Hi Everyone,

It’s been a tough, tough day. We have those but some days are just more difficult than others. When Corey is agitated it is difficult to watch and try to help her through. She comes in and out of varied levels of discomfort, frustration and anger. I try to keep her busy and distract her by stroking her hair, reading to her, using massage therapy, practicing standing or anything else I can pull out of my bag of tricks. We have a stress ball that works for part of the time until she throws it at me and then we play “catch”. I often think of Corey’s essay that started with; “when life gives you lemons, sometimes you want to throw them back at the person that gave them to you”. Tonight we were definitely throwing lemons!

As I sat to write this evening, the blank page reflected what was in my heart and mind. I felt as if I had nothing left and didn’t know how to begin to look for the words. I shut the page down to decompress by surfing the internet. There were no motivating words, quotes or stories that jumped out at me. Next direction is facebook and then my email and there it was; a letter from one of Corey’s girlfriends addressed to me.

This young woman shared stories and pictures of her and Corey confiding that Corey’s progress is a daily inspiration to her, how much she misses spending time with Corey and her excitement to come home in October to visit us. She also included a song by Taylor Swift that reminds her of Corey and their friendship;

Long live the walls we crashed through
While the kingdom lights shined just for me and you
I was screaming, long live all the magic we made
And bring on all the pretenders, I’m not afraid

Long live all the mountains we moved
I had the time of my life fighting dragons with you
I was screaming; long live the look on your face
And bring on all the pretenders, one day we will be remembered

Hold on to spinning around
Confetti falls to the ground
May these memories break or fall

And you take a moment
Promise me this
That you’ll stand by me forever
But if God forbid fate should step in

And force us into a goodbye
If you have children someday
When they point to the pictures
Please tell them my name

Tell them how the crowds went wild
Tell them how I hope they shine

Long live the walls we crashed through
I had the time of my life with you

I wiped the tears from my eyes to continue to read my letter. As I read I felt the energy and excitement in her words. She is amazed by Corey’s strength and accomplishments. I reread the lyrics and thought, ‘Corey is slaying dragon’s everyday’…today was just another battle and she’s still winning! I found the words to highlight today’s victory.

Speech is focusing on “H” words to force her breath control. PT commented that today’s standing was the “best yet”; Corey is gaining strength and did all the work. OT commented that when Corey is reading and writing on her board she is now looking at the board, tracking her eyes to follow her words and hand as it writes…this is new!

Corey even though today was a day filled with lemons, you continue to make lemonade! Despite how you felt, look at the success of today’s therapy sessions. You continue to fight the dragons, crash through the walls, overcome the hurdles and YES; the crowds are going wild because you truly are inspiring. Honey if anyone deserves a story book ending, it’s you! Happy dreams for a “happily ever after” xoxo