I should learn how to surf. Maybe if I PHYSICALLY knew how to ride the waves then it would be easier to do it theoretically. Probably not but its always a thought. Well after such a great day on Tues / Wed we had to know that Thursday was coming. Thursday brought another day with Hannah Horton which has been the most welcome relief of the year. Just having her to sit with Ky while I work or am on the phone. When Ky doesn’t feel good she is very needy and wants to be held 24-7 and I just do not have enough arms to do it all. But Ky has ended up with the most AWFUL Diaper rash I have ever seen. And that is saying something. Truly it makes my skin crawl to see it and I KNOW it must hurt like hell. Really she has a 2nd degree burn on her bum and it blistered and popped so now its just raw (sorry if that is TMI… but I will refrain from posting the pics… they are pretty awful). So I am trying to get her bum well and she is backed up again and I am afraid to clean her out because that will mean constant poop on the already ailing bum.

And then I went into her room today. I was cleaning it and wiping down her bed and changing table, changing sheets, etc. And I just lost it. I saw her beautiful bedding set sitting in the corner of the closet that has been all but destroyed. The Canopy over her bed no longer hangs perfectly with its dainty ribbons flowing down. The paint is eaten away from her changing table and there are tiny teeth marks all up and down the rails of her bed. I shed some tears and while doing I thought about how this room is so symbolic of her life. I remember opening that brand new PERFECT bedding set (which my wonderful MIL payed WAY too much for because it was the PERFECT princess bed) and running my fingers over its elegant fabrics wondering what Ky would think of its bright stripes and polka dots. I remember that I moved her furniture in her room around three times before she was born and the last time I dressed the bed, and spent nearly an hour PERFECTLY tying each of the ribbons onto the bed rails. I remember folding the blankets and placing them at the end of the bed and sitting a pink stuffed animal on top and thinking… this is PERFECT.

Fast forward to a scarred bed, bedding that is nearly torn to shreds, sheets that are un-useable because their fibers are all but falling apart. Bumper pads that are stained with blood from her picc line and laxative poop. And I sat there in the middle of her floor, where I had sat before she was born with all the hopes and dreams in the world of our perfect homecoming and pictures of her princess room and I thought about how I never saw this coming. How her body is scarred by the awful things that have already inflicted her. I thought about how those scars will never go away from her body or from our minds. I thought about how this bedding was much like our life and her medical issues. There is no one who can help us .. but us. We are left to fend for ourselves here. To push, to fight, to make things better. So you know what, I picked myself up off that floor, put away the clothes stripped her bed of the OLD sheets and bumper pads and took the mangled canopy down.

“Its time to start over” and that is just what I intend to do. I got online- ebay and was looking for a new bedding set for her to match the new sheets that have been so graciously sent to us. And then I thought… we don’t have the money for this. And truly we don’t. Its ok though because someday soon… I will restore this room to its former PERFECT PRINCESS glory. Even if I have to MAKE IT with my own two hands it will happen. Just like everything else in our life… I will make sure that it does… for her. She deserves it!

On a lighter note – Hannah also totally totally rocks the laundry thing! With her helping I have gotten more laundry and clothing sorting done in the past two weeks than I had in months. I finally feel like I might be getting ahead there. I managed to climb in the attic and get Ross’ shorts down ( from the stockpile) and just on time as the summer heat has finally hit Ky this week.

Speaking of climbing. Ky has learned to CLIMB. Not just a little she is a real monkey. The other day she climbed up onto her changing table and decided that the window, curtain, her hair, dress, and changing table needed a little vaseline. And powder… and wipes. Yeah… what a mess! I cannot believe that I actually was able to GET the vaseline out of her dress. It was her surgery dress from Neurosurgery so I am glad that she did no ruin it! And I just could not even find it in my to be mad. I was too busy laughing. Funny how life’s circumstances will make you appreciate things.

EDITED: I edited this post to reveal the identity of H.H. It is Hannah Horton. So, if you want to send her a message on Facebook or post to this blog if you want to help us in thanking her.

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