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I Love You So...

February 15, 2018

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I Love You So...

February 15, 2018

 

Yesterday, I had the privilege of speaking at Vertex Pharmaceuticals on behalf of the Cystic Fibrosis Foundation.  This is the second time I've spoken at Vertex's Great Strides Kick Off.  The kick-off is a little fundraising lunch Vertex does for their employees on Valentines Day, where candies and flowers can be purchased and the funds go to the CF Foundation.  I'm one lucky mama to be asked to do this twice

 

Last year, I told Avalyn's story; how we found out about her diagnosis, her stint in the NICU and what her life was currently like.  

 

I cried the whole time I was talking.

 

Initially, and for the last year, I thought my tears that day were a mixture of nerves and the retelling of a very large, emotional chapter in our lives.  But, it wasn't until yesterday that I realized those tears are more about the sheer surrealism of the moment. 

 

This year, I was asked just to give an update.  Avalyn was with me at Vertex last year and they were excited to see her again yesterday.  They were all just curious; what has this last year been like for Avalyn?  Which should be a very easy topic to discuss.  I was sure that if I went in there, without a formal speech, and just chatted casually that I wouldn't turn into a blubbering mess.

 

I was only half right.

 

Before I started talking, I noticed a Vertex employee crouched on the ground, reading a book to Avalyn.  We packed some "entertainment" for her to keep her occupied while I was talking and she must have handed him the book when he went over to see her.  Avie was turned all the way around in her chair, completely engrossed in a book I'm sure she's heard a hundred times.  This employee read the little book cover to cover, all while kneeling down on the linoleum floor of the lunch room.   I can't even kneel on carpet that long!

 

As I was watching the sweet scene unfold, I was informed of what that man's role is in the company.  This man happens to be the person who receives and dissects the infected lungs of CFers who may have passed, or gone though transplants, and donated their lungs to science.

 

This man who has toiled over the lungs of countless individuals, whose disease had progressed to the point that the organs were no longer useful, was reading "I Love You So" to my daughter.  

 

You're ugly crying right now, aren't you?  Yeah.  It's okay.

 

So then, it was time for me to talk.  I started with a congratulations to Vertex for the FDA approval of their latest drug.  Huge news!  I'm not sure how I managed to get the words out without melting, but I did.  I then went to just a brief overview of Avie's history for those who weren't able to attend last year.  I started my first round of tears when I touched on the fact that Avie was released from the NICU the same day that Orkambi was approved by the FDA.

 

Why cry there?  Well, I will tell you.  Here I was, in a room full of people whose JOB is to find a cure for my daughter, and I was talking to them about how much hope I was given that day we took Avalyn home.  The people listening to me speak, had all taken part in giving me that hope and strength.  

 

Somehow I was able to recover from my tears and continue talking, only to get choked up again when I updated them all on Avalyn's Pseudomonas diagnosis.  I've said the words many times and it obviously still hurts, but what really 'got' me was the collective dejection that I saw and felt go through the room.  Everyone's faces fell.  A few people sighed and most individuals took a long, prayer-length glance in Avalyn's direction.

 

I didn't have to explain what Pseudomonas was and why it sucks so much- and thank goodness because I actually had to stop and take a few breaths just to keep from sobbing.  The love and concern that everyone felt for Avalyn was so real.  It IS so real.  The people at Vertex love Avalyn, they love me.  They love the CF community and every day they go to work, they are fighting to find a cure.  We know this to be true because of their success with finding treatments, we know this because of their community outreach and their fundraising. 

 

I especially know this because I saw that love first-hand.  

 

 

 

 

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