Tuesday, January 17, 2017


Something that I have had difficulty with since Sonzee has been planning anything.  Life has been handled in more of an hour by hour manner which is both helpful and stressful at the same time.  I miss being able to look at the future and mark things other doctors appointment in my calendar.  It is not just that we don't know how things will go with Sonzee, it is also the mere fact that I have limited capabilities of processing things in the future and or having the energy to plan.  However, currently things have been calm.  **I might regret writing those words or even thinking them, but it is our current "now" and it is the truth.  With that being said, I am actually planning for our summer relocation already and I couldn't be more excited!

In 2014 we started a summer tradition to spend a month in New York.  In 2015 we unfortunately had to cancel after Sonzee began having seizures and our fear that they could turn into infantile spasms while we were away.  After missing that summer away, we decided as a family that in 2016 we weren't going to let anything stop us from the much needed and wanted summer away. We thankfully were able to pull life together enough to escape to upstate New York Sonzee finally escaped from the hospital in June.  I am beyond stoked that our tradition will continue in 2017 (G-d willingly).   I have marked the dates on the calendar,  have begun to fill out camp paperwork, sent in our request for the rental property and have even began the initial phases of planning our mini trip at the end of July.   

I know that things can change in an instant, but I am taking full advantage of our current calm as well as my renewed desire to plan.  I don't know if planning this far in the future is my brains way of ignoring the decisions that need to be made within the next couple of weeks in regards to Sonzee's feeding tube and formula changes, but regardless it is a nice distraction.  I have missed my type A personality and I'm so happy she is back for a visit.  I don't know how long she'll stay, so I intend to exhaust her for as long as I can.

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