My body, in its irritatingly accurate alignment with time, woke me up at 5:29 this morning. My very first thought was “Oh thank god, it’s still nighttime.” Annddd this thought was followed immediately by the dreaded sound of my alarm and a very angry protest from my exhausted mind. https://videopress.com/v/iRTFDySz?resizeToParent=true&preloadContent=metadata But although I am unlikely to ever... Continue Reading →
Sometimes in life, you encounter mud. Icky, sticky Mud. To borrow a few lines from one of Oliver’s favorite books, “Can’t go over it. Can’t go under it. Can’t go around it. Got to go through it!” And indeed, we have been going through it. In late May, Oliver caught his first virus since the... Continue Reading →
For families like ours, being judged, shamed and criticized about the decisions we make for our children is an unfortunate part of our daily life. And you know what? I can’t say I blame people for that, because most people dwell comfortably in a world of absolutes. This is right and that is wrong. This is natural and... Continue Reading →
******Trigger Warning: Traumatic Birth******* As she pulled my son from my body, the sound of silence was deafening. That iconic wail of a baby’s first cry was absent from our birth story. Instead, she laid a beautiful, blue-tinged little babe upon my chest and began to rub his limp body vigorously. It was in this moment that our... Continue Reading →
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?
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 →
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.
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 →
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 →
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 →