Thursday, April 7, 2016

Thank You

It can be really challenging when you find yourself in a situation where you are accepting of generosity to communicate the appreciation that is being felt.  We have been so fortunate to be on the receiving end of so many selfless acts of kindness since Sonzee's diagnosis.  There are so many "thank you's" that need to be expressed publicly that today's blog post is dedicated to all of YOU.

When people ask me if we have help from our community the answer is without a doubt "YES".  To me the definition of "our community" spans greater than the physical confines of Phoenix, Arizona.  Our community of Sonya's Story tellers continues to grow and expand and with each growth we welcome new and amazing people into our extended family who offer assistance in various ways.  You are all so greatly appreciated.  You are all important.

Whether you "just" read my blog posts or like the pictures that are posted to her Facebook page, you are showing your support.  Whether it be a more physical assistance and you are dropping off dinners on a routine basis or randomly stopping by with dessert.  Whether you have taken the kids after school for a play date or dropped them off at school in the morning, you are amazing.  Each call, text, Facebook message, and/or email is appreciated so very much.  If you have purchased a Sonya's Story item from us or from one of our side fundraising campaigns that help us raise awareness of CDKL5 and simultaneously send money to the IFCR to help us find a cure, you are doing so much more than you think.  Each post that you share, each person you say the 5 character string of "CDKL5" to, brings new members to our family that will fill a new purpose.   Each day that you check-in on Sonzee is another moment that you are deserving of a pat on the back.

If you have a personal business and have donated your proceeds or a percentage of your sales, you are amazing.  If you pray for her health and happiness G-d is listening and he hears your prayers.  If you force me to take "me time" I am so very thankful for the respite and I know Sam feels indebted to you. YOU all are making this journey easier on us.  YOU are all making this journey bearable.  Because of all of you, we know we are NOT alone.  

To those of you who came to visit and sat with me at the hospital and those of you who were privy to seeing me fall apart in person you were fantastic at your "job".  To those of you who watch the bear weekly and love on her in person...that is so incredibly meaningful to us.  To those who offer medical advice and special needs wisdom to help us navigate the path, it is hard to show how much that has meant and continues to mean.  To those of you who message me with a recommendation, I may not share that we are trying them but trust me, even if others (myself included) might find them to be ridiculous, it IS being tried.  We are just so amazed by how much YOU all have made Sonzee bear part of your lives.  She is one special little bear to be able to snuggle her way into each of your hearts without much effort.  Thank you for making her part of your hearts and life.

It is extremely challenging to put into words the impact you have all had and are having on us and we appreciate YOU so very very much!!  THANK YOU, THANK YOU, THANK YOU...although that still doesn't feel like those words are enough.

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