your own personal playground and PLENTY of trips to the doctors... 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 →

Simple Joys

Hot showers have always been one of my most favorite things in the whole world.  When I’m tired, sick, stressed, worried, sleepy or wound up… a hot shower is always the cure to my ails.  I love the calming caress of the water as it falls over my shoulders, melting away the tension and easing my worried... 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 →

When Therapy and Terror Become One

There are 1000 different situations in which a special needs parent will need to summon superhuman strength. Today was one of those times for me.  We agreed to do a special session of Cuevas Medek Exercises (CME) today with the woman who trained many of the Napa therapists. I honestly can’t say enough positive things... Continue Reading →

The Alchemy of Experience

Sometimes I barely recognize the person I’ve become. I took this photo just before walking in to confront our respite agency about why they aren’t staffing our hours with competent caregivers. Five years ago I never could’ve imagined dressing in this conservative outfit and coolly and confidently walking into an office to deal with an... Continue Reading →

Fighting for a Voice

Victory tastes so sweet after a battle hard fought.  And oh have I fought. For the last 3 years I’ve done everything in my power to give my son a voice.  I’ve made hundreds of phone calls, attended seminars and conventions, pleaded doctors and therapists to help me, hired company reps to come to our home, and... Continue Reading →

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