I was sorting through images to put in our “year end” family slideshow and found this image. I shot this when we were in the hospital in Cincy for Kyleigh’s PSARP surgery. We were packing to leave for home and I was looking around the room one last time to make sure we were not forgetting anything and I lying on top of the supply cabinet I saw this. It instantly brought tears to my eyes and I realized what I was seeing. I picked up my camera because I felt the need to document it. At the moment I just thought about how it would help us remember the week we had spent in Cincy but I did not realize what it would mean to us now.

Now, three months later, we sit here. We are on hold once again. We thought that by the time we hit the PSARP surgery it would be smooth sailing. We were wrong.

This image is more than just a picture. It is the summary of the year 2007 for the Schmidts.

On the surface its just a black and white image documenting our hospital stay but when you look at it again you realize that it is much more. I laid awake in bed last night thinking about it.

The syringe lies in the foreground. It dominates the image. It is clearly in focus. Just like our life. The passy and other toy lies in the background…. unless you are looking for it you might even miss it. This is our life. Kyleigh’s medical issues come first. Many times they dominate our life and we miss out on the “normal” part of her life. There has never been a question in our minds that we would go to ends of the earth to make sure that Kyleigh gets the best care possible that has been very clear from the start. And just like the passy that is out of focus… many other things have fallen by the wayside. Also very significant is is the blurring of the passy and other toy. They are not clear in the image. It is not clear when our life will ever go back to focusing on our family and normal life. My biggest fear is that even when it does… I will not know what ot do with myself. I spend so much time and effort of Kyleigh’s Medical issues. I think about what I will do with all the time. How I will function when I no longer have these things to focus on.

No family should ever have to deal with this. Sissy’s passy lying there alongside the syringe of antibiotics. I had to read the name a second time because I thought it was narcotics. She missed her last dose of the good stuff because she took her own IV out. The fact that our baby girl has been on so many narcotic drugs in her short life that she is now hard to sedate. The drugs are less effective on her so we are left to choose. Allow her to experience pain or give her more pain meds and deal with the effect later. Its so powerful and poignant. The things that we have been through just to keep our princess alive.

This is what our entire life has been about this year. Keeping our baby girl alive. And you know… if that is all I have accomplished this year… I am okay with that. Its one hell of an accomplishment and maybe the proudest effort of my entire life.

It has been two weeks since we stepped foot in a hospital or doctor’s office. That may possibly be the longest period of time that we have EVER been without medical intervention. It is a little weird. No appointments, no decisions to make, no emails to answer or send, no stressful trips to the ER. Maybe this is a glimpse of what lies ahead.

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