I know everyone is needing their “Kyleigh fix”… so here she is… in all her spoiled glory!!

We had so hoped that this year would begin differently than past years with Ky. We had hoped to be home … with our princess … in our beds… with our boys. What we WANT and what we GET are usually always different things. Just like so many times in the past two years I find myself numb… yet again. Its hard to FEEL anything. We sit here in this tiny room and I am looking out the window thinking…. I wonder what temperature it is outside today. Yesterday I was headed out to go home to do a load of laundry and shower and someone was asking me on the elevator if I knew how warm it was outside… it almost brought me to tears. It had been 4 days since I left this place. The abosolute worst part about being in the hospital is that your life goes on without you. We missed Ross’ 3rd Birthday sitting here… Owen doesn’t even sound like the same kid…. and Kyleigh… its hard to really look her in the eyes these days. I know that Ky looks much better than she did when we started this journey. The docs come and go and they seem to think she looks so much better. Honestly as a mother I look at her and I see only a shell of the princess that I know. I see a very scared, sad, and hurting little girl. I see someone I had hoped to never see again.
When they came hauling the feeding pump back into our room I thought that I might cry. I thought that I might really have a hard time with it because I know that this is a major step backward… but honestly. I was relieved. Just like in Sept of 06 when we first brought her in for FTT… I was so relieved that someone was going to help Ky GET the nourishment she needs to grow. I am GLAD that we do not have to fight with her over every single morsel that goes into her mouth. I am hoping that this will bring some relief to her body that is so struggling right now. We are still waiting on our poop of the morning. We are going on 24 hours now waiting. I hate that. I hate that I have to WORRY about whether she can or will poop. I hate that I have wonder if her body will fail her yet again. I know that what doesn’t kill us will make us stronger but its just not fair to Kyleigh. One of us… that is fine… but for her… this is not the life I wished for. These images that I post… of her reading and playing… should NOT be in the hallways of yet another hospital. They should be in her room, with HER bed, and her toys. No parent and child should ever have to go through this. I wish that I had the magic key to unlock the world’s sickness and heal it. I know there is really nothing that I can do about it but I promise you… once I get out of here and get Kyleigh’s health issues all settled down I will find a way to make a difference. I don’t how or when but it will come.

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