“The day we met…frozen, I held my breath. Right from the
start I knew that I had found a home for my heart.” --Christina Perri
How do you hear “less than 50% chance she will be with you
at 12” or “profoundly disabled” or “failure to thrive” and then go home to life?
Dinner to make and conversations about school and
extracurricular activities.
How do you keep it together while remaining present in the
moment to take care of your typical children’s needs?
It’s an implosion of the mind, a tornado of emotions: uncertainty, fear, love.
Having to be strong under the weight of expectations when
you just don’t want to be.
Struggling to find the patience to deal with frustrated
physicians who are scrambling to play God with your child.
Knowing in your heart what is right, but not being able to
prove it.
She is PERFECT.
Since when did she break?
Her body and soul are to be loved and respected for their uniqueness
and beauty.
The craziness sets in…
Being forgetful and yet having to be responsible.
Loving so much that it hurts.
Alone in your thoughts and screaming to get out of your head;
the feeling of falling into a deep blue uncertainty.
Failure is the fear that drives.
It’s painful to hear, “we may be able to help her if we knew
what was happening”. It’s like watching someone you love drown, with your hands
tied behind your back.
Sometimes I just don’t think I will manage another day, and
inspite of the knowledge I will shatter again, somewhere strength comes, and I
pick up the scattered pieces and fix what has broken.
