Friday, September 6, 2013


Today is one of those days when a slap in the face from a test or a doctor's appointment can really throw me into a tailspin. 

I am forced to deal with emotions that I don't know how to deal with.  I will never forget January 22, 2010 when our life as we knew it changed forever with Nicole's diagnosis.  A diagnosis that we should have found out years before we did. 

For the first year and a half after her diagnosis I would wake up every morning believing that I had just had a nightmare and Nicole wasn't really sick with a incurable illness that she will either die from or require a lung/heart transplant for her to be cured of her lung/heart disease but still not have a normal healthy life free of endless doctor's appointments, medications,  etc.  Every morning the realization hit me that it wasn't a nightmare it was my life and it was Nicole's life. 

It has been a little over three and a half years now since her diagnosis and I don't wake up every morning thinking I had just a bad nightmare.   I also check to make sure Nicole is still breathing and then I say a  prayer for Nicole for the day that she will have a good day and we will have no major medical issues happen.  It is the last thing that I think about before I go to sleep at night with another prayer that she will get through the night without a pump malfunction etc. 

I know that this will sound very negative and I don't mean it as negative as it sounds... our life as been hell with Nicole's illness and other issues that we have faced because of her illness... I know things could be worse and I am truly, truly grateful for that.  We have had many blessings also to go along with the hell we have experienced. 

I looked back over the last three years and  know that if it wasn't for my faith and by the grace and mercy of God I wouldn't have made it this far.  I don't know how I will make it through a future that will see Nicole get sicker or a possible transplant.  I know that if God brings me to it He will get me through it ... but will I be stronger for it or will I lose my faith because I can't understand how any of this is working out for the good?  I know I am not the only mom who goes through this with sick children I am sure we all do.  For me, I don't know how to do this every day and stay positive, not be bitter,  resentful, angry at doctors/God/myself  etc.  I do make sure I journal three positives from the  day every night and so far today I  only have a great parking spot up front at Walmart.  Some days it is so hard to find those three things and maybe it really isn't as hard as I think it is. 

My greatest positive every single day is that I have blessed with Nicole and no amount of hell or hardship will take that away.  I am blessed that she is stable for the most part and that things could be so much worse.  I am still able to give her a hug and tell her how much I love her. 

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