We were so incredibly elated to be HOME for Christmas. I don’t know what was the better gift this year… getting the new butt working or leaving the hospital and being home for Christmas! I wish that today had been one of those picturesque Christmas mornings with matching PJ’s, the fire going, the family all sitting around talking and eating… alas it didn’t happen that way for us, but we were home with all of our family around us loving and supporting us and THAT is what really matters. Kyleigh decided to hold out her poo until LATE evening. I was scared that she was not going to go because we had already given her the LT dose. Obviously Troy was worried because he emailed Joe while I was sleeping.

I don’t know WHY I am so anxious about this whole thing. I mean GEEZ my kid had her chest cracked open TWICE and I was not this anxious. Maybe its because I have not taken the time to have my breakdown. Its so amazing to watch my kids be so resilient. The boys woke up this morning and were happy that it was Christmas… they were the first ones to be excited when they heard Sissy yelling about wanting to get out of her bed and of COURSE they wanted to make sure that she opened her presents first. I wish that Ky had enjoyed her Christmas as much as the boys did but there is always next year…. Kyleigh is being extra cranky and she is entitled. Everything hurts her feelings… god forbid you say NO about anything. Huge alligator tears ensue from that. Her sleep schedule is WAY off… she did not take a nap today and that was hard. I however HAD to take a nap before I fell over. I felt bad ducking out and leaving the family sitting in the living room but if I did not go lie down I was going to fall over.

That is where our update ends… the rest of this is just me whining… so if you are not interested in hearing me whine then you can stop reading now. I know we have so many people all over the world who read for Ky updates and probably have no desire to read my ramblings about my own fears but this blog was started as my way to blow off steam and to have a place to unload and I will continue to do so. So here goes:

I looked myself in the mirror today and I asked myself “WHAT is wrong with you?” I have never been jumpy or “nervous” even with all of Ky’s BIG issues. I have been confident in knowing as much as I can, being as prepared as I can, and I just dealt with it and went on. Maybe its the fact that I am really bummed about going into the new year STILL not “done”. Maybe its the realization that truthfully while our “surgery” phase may be close to done… her ongoing medical care will never be done. Maybe its fear of the future. Up until now maybe I have been living with a narrowed view of life, kind of like tunnel vision – work toward the surgeries… get the surgeries done… get everything “fixed”. We have researched and talked to anyone we could find about what these first surgeries and years would hold. We have read on parent boards, we have found websites, read medical journals, chatted with surgeons online and IRL, we have done everything possible to have an idea of what would be happening this first two years. We were prepared. Maybe now I feel like we are leaving the “known” and entering the “unknown”. It could be the fact that the UNKNOWN has not been kind to us. Seems that anytime there is a question about something we end up with some new, lifelong, devastating diagnosis. With the laundry list of issues it takes FOREVER to figure out what is actually going on with Ky because any given symptom can usually be attributed to any one of 10 things. You make a list and start down the list of what it could be.

One of my good friends who is also an IA parent emailed me to say that she could “hear” it in the tone of my emails that I was definitely feeling a bit defeated. She suggested that maybe I could see a therapist. You know… up until now I have always felt like… I CAN DO THIS… I am stronger than I ever thought I could be, I will drudge on through and end up better on the other side. I am thinking maybe now I do need to see someone. Maybe if I PAY someone who has no opinion then I can just UNLOAD on them and feel better. I have hit a wall in that I cannot fix everything. I am realizing that not everything in life can be fixed no matter how hard you wish for it to be. Maybe a part of me thinks that I will never be able to “Fix” myself and that I am permanently damaged. But then I think… WHO ISN’T damage? I mean really….

All of these crazy, insane, million miles per minute thoughts running through my head… I am nearly sure that it is just me. Troy has pointed that out to me about 15 times in the past two days… I am just loosing it. And you know maybe I am. Maybe I should see a therapist before I go completely loopy and end up in a straight jacket. I am heading into the new year tired and confused and that is NOT how I need to begin a new year that promises to be as busy, hectic, and challenging as the last!

In the middle of all of this “unknown” there are a few things I do know! I do know that I am exhausted. Every inch of my body hurts. I have bruises in places I didn’t even know existed… I guess I must have beaten myself up in the middle of the night on that stupid pull out couch in the hospital! I tried my best to sleep anytime Ky did at the hospital. I mean every single time Joe came in to talk to us I was out like a light. One would think I would be a little more rested!! Maybe I need to look up those massage gift certificates and go get a massage. Maybe I just need MORE SLEEP. I truly have tried to lay off the Xanax just because I know that it is “short term” but I may take one because I know that it will help even if its just for a day. I know that my house is a mess and there is wrapping paper everywhere, laundry to be done, Troy goes back to work tomorrow, and I could really care less about getting anything done tonight.

If you are still reading pray for healing, peace, comfort, and rest for Kyleigh. Pray that this will not affecting her appetite that we have worked SO hard to build up. Pray for clarity and peace for our minds, strength for our bodies, and a renewal for our souls. I think my biggest issue right now is that I may have lost hope that this is going to get any better. Admitting that is the hardest thing that I have ever come to terms with in my own mind. We thought this surgery would make things better and now I realize that it is just a new set of issues and worries. Most of all pray for grace, guidance and HOPE.

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