I dreamed a dream

As a girl I dreamed like most girls of the family, the love, the wedding, and lastly the children.  Never in my wildest dreams did I think that life would be such a ride.  I did what most young women do and that is be crazy in my very early 20's, get married young and start having a family.  I married for the wrong reasons not the right one's.  Now yes I did love my ex however I should have walked away all those years ago when I thought he wasn't ready instead of saying yes.  It has however given me my wonderful little boy whom I would not have imagined the way he is at all.  When he was born I was instantly in love, what a gorgeous baby he was.  2 years later life was shattered with his PH diagnosis. 2 years after that my heart breaks again for him.  In the past year he has changed all his medications as others either didn't work or eventually over time they lost their effectiveness.  Adam is now on our last hope and is maxed out so the little stinker has to behave himself! No more burning through meds, or ph crises allowed!!! We have had a tough couple of months and somehow have weathered the storm.  When I look at him the emotions are so conflicting it can be confusing. I look at him in awe with how well he handling his newest medication which is the Sub Q IV 24 hour infusion of Remodulin which is very painful.  He is such a trooper and somehow can still smile through it all.  I also look at him with heart break and tears behind these eyes, he is in so much pain sometimes.  That boy inspires me because no matter how crappy my day I am not battling a terrible disease that will one day most likely win. How do you not break down and cry when your 4 year old begs you to stay home because strapping him into his car seat hurts both his arms so bad. Soon his arms will settle and life will resume.