Willow's Wishes

We are very quietly approaching the four-year shuntiversary for Willow. This is the longest she has ever gone without needing a brain surgery for her shunt; whether that was a revision or a whole new replacement. As parents, we always dreamed of the time when we wouldn't have to worry so much about Willow, her shunt, headaches, symptoms, and so on. But honestly, that was very naive of us. We absolutely do still worry about those things, and in this day of the Covid pandemic, of course, we are a little more on top of research, studies, medical findings, and such. We are finding though that the worry is far less than within her first two years of life, or even the first seven. You see, she is ten years old and has gone through seventeen, yes 17, brain surgeries. So, we will always worry, but now, our worry is less and actually surrounded by more knowledge.  She has learned what her headaches feel like and so while she has them frequently, they are less in pain than she used to descri...

This blog is so hard to keep current when things are going well with Willow.  She has exceeded expectations that were either set for her or implied.  She is surgery free now since April 2012, and while we still have some days that leave her dad and I wondering - she is actually thriving! So, what do you share about a child that is considered Special Needs, or Medically Fragile, or just one who has a story to share but life seems 'normal', 'quiet', dare one say - 'ordinary'? Well, Willow is a star. Her personality lights up a room, her smile and her eyes just light up when she is happy, or has an idea, or wants to share something with you.  She is just a bubble of spunk, and she is doing GREAT!  As I said, surgery free now 3 years and 7 months, walking, running, jumping, flipping off our furniture (against my wishes), swimming, sliding, hop scotching her way through life. She has great fine motor and gross motor skills, she is speech delayed (and if you ask h...