I know that a big change is coming in our life. I can feel the restlessness in my soul. I always do this. My inner self is always a lot more anxious than I will allow my physical self and mind to believe. I have learned to make this life and this journey normal. I have learned to balance Kyleigh’s medical needs and the daily needs of the rest of the family. We have adapted to this new “normal”. The colostomy care, the cathing, the supplies, the meds, the special diet, the heart monitors, the feeding tubes, the doctors appointments, the online forums, the new friends….. the new system each time a new milestone roles around. This is life as we know it and its all about to change.

I sit here and I can’t seem to make myself go to bed. I feel like I have so much to do to prepare for this. It should be EASY. I should be totally and 100% excited and I am. But its also very emotional. Its kind of like a RE Birthday. This is the day that SHOULD have happened on July 13, 2006. The way our life is ABOUT to become in how it should have always been. There are so many emotions. I have even thought about being mad… for just a minute… but I can’t find it in me to be mad. What is there to be mad at? Certainly not at Kyleigh… At life? Nope… our life has afforded us many opportunities to meet amazing people that we would have never known before. Our life has changed us and shaped us. While our life may be insanely busy and challenging its ours and we love it! Can I be mad at God? What good does that do me? He and I have had our differences and I have said what I needed to say to him but that won’t change anything. Whatever is meant to be will happen and there is not much I can do about that.

Am I happy? Happy, that I had to spend literally months of my life sitting in hospitals? Nope… Or dealing with insurance and stressing about money? Or counting and sorting and reorganizing the constantly growing and changing stack of supplies and meds? Nada.

So how exactly do I feel? I am what I like to call “numb”. Its a feeling that is all to familiar for me. I know that the date is coming close. For a moment tonight I thought “This time next week we will already be in the hospital”. I try not to get my hopes up because hope can be crushed and that is one of the worst things in the world. I try not to be excited because I am afraid that it won’t happen and then I will have to deal with the disappointment AGAIN. For this surgery it would be the THIRD time. I try not to be too emotional because then I look like a basket case (which I try only to be in the comfort and privacy of my own home). I try not to be sad or scared or anything else because truly I am not those things. So for now, I will just be numb. It is a defense mechanism that my body and brain have learned and it works out pretty well. I will enjoy it while it lasts because sooner or later some other emotion will win out and that is never as easy at the numbness. I think I have figured out that this numbness that I enjoy so much may not in fact be “numb”. After hearing the following statement I believe that it is grace and peace settling into my heart and mind. What a powerful thing.

A good friend of mine on our IA Parent’s board posted this. Someone was giving a talk to their special needs parents group about God’s grace:

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