28 March 2014

Yesterday I made my second trip back to Philadelphia since Hayden died. Both trips were for a very special boy named Weston, and his remarkable family.  The first trip I made was in December of 2012. We had just started Hayden's Heart and our first mission was to help the Keeton family. Our first fundraiser was dedicated to Weston and his family but since it was around the holidays, we also wanted to provide Weston and his 6 incredible siblings with presents on Christmas day. So Julie, Weston's mom, provided me with a wish list for all 7 kids and I shared that with all of you.  And you all came through- our upstairs bedroom was filled with gifts for the Keeton kids!! Once all the gifts were wrapped, my friend and I made the trip to Philadelphia to give Julie the gifts for her children.
I of course didn't know it at the time, but that would be the last time I ever saw Weston. He was out of the hospital and looked AMAZING. It was the first time I had seen his face without a breathing aparatus covering it- or one hanging from his neck. He looked so good. I just couldn't believe it. It was an emotional trip for me to make- but seeing how good he looked- I just couldn't stop smiling.

Yesterday I went back to Philadelphia. This time for I went for Weston's funeral. I was so scared. The entire ride I sat in the back with Hudson and cried off and on. Just the thought of why we were going was too much for me to handle. I kept thinking about Sunday afternoon when my phone rang. When I saw who was calling- I knew why she was calling. When I answered I asked 'why are you calling me' but I knew why. Weston passed away. Weston went to heaven. Weston was with Hayden. Weston's family had just lost their son and brother. It was too much for me to take. I dropped the phone to my side and my emotions just took over. I cried and wailed so loudly that Jackson came running into the kitchen hanging onto my leg asking me 'mommy what happened? mommy whats wrong?' I couldn't stop. I couldn't pull it together. But Jackson persisted. So I had to pull it together. I got down on his level- pulled my shit together much as I had done 19 months ago- and told him Weston went to heaven. His reaction was very different this time- he knew what that meant. Tears welled in his eyes and his lip turned down. He said 'I'm sad mommy, I miss Weston'- he only met Weston once but prayed for him daily- and he also knows more than any other child what it means when someone goes to heaven. That they aren't coming back- and that it's sad. So he hugged me for a bit but then went back to playing at which time I went upstairs and continued my what I call ugly cry- a cry I've gotten quite used to having and prefer to have it alone.

The entire ride to Philadelphia and all week I've been thinking about Julie, Adam and the kids. How they are just starting this journey of grief and how the beginning for me was so so ugly. And just hoping it isn't the same start for them. Julie had written to me that she felt at peace that he was no longer in pain and I was hopeful she was still feeling that way.

When we pulled up to the church I was prepared as much as I could be to see Julie-Adam- the kids- fellow heart moms and of course Weston's caregivers from CHOP- who were also Hayden's.
Hugging Julie is all I've wanted to do since I got that phone call. I remember people hugging me and me trying to let go but they wouldn't- and thats kinda what I did with Julie. I just wanted to keep hugging her hoping that what I was trying to say but couldn't form into words was being sent to her through my hug. All I could say was 'sorry- I'm so sorry'. Because what do you say? Nothing...

The service was beautiful, sad, happy, special- what it should be for someone as amazing as Weston. I laughed and cried several times at the stories people closest to him shared and was inspired by the words the chaplain spoke about holding onto anger and pain- and how bad that is for the soul. So as I left yesterday I was prepared to cry the entire way home like I did on the way there, but I didn't- I again left Philadelphia with an unexpected smile on my face- a smile given to me by a 7 year old hero who fought the greatest fight I've ever known and even though he died, he didn't loose his fight- he won. He won because he touched and changed thousands of lives in his 7 years here on this earth- and even still changing them after he is gone.

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