Wednesday, October 24, 2012


I feel like lately I am at a loss, and as I try to continually to gather my self I just cant seem to keep up with all the changes life has held for us... I have tried so hard taking CF head on, putting my big girl boots on, battling another day for my Roo, not focusing on the negative but trying to embrace the positive... It is frustrating daily as you try your hardest to allow your son to do the things every other kid does knowing how much harder it is.. I am faced with his disease with EVERY pill he pops, that is 30 reminders everyday, I am faced with watching him do HOURS of being plugged into machines as he does endless breathing treatments and vest treatments... I watch him cough for hours on end every night after he plays baseball, wishing that just once JUST ONCE he could go home and CHILL like every other kid instead of having to hook him back up to machines, and load him up with more meds... A very lonely world as you  desperately try to blend your child in with all the rest, yet making sure he eats those nachos during a game knowing he HAS to have the salt in order not to pass out on the field, or drinking and eating in front of his classmates, as you try to explain to people or defend yourself as your son looks so healthy on the outside, and many have no idea the ravaging disease that is slowly destroying him on the inside... Many care but dont really understand CF if they have never been around it and some others quite frankly dont care, yes that may sound cold but true.. Dont get me wrong we have an AMAZING group of supporters who love us and love lane and have been a huge source of hope and support for us along this journey, but sometimes it only takes one person to take you out emotionally...  So as a parents you try you hardest to give him the every opportunity to fulfill his goals and dreams, yet are constantly worried about what affect each choice will have on him....  I am never able to escape the dark demon in my mind that reminds me of the the ticking time bomb that resides in my child, a thought that never ever EVER leaves a mothers mind, no matter how hard I try to think of the positive or redirect my attentions, I seldom am able to look at my son without knowing that and any moment things can change... I feel like I am constantly trying to pick and choose my battles as I am often just trying to survive what life unfolds. Constantly trying to nurture the entire family and not allow CF to take away from all our children. Trying to nurture relationships with friends and family when I often am stressed and just trying to make it through the next round. Trying constantly to just not be stressed is a battle all of its own... Battling myself to stay healthy, as the last year tested us once again with me having to battle cancer.... Sometimes it feels never ending.. The one thing I have tried very hard to do is keep us with our other CF warriors and their families as they continue to fight this unforgiving disease, and today I couldnt do that, as I started to read about one of our dear families I just couldnt do it, tears rolling and my heart heavy I just couldnt do it.. and I didnt, I just logged out and walked away.. Not because I dont love them, Not because I dont weep for them, but because my heart cannot take it today, it is such an unfair world...We love all our family and sometimes the mind just cannot take another sick child, another broken mother, another CFer lost to this battle and it just broke me today...     AND it quickly reminds me that we I need to make sure I am positive, caring, continue to try my best to nurture life and ALL the people in it. Many are battling something, some may be battling nothing, but everyone is worthy of love, in the end that is ALL YOU HAVE...

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