(This post is written by Karen's friend Mandy.)
My friendship with Karen was beautiful and magical; the kind of thing you only come across a few times in a lifetime and that gives you faith in God and in the world. We became friends on the first day of first grade because she liked my name. Our birthdays were 5 days apart which feels significant when you are little, and we both had middle names like princesses: Belle and Rose. We proceeded to spend the entirety of our first-grade year pretending to be penguins. We both were both great students, and the only reason we ever got in trouble was for talking to each other during class. I also had my very first sleepover at her house. We played a game trying to find my glow in the dark socks under the covers and tried to surprise her parents by making breakfast in the morning. At age six the best we could do was offer them cold cereal on a paper plate. Yum!
We stayed best friends throughout elementary school and had most of our classes together. We invented games outside, climbed trees, wrote stories, and built forts. When Karen was diagnosed with Leukemia in 5th grade, I didn’t understand it one bit. I had never heard of Cancer, could barely grasp the concept of death, and was confused why she got so many presents. However, one thing I could understand was that it was pretty awful to miss school for an entire year. I decided I would call her on the phone every single day to keep her updated on everything and everyone, and I did. We spent hours talking, laughing, and making up stories. Her doctors would have to get on the phone with me and ask me to call back later so they could treat her!
When she came home from the hospital, I learned all about hand sanitizer, helped her pick bandannas to wear over her lack of hair, and tried to grasp that she didn’t have as much energy as I did. But we still played and had fun just like before. The beauty of friends is that they can make any situation lighter. I went on trip to Pennsylvania with her and her family and Karen was so sick from her treatment we had to stop the car for her to throw up in someone’s driveway. That quickly became a funny memory between the two of us. How funny that was to our 11-year-old selves that there was now regurgitated oatmeal in a stranger’s driveway! With our childhood joy it became something so far from the scary, upsetting event that it really was. On the same trip I remember her saying how happy she was to be laying in her grandma’s bed with her best friend. Years later she told me she believes kids who get cancer grow up a little differently, with more of a quiet appreciation life. I think realizations like this were the beginning of that.
When Karen went into remission, life went on and we grew up. We did school projects together, had sleepovers, made up inside jokes, and shared secrets. We went to different high schools but stayed just as good of friends. Our pattern of talking on the phone so much in fifth grade made it second nature to call one another and talk for several hours. We comforted each other through break ups and talked about colleges. At this point, we were basically part of each other’s families and I was even in one of her family’s reunion photos one Thanksgiving. One of the best things about Karen was that she was so genuine and good yet always accepted and supported people no matter how different they were. She always listened, never judged. Whatever differences the two of us developed never mattered. She was inclusive of everyone, and we both thoroughly enjoyed introducing each other to our other friends. Everyone who met her could see what an authentic and kind person she was, and she was welcome everywhere.
The summer after our freshman year of college, Karen called to tell me the doctors said her “cells looked funny” and a relapse was confirmed. This time I had a much clearer understanding of what was happening, and it was devastating. After that there were years of treatments, remissions, and relapses. Each treatment was worse and riskier than the last. There were periods where Karen was totally fine, and then there would be the crushing news of the cancer coming back.
But as Ms. Chris has written about, Karen was no longer a scared 10-year-old. She was an advocate for herself and for others. She wrote her blog with skill, wit, and encouragement. She was the definition of optimism, strength, and authenticity. She published resources for other people going through treatment and supported the Cool Kids Campaign, a nonprofit for kids with Cancer and their families, and Camp Sunrise, where Karen went to camp every year. She also remained an incredible friend. She shared her emotions honestly and bravely, but still wanted to hear about her friends’ lives no matter how minor their struggles were. She had a tendency for telling friends she was not feeling well for a few days and then proceeded to write in her blog what actually happened. Karen “not feeling well” was often actually horrible, frightening, and painful symptoms that she pushed through for days on end. Her other friends and I would read her blog wondering how on Earth that could be happening to her while we were living through the silly tribulations of college.
Though I know the ups and downs of those years were so hard on Karen and her family, I am glad we had so much time together. Since I was older now, I had a better understanding of the importance of our time together and did everything I could to see her. When she was sick, I visited her at various hospitals. One year our group of friends even brought our annual Christmas party, complete with gingerbread house making, to her room in the hospital. When she was well, we went camping, white water rafting, kayaking, and to the beach. For her 21st birthday, a group of us went camping in a treehouse that Karen reserved. We bought her mini bottles of alcohol and took shots just like any other group of college students. I forgot my sleeping bag and had to share with her. We talked about tacos (her favorite food) and she decided we were like a taco in her sleeping bag and wrapped me in a hug. Just like when we were 6 at my first sleepover, or when we were 11 in her grandma’s bed, but we were now 21, and so much more aware of how special moments like this were.
When I graduated college, I moved to Chicago and then Kansas City. Karen was finishing up a master’s degree (like how?!) and was in remission. She and one of her other best friends, Jenn, had a road trip planned that involved meeting me in Kansas City where I would introduce her to Matt, who I had met in Kansas City and at that time had been dating for a few months. In June, right before they were about to leave, she got the devastating news that she had relapsed again. Everyone knew the treatment options were getting less and less reliable. I booked a last-minute plane ticket to fly home to Maryland for less than 48 hours to surprise her for her birthday. Looking back this is one of the best decisions I ever made. I coordinated with Jenn and her mom and showed up at the Baltimore aquarium. The look on Karen’s face was priceless and she hugged me right away in absolute delight. We had a glorious day with her family of visiting the aquarium, eating brunch in Baltimore, going to a park, and then meeting up with my parents in Annapolis. When I hugged her goodbye there was an underlying finality that I know we both felt.
One month later I received the new from her mom that she had passed away. I was home with my family at that time, and my parents, my friends, and all of Karen’s friends were so supportive. For a while it didn’t feel real and sometimes still doesn’t. Living so far from home, I didn’t see most of my friends for long periods of time and sometimes it would feel like that was just the case with Karen. Plus, life was moving so fast then: in these past 2.5 years I have moved, changed jobs, gotten engaged, planned a wedding, and gotten married. I still feel like I haven’t properly grieved, but then again how can you ever “finish” grieving something like this. I did have nightmares about Karen almost every night for about a year. In these dreams she was fainting or disappearing, and I couldn’t help her. I have a friend who told me this is part of the grieving process.
I booked another last-minute plane ticket to come home for the funeral over Labor Day weekend. It was beautiful, just what she would have wanted, and had an amazing turnout. Funerals are overwhelming though. It is hard to truly connect to what has happened when you are seeing 200 people that you grew up with and haven’t seen in five years. For me the best part was going to her house afterwards with just her closest friends. We had a bonfire with her family, and I snuggled with her mom. Her friends and I went into her room and found the small liquor bottles from her 21st birthday, sat on her bed, and took shots in her honor. Her parents found us and just laughed. To some, that might sound weird, or inappropriate. But to all of us we knew that was what we were there for; to bring light and youth and some 23-year-old normalcy to a situation that was everything but that.
In May of 2018 I moved to Virginia Beach and in September 2018 Matt and I got engaged. As I started planning our wedding, the absence of Karen became truly glaring. She and Matt hadn’t gotten to meet, but I know they would have loved each other. I did tell her about him when we were in Annapolis for her birthday. As it was right at the beginning of the relationship, I was full of fears and anxieties on how it would turn out. Karen reassured me not to worry and look how right she was! Karen would have been one of my bridesmaids and would have loved all the events and preparations for the wedding. At my bachelorette party in Cape May, NJ I wore her bracelet to signify her presence. At the wedding I had a vase with a single pink rose (for her middle name and favorite color) at my table. I even ordered a mug for her like I did for all my bridesmaids. The mug has an illustration of the two of us and her hair was exactly like the wig she wore when she was in her cousins’ wedding. The robe is light pink, the dress color she would have had as my bridesmaid. I was so happy her parents and sister could come, and it was so special to be out on the dance floor with her baby (now in high school) sister just like I used to be with Karen.
Though the loss one feels for this kind of friend is so great, so is the gratitude. I feel so lucky to have been so close with such a wonderful person for so long; and to know that this kind of friendship is possible. I am lucky that we grew up together and that I can’t even pick out which parts of me were because of me and which were because of her. I do know that in the 2.5 years since she left, I have become increasingly like Karen. That Fall right after she passed away I went to a Faith Hill concert (our signature song was Sunshine and Summertime by Faith Hill), went to Hawaii (one of her favorite places), and adopted three kittens (Karen LOVED kittens and she would find it absolutely hilarious and awesome that I ended up with three). Matt and I do what we can to get outdoors and go hiking. I have started a blog, inspired by hers. And just like Karen, I prioritize and cherish every moment I spend with my loved ones.
There are so many times when I wish I could tell Karen something that only she would understand; so, I tell her in my head, and I know she is there. I look to her when I need to be brave, am trying to be true to myself, or have a nerdy joke in mind. I still have dreams about Karen, but they are much more pleasant dreams where we are happy and grateful to be together again. Spending most of your life with a friend like Karen makes it easy to believe in Heaven. I picture her up there in a beautiful cottage with her Uncle David and my childhood dog, Keiko. She is watching out for all her loved ones on Earth and being her caring, joyful, smart, and helpful self from up above. She is patiently and excitedly waiting for when it is our turn to join her, and to be our reassuring and loving guide into the next world.
Since my last post, we have marked the anniversaries of three of my family’s losses – David, Dean, and Mom. Not celebrated, but observed. As Matt said, they’re not things to celebrate. They are very quietly observed – a few text messages, maybe a meal they would have liked. These are hard for me, but not nearly as hard as Karen’s anniversary. We also had Thanksgiving and Christmas, which are both happy times, full of family that we don’t see often enough. I’m a little bit jealous of people who live near their extended families and can see them without a (minimum) two-hour drive.
My birthday was a cold rainy day. It was filled with greetings and love from family and friends. (I know someday, probably soon, I will miss the hour+ phone call from my father as much as I miss the much shorter call from Mom.) It was also filled with tears and missing Karen. I went to the store, crying all the way there. I got my things, and went through the line to pay for them, and realized I didn’t have my wallet. I drove home (not so many tears) sat down to type this so I wouldn’t forget it (lots of tears) and drove back to the store (tears again, but not so many.) I wanted to accomplish something, so I looked at Christmas card options – more tears. Fortunately, not every day is like that.
This year we got our Christmas tree the weekend after Thanksgiving, because we were all together, and the next opportunity for that to happen seemed like it might be too late to get a good tree. Of course, then it sat in a bucket in the driveway for weeks. Eventually, it made the trip inside, and got lights and decorations. We made our Christmas cookies on Christmas eve, which took longer than it should have. I am the designated roller/cutter/baker, and the rest of them decorate. I always take some pictures, and this year I looked back at the old ones in my phone from 3 years ago, when Mom was here for Christmas. She and Karen sat side by side, decorating cookies. We had just lost David and Mom was depressed. I was not as sympathetic as I should have been, when she talked about how it was to lose a child. But she joined in the cookie project, and she enjoyed it, working with tweezers to get her cookies to look just right. I have never had that level of patience for decorating a cookie, but Mom did, and so do Steve and the kids. The cookies always look great, unless I cook them too long!
We went on our usual January ski trip, the one that Karen always tried to be able to go to. When she was 10 and initially diagnosed with ALL, we went on this trip completely against medical advice. The place we go is in the middle of nowhere, and Karen was actively getting chemo at the time. A fever meant a hospital stay, and it was over an hour to a hospital of any size where they could deal with an oncology patient with a port. We went anyway. And Karen insisted on doing our usual route, multiple miles out in the woods, with no easy way to bail out if it was too much. I still remember towing her across the flat part at the end, when she got tired. Of the three kids, she most enjoyed cross-country skiing. The others do it, but much prefer downhill skiing. When I go downhill skiing, I always feel like I’m slowing them down, which isn’t fun for any of us. Whether it was her preference or her health, she didn’t feel a need for speed or steep hills, and we spent a lot of time together. Another place for me to miss Karen.
Sometimes when the ski conditions aren’t great, we need to find an alternate activity. A couple of years ago, we went to the Corning Museum of Glass, where we only saw a fraction of what is on display. This year, it was snowing on Saturday, but there wasn’t enough to ski, so we went back to the museum. Apparently I have lived in the south longer than Steve, because I thought we were crazy to drive an hour each way during a snow event, but he was fine with it. Of course the museum reminded me of Karen – she took so many pictures of the beautiful things on display! I didn’t take any pictures of the displays this time. And I still haven’t seen the whole thing, so we’ll have to go back again.
The woman at the lodge where we stay on the ski trip is a quilter, like Mom. Last year I took some of Mom’s fabric when we went, and this year, Carol had made us a quilt from some of it. It’s beautiful, and I will keep it on the couch. It will remind me of Mom every time I use it.
The hospital holds a fundraising event every two years for Camp Sunrise and Sunsibs, and this year they somehow talked Matt into speaking. He will do a great job, and he is a perfect person for it, because he goes to both camps. He asked me for some pictures of the three of them, which I ignored for a few days. Eventually, I went to the slideshow we made for Karen’s celebration, and I cried and cried. So many good memories, but it made me miss her so much! As much as I’m looking forward to the Gala, I know I will cry through Matt’s entire speech.
Every so often, I think back to that awful time at the end. I remember being very unprepared for those last few days. When Karen’s oxygen level was dropping and they had to move her to the ICU in the middle of the night, it didn’t occur to me that she would be gone in two days. When they suggested the breathing tube, I didn’t know she would never be conscious again. Maybe they said that she would be sedated, but I guess I didn’t hear it, or didn’t realize they meant FULLY sedated. And when I went home, and Steve called to tell me to come back in, I still didn’t really believe it. When I left, they said she was doing better. And I feel so much guilt, which the rational part of me knows I shouldn’t, but guilt isn’t a rational thing, is it? I didn’t tell the ICU staff that Karen was very sensitive to sedation, so did they give her too much? Was that a factor in her heart rate slowing? And when Matt and I left for the hospital, I didn’t wake Susie up to take her with us, partly because I didn’t want her to see Karen with that nasty breathing tube taped to her face. I didn’t want that to be her last memory of her sister alive. But in doing that, Susie didn’t get to say goodbye. I’m sure that Karen would have agreed with that, but I don’t know what Susie thinks about it. There are lots of people who would just ask her, but Susie really doesn’t like to talk about any of that, and certainly not with me…. So much crying!
I hope this doesn’t sound like I spend all of my time crying or feeling guilty – definitely not. Most of my days are just like everybody else’s days. But some are not, and that’s normal, even now.
Our kids have always liked to play in water. On every hike with a stream, they were in it somehow. The pool, as much as I would let them. Steve grew up canoeing and rafting, and has passed that along to them as well. We've had a canoe for years, and took the kids out when they were little, when it was easy to fit everybody in. As they grew, it got more difficult, but eventually they were big enough that I didn't have to go anymore. As much as they all like to be in the water, I'm content to be watching from the side. Recently, Steve got a kayak, and now the three of them take the canoe and the kayak out on the water, and I drive from the start to the finish to pick them up. If there’s a trail along the water, I walk a bit while I’m waiting. The last trip they took was on Antietam Creek, and it brought me straight back to the last time we had been there. At that time, we only had the canoe, and all three kids wanted to go. It’s a popular place for tubing, so we decided to try splitting the kids up between the canoe and the tube, connected by a rope. I don’t remember all of the details (since I was only at the ends of the trip) but I know it didn’t go as planned. (When I went looking for pictures from that other time on my phone, I somehow scrolled directly to the right place – thank you Karen!)
It’s hard for me to go back to someplace where Karen was with us before. The things I’ve read about grieving tell me that eventually I will go to those places and remember the good times, instead of just focusing on how much I wish Karen was still here. I believe that will happen for most places, but I think that places I strongly associate with Karen will always be hard. We go to a Camp fundraiser event every year around this time. The first year we went, Karen was the speaker. I cried and cried through her speech! The next year, she wasn’t with us, and I cried and cried! Last year, Steve was the speaker, and I cried and cried. This year, I still cried, but not as much. I have a friend I met through Karen, who was at the event this year. She lost her son many years ago, and we talked about how hard some things still are, and how suddenly it hits you sometimes, how different people grieve differently, and how people who haven’t experienced this just don’t understand. I haven’t been back inside the hospital, but I’m sure when I eventually have to go there, I will be bawling my eyes out. Philadelphia will be a struggle, especially the area around CHOP and Drexel. Great Sand Dunes National Park, and the other places we went on our trip to Colorado. The trail to the waterfall on Kauai. Fortunately, I have no plans to go to any of those places any time soon
We’ve been to two more weddings this fall. Both were beautiful events, very much enjoyed, but as always, difficult at times. One of them was a fellow oncology patient, and there were people there from the hospital, and also another friend of Karen’s that I haven’t seen in a while. It’s always nice to see people from the hospital. Most people don’t realize how much the nurses and doctors and even the aides who take the vital signs start to feel like family, when you see them multiple times a week, for months on end. Then suddenly you don’t see them anymore, either because treatment ends (a good thing!) or that other reason, and you find you miss some of them. I always enjoy the chance to say hello, even if it makes me cry a little.
“Hospital time” is the term we used for how long everything took there, always seemingly twice as long as it should have. Karen and I had lots of things to fill the time. Games on phones and tablets are a wonderful way to divert your thoughts from where you are and why, and Karen found a lot of good ones. I recently started playing one of the ones she liked again, so every morning I feel a little closer to her while I’m connecting the dots. We also used to bring in candy to share, and Karen always saved the wrappers that she liked. Even now I will occasionally send some in to the clinic, and they will send me pictures of the good wrappers. I know I’ve said this before, but it’s still just as true – a parent’s biggest fear when their child dies is that she will be forgotten. Sending that candy makes them remember.
Weebly has a feature that allows you to see how many people have visited your website, which is very interesting. Karen had also set up Google Analytics, which does the same thing, and a lot more. It tells you where people are, and what pages of your website they look at, and a lot of other things that I don’t bother with. I love to see how many people are reading this, and where they are. The numbers aren’t huge, which is fine – how many people could possibly be interested in how I’m coping with my situation? But it’s interesting to see that there are spikes around Karen’s birthday, and when she died, and when her friends share that I’ve posted something. I don’t do social media (I’ll say again, how many people could possibly be interested in my life?) so this is as close as I’ll get to having online “friends” or “followers.”
Don’t forget to give blood. Steve regularly donates platelets, and I’ve gotten back to going, too. My father is 92, and been donating every 8 weeks forever. He was recently contacted about doing a directed donation, because he had something in his blood that somebody needed. Make an appointment!
It’s been two years since Karen passed away. The anniversary was this weekend. I spent a lot of the day using the string trimmer – 4 tanks of gas, and there’s still more to do. We didn’t do anything special to commemorate the date. We didn’t even really acknowledge it all. I got a lot of messages from family and friends who were remembering, and I appreciated every one of them! I spent a lot of time thinking about her, and how much I missed her. I even woke up at 2 am, which is very close to the time she passed. I talked to Matt about it later, and he said that it’s a date that he doesn’t want to celebrate, which I completely understand. We are not a celebrating kind of family, really. Anniversaries and birthdays are kind of understated, and the other holidays (Valentine’s Day, Mother’s Day, etc) are noticed but not a major focus. Matt’s point about not “celebrating” losing Karen made perfect sense to me.
We did celebrate Karen’s birthday, which was while we were on vacation. I had a dream with her in it, and then started the day with a visit from her in my Words with Friends game, which was a wonderful treat! We spent the day doing things Karen enjoyed – driving on a dirt road, eating lunch by a waterfall, free slurpees at 7-11, and tacos for dinner.
Two of Karen’s friends that I know well have gotten married this summer. Both of them included her in their wedding days, which makes me so happy. One had mini taco appetizers, and a photo collage at the reception. I heard later that the bride was disappointed not to get any of those tacos to eat. The other one gave us a beautiful vase with a rose, and an angel ornament. I cried and cried! They both told me how much they missed Karen during the time before the wedding, when they were doing all those things she would have loved helping with. I know she wouldn’t have missed these events!
As Karen’s friends get married, I love to see how happy they are, but it reminds me (again!) of all that she missed. It also reminds me of the day at Jiffy Lube when a random person in the waiting room told us how nice a recently rebuilt firehouse was as a wedding venue. Karen and I had a standing joke (at least I thought it was funny… she might not have agreed) about how her wedding was going to be potluck at the firehall, so this interaction with a total stranger in the waiting room that day made us laugh!
Part of our vacation this summer was to join Karen’s friend Jenn on part of the summer road trip they had planned. We had arranged to meet when she got to Yellowstone, but didn’t have a definite plan. I guess we thought we’d figure it out when we all arrived. That would work, if there was cell service there. I think Karen was bailing us out though, because we went to the campground where Jenn was staying, and randomly met up with her as she was driving back out after setting up her tent. If that hadn’t worked out so well, we would have had a terrible time getting together, but as it was, we spent 2 ½ days hiking and seeing the sights, including a bear much closer than I was comfortable with!
I hadn’t realized exactly how much planning Karen had put into the trip. I knew she had chosen campgrounds and things to see, but the list was more extensive than I thought. She had suggested specific hiking trails, waterfalls, factory tours…. Jenn said that some days, she just checked the list in the morning, and that’s what she did that day. Some of the trails we did with Jenn were on the list, and some of the ones we saw from across the river and were happy we skipped were also on the list. Jenn didn’t go on the balloon ride, which apparently Karen was really looking forward to doing. We didn’t know about that, and it turned out we had gone on a balloon ride earlier in our trip!
We went back to Camp Sunrise with castle cake materials in July. The theme this year was Reality TV, and they wanted to tie in the cake activity to a show called Nailed It, which is on Netflix. The premise is that the participants are supposed to copy a cake that is provided. We didn’t have the time (or the desire, really) to create cakes for the kids to copy, so we modified it. The cabins were randomly assigned a category - they had to create something from a picture collage of either animals or transportation items, or they had to create a cake version of a live model. It is always amazing to see how creative the kids get with the materials they have! They all did an incredible job, but the live model cakes impressed me the most. I expected that to be the least favorite category, but most of the kids really put a lot of thought into how to make their cake look like the person.
Matt has graduated from college, and moved on to the next phase, out in the real world. He’s living in an apartment, and starts his job next week. The other day when we were driving there, he asked me why I was crying about something. I don’t even know what it was, but it was something that shouldn’t have caused any tears. He very perceptively realized that it was his transition, not whatever we were talking about. This was another one of those things that Karen never got to do, which is a long list. Hopefully I won’t cry when he does every new thing – I told myself it was only because of the timing, with it being this weekend. We’ll see how accurate that is!
Sometimes friends send me things that remind them of Karen. I love getting them, and sharing them here.
When it’s time to write one of these, I find myself composing them in my head when I’m away from the computer, and then of course, I can’t remember what I was thinking when I come in and sit here. I’ve had a lot of time for that recently, with some mindless tasks on my to-do list like weeding and pool brushing. Too bad you’ll never read those really amazing posts ha!
We went back to SunSibs this year for another session of Castle Cakes. This year’s theme was Food Fest, so the cake project fit in perfectly! It was wonderful to see the kids get excited when they walked by our area on the way to something else. As always, they were very creative – there was a dragon, a jousting contest, a turtle, and a lot more. We’re looking forward to going to Camp Sunrise!
I don’t know (and don’t want to go back and check) if Karen mentioned her cross-country trip here. She and a friend had planned an amazing trip for the summer that she died. They were going to drive across the country and see lots of national parks and visit lots of friends. Karen made all kinds of camping reservations, and it broke her heart (and mine) when she got the news of her relapse and had to cancel them. Of course, looking back, I would now tell her to just go anyway, but at the time, it didn’t seem like an option. Well, this summer, her friend is on that trip, currently in California. It’s not exactly the same route that they had planned, but she’s still going to all of the parks, and I’m sure she’s listening to the road trip playlist they made together. Friends and family are joining her along the way, and she has a small container with a part of Karen along for the ride too. I’m so happy that she’s doing the trip, but so sad that Karen didn’t get to go.
As I sit here typing this, both Steve and Susie have walked by, seen me crying, and not said a word about it. I chuckle (through the tears) at what that means, that I cry a lot, I guess. But they know why, and they also know it doesn’t last long. From reading these posts, I’m sure it sounds like I’m a total mess all the time, but that’s not really how it is. Life goes on, time flies whether you’re having fun or not, and I experience all of the normal emotions. For years now, even before Karen’s initial diagnosis, I’ve been quick to cry, and quick to recover from it (just ask the staff on the 11th floor at the hospital – they all learned to ignore it and just keep talking.) Now I definitely have more triggers than before (How are things? can be a big one, depending on who’s asking) but I still generally recover quickly. I tell myself this is normal, so I hope it is!
My family had a very nice memorial party in Pennsylvania for my mom recently, for the family and friends who might not have been able to go to Maine in January. It was wonderful to see so many people who cared so much about her! We looked through old pictures, and watched the old videos again, and enjoyed each other’s company. If I try, I can imagine Mom making the rounds of the tables, chatting with her old friends and her family. I know she would have loved the party.
We recently went to a neighbor’s house for dinner and a conversation about religion. That’s a strange topic for me, if you know me at all, and I didn’t participate much. One of the things they asked was if we prayed at all. I don’t know about the others in my house, but I don’t pray on a regular basis. The neighbors pray a lot, and get answers to their prayers. After Karen’s first transplant failed, I did pray fairly regularly, always for her to have good test results, and eventually for her to have a long-term remission. After the final relapse, as the chances of that long-term remission got smaller and smaller, I changed my prayer. I asked that if she wasn’t going to get better, then to please stop torturing her. That was the prayer that was answered. Looking back, I know it was the right thing, because really, how much more could she take? One of the other topics in the discussion with the neighbors was about how things happen here so you can learn something from them and grow. We all wonder why Karen had to be taken away for us to grow. It is a huge test of faith to lose a child, or a sibling when you’re young.
Once again, it’s been a long time. I think I mentioned that I tend to procrastinate, and I especially do that with things that I know will make me cry. Writing a blog post ALWAYS makes me cry.
I have had lots of signs from Karen that it was time to write this one. Friends and family have sent me text messages about how they were thinking of her, or pictures of things that reminded them of her. I’ve seen butterflies, and cardinals made a nest in the azalea bush outside Susie’s window. (I tried to take a picture, but all I got was the window screen with a pink glow behind it.) I even had a dream with Karen in it! It was so nice to see her, and hear her voice! I could do that anytime by watching a video, I know, and see her say things that make much more sense than my dream did, but just the thought of that brings on the tears, so that will have to wait.
Today was the first Mother’s Day without my mom. I got lots of Mother’s Day messages from friends and family, which was wonderful. It’s hard though, when you can’t call your mom! My niece had a dream recently where she saw Mom sitting in her chair in the living room, talking about how she hadn’t met Jesus yet. She said Mom looked happy and relaxed, which she didn’t near the end. As much as my faith has been tested these last few years, it makes me smile to think that Mom is enjoying heaven.
I have seen a few of Karen’s friends recently, which is always a wonderful thing. One of them stopped here on her way back to her apartment in Virginia, and she told me later that she cried for an hour after she left. I know how that goes! We spent time with a friend in Florida, and then again here, when she had a business trip to our area. She brought along another friend, and we visited (and got some steps in) during Susie’s soccer practice. I love to see them, and I’m so honored that they take the time to see us, even though it hurts. The pain is better than it used to be, but I imagine it will always be there – watching Karen’s friends experience “adulthood” always reminds me of all that she missed.
Some of my friends have sent me messages that have made me cry, but I love getting them! One friend has wanted to do a long distance hike on the Appalachian Trail, and this year she is doing it. She sent me a message from the trail, telling me about how Karen inspired her to make the most of the time she has. I have been watching her progress along the trail since March (not stalking, exactly) and I’m so proud to know her! Another friend was walking with a group, and saw some butterflies. She commented on how they reminded her of somebody, and it turned out that the person she was talking to knew Karen from Relay for Life, which Karen had done in high school. I’m always amazed at how many people Karen touched that I knew nothing about. I love hearing about things like that, even though it always makes me cry.
I play various word games on devices, most of which I used to play with Karen. Some are solo games where you just solve the puzzle, and others are competitive, against other people. One day one of the solo games had “taco” and “falafel” as words, which had me thinking of Karen and her Uncle Dean. I only cried a little! Another day, my Words with Friends game suggested an opponent called “HelloMomItsMe.” Of course, I had to start a game! I know it’s not Karen, but it sure seemed like she was saying hi that day.
Another niece told me a story about one night when she was feeling down. She was talking to Karen while she held her sleeping toddler’s hand. When she told Karen how much she loved her and missed her, the little girl squeezed her hand. My niece felt that the squeeze was directly from Karen, and I know Karen would have tried to cheer her up if she could.
I have “met” another mom, who had written to Karen through the contact section here, and wrote again to check in when there weren’t any posts here for a while. I wrote back, and we’ve kept in touch. She lost her son to leukemia, and we have shared some stories. She sent me a link to something she had written, and also to her blog. I certainly exceeded my crying quota that day! If you want to cry, go directly here: https://humanparts.medium.com/three-magic-phrases-to-say-to-a-dying-person-2091872bd487?sk=1ca9a1c5590637e175be06f9cad7ce76 If you want to read some very good writing about another family’s experiences, go here: https://teamewan.com/
Karen always took pictures of nature. These are some pictures I know she would have taken.
Here I am again, trying to do what Karen wanted me to, and crying. I’ve been crying a lot lately.
Every year at Camp Sunrise (and at Sunsibs) the campers and counselors get a bracelet. A dedicated volunteer (or group, I have no idea, really, but Karen would have known!) makes enough bracelets for everybody, which must take forever. Karen had an armful of them. Each year’s bracelet is slightly different than the previous ones, with a different colored bead to represent that year’s camp theme. Karen could tell you which bracelet was for which year, for both camps. She was always very patient with things at the hospital (well, usually very patient) but nothing irritated her like having to take her bracelets off. She also wore a yellow Livestrong bracelet as a sort of exchange program with her Uncle Dean – when Karen was first diagnosed, Dean wore a Livestrong bracelet all through her treatment. When she was rediagnosed, he dug it out of the drawer and put it back on. During her many treatments, Dean was diagnosed with prostate cancer, and Karen wore a Livestrong bracelet for him. And last but certainly not least, she wore a black and white bracelet that was part of her relationship with her best friends from Drexel. When she died, she only had the camp bracelets from that year, the Livestrong bracelet, and the black and white one with her. I put those on, and have been wearing them since then. I gave most of her other camp bracelets to friends and family members, who all knew how much they meant to her. Last week, I looked down at my arm, and the Camp Sunrise bracelet wasn’t there. I have looked and looked, but I can’t find it, thus the crying.
I tend to put off the tasks I don’t enjoy, or that I think will be less appealing than they usually are. This explains a lot about the state of my house, and why the taxes aren’t done yet. I was applying that to writing this blog post, and then the other day I got a package in the mail that made me glad I had waited (sure, we’ll call it waiting…) A friend that I have never met, who also lost a child to cancer, had sent me a beautiful votive candle holder with Karen’s name on it, and also a cute little rabbit, to remember her son. I opened the package, lit the candle, and cried and cried! Since I am always looking for signs that Karen is near, I’ve decided that she encouraged me to wait to write my blog post, so I would get my package first.
On the less tearful side, I went to Florida, to spend time with two of my sisters. It was cold (for Florida, anyway) while we were there, but much warmer than here. We biked around the community where my sister’s house is, did a lot of shopping and errands, since she doesn’t have a car and we had rented one, and went to visit my father, who lives three hours away. Lots of projects got done, and there was a lot of laughing. At times like that, it hits me hardest that Susie doesn’t have her sister anymore. She and Matt are close, but it’s not the same.
We all went to the Camp reunion at the roller skating rink again. As always, it was nice to see everybody. I didn’t cry as much as last year, but two of Karen’s best friends weren’t there this year, so that might have been a factor. One of the other teenagers Karen knew, who had a bone marrow transplant near when she did, has finished nursing school and will soon be starting a job at Hopkins in Pediatric Oncology. I’m sure she’ll be great at it, since she can certainly remember her own treatment, only 5 years ago. There was another family at the reunion who brings food to the hospital every other week or so. Karen used to look forward to seeing them if she had to be inpatient on a Friday evening. They asked if we wanted to join them on a Friday, but that is something I just wouldn’t be able to do. I can see the people from the Pediatric Oncology unit at various events, but I don’t know if I could go back in there.
Steve has been getting a lot of phone calls asking for platelet donations. If you are able - I’m not, something about antibodies that can cause a reaction in some recipients - please go and donate some! It takes a little bit longer than a regular blood donation, but it’s very important!
Today is my brother-in-law’s birthday. Our family has a tradition of calling each other for birthdays, and you always want to be first. I can’t call Dean, but I can have a little conversation with him, and I’m sure that Karen and David are making him a castle cake to celebrate. As I was thinking about this, it made me wonder if our loved ones in heaven would celebrate their birthdays there, or the day they died instead, since it could be considered their “heavenly birthday” as the day they arrived there. Strange places my mind goes sometimes.
We went on our usual ski trip to northern Pennsylvania in January. This might have been Matt’s last year to join us, since next year he’ll be working, with limited time off. We will miss him, but Susie will miss him the most! Karen enjoyed cross country skiing, but the other two prefer the excitement of downhill instead. It’s hard to go back each year without her, but I suppose it will get easier. This year, we brought three bins of quilt fabric from my mother’s house. The owner of the inn where we stay is a quilter, and so are a few of our fellow guests, so we made a lot of people happy! Mom would have loved that.
We also went to Maine for a memorial gathering for Mom. Maine in January is never my first choice, but it was a great celebration that Mom would have enjoyed. A lot of people came, and a lot of them said very nice things. One of the older grandchildren had prepared some words to say, since none of her children were willing/able to do it. He did a great job in a tough situation, and brought me to tears more than once! Another grandchild made a slide show, and some others made picture display boards. I had watched all of the digitized Betamax videos from the mid 80’s, and made a composite video of clips of Mom. It was so much fun to see everybody back then. The grandchildren who were babies then have their own babies now. I would go back and watch our own videos of when our kids were little, but that would make me cry so much, so I won’t be doing that any time soon.
I still don’t see as many signs of Karen as I would like to, but there was another one recently. There’s a section on here where people can post comments, and another part to send a message. Weebly sends a notification to Karen’s email for comments and messages, and also puts them on the blog information page, but I don’t look at those things very often. I checked last week, and there was a message sent the day before. It might be entirely coincidental, but I prefer to believe that Karen is nudging me.
I’ve learned from Karen, and started to make notes of things I want to include when I finally sit down to write here. When Steve wrote the first post, from her perspective, he used the notes she had made since her last actual post. She also used song quotes a lot, so the title today is from a song. It has taken me a while to learn these things – we’ll see if they stick.
We went to the Bullroast and Oyster Feast fundraiser for Camp Sunrise again. We filled our table with some neighbors and a few of Steve’s coworkers. A few days beforehand, Matt sent a text message asking if Steve or I could speak at the event. I laughed and cried at the same time as I thought about the absurdity of the notion of me trying to speak at any event, but especially that one. Steve came through though, and had some of his coworkers in tears as he spoke. It’s always nice to see old friends there, but it always makes me cry to think about how Karen should be there, and how much of her life she didn’t get to live.
Thanksgiving was a smaller gathering than we had expected, but still very much fun. I always enjoy hosting. When we go to Maine or Pennsylvania, there are multiple houses where people can stay, and we are split up. Here, there is only our house, and everybody is together. It actually works better than you might think! This year, there were multiple trips to DC for sightseeing, and some Black Friday shopping, and lots of eating and games. Matt and Steve got to see the Burning Man exhibit at the Renwick Gallery, and Matt found some cards left for Karen. I don’t know if he could be sure they were for our Karen, but it doesn’t really matter.
My sister and I made an unplanned trip to Maine a few weeks ago. Mom had fallen and was in the hospital, and the family there didn’t know if it was close to the end or not. The day before she fell, Mom had been out in the kitchen without any urging, being social and having a very good day. She was confused etc, after the fall, and it was hard to tell what was going on. When we heard that she was talking to Dean (my brother-in-law who passed away last year) we decided that we should make the trip. We spent a lot of time with Mom at the hospital, where it was decided that she should be moved to their hospice room, since she really was physically failing. During the days and evenings, she had lots of company, friends and family, and one night my nephew stayed overnight in the recliner in her room. We left to come home on Tuesday afternoon. On Wednesday, my sister in Maine sent a message that Mom’s morphine dose had been increased. I had a little conversation with Karen, to look for Grandma soon, and give her a big hug. We got word that Mom had passed away late that afternoon, surrounded by family. I’m sure Karen was there with the others to welcome her! I had an alarm set on my phone to remind me to call Mom, every day at 4:30. It still goes off every day, and I will keep it for a while, even if some of my immediate family members think I’m crazy.
Last year at Christmas, we made a card with pictures, and it had our name printed on it, so I didn’t have to sign them. This year, I couldn’t face choosing pictures that didn’t have Karen in them, so we sent regular cards, all requiring a signature. I can’t begin to tell you how many times I almost signed Karen’s name on those cards!! I thought it would get better as I worked my way through the 70+ cards, but it didn’t. It made me wonder if that will happen every year. That would certainly be more motivation to choose a picture and get the pre-printed signature each year.
Some people see signs of their loved ones all around them, all the time. I would love to be one of those people! I need to be hit over the head with the sign to recognize it, I guess. One day recently, I happened to look at the calendar on Karen’s phone. I have no reason to look at it, but that day I did. It turned out that it was the birthday of one of her best friends! I think it was Karen’s hand, guiding me to see that, so I could say Happy Birthday to her friend. This might seem like a small thing, but there are times, especially during this season of family time, when I need all the help I can get.
Another one of Karen’s friends is getting married next June, and she sent me a picture of the mini taco appetizers they will be serving at the wedding, as a way of including Karen at the event. It’s so sweet that her friends are keeping her alive in their hearts, and telling me about it. I appreciate it more than they could ever realize (unless they read this… then they’ll know!) Another friend told me that his family had tacos on Christmas, and he was thinking of Karen. When I questioned tacos for Christmas, he pointed out that it was really just Taco Tuesday, with the added bonus of red and green trimmings for Christmas. I laugh and cry at the same time a LOT.
The October issue of National Geographic (I’m a little behind) has an article about hope. I think the world needs more hope. One of the charities it mentioned was Be the Match, which is a bone marrow donor registry organization. Karen never needed to use a donor from the registry, but lots of people do, and they don’t always find a match. (Get more information at bethematch.org or www.giftoflife.org to sign up or donate money.) The article talked about how doing good in the world and noticing the good others do gives hope for the future. Do something good.
Who knew there was a National Taco Day? I’m sure Karen knew, and she probably told me, but of course I didn’t remember. When I was deciding what to make on October 4th (a daily annoyance for me) I came up with tacos. I almost changed it to something else at the last minute, but I didn’t. When I got the text message from one of Karen’s friends with a picture of his taco dinner for National Taco Day, I was so happy to be able to say that we had also eaten tacos that night! I really do believe Karen was in my head when I was contemplating making something else. I wish she was in there more often, and more recognizably!
Recently when some relatives came to visit, we went for a walk in a local park, and it struck me that the last time we had been there was probably with Karen. She was always willing to go for a hike, or sit by a stream, or… She loved to be outside, walking, skiing, swimming. When she was little, we used to hike a lot on the weekends, and even had a trail we maintained in New Hampshire when we lived up that way. One of my favorite pictures of Karen is when she was asleep in the stroller we used on those trips, with her head resting on the gas can for the chain saw. The only hike I remember Karen not enjoying was one we took the summer she was first diagnosed, before the diagnosis. She was very tired, and of course we had no idea why.
We haven’t been able to do as much hiking recently, since weekends are more likely to have sports now, but we are trying to get back outside more. We went to Catoctin over the weekend, and hiked to some rocks that the kids have always enjoyed climbing around on. There are crevices and caves, and Steve and the kids would always go exploring while I sat and watched the people, or read a book. After the hike and the climbing, we went to a farm with a corn maze. A couple of years ago, Karen met the Governor at a Redskins game, and when she heard he was going to be at this farm, we went. I was so impressed that he and his staff remembered her! We went back, and I didn’t even cry as we went through the maze, although I could see the pictures I took last time of Susie and Karen, looking at the map and punching the card, very clearly in my head.
We are hosting Thanksgiving this year for my extended family. The location shifts among the three states where we all live, and this year it’s my turn. I actually love to host, so that’s perfect (it’s much nicer than driving to Maine in November!) Anyway, there are a lot of people who will need a place to sleep, and the kids have always had to give up their rooms to aunts, uncles, and married cousins. If you’ve read any of the previous posts here, you already know that Karen’s room is still very much “Karen” and so it’s not particularly conducive to guests, especially ones with little kids. You also might know that I can’t spend much concentrated time in there to improve that. So I started weeks ago, a little at a time (it’s not done yet!) Karen was always cold, and she had multiple blankets on her bed, along with the blanket that my grandmother made for her when she was born, that she took everywhere. It went to college, camp, the hospital… everywhere. One of the first things I did in her room was to wash all the blankets, and pack them in a bin, except for the baby blanket. I didn’t put it on the bed, but it wasn’t in the bin. Well, in one of the recent sessions, I put the baby blanket in the bin with the other blankets. At the time, it just made sense to put it away. An hour later (and again now!) I was in tears. Who would have guessed that there would be so much significance for me in a blanket? But there is. Unfortunately, I have no better ideas for what to do with it, so it’s still in the bin, and I’m still crying about it.
I have a book, Healing after Loss: Daily Meditations for Working through Grief, that somebody Karen knew from the hospital gave us. I read it some days, when I need a little help. On the days when it helps a lot, I send a picture of it to Matt. It’s helped me enough that I’ve given copies of it to multiple people. Maybe one of these days there will be something to help me with my blanket issue.
Overall, I like to think that I’m doing ok. (I have no idea about the rest of them!) I’m a functional human, most of the time. I seldom cry my way through the grocery store anymore. I can laugh about the payment person on the phone who jokingly said he would be asking for my firstborn child. (He was certainly apologetic when I said he couldn’t have her, because she was on the mantel! I may have psychologically scarred him.) I only cried a little bit when a conversation among people who couldn’t have known better led someone to ask if Karen could take Amanda’s beautiful (but very large) picture to her own place. But some days, it’s really hard. Not usually all day, not even for hours at a time, but enough that I notice. I guess that’s how it goes.
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.