A new normal.

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  No one prepared us for life as parents of a special needs child. Sure, we knew Case was sick. We knew he could die. We knew he'd have to stay in the hospital awhile, but when I took him home I thought things would slow down. I thought he would "catch up" and eventually lead a normal life. Things didn't slow down. He's not catching up, and his life is anything but average. I found myself (after 20 + months) readjusting my expectations and focus. He isn't going to catch up. His tubes aren't going away anytime soon. His left kidney will never get better and for every 1 problem that we've figured out, two more pop up. Someday we will probably get a main diagnosis (syndrome or otherwise,) and it could be terrifying. Please, don't think I'm Debbie downer or a "glass half full" kind of girl. I'm simply stating reality.

 With all that being said, this is our new normal. I'm not mad or in denial, because that wouldn't change anything. The fact of matter is, we are blessed. Blessed beyond measure with a LIVE, beautiful, strong, happy child. All I desire for him is to live a long full life. His life is not typical (nor will it ever be). He will face challenges daily. Yes, there is always a chance for a miracle,but for now, we are living  a new normal and in order to stay sane, we are taking our crazy life one day at a time!:)

My tubbing Tubie.

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