A Very Special Case.

Guys....I used to be TERRIBLE at this. Now, I’m just not great at it. Living in the moment. It sounds easy enough but really, it takes conscious effort to enjoy the good life gives you while NOT dreading what feels like the inevitable. Whether it’s another hospital admission, a decline in my son’s health or a new, scary diagnosis. It’s a mix of fear and anxiety. It’s total lack of control. It’s a lot of things but what living in fear of the future really is, is giving into the thief of living joyfully in the moment. Whether the fear is loud and noticeable or a consistent white nose playing in your brain, it’s toxic. Honestly, it took me years to even realize this is what I was doing. I knew I was worried all of the time. When my phone would buzz with a text form whoever was caring for my son or Case felt even slightly hot I started planning a hospital stay in my brain. I’ve planned hundreds of these that never even happened. This isn’t something I’m proud or even like talking about. It...

Guys, I still need you. We still need you. 7 years into this crazy journey I still don’t have my ducks in a row. Heck, I don’t even knew where half my ducks are let alone have them in a row...The truth is, when your child has a chronic illness or special needs of any kind, chaos follows you. It doesn’t end after a long admission or surgery number umpteenth. It’s always there, even on good days. When you parent a child who needs 24 hour care you tend to LOOK like you have it all together when in reality, you are like a swollen water balloon in a field of porcupines. Just take a moment to visualize that...a water balloon with arms and legs trying to navigate it's way through a treacherous field of horror. The moment it loses its balance or something goes wrong, it pops and then, it slowly picks all its piece up and tries to put itself back together. That’s me. That's all of us. The tired, the worn, the perfect looking, the crazy, the mom’s and dads of medical miracles. Most days,...