Guys! I used to be terrible at this....

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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 is, however an important topic to bring into the light and to stop feeding in the darkness.
I’m getting better at living in the moment, not near where I’d like to be but better.
You see, when our son was born sick almost 8 years ago it opened my eyes to an unprotected world. A world where mommy’s kisses and daddy’s hugs don’t make everything all better. A world where big, beautiful, and slightly terrifying hospitals just for Children don’t only exist, they save and maintain lives daily.
Seeing life get flipped upside down not just for your family but for the hundreds you meet on this journey is daunting. It makes you question your faith while clinging to it like it’s all you have left. Sometimes, it trickles down into other areas of your life. Areas you used to think were always going to be okay and now you’re web mding your 9 year old's symptoms and are convinced here basic leg pain is some, crazy, incurable disease. Your world used to feel safe and protected. You used to think that praying enough, or hoping enough, or loving enough would take the bad away. False. Although, I do believe in miracles I believe they look different now. Miracle don’t look like complete healing and a comfortable life anymore. Miracles look like a newborn baby crying when you expected silence. Miracles are shaky walking when you thought crawling was all you’d ever see. Miracles are holding it all together when it feels like it's all going to fall apart. Miracles, are believing you have the BEST life when the world from the outside is just waiting for you to fall flat on the ground and not get back up. This life, this crazy, hard, amazing, chaotic life is indeed a miracle in itself.

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