I am so tired inside. My body can take quite a beating and still kick without a noticeable lag… But my heart is drooping and dragging along. Two nights ago Poppy woke from sleeping with piercing shrieks of pain… It lasted about 6 hours with obvious peaks every few minutes. It took everything left in me to get us through the night. She is my daughter. She is 20 lbs of pure love and absolute light. I know I am a broken record – but this is not fair.
And then there is the ever-present guilt. So many mothers out there have children with ailments and prognoses far worse than hers…
But even the thought of such pain makes my chest collapse.
I am really ashamed of the thoughts that bash around inside my head. I know that I am intelligent enough to grasp the severity of this syndrome and also see the blessing in the undeniable fact that there are GROWN men and women out there living normal lives with this very syndrome – But I also see (three times this week) mothers finding their precious children
I sob with the thought.
Every single second of every single day I am afraid that she will stop breathing. I feel imprisoned. I feel tricked, betrayed, forgotten.