Prior to leaving for Marshall’s Carnegie Hall trip, Cherrie and I made a decision it was time to launch her Youtube Channel.  Cherrie was the driving force behind us starting our Family Vlog.  The biggest issue with the Family Vlog is that the family wasn’t vlogging!  Go figure!

She is a phenomenal storyteller.  Her imagination is captivating at times where we all just sit there and enjoy story hour.  At other times, not so much.  However, as we have been exploring different things to find Cherrie’s “Thing” it kept falling back to, all she wants to do is PLAY.  The more I thought about her playing the more irritated I became.  The more I thought about my twelve-year-old acting like a kid the more frustrated I became.  Then one of my friend’s mom said “Don’t complain about that baby not wanting to grow up.  She could be doing stuff that would make you pray for her childlike ways.”  It was in that moment I got over it and realized her ability to live in this world and have an imagination untainted by other children, by social media and by television is amazing.  When I was twelve I still played video games and played with dolls.  We didn’t have social media, we had our imaginations.

With that being said, we launched her Youtube Channel while we were in New York

To have a child with narcolepsy means having a child that “looks” normal but cannot function normally.  Her sleeping patterns are rarely stable.  She has panic attacks and sometimes displays symptoms of ADHD and Dyslexia.  No one has diagnosed her with either of the last two but her “impressive” case of narcolepsy gave Children’s Healthcare a run for their money.  Understanding that we have to fully be prepared to help her cope with the outside world, especially in a place like New York City, is no small feat.  This isn’t our first vacation, but its the first one is quite some time.  You can read about our Disney World Experience to see how we learned to help her through her struggles with the Disney Disabilities Pass.

 

I began preparing for this trip to NYC the moment we found out Marshall would perform at Carnegie Hall.  I knew Cherrie would go with me, I just didn’t know at that time no other adult was coming.   I had to accept that if she didn’t want to leave the hotel, it was not a problem.  The only thing she wanted to do was go to the American Girl store and we did just that!

As you can see, she had a ball.  Granted we did stay in the hotel for the remainder of our trip.  She wasn’t up for sightseeing nor was she up to walking the streets of New York City.  I learned during Disney she can’t handle large crowds.  I learned in NYC her scoliosis may be worst then I thought.  It may be time to look into more than weekly adjustments.  I’ve never heard her complain about her back on this level, so that’s another thing we will add to the list of priorities.

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