Read personal stories from our founder and Jennifer's mommy, Libby, along with other Warrior Moms and news from our Unravel team.

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Seattle in pictures

February 18, 2016

 

Seattle was great! So many memories made.. and difference to be made. We gave over 130,000 into the hands of some incredible and dedicated researchers. Thank you!

I didn’t tell Jonathan until the night before our trip that we were going somewhere and he didn’t know it was on a plane until we got to the airport. Then I told him every single step before we did it. That seemed to be the perfect rhythm for him.

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We were on seriously the smallest plane I have ever been on. My 5 ft tall self could easily put my bag in the overhead compartment. I am not a good flier so that didn’t help!! The last time Jonathan was on a plane was our Make A Wish trip. On the flight we talked about those memories…
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Bridgette was perfect!

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Until we got to the hotel. Then she freaked. Jonathan got right up on the bed to settle her down. I love my kids so much it hurts. This moment is why I tell people 2 kids is easier than 1!

But we were ready to get moving ASAP. We wanted to make the most of our few hours of dry daylight hours. I told him it would be cold and lots of walking but he swore he was ready….spoiler alert he was!

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We headed for Pike Place market which was perfect. Later on a weekday afternoon meant it wasn’t crowded. Jonathan is by nature very reserved and shy until comfortable. So I was concerned how he would feel in a crowd. This picture of him is so “him” I asked him to stand next to the pig and he was so concerned about how to do it.

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Same thing at the gum wall…that he thought was so cool. As we walked the whole trip we had moments …of moments. Just quality conversations where we both got to know each other. One point he turned to me and said this is what I thought buildings in a city would look like.. Getting to walk with him and talk about what we each liked abut a city and didn’t like…Those conversations are priceless.IMG_0391

We start allowance in kinder. He has been saving money and couldnt wait to get himself something. .. And then something for Nicholas and Charlotte. He was so proud to spend HIS money.

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But like any good kid his favorite thing was eating out…

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Like any good mom I didn’t tell him what he ate until afterwards.. Those were truffle fries he inhaled.

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I almost titled this blog sleepless in Seattle. .. But this beauty I rented (yes I rented a swing!) saved me..At least a little of the night my handful of a baby slept.

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But no matter how much she keeps me up at night she greets me with this gummy goodness smile and all is forgiven.

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We got up early to take the monorail to the Space Needle. Bridgette wore this hat much of the trip. It wasn’t Jennifers but reminds me so much of her because Charlotte wore it so often those final few months. Especially strapped to my chest on our Disneyland “I finished radiation” trip.

 

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Space needle was my only regret of the trip. Just not worth it for us. We did leave our names though..

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But since it was a bust we headed to the Science museum. And Jonathan loved it. Well eventually. He was just not in a good mood the whole morning. He ended up actually getting lost for a bit at the museum and that seemed to totally change his mood somehow.  It wasn’t long.. but enough to re-boot him. We planned to go back after going to Fred Hutch but ended up not.

We arrived and I could tell he was super nervous on the way. I realized maybe that was why he was so off earlier in the day. And Bridgette was screaming her head off. The poor uber driver couldn’t get us there fast enough. She actually was really good the whole trip.. minus our time at the Hutch. I wonder if she could sense the “stress and nerves” for me and Jonathan. I am actually very compfoirtabe with the whole team, they are just that welcoming and caring.  My anxiety was centered around Jonathan and how he was doing.
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They had lunch and a presentation all ready for us. But Jonathan was having none of it. Everybody tried to talk to him..gently and kindly. But he was just so overwhelmed. At one point he was about to cry… I wasn’t totally sure why, but I just ran interference. Later he told me.

“Mom I wanted to be there.. to hear what they were saying and meet them. But i just didn’t want anybody to see that I was there”

Its hard in the mind of a 6 year old I think .. to want to hear the information about what stole his sister.. and want to hear about how we are raging against it.. But also the vunerabity within all of it. So I just sat on the ground in the back with him.

I would whisper to him things to help him connect and better relate to everything being shared. I have noticed since we got home he is trying to incorporate those words more often into our lives… things like hypothesis and experiment.. And he is passing it along. I don’t know when they have the talks but Nicholas is telling me the things Jonathan has told him about Seattle and what he learned.. pretty awesome.

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I had been thinking about her ring the whole time leading up to the trip. Until we actually went. I had forgotten about it, which I think was good. Until we actually stumbled upon it. It was a surreal moment. . Hard to explain it. But somehow I feel like this picture captures the emotion of the moment for me..

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Pictures don’t do it justice at all.. It is simply incredible! I have no idea the long term plans for it but I told Tony if they sell it we are selling the house to buy it! (he did not think that was a logical plan) Bah.. for the logic.

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I loved the saying on this piece.. It struck a chord with me. The truth of it so stark.

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We got to see the lab and a brand spanking new robot they just got. My favorite part of seeing that was all the adults gathered around gawking at it. I honestly couldn’t understand the amazingness of the robot but the adults just transfixed by it gave me an idea of the magnitude of it.

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And by this time Jonathan was warmed up.. Getting to walk around and really look at everything .. He relaxed into it and seemed to really start to enjoy himself.  I just love this kid, and watching him learn and try to truly understand what he was looking at it hit me,  how very glad I was he came with me.

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Then we went outside to present the check. They looked Jonathan in the eyes and truly and sincerely thanked him. I hope he absorbed it. My kids all give up a lot of their lives to Unravel and I think I forget to thank them for that.  It just shows how incredible this team is that that know that and genuinely are so appreciative of the support.

Bridgette was grabbing onto my picture necklace of Jennifer the whole time we were outside. .. I knew.. somehow I just knew then and when I saw the ring she was making her presence known ..

She was part of the moment. Of the trip. Of the change that is coming. As are all of you that fluttered with us this year. Thank you. From me. From Jennifer. Thank you. 

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We called a uber to go back to the hotel and it had this sticker on it.. Pretty perfect.

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That night we walked and talked..And found a random foose ball table in the middle of the city.
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The next morning I gave him the choice of tv in our room or a walk to the one part of the city we hadn’t been to, pioneer square. He chose the walk. And I got to teach him some of the history of the city. These are glass windows on the street that used to be the ceiling (totally cool city)

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It was an incredible trip. And I am so excited to see what the money we were able to give to Dr. Olsen’s team can do. But I know one thing.. without a doubt it will make a difference.

we are in this together sissy miss

all of us

and you.

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…until there is a cure..

  1. Karen Zoucha says:

    Love!

  2. Ann Kolovyansky says:

    Anytime you are here in WA and need a ride, or a home cooked meal, drop me a line, I would love to help out! What a wonderful trip it sounds like you had and what an honor to give to Fred Hutch. Thank you!

  3. Coyo Anhder says:

    Libby,
    I want you to go back to this post when you are doubting yourself on what a freaking amazing mother you are! All you need to do is look at the pictures, look at the love, admiration, and pure joy in your eyes when you look at your children, when you listen to them. Because, Lib, you are one of the few moms who actually stops and listens to her children, like with all your heart, ears, eyes, soul, and mind – listen. Your pride and love shows, the spark in your children’s eyes show…this is pure and honest love. Please come back to this always and remind yourself of how amazing you are. Until there is a cure.
    Love you tons.

  4. Tracy says:

    I just LOVE this blog! To see you smiling. And to Jonathan smiling! I love mother/son bonding time. Perfect!

  5. Rachel says:

    What a great trip! I’m so glad you got to share it with your boy!

  6. Kristen says:

    Wonderful!!!!! xoxoxooxox

  7. This blog post about the trip is awesome. I’m so happy that the trip turned out so wonderful. Jonathan is an amazing little boy. Sensitive, yet strong. And you…you are an amazing mother. You may not realize it, especially in your darkest moments, but you give every bit of yourself to your children, even when there is very little of yourself to give. The pictures you shared here are beautiful (I especially love the picture where you are making a goofy face at Jonathan, who is smiling for the camera). And her ring…wow. Absolutely breathtakingly beautiful. I’m so very happy you got to see it in person. Thank you for sharing these precious memories with us!

  8. jennifer says:

    You are moving mountains Libby and I am so proud to be a part of Fluttering….ONE day there will be a cure and your Jennifer is right beside you, guiding your every move. So amazing to me on so many levels. LOVE4JLK always and forever.

  9. laura says:

    You have given Jonathan such a gift. In the old days parents hid everything and kids knew better…you are bringing him in to the story and sharing it and not hiding any of it. I believe it will make a difference in many things — hopefully in finding a cure but also for your sons mental health as he grows up…

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