A Journey from Darkness into Light
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 →
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 →
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 →
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 →
Ahhh Napa … I love the long drive leading to this enchanted destination, where smiling faces and warm greetings meet you at the door. It’s a place where the burdens of life melt away and suddenly the day seems full of lightness, hope and absolute possibility. At Napa, positivity flows freely, quenching the thirst of all... Continue Reading →
Today was the day. After nearly a year of appointments, phone calls, follow up phone calls, disappointments, more phone calls and a whole lot of waiting, the growth kit for Oliver’s wheelchair was ready to be installed.They’re funny… These simple things. So much emotion from such simple things.It was a hurried morning to get the... Continue Reading →
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 →
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 →
As many children with Cerebral Palsy do, Oliver also has epilepsy. He doesn't have very many seizures but when he does have one, it doesn't stop on its own. Although we have rescue medication that we carry with us at all times, it has never actually worked. So we are left with only the choice to... Continue Reading →
Oliver's Odyssey 