Willow's Wishes

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...