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Showing posts from September, 2012

..it's a brutally honest kind of day...

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i have a shit ton of stuff to do today, but that went to hell in a hand basket this morning when i opened an email to read that another beautiful baby and her family have joined the heart world.  i made the mistake of reading it at a red light which only led to sobs of tears. it's not fu*%ing fair!! these babies do not deserve this. i am so angry today.  so, so mad at the unfu*%king fairness of it all.  and yes i am cussing like a sailor today because well... because i can and because sometimes adding the f bomb for emphasis helps.  i have been doing pretty good, but today driving home in my mommy minivan i cried like i haven't cried in a very long time.  his birthday is coming up.  i have a lot of emotion pooling in me. and i saw photos of a beautiful baby girl who is fighting the fight, just beginning her journey. i saw a mama just beginning too. learning ropes no mom should ever have to learn.  god i remember every beep and alarm sending me into a full flipping panic in the…

the hearts gratitude....

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it's a word that I do not take lightly.  i have so very much to be thankful for as the years have passed along and i have learned a heightened sense of that for which i now find i was lost without prior. thank you paxton west.
the boy that has brought so many people together in a way that i did not realize was possible. i came to understand through the big blue eyes of my little boy that amongst the chaos this world tends to hold anymore, that people can, will and do slow down to reach out to those in need. those fighting fights they didn't ask to fight, but do anyway.  for that... i am grateful.

thank you.  thank you dear friends who have donated to such a wonderful cause. i have been still in writing this post because sometimes i don't know how to say thank you in a way that expresses how much it means to me, to us.  a simple thank you doesn't do it justice.
1.) that you take timeout of your day to check in on our tiny little corner of the world, namely a boy with …

Going there....

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I have been toggling back and forth on this post for quite awhile now.... Lately it's been eating at me a lot more than normal. I lay in bed at night and it comes over me.  All you moms of children with life threatening illnesses know what it is that I am speaking of.  It's all consuming.  The it, is that all consuming fear and worry.  One thought leads to another and the next thing you know you have devised a life changing catastrophe in your head.  None of mine have yet to see fruition, but I continue to let that abyss swallow me time and again.  Like a couple of weeks ago, when Paxton, who wanders into my bed every. single. night. of. the. week.  chose to sleep in his own bed all night and I awoke at 6 am reaching for him only to find that he was not there.  I immediately went there in my mind.
It went a little something like this...

...he didn't come into bed with me. something is wrong. is something really wrong jen or are you being dramatic.  is it mothers intuition …

Near and Dear

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Hearts...hearts of all kinds, healthy, whole, broken, fixed, new and old are very near and dear to me.  I never really spent a lot of time studying just how freaking amazing that organ is until I had no choice. My baby boy...he's got a broken one.  Even three open  heart surgeries later, it's still broken, BUT it's still beating.   He is still here with us just about to turn 3 years old.  As with every birthday of his (and my other boys for that matter) I drop to my knees in gratitude for that. There were many days I didn't know that we would ever make it this far... There are many that don't make it this far.  I still spend many nights wondering why us...how does he choose...  My whole healthy heart is drawn to other families going through this journey and I feel the stories,  their gains and their losses to my very core. I silently cry for them, many that I don't even know personally, only through the heart community. That community I speak of, it's huge!