I don’t know the answer to that question. I know what was supposed to be. Today by this time Kyleigh should have been in surgery. Joe should have been closing her colostomy. We should have been nervously waiting in the waiting room. Today we should have been closing this chapter of our life. We could have been DONE with the colostomy. I thought I would be really sad today and to a degree I am. More than sad I am disappointed. I never really allowed myself to believe that it was actually going to happen. Even though I saw Joe write it on the calendar. Even though we scheduled time off. Even though we were getting all the paperwork and tests together. Even though we had a PLAN! Somehow I knew it was not going to happen. Deep inside me I feel like she might be 2 years old before we get rid of this thing.

Exactly one month from today we will be at Comer’s Children’s Hospital in Chicago. We will be sitting in Dr. Frim’s office. Hopefully getting some much needed answers. I hope that this time next month we will be making some decisions and getting this process moving along! We will have already had the MRI that we have fought so hard to get. I hope that he will be showing us the x-ray and answering our pages of questions. I truly hope that he will be telling us that everything has resolved itself and that we should go home and get our colostomy closed in peace.

I say out loud that I think that there really is nothing that big wrong with Kyleigh’s spine and brain but deep inside… its kind of like the bladder issue. I want with all my heart to think that nothing is really wrong and that everything will be fine and that Dr. Frim will tell us to go home. But something inside me knows. Something just isn’t right. I keep telling myself that I am just paranoid and that my mommy radar has finally lost it and gone off the map!

That inner turmoil that was gone after our meeting with Joe has returned. Every minute of every day you feel tense and your body aches. You feel like you could throw up at any minute. It sucks and I hate it. You really have no idea what it means to be peaceful until it is gone. Peace is a powerful thing. If anyone knows how to find peace in the middle of “waiting” please let me know. Its like holding your breath for a month. How long can you go without passing out?

For the next month I am going to make it through the Christmas rush and get our studio shut down for the season. I am going to deck the halls at our house and get it clean and ready for the Holidays. (I LOOOOVE decorating for Christmas!!). I am going to try and be at peace with everything that has happened in the past year and look forward to moving ahead in the new year to come.

I talked to a friend last night and she will kill me for posting this but we were talking about God’s sense of humor. She said… well God has to have a sense of humor… I mean he made bugs whose butt’s light up!! I told her I really did not think it was funny that Kyleigh was born with out a butt… and that sometimes I wondered about God’s sense of humor. Her reply was … “well if her butt lit up it would be funny…” I about laughed myself silly! True… so my suggestion to God: If you are going to make kids without butt holes… at least let them light up!

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