It’s been a while since I wrote anything here, and I’ve been getting signs from Karen that it’s time. There was an email from a friend with a picture of the sign at their local Mexican restaurant. There was a butterfly on my walk the other day, and it’s getting kind of late for butterflies here. There was a message from one of Karen’s oldest friends (all the way back to first grade!) that she got engaged. And there was a word game where the daily puzzle answer was “taco.” So here I am. (a note: I didn’t post this the day I originally wrote it – I wasn’t happy with it, or something. This morning, there was another sign from Karen to get moving… A food truck drove by that said “TACO TRUCK” on it. It was a happy day in Karen’s life when the food trucks at Drexel took payment methods other than cash!)
This weekend there is a 5k race at UMD that’s a fundraiser for the Hebda Foundation. They asked Karen to speak at their gala one year. It was during a remission, and she was at school in Philadelphia most of the time. She didn’t want to come home an extra weekend to speak, so they made a video instead. On the day of the filming, we came home from somewhere to a house full of video and sound equipment. It was QUITE a production. Now I’m so happy to have this video, so I can see her and hear her anytime I want to. http://hebdafoundation.org/why-we-exist
I used to tease Karen sometimes, and tell her that we were going to have a potluck dinner at a firehall for her wedding reception. My mother went to a potluck wedding reception, and she said it was wonderful. Once when we were getting the oil changed in the car, this random person in the waiting room started telling us about the local fire station’s social hall, recently rebuilt after a fire (yes, a fire at the fire station) and how nice it was. He went on at some length, saying it was so nice, you didn’t even realize it was the firehall. Of course, I told Karen we had found her wedding venue. She was very good about it (at least to my face) probably because she wasn’t anywhere near getting married, and probably because she knew I was joking. The recently engaged friend told me that she wants to honor Karen somehow at her wedding. I had lots of (mostly bad) ideas, which I didn’t share, but I’ll list them here. Tie dye bridesmaid dresses, or tablecloths/napkins, or bride’s veil. Castle cake incorporated into the wedding cake, or let the guests decorate their own cupcakes. Tacos for dinner. Or the more traditional, pictures of those who are gone too soon, which is what the recently married family members have done.
September is Childhood Cancer Awareness month. Last year, when I could see Karen’s Facebook page, I could see all of the posts about it. This year, I was relieved not to see it – I’m well aware of childhood cancer, and I already have too many reminders. Camp Sunrise lost another camper this week. I don’t know anything about this child, but I know that there is another family who lost their little girl too soon. I wish I could do something for them, but there isn’t much that helps. I have a book that somebody gave us, that I have given to others. A friend sent us some booklets about coping with grief, which arrived at various times after Karen passed away. I appreciated them so much that I’ve purchased some myself and sent them to family, friends, and people I’ve never met. These things help, but only so much.
I still miss Karen, I still talk to her most days, and I still cry (frequently!) I started a word game with a random person named Karen S, and eventually I told her why. Strangely, she also lost her daughter, but many years ago. It’s so depressing, how many of us there are.
One year ago this weekend, we had a house full of family, and more family and friends in hotels, here to celebrate Karen’s life. We had a beautiful service on a dreary Saturday, which she didn’t want, and a well-attended, very fun party outside on a gorgeous Sunday afternoon, which she very much wanted. It didn’t occur to me that all of that was a year ago this weekend until this morning, so I didn’t spend all day yesterday crying. It remains to be seen how I spend today.
Other people tell me when Karen visits them in their dreams, especially if they hear her voice. I’m always jealous, because if she’s in my dreams, I don’t remember it. Well, last night she was! I was so excited that I woke up and made sure I would remember. I almost got up then (at 1AM) to come out here to type this, to make sure I didn’t forget! Maybe I should have, because 5 hours later, the details are a little fuzzy. I do remember being very happy, because in my dream, I didn’t have to mourn, because for some reason, Karen could come back (and be alive) every so often. Oh, if only that were true!!! But I got to see her and talk to her, and I wasn’t sad.
Karen’s cousin’s wedding was fun – Karen would have loved it, except for the heat. The bride was beautiful, the groom was handsome, the setting was gorgeous. We did a mini bone marrow registration drive, and 14 people signed up to be donors! Everybody stayed in the same hotel, and we spent lots of time with family, which I always love. A word of advice… when you are taking a party of 15 to a restaurant, make a reservation first. But then you don’t have as much to laugh about later.
Our visit with our old neighbors was great, as usual. Their group gets smaller each year, as their kids go off to college and don’t come home for the summer. We went to DC and saw the Burning Man exhibit at the Renwick Gallery. A friend of Matt’s had gone to see it, and told him about the Temple, where you can leave memorials to people. The friend was planning to leave one for Karen, and saw one that somebody else had already left for her. The room was HUGE, and there were memorial “cards” everywhere – it’s amazing that Matt’s friend saw another one for Karen. I remembered Karen, David, and Dean while I was there – all three of them were adventurers who would have enjoyed the Burning Man experience we learned about.
Before Matt went back to school, we went to our favorite Japanese restaurant, where they cook the food on the hibachi grill in front of you. Karen had joined their “birthday club” where they send you a postcard around your birthday, and you can get a free meal. The last time we went there was for her birthday last year. When the postcard came, I cried (who’s surprised?) but I also decided that we were going to go back, and pay for somebody’s meal as a way to celebrate Karen. When Karen and Matt were little we went for a hike one day, and went out to eat afterwards. When it was time to pay, our waitress said that somebody else had paid our bill. We were very surprised, and we chose somebody else and paid their bill. So we sat at the Japanese restaurant and looked around, trying to pick somebody. I’m sure the other people at the table with us thought I was crazy, because every so often through the meal, I would wipe my eyes and probably look very sad. Who does that while they’re out at a restaurant?? The mom who was there with her two kids was very surprised when she didn’t get a bill for their meal. We told her we had paid their bill, but didn’t explain why. Maybe next time I’ll be more able to deal with that part.
Spread some joy around.
One year ago, our world fell apart. I know, with a cancer diagnosis, death is always there as a possibility, but you don’t really think about it, because you have to believe your loved one is going to survive, especially when it’s your child. Even as Karen had relapse after relapse, I believed the doctors were going to find the next thing, and it was going to be the one that fixed her. Even when she died, things were set up for her to participate in a study that could have been the one. She only did that last round of chemo to keep the disease level under control until the study was ready to go. Even the doctors didn’t really seem to think she wouldn’t make it, since they used the chemo that was safer for her heart long term. Unfortunately, the different formulation was stronger than they expected, and longer lasting, and Karen just couldn’t take it. I hope they learned from that, in case they need to use it again.
We’ve gotten cards, emails, text messages, and booklets from very thoughtful people, and I woke up this morning to messages from Karen’s friends, who are planning to honor her today. I appreciate all of those people, telling me they are remembering Karen. We will spend the evening with friends who loved Karen, which will be wonderful. As I go about my normal boring day though, doing laundry and washing dishes, driving Susie to her activities, I’m crying, and missing my daughter. Life goes on without her, because it has to, but there are moments when it’s just so hard.
I sit here crying, thinking about all I have lost in the last 20 months. My brother, my daughter, my brother-in-law who was like a brother. Of course, that’s not to say I don’t still have a lot of wonderful people in my life – but sometimes I’m overwhelmed by the loss.
Karen’s birthday was three weeks ago. I knew it would be a hard day for me. It started with tears (of course!) and lots of messages from family and friends remembering Karen. A lot of tacos were eaten that day! It didn’t start with Timehop for me. Apparently they had some sort of data breach, and everybody was logged out. Karen must have logged in through Facebook, so I couldn’t log her back in, since her Facebook account can’t be accessed anymore. I tried (and tried and tried) to create a new account so that I could continue to feel that connection to her each morning, but gave up after a few frustrating days. Another day, another lost connection to Karen. I miss it so much, especially as I look through the pictures for this post. It had so many great quotes, and family memories, and it made me laugh (and cry!)
We didn’t celebrate Karen's birthday in a conventional way. I left around lunchtime to begin my trip to Maine to see my mom and the rest of my family that lives there. I actually ate pizza for dinner on Karen’s birthday, one of her less-liked meals. The rest of the family did eat tacos, though, and played games, so there wasn’t a shortage of Karen-activities here at home!
While I was in Maine, we spent some time on Eagle Island, where my sister and her family have a house, and where the picture of Karen on the swing was taken. Last year, when we went to Maine just after Karen died, Steve and the kids went out there, and he took a picture of the empty swing. I thought about taking another one, but didn’t. I thought about taking a picture of somebody else on the swing, but didn’t. I enjoyed my stay on the island, and only cried a little bit as I thought about how much Karen loved it there.
We have a lot of family birthdays in July, so we had a large family gathering with tacos and a castle cake. The cake making has moved on to the next generation, with the majority of the work being done by Karen’s cousins’ kids, with supervision (and construction assistance) provided by the cousins. It makes me happy (as I cry!) to see the younger ones enjoying it as much as Karen did, and knowing that their parents will continue the tradition.
My mother lives in Maine with some of my siblings and most of their children (and grandchildren.) Mom is 87, with a list of ailments. After my brother died, her depression worsened, understandably. When Karen died, I didn’t want to tell her, because she was feeling a little better, and I didn’t want to send her back down where she had been. Of course, we had to tell her (she kept asking where Karen was, and I am a terrible liar) but fortunately it didn’t send her as far down as I thought it might. Her general decline has continued, though, and it has reached the point where she only gets out of bed when forced to, either to use the bathroom, or because her caregiver won’t bring food to her in bed. (Some do, I didn’t.) It is very hard to watch this woman who was once so active, and now chooses to barely move. It is very frustrating to see a person who has the opportunity to live, and chooses not to, when so many who wanted to live so much are gone too soon.
Our vacation this year was a trip to Michigan to visit family. We stopped along the way there, and the way back, to see some sights, including Cedar Point, which was on Karen’s list of places to go on the trip she missed last year. Karen would have loved Michigan… In addition to being a beautiful place to visit, almost every radio station we found was a country station!
Karen lost her paternal grandmother when she was 8 years old to metastasized breast cancer. When we took Karen to the hospital on the day of her initial diagnosis, I didn’t want them to mention “cancer” to her because I knew it would scare her silly, since that was her only exposure to the word. Of course, they did, and she was scared, but she was strong and faced whatever they threw at her. When her grandmother’s doctor recommended chemotherapy for the breast cancer, the response was, “I’m not putting that poison in my body.” When Karen’s doctors recommended chemotherapy, our response was, ”Where do we sign?” At the time of her grandmother’s diagnoses, there was some discussion in her extended family about chemo, and I remember some family members saying, “chemo kills people.” At the time, chemo was all there was to kill cancer. Although I know that chemo saved Karen when she was 10, I also know that chemo killed her when she was 23. I know that left untreated, the leukemia certainly would have killed her, and the doctors did the best they could. None of this knowledge makes any of my loss any easier. I hope they learned something from everything she went through. Treatment has come a long way, but there is still a long way to go.
We made castle cakes at Camp Sunrise this week. I had been to Camp to drop Karen off a few times, but rarely inside the buildings. It was Karen’s place, and she didn’t seem to want me in it when I took her there – it was always a quick goodbye, and she was off to her camp family. So when we went there for the cakes, it was actually much harder for me to be outside than inside. I guess it was good that most of my time was inside! As usual, Karen’s camp family made us feel welcome, and told us how much they missed her. Of course there were lots of hugs and tears. The kids didn’t care about any of that, but they were almost all interested in the cake and the candy! It was interesting to see how they incorporated the “Mad Science” theme into their creations. There were robots, planets, spaceships, ‘sharknado,’ and other unidentified objects. A huge thank you to the families on Susie’s soccer team who helped us bake enough cake for 12 cabins!
There are things to look forward to, many positive, one negative. Karen’s cousin is getting married, and a large family gathering is always a good thing. Some old friends from Massachusetts are visiting soon, which will be a wonderful distraction from the one year anniversary that’s approaching faster than I want it to. I have no idea how I’m going to get through that day! Of course, I will somehow, probably with lots of help from my friends.
Remember to give blood and platelets! Somewhere there is somebody who needs it.
I’ve been choosing the title for my blog post from one of the Timehop quotes, but this time it’s from a new friend who joined my club, by losing her son to cancer recently. She saw a sign with that quote on her way home from the hospital and got some comfort from it. It makes me so sad when I hear about another family going through this kind of loss. We watch our children fight so hard, and endure so much. We do everything we can to help them, and our friends and our families give us all so much support and love and so many prayers. And then we lose them, our beautiful children, who have so much potential. Having cancer changes the kids. The ones I have seen have a different perspective – they know that life is precious, and they want to give back. Karen had many organizations she supported – she volunteered, she walked, she raised money. She joined a sorority at Drexel that was service-based. These pediatric cancer patients accomplish so much, and could have done so much more, if only they had survived. One of Karen’s doctors recently left Hopkins to go to work for a pharmaceutical company. I told him that the pressure is on him, to help the kids, because we’re losing too many, and he can’t let them down.
We continue our list of “firsts” without Karen. Mother’s Day was dreary and soggy. There was a gift (from Karen?) of not going to Virginia for soccer at 7:30 AM, which was nice. There were also some delicious chocolate covered strawberries, which Karen would have loved. And there were some Timehop memories discussing last year’s Mother’s Day gift, and Karen’s input into it.
We all went to the Camp Sunrise Gala, which is their biggest fundraiser. They have the Gala every other year, and it was on Karen’s calendar on her phone. Things like that make me sad – the events I know she wouldn’t have missed, given even half a chance to be there. Lots of her friends were on the Gala committee, and I’m sure she would have been, too. (That’s when I feel the worst about myself, that I haven’t stepped up and done some of what she would have.) It was really nice to see some of the doctors and nurses that were there. When you see these people every week, sometimes multiple times a week, they really are more than just your caregivers, and you miss them when that ends (abruptly!) I cried a little bit (of course!) with a few people, but overall it was a nice evening with good friends.
Susie and Matt went to Sunsibs, the weekend camp for the siblings of the patients. Susie has gone for 6 years now, even though it is a major conflict with a soccer tournament every year. I know a couple of people who had a hard time with the idea of going back as counselors without Karen there. We went on Saturday, and did a castle cake activity with the kids, in memory of Karen. She never celebrated ANYTHING without a castle cake. I think the kids enjoyed it. There were a lot of variations on the travel/wonders of the world theme. My sister came down from PA to help me bake the cakes we needed for the 8 cabins – that’s a lot of cake!
We planted some new flowering trees around our house. They will bloom in the spring, mostly with pink flowers. Karen took so many pictures of the flowers we have, and the trees in bloom. One of the new trees is visible from her bedroom window, and I’m looking forward to seeing it bloom next spring. She loved being outside, surrounded by nature, and I know she would have enjoyed choosing the trees and where to put them, and then watching them grow. I will take good care of them so I can think of her when I look at them.
There was an activity at the elementary school where the kids went (and I still volunteer) that involved painting rocks for a rock garden. One of the staff members asked me if I wanted to paint a rock for Karen, and I asked her if she could do one instead. One day recently, she took me outside to see the finished product, and I had to guess which rock was Karen’s. So much pressure!!! But it turned out to be easy, and it’s beautiful! Karen really was a ray of sunshine.
Some of Karen’s friends came over the other day and spent the afternoon with us. It was wonderful to see them and catch up on what’s happening with them. We played cards, which Karen loved, and talked about the time they spent here with her, and how much we all miss her. Amanda gave us the beautiful picture she drew of Karen’s face, in treatment and out, all framed. For now, it’s here in the living room with the other pictures that I look at (and talk to, most days) and will eventually hang up somewhere.
A lot of the Timehop memories right now are the text messages Karen sent and received last year about her last relapse. There are messages about having to cancel her dream trip, and about starting treatment (again!) and signing consent forms. It makes me cry so much more, to read them and know how it ended, but at the same time I smile as I read them and see how much love and support she got from so many friends and family members. I miss her every day.
I have lots of things that remind me of how long Karen has been gone. My Timehop streak, over 200 days now, which I didn’t start immediately. The unread text messages on her phone, which it reminds me are from over 250 days ago. The now very numerous list of “firsts” we’ve had without her. But there are still some rare moments when my brain is tricked into thinking that she’s just away. Those don’t last very long.
Easter was another one of those holidays that Karen enjoyed. She was always the one to find a new way to dye the eggs, and the other kids liked being able to give her the black jelly beans that they didn’t like. I found a tie-dye egg kit this year, and we tried it in memory of Karen and David, both masters of the art. I’m sure they would have done it better, but we did our best! Last year, she wasn’t home for our egg dying (was she preparing me for the future??) so she found a friend in Philadelphia who had never dyed eggs before, and they had a great time. Even though she missed doing eggs with us, she certainly never missed the family dinner – we would pick her up at the train station on our way up to PA, and drop her off there on our way back. We went this year, and of course it was good to be with the family. I only cried a little. HA!
We went to California for Susie’s spring break. One of our destinations was Joshua Tree National Park, which was on Karen’s itinerary for the trip she didn’t get to go on. We were there at the perfect time, when the flowers were blooming, and I thought of her a lot. I tried to take lots of pictures of the flowers, because Karen always took pictures of the flowers, even though she wouldn’t have been there when the flowers were blooming. I thought of her while we were hiking, and wondered which hikes she would have done, and which would have been too long for her, and if it would have been too hot. She had trouble in the heat. We also went to the San Diego Zoo and the Safari Park, which I think also would have been on Karen’s itinerary. I took pictures there, too, but again, I know hers would have been better!
There is an annual Tribute Service at the hospital. It is a beautiful event, with pictures of all of the kids displayed around the reception room, and a remembrance service with a slideshow, and the names announced and candles lit for each one. As they call the names, the people who are there to remember them stand up. You can go to it as often as you want, not just this first year. The hospital staff sees a list of families who are attending the service, and there were a few nurses and other caregivers there, which was wonderful. Some of them make a point to go every year, so I’m already looking forward to going back next year, just to say hello. When you spend so much time with people over 4 years, it’s nice to see them once in a while to catch up. There were also some friends from Camp there, and it’s always great to see them.
Some of the kids were just tiny babies, and it broke my heart to see the pictures of them, all full of tubes. It made me wonder if those parents had a chance to hold their babies without any tubes. I was so fortunate to have Karen for so long, and to now have her friends. Karen had so many wonderful friends, from elementary school all the way through to college, and I’ve kept in touch with many of them. Some of them text me when they’re thinking of her, or I will send them things that pop up in Timehop. I appreciate the continued contact more than they can ever imagine!
This grieving process continues – what else can it do, I guess. Some days I don’t cry at all. Those are the days that I am busy doing other things, not going into her room (which still looks like she could come home and climb in bed!) and ignoring the bag on the mantel next to the TV. I am very good at not seeing the things that are here every day, like that bag, and the clutter everywhere (which explains the constant state of mess in our house!) and I can forget, sometimes, that this is Karen’s computer I’m typing on, even though it has her name, and I have to type in her password to use it, and the picture of her in Maine on the swing is the wallpaper. Most days I cry a little, just for a minute or two. I talk to Karen and tell her how much I miss her. Days like today, though, where I want to do a blog post, the tears just keep flowing. As a very wise niece told me, crying is completely normal, and memories are good.
I didn’t intend to post anything so soon after the last post, but something came up that has me back here. I said in the last post that I enjoyed looking at Facebook through Karen’s account, and the next morning, somebody memorialized it. As it turns out, anybody can initiate the process. It might just be a coincidence, but the timing certainly made me wonder. I am still devastated, and very angry. There may have been people out there who didn’t want me to see what they were posting, and those people could have contacted me to ask me to take them off, or whatever the term is. I never intended to be creepy about it, and would certainly have removed anybody who asked. As it is now, I’ve lost another connection to Karen. Not only were there family messages in there that were helpful to me, but there were friends of hers who contacted me through Facebook who wouldn’t know any other way to reach us. Also, Timehop, which is one of the things that gets me through the day, would show me pictures that she had posted on Facebook through the years, and now it can’t access it either. This isn’t something that can be undone, apparently, no matter how much you beg. Some might wonder why I don’t just get my own account, but that’s not really the point. I’m asking everybody who ever considered memorializing somebody’s account, PLEASE PLEASE check with their family first. Let them be the ones who make the decision!
I can’t believe it’s been 7 months already. Some days it seems like it was just last week, and some days it still seems like Karen is just away, and will be home to visit soon. Unfortunately, that never lasts very long.
I continue to check Timehop every day. I have a streak that’s over 160 days. Some days make me laugh, and some days make me cry, but I’m so grateful to have the connection to Karen’s day, through the years. So much good advice! I know some of these are song lyrics. I wish I knew where she got some of the others. She had a book of quotes - I can add that to my list of things, to see if that's where they came from.
I went to another family gathering that Karen would have LOVED last month. When the announcement came out on Facebook last year that her cousin was planning to get married in Puerto Rico, Karen was very excited. She loved to travel, and she loved her family, so this was the best of both. Of course, we didn’t get tickets right away, since Karen hadn’t been able to make long term plans for years. Then I gave up on the idea of going. I thought it would be too hard to do it without her. In January, my sister asked me if I wanted to go, and we made our plans. It was a beautiful wedding, and I’m so glad I went. Of course, it wasn’t without tears. There were a few famous criers in the group (including the bride) and we all cried when she brought out the pictures of the family members they had lost, that were to be put on the tables at the reception. David, Karen, and Dean were all in our family pictures.
When I was packing for the trip, of course I needed some reading glasses. Susie had made us some sleeves to carry them in, and I picked up one of them, and there were glasses in it, so I stuck it in my bag. When I tried to use them, I couldn’t see a thing through them. I tried a couple of times, and eventually looked at the glasses more closely. They were Karen’s glasses, which I haven’t seen since August! And the sleeve they were in was a Christmas gift… so somehow, Karen found a way to go to the wedding!
Karen was in Gamma Sigma Sigma at Drexel. It’s a service sorority, and she loved the girls, and the activities. They recently held a fundraiser for Camp Sunrise at Karen’s favorite taco place in Philadelphia. It makes me so happy that they have kept Karen’s memory alive, and that they chose to raise money for camp, which was very important to her. They also had a ceremony that evening where they remembered Karen with balloons. Thank you so much for the pictures, Alyse!
And speaking of Camp Sunrise, last weekend was the Sunrise/Sunsibs reunion. Susie and Matt wanted to go, so we went. There were a lot of familiar faces from Facebook, but that’s only one-way, so they don’t necessarily know me, which is just fine. The ones I did know to talk to all gave me big hugs and told me how much they miss Karen. It was harder than I expected at first, but watching everybody have a great time connecting with friends and roller skating made it better. And they had a taco bar for lunch, which I will assume was in Karen’s honor (even though nobody said that… I know the person who organized the food was one of her good friends.)
I've tried to take some of the pictures that Karen would have taken, on the days when it's just beautiful outside. She would have done it better! Here are my attempts, along with a paper I found in Karen's room. I wish I knew the story behind it!
As I mentioned before, we’ve done a little bit of research into making Karen’s request a reality, regarding travel for oncology patients. It turns out that there are a lot of organizations that already do similar things. I have added links to them to the Resources section, under Travel Resources.
We got the Christmas tree, and put it up. Karen would have loved it. It took multiple days to get the lights on, all 2200 of them. And that’s how it stayed, until the weekend of Christmas. The only ornaments that were on it were the ones we made while trying to figure out what to make for Karen’s friends, and the beautiful taco ornament that Claudia sent. Eventually, the rest of the ornaments (or at least most of them) got on the tree. The kids each have some ornaments, and it was hard to put Karen’s on. She was supposed to do that! We also made our Christmas cookies that weekend, which was another one of Karen's favorite activities. Last year, Grandma was here, and she took our cookie decorating to new heights. This year, it was just the four of us. I know it's important to keep things as normal as possible, so we had the tree, and the cookies, and the cards, but everything is harder when it all makes you cry.
I was dreading Christmas. We always spend the day with family, and Karen loved her family! It turned out that the week before Christmas was much worse than the actual day. I cried so much that week, but hardly at all on the actual day.
The hospital sent us a card, with papers inside where staff members who knew Karen shared memories. It was very kind and thoughtful, and of course made me cry. We also got a card from the oncology child life staff. These things mean so much to me, to know that somebody, somewhere, was thinking about Karen, and took the time to share that with us. So, if you’re thinking about somebody, take a few minutes and send them a quick hello message. (this is something I need to do more often myself!)
We went on our usual cross-country ski trip recently. I’ve always enjoyed it – the people are great, the location is beautiful, the food is delicious. Karen never missed this trip. During her initial treatment when she was 10, we went (against all recommendations from the doctors!) and had to give her chemo while we were there. When she was at Drexel, she would take the train or the bus to Harrisburg and we would pick her up on our way to Potter County. So of course, I was not looking forward to being there without her. On the positive side, everybody there already knew, so there weren’t any uncomfortable “where’s Karen?” moments. Some of the people who couldn’t attend wanted to see the slide show from the service, so we watched it (and cried!) I took pictures that I thought Karen would have taken, although I’m sure she would have done it better. It wasn’t as bad as I expected – I think Karen’s motto of “high hopes, low expectations” is still working for me. If I think it’s going to be awful, then it usually isn’t.
On that note, I went to PA by myself for a baptism a few weeks ago, and the drive up there was awful. Karen definitely would have joined me, so I really was missing her a lot. I had quite a one-sided conversation with her in the car! It’s not really a good idea to drive while you’re crying.
Last week, I wasn’t feeling well, and spent the whole day sleeping. It made me think of Karen, and how often she felt crappy, and kept going anyway. I can still see her working on her finals at NIH, when the CAR-T fever was starting. The work had to be done (although the teachers would have understood!) and it didn’t matter how bad she felt. I think it had gotten to the point where she felt crappy so frequently that having something to do was a good distraction. Just another reminder of how amazing she was, and how strong.
Steve’s birthday was at the end of January, and it was another one of those “firsts” that was made a little bit easier by very thoughtful friends who invited us for dinner. The actual day was still off a little, but Matt wasn’t there for our brownies and ice cream either, so it wasn’t as bad as it could have been. I spent some of the day in Karen’s room, getting rid of stuff. Some people go through things immediately, but I’m not one of those people. I do a little at a time, and haven’t gotten rid of anything that might have meant even a little to Karen herself. So, it’s even slower than it might be. There has been some progress, though – it turns out Karen had a LOT of paper that I could recycle. There were old magazines, notes from classes, camp schedules, receipts…. But in all of that paper, I came across the Sunsibs logo that they’ve been looking for since last summer, so it was definitely a successful day. I also have lots of journals and notebooks to donate. Matt didn’t enjoy hearing that in 2005, Karen thought that Baltazar was nicer and smarter, when the boys were 8.
The recent issue of Reader’s Digest that showed up here (our subscription lapsed many months ago) had a story about CAR T therapy. It was interesting to read it, but also a bit depressing, because she was SOOO close to success with it. It sure was strange to not see the magazine for months, and then have that be a cover story in the one that appeared. Some people would say that Karen sent it. Maybe she did – a travel magazine came in the same day’s mail!
One of the things that Karen wanted us to do was to make it possible for other patients to travel, like she loved to do. We haven’t gotten that together yet, but in working on it, we’ve discovered a whole bunch of organizations that have the same idea. We are leaning toward “sponsoring” a young adult patient from Hopkins through one of those existing groups, but haven’t made any recent progress toward making that happen. We will get there, eventually.
Here's a selection of Timehop wisdom.
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.
I’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.