Tuesday, March 16, 2010

Time to get real.....

Its easy to throw on a happy face and show the world how good your life is, its easy to focus on the fabulous parts, but it takes courage to tell everyone what goes on when the doors are closed and no one is looking.....inspired by Sarah who forges "Not so bright and shiny" I'm going to take a break from "Care Bear Land" and break it down for you.

I am in no way even close to in the same situation that Sarah is in, my heart breaks for her. I know that sounds cliche, but its so very true. One mother to another, her fight is inspiring and her courage and strength are awesome (not as in cool, as in the true definition of the word) I find myself in awe of her. I hope that I can find the same courage if/when ever I am in a similar situation.

The truth is that I feel terrible complaining at all when I know that there are so many other mothers like Sarah, and like Breck
who have more complicated situations than I do at this time. But the truth is that I'm tired, and I haven't even started yet.

I got a call from a Hill-Rom representative who assured me that we would have Natalie's vest by the end of the week. I don't want it, I don't even want to go there, having the nebulizer that we had was acknowledgement enough and now that it is gone (we cleared her pseudomonas x's 12 months of cultures) We are getting an even bigger, bulkier, scarier piece of machinery. I just want it to go away. I want to wake up tomorrow and for this to be a really looong really bad dream....that just isn't going to happen though.

Natalie doesn't eat well, this is not new information for those of you who know me from CysticLife. I am constantly trying to find something that the child will put in her mouth and swallow besides apple juice. Scandishakes save us on days that she wont eat, but she's already on an appetite stimulant....just what exactly is it going to take to get her to eat consistently? I don't know, I cant really complain about her weight right now, but the problem is that she loses it so quickly and for no reason at all, she goes through spurts and if I am not 100% on top of it, it could get away from me without even realizing it.

I feel like I am always on edge, always on the verge of breaking down, constantly beating myself up (not literally) From the time that I wake up to the time I go to sleep, I am counting calories in my head, calculating the number of enzymes she needs, assessing and reassessing the situation all day long, exercise, approximate the number of calories burned during exercise, the amount of salt lost during sweating that needs to be replaced, its mind numbing and when I lay my head down at night, I'm kicking myself because, "I could have tried this for her to eat" or "We should have stayed outside longer" or "stupid stupid, you forgot the clorox wipes for the shopping cart handles" "Periactin, yep both doses...nasonex, yep, vitamins, yep, oooh darn i didn't watch her, hopefully she didn't hide them under the sofa cushions again....cpt....oh cpt, was that long enough? it wasn't long enough, maybe it was...do better Juli, you've got to do better"

I don't let it show though, I keep up a good front. People look at her and say, "oh, she doesn't look sick!" I just want to grab them and shake them and ask them "DO YOU HAVE ANY IDEA WHAT I GO THROUGH TO MAKE HER LOOK THAT WAY?" But the truth is that they don't have a clue. I'm trying to do fundraising, but I feel like people are tired of hearing me....or maybe I'm just tired of hearing me. I don't want anyone to feel sorry for us, I don't want pity, I just want someone to understand. I want them to understand what it feels like to be pretty sure that you will out live your child, I want them to understand what its like to place your hope and faith in God and at the same time in a pharmaceutical company who may or may not have the answer to our prayers in their lab, I want someone to think before they complain about their lives....I want everyone to understand exactly how precious each breath is, it shouldn't be taken for granted.

I go to work and I do the same thing that I do at home, give medicines, assess, reassess, call the doctor because I am the nurse, I solve problems, and I chart to show everyone exactly what Ive done about each situation, If I cant handle it then they go to someone who can, but whatever happens, I fix it,.....but I cant fix my baby.

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