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...

In our house, Superbowl Sunday generally comes and goes without much fanfare. We are not sports fans by any means; but the kids and I will indeed sit down on this day and watch the game. Jonathan and I even pick teams as to who we think will win! This year though, we had another little event happen during our game. Just as the half time show was about to start, I was talking to Willow one minute; go to speak to Jonathan and then a minute later, look back at Willow who was now unresponsive, slumped over, and when her eyes would open - the eyelids would flutter and you could see her eyeballs rolling to the back of her head. What the heck?!   We have NEVER seen this happen to our little girl.  I call the oncall pediatric nurse, by the time they call me back, Willow is now responsive, awake and well. I explain what happened and we had also taken her temp (101); so nothing high at all. The nurse says that since she is awake and alert and responsive now, to just watch he...

So this last Tuesday evening Jon and I were invited to attend a lecture in Detroit about the Hydrocephalus Clinical Research Network, and current research being done. Long story short, it was a GREAT event that I feel truly blessed to have been able to attend. But what was funny about all of this, is that I was explaining the event to my brother, and told him that while speaking to a neurosurgeon there, he seemed to recognize Willow's name.  So, I mentioned her blog, the PHF, and he says that he thinks that must be it. Yet Willow then perks up in the back seat and says, 'Wait! Mom, you have a blog on me?' Then she goes on to ask what is a blog, is it like the tv show Dog with a blog? And what is it all about? I laughed a bit, and explained that her blog a story of her life. Her journey with hydrocephalus, which means I will talk about her surgeries, I tell people about all the good things she can do. How even though she has a shunt, she can do all kinds of amazing things ...

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...