I am sitting here in Kim’s quiet house realizing that yet another month of our life is gone. Another month spent riding the Kyleigh Coaster and waiting… up and down and everything in between. We have been here in Springfield since Thursday and it just doesn’t feel like its been long enough. Troy and I were talking about when we were going to pack up to go home and I just thought to myself… I just want to STAY. Stay here in Springfield with my girlfriends.. laughing until 3 am about things that would not be funny earlier in the day. I want to stay here where I don’t have to answer the phone or email. Where I eat and sleep when I want to. I want to stay here in Springfield where I don’t have to think about hospitals, doctors, appointments, supplies, nurses, or phone calls. For four days I have felt almost normal. That tightness in my chest and aches all over my body have been gone from me and for just one weekend I realize how I never quite appreciated the quiet and normal until it was gone.

Its a heavy thing to realize that you are driving back into the fire. Back to a place that makes you feel sick and tired. A place that immediately when you think about it you can barely breathe and you instantly feel the panic. Just talking about going home made me almost have a panic attack. And it sucks. It sucks to not want to go home. I wish I could pack up the boys and move here and stay here. Why? Because here… my Kyleigh is just Kyleigh. The sweet calm beautiful baby that she should be. She is not a patient, or a specimen. She is not “poor Kyleigh” or someone that everyone is afraid to touch. She is not the stinky one or the complicated one. She is just Ky.

So here I sit on the verge of tears wondering how I can possibly bring myself to go back to that world. To that place that is so cruel and hard. Where she is poked and prodded… cut open and sewn back together. Examined over and over again. I just want to take her away to the ocean or to Disney World or Springfield, IL. I want her to go somewhere like here that she can just be a normal baby.

I want to say thank you to Kim, Sarah, Heather, Trisha, Jana, Deb, Beth, Jonnie, and Melissa. Thank you for helping us to feel normal for 3 whole days. Thank you for making me laugh until I nearly peed my pants. Thank for the great pumpkin arrangements on the front porch and the hand gestures at dinner. Thank you for not looking at me like I am crazy when Troy and I discuss “the fiber” and all things colorectal and bladder. Thank you for staying up late and not being pissed of when Ky wakes up at 6 am. For the inside jokes and gaining 10 lbs. For 3 days I was able to just enjoy being. I never forget but the pain of life… sometimes it becomes overwhelming… this weekend we were just Troy, Amber, and Kyleigh. We weren’t a cause or syndrome, a diagnosis or a procedure. I wasn’t the OCD basket case … I was just me. Thank you ladies for allowing me just to be me and to enjoy my daughter and husband. I can make it another year until Smootfest 2008… although I think we should do this once a quarter at least! LOL It has been an amazing weekend and I am not ready to say goodbye.

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