and I go right back there. I can remember just how it smelled. I remember how the cool air blew on the back of my neck while I slept and how the horrible plastic chair made me sweat even though I was freezing. I remember the exact shade of gray in the flecks on the tiles, the exact yellow blue and green shades on the curtains. I feel my chest get tight and my heart races… instantly my whole body is tense and once again I am overtaken by it all. The beeping of so many things, the swish that the glass doors made when they were opened. I remember the sound of the footsteps and flowing coats as they came down the hallway and how I would pace waiting for them to open our door. I remember the faces of every single nurse who took care of us during our nearly month stay in Cincy. I wish like hell that I could remember their names… and I should have written them down.

What will haunt me the most is that I will never forget are the tubes… I remember the exact location of every single tube, line, lead, iv, if, central line, art line, and O2 monitor… and these tubes and lines and leads that were saving my baby’s life… I hated them… in a way that I cannot explain. I took out all my anger on those tubes. Maybe they were just a distraction … maybe I needed something to be mad at and hey at least I was mad at the tubes and not at someONE!! But I remember being so angry and knowing what scars those tubes were going to leave on her…. and I was just angry. If there was ONE thing I wish about this ENTIRE thing… I wish that I had gotten to hold her for even one minute before they ravaged her body with tubes, and scars and colostomies, and feedings tubes…. I hate it for her that she will be FORCED to explain when she doesn’t feel like it and people will stare no matter how badly she wants them not too.

Maybe as a heart mom I am more finely tuned and know what I am looking for … maybe normal people would miss this … but the Urology PA who placed Ky’s foley cath… I saw it when she leaned over … that tell tale midline scar… hers was a nice one maybe a more recent one. The bridesmaid at a wedding… and I never say a word to them …. NEVER. Because I think that one day that will be my Ky and maybe just maybe… she won’t feel like explaining it that day…

So to those people … the ones that I see those scars from afar … I want you to know that I smile in a special way at you. I hope that you can feel the fondness in my heart that I would never speak out loud but is there nonetheless.

Monday will be the one year anniversary of Ky’s SECOND heart surgery. I can feel my chest getting tight already… I am truly glad that we will be heading to her Pre op for her neurosurgery… that is the light at the end of my tunnel… to know that we are one step closer to possibly the end of surgeries for a while!! Monday will be one of the hardest days for me. I know it. I can feel that unrest in the depths of me. It was teh surgery that we were unprepared for… the one I hadn’t planned or anticipated… the one that blindsided us. I am afraid that monday will be the day that blindsides me. Maybe it was a bad idea to make our Pre-op on that day………………. now that I think about it… definitely a bad idea. I might just call and change that Monday. Maybe I will just cancel the whole d@mn thing and not worry about it at all.

And then I come back to now… and NOW while it is different than a year ago… is no easier. They told me it would get easier. They lied.

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