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.