Karen passed away four months ago. It was very sudden, even though she had been in the hospital. She had been in the hospital so many times – why would we think that this time would be any different than the other times, when she recovered and came home? But she didn’t. When Karen was transferred to the ICU that last time, she told me that there was a file on her iPad that had some things I would need to read. She said it wasn’t as complete as she wanted it to be, but … I said ok, but of course expected that I wouldn’t need to read it any time soon. I guess she knew better than I did. As we read the file the next day through our tears, we were amazed at how much guidance she gave us for when she was gone. One of her requests was that we continue to post on her blog. We talked about how to do that. Obviously, we couldn’t continue it as what it was, Karen’s journey, without Karen. Steve didn’t want it to be all negative, all about death. Karen wasn’t negative! So here we are, four months later, and this is the first post. I think this needs to become a place to share our memories of Karen, and also our journey through life now, without her here, which is just not how it’s supposed to be. I miss her every day. So here we go… Sorry in advance for the lack of organization, but I will at least try to avoid typos! (I saw this sign while we were out yesterday, and realized that Karen was with us.) I have composed countless blog posts in my head over the past four months, or at least the first few sentences of them. (I have also composed countless thank you notes in my head, and they haven’t been written either.) I even sat here at Karen’s computer and typed one, but it didn’t get posted at the time, so I had to rewrite, and rewrite again. Those first few days were so hard. We decided to go to Maine for the weekend, where my family was all going to be together for a long-planned party. It was a beautiful distraction from the pain, being among all of those people who loved Karen as much as we did, and going to some of the places she loved. The picture of Karen on the swing was taken in Maine, on Eagle Island, and on that visit, Steve took a picture of the swing, empty. Of course there was a castle cake, and she was there, in spirit, guiding the construction of the taco, along with chips, salsa, and guacamole. We spent the ride up and back listening to music, reading tributes to Karen on Facebook, laughing and crying. I believe Karen led us to a dirt road on a traffic avoidance maneuver in New Jersey. Who knew there were any dirt roads in that part of New Jersey?? The first month was bad, but there were the distractions of getting Matt and Susie ready to go back to school, and planning Karen’s service and celebration. We waited a few weeks, partly because we wanted to give people time to make plans, and partly because it was the first time we could get an outdoor space to have the party Karen wanted. We had a beautiful memorial service. There were so many people there; immediate and extended family, friends from near and far, people I’ve never met before. I loved hearing people share their memories of Karen, and how she was part of their lives. The party on Sunday was just what she would have wanted, with so many people, and so many activities that she enjoyed, being enjoyed by her friends and family. The taco bar was very popular, and hopefully a whole new group of people will make castle cakes, now that they know how. We are so grateful to her Camp Sunrise family for the tie-dye experience!! We all have wonderful reminders of Karen that we can wear as often as we want to. I have put the scrapbook pages people made into an actual scrapbook, and I plan to add the memory cards that people wrote, along with printed copies of the Facebook tributes and emails. All of that makes me smile through my tears. I wear some of her camp bracelets, and the other bracelets that she always wore, and her favorite necklace. As I fiddle with the beads on the bracelets, and the cat plays with the necklace, I think of Karen. The distractions disappeared when school started. I’m home during the day, and when I stay busy, things are usually reasonable. After all, Karen wasn’t always here all day, so for a while, in some part of my mind, I could pretend she was at school, or away somewhere. But then, reality would hit me, and it would come back. I would look at the plants people sent us (some of which I haven’t killed yet) and the pictures of her, and the velvet bag on the mantle, and I would just cry. That pretending method doesn’t work so much anymore, unfortunately. I drive to the grocery store, and I hear something on the radio, or see something that I would have commented on to her, and I can’t. Or I do, and she doesn’t answer. So I still cry. My sister told me I’m probably scaring people in the store, but I don’t think so. I don’t really think most people are looking that closely. Fortunately, I have great friends who call to chat (and understand when I don’t feel like answering!) or make me go out to lunch, or on hikes, or plan things to distract me at my birthday. So I don’t cry all the time – there’s laughter and smiles, too, which is a good thing. We have gotten so many cards and notes and gifts! Susie’s comment on all of that is that Karen always did get the most mail (that wasn’t bills, etc.) The outpouring of support and love has been amazing, and has reminded me over and over again how inspiring Karen was to so many people. To us, she was just Karen, doing what Karen did. Only now, seeing how many lives she touched, do I really see how incredible “just Karen” really was. I have been reminded that there is a time for all of us to die, and it was apparently her time, but there was so much more good she could have done. I just don’t understand why it had to be her time already, and so many awful people are still here. I love to see people post things on Karen’s timeline on Facebook, and send her text messages and pictures in Snapchat. (sorry if it creeps you out that I look at them… but I won’t respond from her account!) I’ve mentioned to some people that I’m so afraid that she’ll be forgotten, and it makes me happy to see people thinking of her as they eat tacos on National Taco Day, or running in her honor to raise money for a cause she would have supported. Karen had an app on her phone called Timehop. Eventually, I checked it out, and now I look at it every day. It’s like a flashback into her social media that day, with pictures and tweets and facebook posts through the years. I love it! Sometimes it makes me smile, and sometimes I cry. Sometimes I send pictures of the posts to the people in them, or to others who I think would enjoy them. I’m sure some of those people have cried and laughed along with me. We made it through the first Thanksgiving without Karen, David, and Dean. Even though David wasn’t at the family dinner last year, we could still visit him and talk to him (and get an answer!) All three of them LOVED family gatherings, and I sit here crying right now, hoping that they spent the day together, eating too much, enjoying some good company, and sharing their love with others. Christmas is coming, and we’ll do all the usual things, and it won’t be the same. I see lots of tears in my future. Choosing a Christmas card was very difficult! I couldn’t handle getting a card that said Merry Christmas, or Happy anything. Not feeling that, somehow… Some people said I should just skip it. Some people said I should swear at the holidays (on the card.) I didn’t want to skip it, mostly because this is the last year I’ll have all three of the kids on my Christmas card, and I couldn’t not do it. (In the end, we went with Peace and Love.) If the card was that hard, how will it be to choose a tree without Karen? She never missed the tree selection – the year she was at NIH, she talked the doctor into letting her out for the day to get the tree, and Matt pushed her around the tree farm on the little cart, because she couldn’t walk that far. I’m sure I’ll cry my way through the tree farm, as Matt and Susie find the fattest tree there is.
We have gotten so much support from so many people for so many years. All of those meals people brought, all of those rides to places for the kids, all of those visits people made to the hospital (or wherever we were staying) and the emotional support over the years… our family is enormously thankful. I know it will continue as we continue down this road, and I know we are blessed with wonderful family and friends.
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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