Summer changes

It has been a week since our adventure on the east coast began.  The fantasy of this experience has been building up in my mind for about 2 years and more so since we paid the deposit on the town house rental back in February.  When Sonzee landed herself inpatient in May, we quickly realized that our planned summer of tranquility and family bonding might not occur in the way imagined.  As June approached at an insanely fast rate, this trip felt slightly out of reach.  Similar to a person reaching out their hand, but they are just a fingertip shy of being grabbed.  Thankfully, in this case we were able to get a grip at the last minute.

I am not naive enough to think that by flying multiple time zones away that Sonzee's challenges and our predicament will simply vanish.  I know no matter where we go or where we are that things will not drastically change.  Sonzee is not going to have a functional CDKL5 gene just because we are in a calming and cooler climate.  Yet, somehow the fresh air, the ability to take multiple outdoor walks, the chance for her to swing and go to an outdoor park in the middle of summer are making this journey a gazillion times better.  

The fresh air of the Catskills is doing wonders for all of us as a family, I especially.  The kids are able to run wild and free outdoors.  They walk to their friends and play in a grassy field with other children and I am able to fight my urge to be the helicopter mother.  The pace is ironically slow for us being in New York.  There is only camp drop off and pick up besides Sonzee's medication alarms that provide an actual schedule.  I have been able to spend more quality time with Sonzee's siblings, my patience is slowly growing, the weights and pressures of everyday are slowly lifting.  I am so glad this summer dream was able to become a reality, and I look forward to making many more memories this summer and in years to come.  Sometimes changing your environment can actually change your perspective in more ways than can even imagine. 

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Drained

This week has been especially exhausting.  While having four children and one with special needs could never be classified as a refreshing daily spa extravaganza, this past week has really taken a toll on me.  I have not fully recovered from my solo parenting gig while Sam was back east for 4 days.  I give MAD PROPS to those of you who are single parents...  (Please take a moment to pat yourself on the back while I clap my hands in a standing ovation).  I feel drained and just completely empty in all areas.  I almost feel as if whatever energy I had in me has been sucked out with an industrial vacuum cleaner, removing the fight I usually have from within me.  I am so burnt out from having to advocate and fight for literally every single thing related to Sonzee.  Why do I even need to fight?  I cannot comprehend why insurance companies, hospitals, doctors’ offices, the state system, etc. have a system that is essentially so broken that parents need to go to war for the tiniest little things.  I can only say that clearly those in upper level management have only had healthy family members, and g-d bless them, but so not helpful for me.

My body is tired, my brain is tired, my eyes are tired...there is literally not one part of me that is just not over it.  If I had a motto this week it would sound like Dane Cook in "Nothing Fight"..."...I don't even care...zzzzz...I don't even care...don't even care...”  My patience is thin, my tolerance is low, I have zero desire to blog, and I am definitely not in the mood to smile.  So what I have decided is that I am going to wallow in self-pity for a little, then take advantage of the amazing gift of me time that was donated to me this morning and I am going to get a large iced coffee afterwards.  Then I am going to smack myself across the face, paste on my smile, get some big girl panties on, and start my weekend in a much better place.  This way when Monday rolls around and I have to resume the chaos of crazy Zaila family life, I will be able to tackle it head on with a much better attitude.

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