This last week has brought about a terrifying change in Olivers epilepsy. Twice now he has stopped breathing during his seizures. It’s not because he’s choking. He just stops. All inspiration and expiration ceases, he becomes eerily still, and his heart beats so hard that it shakes his g-tube button. These seizures are different than... 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.
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 →
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 →