Down the rabbit hole

It seems like I've been struggling these last months to catch up to all that is happening in my life. I get to where I think I'm within reach of getting a handle on things and then something else jerks it away and I'm struggling again. The other day they were playing Alice in Wonderland at the hospital and all I could think is that I fell down the rabbit hole. This new world is the same as my old world and yet it's so different. Nothing is as it appears. Most days my baby is yellow. Feedings involve tubes & pumps not bottles. Beeping is so common I don't even notice. Burping my baby involves a syringe not a cloth. Asking "Did you flush?" has absolutely nothing to do with a toilet. There is a constant loud hum in the background. This world is filled with poles, and pumps, and tubes, and cords, and syringes, and medicines, and tanks. My cell phone recognizes more medical jargon than a second year med student and I spout it out like a second language. This is my world. This is Tim's world. This is Kristyna, and Miranda, and Ethan's world.

And this is Brady's world. My beautiful beautiful boy. Who looks absolutely perfect. Who is so very sick. His body is betraying him. It is slowly destroying itself. And it is slowly breaking my heart. But I have to be strong. Strong like my boy. He fights so hard so I will fight with him. He will never ever carry this burden alone. Mommy will be by his side always. We've gone down the rabbit hole together and no matter how crazy things get down here in Wonderland I will hold tight to my precious Brady. I will never give up hope that one day we will find our way and come through the looking glass and the world will be the way it should be once again. I just have to hold on...