Sadness

The last 16 months have provided my girl with more opportunities and  a sense of normalcy that the first 7 years and 8 months of her life never did.


She went swimming.  She loves swimming more than almost anything else in the world!





She swam with dolphins.  Dolphins are her favorite animal.  *See swimming.


She was able to attend school without a medical professional shadowing her everyday.  She hated having that extra attention brought to her.  She was able to experience normal academia.


She was able to attend summer camp.  At her school, but summer camp nonetheless... She went on every field trip and made every art and craft and reveled in everyday just hanging out and playing with her schoolmates and friends.





She was able to go to aftercare at her school.  Some kids would hate being in aftercare, but she loves it.  It's the social normalcy that she has been craving for years. *See summer camp.


All of this because of a 1/8" tube.  At many points it was thing that maintained her life and breath.  After much medical intervention, it just became a nuisance.  Unneccesary.  A hinderance.


After 7 years and 8 months it was gone and she got to begin getting a sense of the real world, not the protective world that we had created for her.


Life began living.


Today that all came to a screeching halt.  We are faced with the possibility/probabilty of having to re-introduce that little shit piece of plastic that will turn around everything in our lives.


This summer, not only is she enrolled in her school summer camp (with weekly, sometimes bi-weekly, pool/waterpark trips) but I've also applied for her to go to two sleep away camps.  One week at the Florida School for the Deaf and Blind and one week at Camp Boggy Creek.  Both of these would be such incredible opportunities for her, if she is re-trached, that changes the acceptance factor...


No more swimming.  Being shadowed by a nurse, even if you don't need it.  If nurse doesn't show up, you can't go to school, even if it's on the day of the field trip that you've really been looking forward to.  No more aftercare and no more summer camp.


I've been struggling so much lately with the whole "G-d doesn't give you more than you can handle" and "G-d always has a plan"... I don't see what this plan is.  If you need to punish me for something, then punish me..  Why would this be punishment for this girl whose life has just begun?  A girl who has been through so much to get to this "normal" life...


If anyone can hit me up with an answer, feel free to comment... because today, I'm just sad...