Nobody told me that the sweet baby I called "Grandma's gift from God" before she was ever born would make me question my faith and if there really is a God more than anything in my life ever has.
Nobody told me that there is no such thing as stable.. because every single time you think you are in a good place something always happens.
Nobody told me I'd have PTSD and stress anxiety related to all things Madilyn and medical.
Nobody told me I'd be filling out Advance Directives (DNR) "just in case" my child codes during anesthesia or something happens with her Adrenal Insufficiency. Her quality of life, not quantity, has always been top priority.
Nobody told me how exhausted we would be.
Nobody told me just how much we'd actually have to give up.
Nobody told me how hard we would have to fight for absolutely everything.
Nobody told me how many aspects of our life we would come to hate.
Nobody told me that even on the worst of days when I go to bed thinking and sometimes even saying "I can't do this anymore"... that I would get up and do it all over again without even batting an eye.
Nobody told me that it was humanly possible to actually have such a love/hate relationship with your life.
Nobody told me that the phrase "we just don't know" would become the norm yet so unbelievably unacceptable yet accepted at the same time.
Nobody told me that the what if's would so acceptably just become the when's.
Nobody told me that there is no way to prepare yourself for the child that your fear is greater that they will outlive you than if they don't.
Nobody told me that when I really have to go toe to toe with doctor's it's because of my gut instinct because with a one of a kind child like Madilyn there is no precedence to base things on.
Nobody told me that someday I would completely understand how some parents walk away. It is still not something I would ever choose to do, but, I completely understand it.
Nobody told me how much I would learn from her.
Nobody told me how much I would love her.
Nobody told me that no matter how frustrated I get... I still don't know where she ends and I begin...
Nobody told me that who I am would be completely intertwined with who she is.
Nobody told me how much the things I crave the most in life... sleep and silence... would also be my biggest fears.
Nobody told me just how hard I'd be willing to fight for what I believe is best for her.
Nobody told me all the people that would walk out of our life.
Nobody told me how much we would hurt or just how huge our capacity to love is.
Nobody told me that there would be days that I hate those pink fucking shoes....
Nobody told me so many things... this list could go on and on and on...
The one thing I will tell you is that no matter how hard it is, how much we hurt, how frustrated we get, how alone we feel or how much we love/hate our life in any given moment is that we would do it all over again in a moment with her. We learn to live in the moment and try not to get lost in the dark ones. We prepare for the what if's and the when's hoping that they are not right around the corner... and we continue to focus on those little pink shoes...
