Thursday, August 4, 2016


As I packed up the house we rented and thought about the time we have spent in New York, I feel the tears swell in my eyes.  This summer was more than just a vacation, it was a representation of starting fresh after everything we had been through with Sonzee over the past 17 months.  It was a chance for our family to become whole again and it was a chance for us all to grow closer as a family as well as ourselves individually.  I think I can speak for us all that this was the best summer since Sam and I have been married.

We spent the months leading up to this trip uncertain if it would ever become a reality.  Similar to how we face much of our life with Sonzee, where nothing is ever 100% clear or certain.  In a sense it is just life in general, special needs family or not.  When we finally purchased our plane tickets it felt similar to how it does after making a medical decision for Sonzee, still unsure if things would go the way we anticipated, but a weight was lifted from our shoulders because it was no longer in our hands.  

We spent 5 weeks tucked away from busy streets and jam packed schedules. Topped off with 4 days of fun at Hershey Park.  We spent 4 weeks away from any medical facility.  We spent 4 weeks relaxed and where we could actually take deep breaths.  It was a chance for me, specifically, to let go a little.  Sonzee has been off of antibiotics a record time for her entire life.  She made it an entire month without showing any signs of being sick.  While her seizures came back soon into our time away, she developed physically in so many ways.  

I wish we didn't have to leave.  I wish I could have frozen time while we were here.  Unfortunately all good things must come to an end.  That is also how it always seems to go for the good phases of our journey with CDKL5.   Ironically the symbolic nature of our vacation and what it meant in terms of starting fresh has come full circle. As we pack our things I am already scheduling an unplanned EEG for Sonzee when we get home so we can know what exactly is occurring in her pretty little brain.  Again the fear and worry are invading my mind in all areas, the mental vacation coming to a close as well.  Our vacation is over in so many ways.  The familiar lump in my throat has returned and I am trying to push the panic away.

As her epileptologist told me, there is nothing we can do now anyway with her being sick and worrying doesn't help.  While our summer in the Catskills and our journey up north is officially coming to an end, the images I see when I close my mind will be a constant reminder of the physical peace and tranquility that I felt here.  If I have learned nothing else over the last 17 months, it is that the coaster must go up and it must come down, but eventually it goes straight before either.  No matter how many ups and downs we face over the next 10 months I have already started my countdown for our return to the place where the track goes straight and we can start anew.

And just recently someone wise told me the best quote..."you have to leave in order to come back again"...words so true and so applicable to every situation.

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