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?
No matter how much thanks you give for a good fortune, it sometimes only lasts so long. It seems that we are now joining the ranks of the more seasoned epilepsy families. Today was yet another seizure day for Oliver. His 6th in the last 2 months. It was mild but long. Just like on Christmas Eve, he seemed to be under a spell, watching an aura, feeling something strange but almost pleasurable. Like maybe that feeling of losing your stomach when you go over a whoop-de-doo on a hilly road. Or maybe it's more like watching the wonder of the world unfold on magic mushrooms. Maybe he's meeting the Buddha. Who knows, man...
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 →
Wow! What a roller-coaster of a 24 hrs.! Yesterday, the school year got off to a rousing start with mommy completely failing the first day of kindergarten E-learning. Due to extreme sleep deprivation causing a total inability to concentrate on much of anything these days, I somehow misunderstood that there was, in fact, much more to... Continue Reading →
My tiny little angel with a great big heart and deep knowing eyes ... today we celebrate the 5th anniversary of our Birthing Day. The moment that you dipped your toes into this world, and then pulled them back, not quite sure if you wanted to stay. I’m so glad you did. ❤ I know that the... Continue Reading →
https://videopress.com/v/RLNv5T4y?preloadContent=metadata Let’s be honest. In the world of severe disability, there are not too many good choices. At each crossroads there is a decision to make and rarely is it clear which path to choose. Three years ago, sleep deprived to the point of near collapse, we finally gave into the option to give Oliver... 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 →
Before I had Oliver, I was very uncomfortable around people with disabilities. It’s kind of embarrassing to be honest about that, especially at this point in my life, but I wanted to open this conversation up because I don’t think I am the only one who’s felt that way. Often when I am out in the... 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 →