Entry 22: They say you shouldn't hate...

Posted by Sherri Viner on October 31, 2017 at 12:40 AM

I sit reflecting on our Disney trip. We’ve been planning for over a year so it felt like the day would never come but now that we are past it, it feels surreal. It’s a bizarre mixture of feelings. I loved seeing Nicholas and the rest of the kids having the time of their lives. But to be honest I also have the crappy thoughts of “what if these moments are Nicholas’ firsts and his lasts.” Some may think that it is morbid to think the way I do. It may very well be. It may seem harsh to actually admit what I’m truly thinking, but it’s my truth. The only consolation to it all is that because the realities of finality are involved, we tend to become more committed in making all the living moments really count.

I watch the video compilation of our trip over and over again. I’m so thankful to have the memories we made but I’m so damn mad that I also fear having to watch it one day as not just a look back on the past type video, but as a collection of “last time” videos.
I hate that I let my mind wonder to that place and it feels so familiar.
I hate that I’m in this constant state of fighting the light against the dark.
I hate that I’m so sensitive. Like when AJ says “die” when he is innocently playing with his toys, I have the immediate gut response to correct him and tell him not to say that. As if just saying the word makes it truer.
I hate that we constantly have to think 3 steps ahead of every situation. What will our kids do, what will someone else kid do, how do we minimize exposure to germs, what did our kids touch, what did someone else’s kid touch, does anyone show signs of being sick, are our kids showing signs of being sick, etc.
I hate that when we are out and we have to feed Nick through his gtube, people uncomfortably stare. Part of me totally understands the curiosity or even ignorance of some people but it’s the other “look” we get which is of pity or even disgust.

I hate that even if we get past Nicholas’ next surgery or surgeries, that he will always feel different and isolated.
I hate that I can’t control this and just fix it.
I hate heterotaxy and congenital heart defects.

Categories: October 2017

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