Willow's Wishes

It has been oh, so very, long since I have been here. As Willow is getting older, she still shines a light so very bright to everyone she meets, and we love that about her. She has been doing so very well in her everyday life that we sailed along each day without too much thought. Until recently. Setting aside any thoughts of the current status of the world, I want to take a moment to share how Willow has been.  She celebrated three years of surgery free back in March, and it was truly a happy moment for her and our family. She has never made it this far without going through another brain surgery. So we are very excited to see how her hair is growing, how she is growing, how her personality shines through. But lately, she has once again, experienced headaches, that kind of come and go throughout the day. This has taken place for much of July. She also threw in there a few days of being tired, still mobile, but more tired than usual and no real reason for it. Sometimes she gets emotion

I have said this many times before, but it is very true. When things are going well, it seems so easy to fall into the rhythm of life and not update all Willow's followers about her journey and how she is doing. It's easy to forget, if even for a moment, that at any time she could be taken down by a shunt malfunction and land in the hospital again. Last month, she celebrated 2 years of being surgery free. The day went as if it wasn't anything special because it is so easy for us to take her great days for granted. I don't want to fall into that trap with any of my kids, yet we do. It is just the natural rhythm of life that takes us on that journey. So how is this wonderful daughter of mine doing these days? Well, she is still in second grade and thriving! Her teacher is fabulous and truly encourages her, and loves all her little quirks and charm. LOL She is in scouts this year with her younger brother and they are loving the program that it offers. She is starting t

It has become so hard to keep up with this blog when Willow is doing so very well. But I am realizing it is just as important to share her life when she is doing great as it is to share the days when she isn't.  Her last surgery was March 2017. That means she has been surgery free for about 1 year and 10 months! That is an amazing thing to celebrate, yet we have not. We have stopped celebrating her 'shuntaversary' not because it isn't important to recognize, but because she doesn't want to be defined by the machine in her head, or the condition she has. So we honor her in that. Quietly thinking to ourselves how we have gone another day without an issue, in fact, we have gone almost two years!!  My goal as her mother is to once a month, update her blog on all the wonderful things she has accomplished the month prior. So here you will see the December updates. Now, of course, if there are some not so great moments, I am going to be honest and share those as well.

We are well into summer here at our home. It is a slightly different dynamic than in years past, but Willow is doing great! Willow finished first grade and will be moving on up to second in the fall. She was in girl scouts this year and really enjoyed that. She did really, really well in school. I am going to make a slight brag on her academic success which I try not to do (often), but then I go back to when we were given her diagnosis (which we now know was wrong), but I go back to that first day sometimes just to put things into perspective. We were told Willow had no brain. Nothing. Just a brain stem keeping her body functioning. The doctor said there was nothing he could do, and to enjoy the time we have with her. A few months later, another doctor looked at a second MRI and realized there was something off with the first diagnosis and we placed a shunt. Guess what?!  She had a brain!! But we still had no idea on what type of damage it had suffered. Well, in Michigan, as I am

It is hard to believe, as it seems like yesterday we were holding a newborn! Now that little one is 7! We have celebrated a lot as fall has changed into winter. and we are now in the long grips of it. She is having a great time in first grade, enjoying time with her friends, her amazing teacher and expressing herself in big ways. In the fall, she went on a field trip to a pumpkin patch on fell asleep on the bus ride home, then had a seizure while sleeping. We watched her for a bit, and in November were given the all clear with her. You see, there was some big news we were waiting to get word on, and so many of you were praying for GREAT things to happen. Sorry for the delay, if you don't follow me on Facebook, but GREAT THINGS did indeed happen. Willow's spot inside her brain stem is completely gone! The doctor of course has no idea how that can happen, an anomaly if you will. But those of us who poured our heart, souls and tears into God, the Universe, the Higher Power, kno

I was going to do an August recap for you all, maybe even an interview from Willow about how DC went and her first week back at school; but life happens sometimes. So I was not able to get those things done. Instead, I sit here, on the eve before National Hydrocephalus Awareness Month penning a blog entry to do this first day, of a very important month, justice. I have been trying to think of how I want to share information this month, via blog, Facebook, Instagram. Ultimately, I am sure I will share some things on all three. Please know that this month was a month that 7 years ago I knew nothing about. So if you don't know a lot about what hydrocephalus is, that is okay. Stick around and learn something! If you have your own journey/story with it, please feel free to PM me, or send email, or comments with your stories. I would love to listen. IF for some reason, you think you know a lot, have heard it all over the years you have walked along with us, then please feel free to ski