May 2023 - Trying to be better about posting…. And actually succeeding for once. A computer update – I still haven’t made much progress on my project to move pictures and documents to the new laptop. Apparently I’m lacking motivation. Or something. I also found a website that I can donate crocheted things to, locally, for cancer patients. Sounds perfect – use up some of the yarn I keep buying, make something useful – but I haven’t done that either. At least I’m doing a blog post and it hasn’t been a year yet. I did go and give blood, and I wasn’t exhausted afterward. I got the blood donor app on my phone, so I think that will help me remember to go donate more often. It also tells you where your donation goes, which is kind of cool! We went to our usual family Easter event in Pennsylvania. It’s always good to gather! The weather was nice, the food was delicious, and the company enjoyable. We are so fortunate to enjoy spending time with family, and that our kids still want to come along to family events. Speaking of family events, there was a large 80th birthday party in New Jersey (the other side of the family) and the kids wanted to come along to that one too! We made a weekend out of it, seeing 3 of my siblings, a couple of nieces, lots of my cousins, and of course the birthday girl, my mother’s youngest sister (and last surviving sibling) at the party and then again the next morning. It’s always wonderful to get together for something other than a funeral. I actually saw a cousin I didn’t even know we had, from my grandfather’s family. There are probably more of them that my mom just didn’t keep in touch with, but usually the faces are at least familiar at these events, even if I can’t come up with the appropriate names. Another one of Karen’s friends got married recently, in Atlanta. The weather was great, the bride was beautiful (and the bridesmaids too) and the couple did a wonderful job personalizing the ceremony. We weren’t the only parents of friends there, which was nice. I think we might have been invited even if Karen had been there! They had asked for a picture of her to display with the other loved ones gone too soon, so I was expecting that. I was NOT expecting the cookies at each place setting describing donations they had made to charities that were important to Karen. Of course I cried! Just a little. Karen had such good friends! We decided to stay a few extra days after the wedding and see a few sights. You can’t visit the area without seeing a few Civil War sites, especially not if one of you spent hours playing a Civil War computer game that had most of the battles recreated. At least one of us kept all of the generals on the right sides. You also have to visit the MLK Jr Historic Site, so that you can remember how bad things were, and know that there is still much more improvement to be made. You also shouldn’t leave Atlanta without seeing the World of Coke exhibit. Not to diminish the other area attractions – the Aquarium, the Zoo, Fernbank Museum, and Tallulah Gorge, all great places to visit. So much for getting a blog post done… I started this in May, and now it’s the end of July! Oh, well, maybe the next post will be quicker. It could happen, but I wouldn’t bet on it. Susie came home from her first year at college. She’s been working at a small manufacturing company, doing all kinds of interesting tasks. As with all jobs, some are more interesting than others! She’s enjoying the people, and the work, and also the paychecks. Since we only have two cars, most days I’m home without a car, but most days I don’t have anywhere I have to go, so it’s been fine. I’ll get back to volunteering when she goes back to school. There was another wedding Memorial Day weekend in New Hampshire. I remembered why we don’t go to New England for Memorial Day weekend. The black flies were out, slightly worse than the mosquitoes. Fortunately, they weren’t so bad during the actual ceremony. The wedding venue was pretty, the bride was beautiful, and it was wonderful to see that part of the extended family. I’ve lost touch with them a bit, but I’m hoping to do a better job keeping in touch going forward. Every so often, I go through some of the things in Karen’s room. It’s not something I enjoy, but it needs to be done. Each time, I find I am able to get rid of more clothes. Soon the closet will only have Camp t-shirts and a few other things she wore often. Ok, maybe not that soon. This time I did come up with a fair sized pile of things to donate – progress! Then I looked around a bit more, and came upon 3 containers on a shelf. Imagine how surprised I was when they all had rocks and shells in them…. Mostly broken shells, and plain rocks. I guess they were pretty when Karen collected them, but I definitely don’t need to keep them any longer! We went to Maine to celebrate a bunch of milestone birthdays. My oldest sister turned 70 this year, a niece turned 40, and another one turned 30. There are a lot of summer birthdays! There were a lot of gatherings, which I love. The rain didn’t dampen anybody’s spirits during the lobster dinner or the birthday party, and fortunately it stopped in time for the fireworks! We also managed to fit in some hikes, of course, and some time watching the ocean at Schoodic Peninsula. There was also a day at my sister’s house on the island. Karen loved being there. I sat on the swing and cried. Karen’s birthday was among those we always celebrated in Maine in the summer. This year, it was tacos for dinner, and lots of people sending me messages. I appreciate every one of them!! Of course they make me cry, but every time somebody remembers Karen, it makes my day a little brighter.
Camp Sunrise is this week. Karen NEVER missed Camp. Even that last year, when she was in terrible pain, she wanted to be there, and she was. She had wonderful friends there, and her Camp family has welcomed us, in her absence. Among her many Camp friends was Amy, a woman who had been involved with Camp long before Karen started going. Amy also NEVER missed Camp. When Amy got cancer herself during Covid, she was inspired by all of those kids she knew at Camp. I started sending Amy a quote or a joke from Karen’s transplant chains each morning, and when I ran out of chain links, I found other sources. It has expanded now to over 20 people. Amy passed away on Saturday, as the volunteers were getting ready for orientation. I like to think that she was welcomed on her journey by all the kids she knew from Camp, with Karen at the front of the group.
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So much for posting more frequently! Have I mentioned how hard these are? And how much I wonder why anybody would care what I have to say? But Karen asked us not to let her blog die with her, so I continue. I have to find a way to make sure I don’t wait so long. There’s a lot to talk about, when it’s been almost a year! We went to Arizona in April. Sedona, the Grand Canyon, Lowell Observatory, among other things. Lots of hiking, all beautiful! One of Susie’s soccer teammates was on the same flight from BWI, very randomly. And then on the way back, another teammate was on the same two flights! They were in Sedona too, but we didn’t know until we met them at the airport. They ended up giving us a ride home at midnight. Such a small world! We went to a wedding in May in Virginia. One of Karen’s friends got married, and we were invited in her place. It’s nice to see the girls going through all the steps of growing up, but it’s so hard! I’m so thankful that they continue to include us, and I hope they understand when I cry. Susie had her final high school sports season… no more track meets, no more club soccer games. The prom dress was pretty, the hair was fancy! Graduation was HOT. We had a crowd for our traditional post-graduation dinner out, since Steve’s brother was in town with his kids, and his dad and my sister also came for the ceremony. One of the conversation topics was what was the best starting word for Wordle, and it was discussed at some length. Yes, there might have been a nerd or two in attendance. After our fun sisters trip in March, we decided to go to Williamsburg for a few days in June. The four sisters, Susie, and an old family friend. Poor Susie! But we went to Busch Gardens and Water Country, so she decided it was worth the time with all the old people! There were no lines, so she had her fill of roller coasters and water rides. Unfortunately, the house in Florida was in the path of the hurricane, and is no more. So we have to work harder to make the sisters trips happen now. We missed the one that should have been this spring, sadly. Also in June, we took my dad’s ashes to Rhode Island to be dispersed at sea. He had planned to have somebody do that for him near where the submarine he served on had been scuttled, but unfortunately that person predeceased him. So my sister made the arrangements instead. It turns out that the Coast Guard will perform this service for you, and take you along for the boat ride. Nobody told us when we bought our biodegradable urn that there were sizes. We found out the hard way, when he didn’t fit in the one we got. And it’s not like we could return it… so the rest of dad went in an Amazon box, which we thought was very fitting, considering how much he liked to shop. We removed all of the tape and stickers so it was also a biodegradable box, and we took both of them out on the boat. I’m sure those Coast Guard people will remember us! The Amazon box sank pretty quickly, but the fancy urn floated for a while, and seemed to be sticking close to our boat, making us wonder if Dad had changed his mind about the whole burial at sea thing. It might not have been the solemn occasion they were expecting, but that’s not really how we operate. While we were there, we had a beautiful few days in Newport, seeing the sights. There was also a celebration of life party for Dad in July, which he would have really enjoyed. Both Camp Sunsibs and Sunrise were in person this year. It was very nice to have the kids be all together in person again! They didn’t do castle cakes at Sunsibs, but we volunteered anyway, and helped the kids make Pinewood Derby cars instead. They weren’t the official cars the Boy Scouts use, but they were kits that used a lot of glue. The activity schedule didn’t account for the drying time, so we missed the camp-wide race. There were some very creative cars! Camp Sunrise did have castle cakes, and we spent the day watching the kids make some amazing tropical themed scenes. The pictures just can’t capture how amazing they were. I love that the kids get so excited to do the activity each year! They don’t know the history of it related to Karen, and most of the current campers didn’t know her, but they all enjoy it, and that’s what matters. In August, we went to Washington and Oregon for vacation. Mt Rainier, Mt St Helens, Tillamook, Multnomah Falls, Olympic National Park, among other things. It was a great week, especially if you ignore the messed up flights at either end. Yes, both directions. Thanks, Southwest. And this was months before the big meltdown. There was a lot of hiking, lots of waterfalls, overall beautiful scenery, delicious ice cream, and at least one stressful dirt road. I don’t mind a dirt road, but there was one in Olympic that I should have skipped. Steve has the patience of a saint. Susie went off to college when we got back. There was a health scare as we were dropping her off which almost sent me into a panic… It’s never good when the doctor calls you and says to go directly to the Emergency Room, and that they’ll call ahead so they’re expecting you. It turned out not to be worthy of all the drama, but we didn’t know that at the time, and there was enough history (with Karen) to make me pay attention. Anyway, college is good, she’s having fun, and there’s a nice convenient bus for when she wants to come home. Steve and I took a trip to New England in the fall, to see the leaves. We haven’t been up there at that time since just after we moved here. It’s hard to beat that area for fall color! We visited a friend and her parents, where we did a small home repair project. It made them so happy, definitely time well spent! Sightseeing in the Hudson Valley, too. A nice few days, very strange not to have any kids along! There was a family wedding in October, with a beautiful bride and handsome groom, of course. I got to go to PA early, to help get ready, not that they really needed help. But just in case. And it was helpful to have the van there, to get things and people where they needed to be. I’m so fortunate to have a family that gets along, and actually enjoys spending time together! In October, I went with friends to visit another friend who had moved to Boston. We did all the tourist things, which was a lot of fun. Beautiful weather always helps! We spent a day in Boston and a day in Salem. A piece of advice – only go to Salem near Halloween if you are REALLY into Halloween. We were woefully unprepared. While we were in Boston, I randomly saw one of Karen’s friends, twice! She was out sightseeing with a friend of hers, and we passed each other. I also arranged to see the only family we have left in MA while we were there, so they joined us along the Freedom Trail for a bit. Wonderful to catch up in person!!! Thanksgiving was in Maine this year, and I got to go early. I flew on Sunday, and the rest of the family drove on Tuesday. My trip was much shorter. I got to do projects at my sister’s house (somehow projects at other people’s houses are better than my own) and keep the peace between her and her son, who sometimes disagree about things. It was wonderful to see everybody! Some of the Maine residents don’t get out much, so I haven’t seen them in a long time. The ride home on Saturday was LONG. Connecticut was one big traffic jam. But we had entertainment, and I didn’t have to do any of the driving, so it was all good. Once again, it was time to find a Christmas tree. We all got together on a Sunday, and had the usual discussion about where to go… back to where we went last year? A few years ago? Local? Farther away? It seems like the closer places haven’t had the right size trees in a while, but they’re close, so don’t we have to try them first? It’s always difficult to decide. We finally made a plan, and found a tree at the second farm. We had been to this place a few years ago and the trees were smaller, but now that the kids have adjusted their expectations, it was fine. I am ever-thankful for the shrub of a few years ago! Now, the tree just has to be fat, not tall and fat. We put it up on a platform, and it’s all good. As far as Christmas itself, we finally got to celebrate with family like we usually do, with a minor modification. Matt’s girlfriend joined us for Christmas morning and in PA, since her flight to Houston on Christmas eve was cancelled. Hopefully meeting a little more of the extended family didn’t scare her away! We went on our usual ski trip in January. Susie wanted to go back to the Glass Museum again, but instead we went to a park in New York with very large waterfalls. On Sunday we went on a local hike, to try to find a trail Steve’s dad had never been on. He’s been going to this place for over 30 years, so it’s hard to believe any trail exists that he hasn’t been on, but we found one, sort of. It started out as a marked trail, and then it seemed like they wanted us to turn. So we turned. There were old faded blazes on the trees, but no sign of there ever having been a trail. It was very strange. Eventually we rejoined a clearly marked trail (that surprisingly, he had never been on) and finished our loop. It was all good until the large stream we had to cross. There was a log, but you couldn’t walk across, you had to crawl or sit and scoot. Thankfully there are no videos of this process!
We got a new laptop recently. Matt came over to do his taxes on our old desktop, and was very unhappy with the speed of operation, and the inability to send himself an email. I don’t use it much, mostly just for the taxes, actually, because it has all of the previous years on it, and it’s easy. We also have Karen’s college laptop, which I use more often, including right now. Obviously, it’s not anywhere near new either. We had talked about getting a new one, but … inertia… and we hadn’t done it. So Matt did. It arrived on a Tuesday, along with some flash drives. My plan was (and still is…) to go through the two computers and take what I want to the new computer, and have a backup copy of documents and pictures on the flash drives. This is not a fast process. I started going through the laptop first, and so far I’ve found some pictures. I had skipped over Karen’s coursework, but then I remembered one of the essays I found in her papers, and now I wonder if I should go back and look for things like that? I think it would take a long time, and not get me very much, but we’ll see how it goes. I also came across a document she had to submit to Drexel about dropping the last classes she was taking, where she wrote about how she was feeling fine and keeping up at the beginning, and then she got that final chemo, and it knocked her out. She mentioned that they were the worst side effects she had ever had in all of her treatment, and I sat here crying, remembering how much pain she was in, and those final few days. It wasn’t pretty! There were also some itineraries from trips she had taken with Steve during her school breaks. He did an amazing job taking her places, so much better than I would have done. On some of the trips, they stayed in the same resorts where we stayed on later trips. He never mentioned that he had been there with her – I would have been in tears pulling in to the parking lot! I can only imagine what else I will find… but I’m sure that there will be more that makes me cry! I have a tendency to leave certain tabs open in a browser long term, usually to remind me to go back and look at them periodically. One of the tabs on this computer is for a blog by another mother who lost her child to leukemia. She and Karen were in contact about treatment options for her son before Karen died, and she had sent an email at some point, because she hadn’t heard from Karen. Anyway, she has a blog, and she’s a much better writer than I am, so I’ve kept the tab open. Her last post was about how to write a eulogy for your child. Crying, again, even though I didn’t even try to write something to say then. I know my limits, and that is well past my ability! I mentioned last time that I had gotten a letter from a friend of Karen’s, about how Karen was still impacting her life. I found it eventually, and put it aside so I could finally include it. Karen was 5 when we moved here from Massachusetts, and Kalene was her best friend there. They stayed in touch over the years, which I always found to be very impressive, especially in the days before email, social media, and texting. Anyway, Kalene told me in a letter about how she has encouraged people to give blood, and sign up for Be The Match, and has fostered kittens in Karen’s memory. One of her friends has been called twice to donate bone marrow! So many people signed up or donated after she promoted Be the Match at her wedding that the organization called her to ask why it was so important to her. Even though I cry every time I read it, it makes me so very happy to know that Karen continues to make a difference. After reading Kalene’s note, I was motivated to make an appointment myself to give blood. I haven’t gone in a long time, pre-Covid, I’m sure. It makes me very tired, so I feel like I have to plan more when to go, and then I don’t go. So now I have an appointment, on my brother’s birthday! I can feel like I’m honoring both of them! Hopefully reading this motivates you to do something good. I said it wasn’t going to be so long, and I’m trying to keep my word! Of course, I started this in January, and now it’s already April, so I need to try a little harder. We got our Christmas tree at the first farm where we got out of the car. Note that I didn’t say the first farm we went to – the first one we went to was already closed. Then there was a dilemma – should we go north from where we were, or south? Once again, it was late in the day (this time, there was a soccer tournament, picking up the car from the repair shop, lunch, and THEN the tree) and we probably couldn’t do both. We went north, to another place we had never been before, a little off the beaten path. They had a limited selection of tree varieties, and the kind we liked also happened to be the kind you have to wear gloves to put the lights on, because the needles are so prickly. There were a couple of reasonable trees, not ridiculously fat, not too tall. I thought they were perfect. The kids thought they were too small, of course. But it was late in the day, and if we had gone to the other tree farm, there were no guarantees that they would have anything better, or even as good, and this one would be closed by the time we knew that. (And I wasn’t coming back by myself the next day to cut this tree!) So reason prevailed, and we got a normal sized tree! Of course, it looked great once it was inside and had some lights. It took me a week to get the lights on it, and it never did get any ornaments! But it was beautiful anyway. Matt’s girlfriend was here from Texas, and she joined us on the adventure. Later on, she commented that the experience was just like a Hallmark movie! That made me laugh – I can’t imagine any part of life here being anything like a Hallmark movie. The negative part of the day spent together was that the next day, Matt didn’t feel well. His symptoms didn’t even last 24 hours, so we didn’t really think anything of it, until Susie got a sore throat, and Matt got a positive Covid test. So we went to get tested. Three hours in line on a cold Saturday morning – what fun! Susie’s test was positive, and ours were negative, but we hadn’t done any kind of isolating in the house, so it seemed like it was only a matter of time. Sunday evening, I was trying to tell myself that I didn’t really have a sore throat. That didn’t work! More tests, thankfully scheduled and not involving a long wait outside, and mine was positive. Steve never did have any symptoms or a positive test, so I guess his booster shot started working right away! So we spent Christmas here with just the four of us, again. On the positive side, it is very freeing to know I have some antibodies. I still wore a mask for a while, and now that the numbers are down, I don’t worry so much. We had to postpone our booster shots, which were scheduled to be during our isolation time, but we got them eventually. I mentioned in the last post that my dad was living here in our in-law apartment. Well, that was going well, until it wasn’t. He was having some intestinal discomfort, and things got out of hand from there. Very long story short, he ended up with a perforated bowel that required emergency surgery. After many days in ICU, where we couldn’t visit, he was moved to the step-down unit, but he passed away before I could get there to see him. I had gone to Pennsylvania for a funeral in New Jersey, and the hospital called to let us know. He was just 5 days short of his 95th birthday. I couldn’t believe it! He had so many garden plans for this summer, so many things he wanted to plant, and seeds he still wanted to order. So now, I will be planting at least a few seeds of all of the things he had already gotten. I hope we get more than we can eat, like he would have gotten! My sisters and my brother came down here to help go through Dad’s stuff and clean up the apartment. Dad disliked cleaning even more than I do. They were amazing! I would have left it as it was, and done a little bit as I felt the urge, but they were having none of that. Things were sorted and donated, and we sent pictures of things to the grandchildren in case they wanted anything. I couldn’t have done it without their help. We spent a lot of time laughing, remembering, and only a little time crying. Dad had a good life. It was weeks before I stopped looking for the things he got regularly at the grocery store – small greenish bananas, his particular brand of peanut butter, among other things. I never mastered the potato selection, even after 6 months of trying. We went on our usual ski trip in January. It was so nice to experience “normal” for a weekend. We went to the glass museum again, and still haven’t seen everything there even after three visits. There was enough snow to ski in some places, so we went out on Sunday and Monday. It was great to see everybody! I’m fine being alone a lot, but it’s definitely nicer to have my social life returning to normal. One of those “normal” things has been a trip to Florida with my sisters in the spring. One sister who lives in Maine has a house in Florida, and the rest of us join her there for a week. It’s so nice to leave the cold for a few days! Last time we went, it was just at the beginning of Covid Times – we didn’t even know what it was! One of my sisters spent much of that week talking to people at work about how to deal with a group returning from Italy, which was a hot spot at the time. I don’t know if any of those people ended up being sick, but it was a mess, and there was a lot of stress on what was supposed to be her vacation. We had no idea what was coming!! On our previous trips, we would spend a day with Dad while we were there. This year, we went to the town where he lived to attend a memorial service hosted by the USSVI base where he was a member. It was a very nice event, and all of the veterans there clearly knew him, which was nice. We came home with a flag, some certificates, and great memories. While we were in the area, we drove by his old house. The new owner and the wonderful neighbor who did so much for Dad were outside, so we stopped to say hello. The house looks good, and there was a boat at the dock. We were happy to see that the new owner loved the place as much as Dad did. As I’ve mentioned a lot, I hate to clean. Dusting is the worst, so there’s a thick coat of it on a lot of surfaces in my house. The other day I was looking online for cleaning advice (the best advice is to hire somebody!!) and one of the things I saw was to turn on some music. Since I’m trying to be better about cleaning (I have trouble justifying not doing it myself, since I’m home all day) I tried it, to see if it would help. We have two playlists that we made, country and classic rock. I chose the country one – I’ve been thinking about Karen a lot in the last few days – and the first song was “Red Solo Cup.” Karen knew all of the words to a lot of country songs, but definitely that one! It always made us laugh when it came on the radio back in the day. The next song that caught my attention was “Road Less Traveled” by Lauren Alaina. Karen loved traveling, and no vacation was complete without at least one dirt road. We still try to find them when we go somewhere. I mostly only know the chorus, but when I looked up the words, I realized that it was a good Karen song, and I’m sure she liked it. And then there was “Who You’d be Today” by Kenny Chesney. Bawling, again. I frequently mention how much I appreciate hearing from people remembering Karen. Around Christmas I got a note from her oldest friend, telling me about how she was motivated by memories of Karen. I set it aside so I could mention it, but now I can’t find it. I don’t want to get my facts wrong, so I’ll include the details in another post, but thank you so much, Kalene, for sending me that note! This post was more timely than the last one, but hopefully I will do better next time. Thanks for being interested enough to read them.
Once again, it’s been much longer than it should have been. I was feeling very stressed after I wrote the last post, and kept telling myself I would be better after this event, or that event, but it took much longer than I expected. And then it had been so long…. and these are so hard… so here it is, already a year since the last post! (I started this in August, and have had to edit what I wrote then because of how much time has passed.) I think part of why these are so hard for me is that my life isn’t very exciting, and I can’t imagine people really want to know what’s going on in it. Although I still miss Karen all the time, how much can I talk about that? Kind of repetitive and boring, really. But she didn’t want this blog to die with her, so I keep plodding along. We got our Christmas tree… well, Christmas shrub, really. All three kids have always liked fat trees, and I think they’ve only gotten fatter over the years. We always go and cut our own tree. The year of Karen’s treatment at NIH, she got a special pass to come home for a day to go get the tree. She had a way of convincing doctors to let her do what she wanted to do! I can still picture Matt pushing her to the trees on the cart they give you to bring the tree back after you cut it. In 2020, we went to four, yes, four, different farms before we found the tree we got. Notice that I didn’t say the perfect tree. We didn’t start our tree expedition until after 2, and it’s dark by 5, so we didn’t have time to find the what Matt and Susie consider to be the perfect tree. All of the trees were about 6 feet tall, instead of 8, and perfectly tree shaped, instead of fat. The one we got really did look more like a shrub than a tree, fatter than it was tall! It didn’t have a single center trunk at the top, so we made one with two branches and a zip tie. We built a platform to put it on, and eventually it looked more like a normal tree. It turned out to look great! During a “get rid of stuff’ mood one day, we got an old laptop out of the other room, and Matt decided we should clean it off and get rid of it (12 years is apparently too old) since we have a slightly newer one – 8 years old instead. We turned it on and eventually remembered the password. Apparently last time we used it, I left a browser open, and I must have been reading one of Karen’s blog posts. Of course, I had to go back and read it, and of course I sat here crying. It was around the time of the relapse news from NIH, around the time of her second transplant. The post was titled “Tell them I faced down all my fears” and it just reminded me again how strong Karen was. I miss her so much! (Note – we didn’t clean it off or get rid of it. It’s back where it was, under the bed. But we did get rid of our original desktop computer, circa 1997!) At some point in early January, as my dad approached his 94th birthday, I mentioned to him that it was getting to be time for him to move back north, nearer to family, instead of being in Florida by himself. He had great neighbors there, but they weren’t year-round residents. Even though he was still driving – which he shouldn’t have been – we were worried about how things would progress. I told him that when he got to be 95, he would have to come up here, giving him a year to get used to the idea. I didn’t mean that he would have to come up in January (who wants to move north in the middle of winter?) but more like next summer. Well, he surprised all of us by saying he was ready to move. He started packing boxes, giving me frequent updates on his progress. I even changed the ringtone on my phone for his number, so I would know immediately that it was him. He sold his car and his house, and a group of us went to Florida in April to move him here, where he could live in the in-law apartment attached to our house. It has been a bit of an adjustment (for everybody) having him here, but overall, it’s working out fine. I had thought he would be more active than he is, after hearing about all the things he did every day around his house in Florida. But then I remember, he’s 94, and I decide he can sit as much as he wants to. There are still things he can’t find, which we might have left in Florida. We didn’t clean out the house completely, and he hadn’t quite finished packing when we got there, so I’m sure there were many things he would have packed that we didn’t know to take. Oh, well. On Steve’s birthday, we had our usual brownies and ice cream. Susie had soccer practice, and Matt baked the brownies while we were gone, so they were still warm, but not too warm (we put candles in too warm brownies once, and it didn’t go well.) They got out the plates, and I looked at them and almost said, “Wait, there are only 4 plates,” but then I caught myself. Of course there were only 4 plates – there are only 4 of us now. It amazes me that I can still forget that she’s gone, even after all this time. One evening, we were watching television, and the show was about a single dad with two kids. The wife/mother had died a few years before. She had been a teacher, and some friends had organized a project to paint a mural in her honor at the school. The dad had been asked to say a few words at the unveiling, and he was working on his speech. They were reminiscing, and the younger daughter got very upset, because she didn’t have as many memories of her mom as the older one, and she felt like she was forgetting her mother. I sat here on the couch and cried, just like I am now. The forgetting is the worst thing. I can’t forget Karen’s face, because it’s all over my house, her voice isn’t. And for most people, memories fade. Susie had a virtual school event in the spring, and one of the speakers was a guy who spoke at a lot of Karen’s school events. It’s been a few years since I’ve seen him, but I immediately recognized him. I wished I could have laughed about it with Karen – I know she would have found it funny that he was still there, speaking at high school events, still saying the same things as he did 10 years ago. I texted her friends, and they all remembered him and his classic lines. I’m glad I have those friends of hers to share things like that, but I wish I had Karen! A few months ago, my phone mysteriously deleted a bunch of my contacts. The numbers were still there, and the messages, but the associated names were gone. Not all of the contacts, but a lot of them. It was very strange. I haven’t removed any of the contact information for the people I’ve lost over the last few years, but that event did it for me. The other day, I typed in my brother’s number, and there were all of the text messages, still there, with no name attached. Of course, I put his name back in. Creepy, probably – oh, well. It made me smile to read them again, and cry too. He would have been a grandfather this year, and he would have loved that! One day I was cleaning out the pantry. I won’t say how much was thrown away. The highlight was coming across a bag of bug shaped graham crackers that we got at CHOP in Philadelphia. They had these crackers in their snack area, and I used to feed them to Karen when she was waking up from her versed nap after a procedure. I would place a cracker on her tongue, and she would tell me what kind of bug it was. Yes, she was at least 20 at that point – you take whatever entertainment you can find in the hospital! Anyway, it made me happy to remember the game we played, and I almost kept the bag of crackers, so that I could remember it again in a few years. Cicadas! We had lots of cicadas. After a slow start here at our house, they got to be very loud! It was strange how much the volume could change just by moving a short distance. I took videos to send to my extended family, to show how loud they were. And they were everywhere! Last time they were here, Karen and Matt were in elementary school, and some of their classmates brought chocolate covered cicadas to school to share. Months later, there were still signs of them in the trees – the tips of the branches were dead where they laid their eggs. At least a year ago, I lost one of Karen’s bracelets – I know I wrote about it here – and I was so upset!! I looked all over the place, in the house, out along the road where I walk every day, and eventually I gave up. On one of my dad’s active days, he was edging the front sidewalk. We’ve never done it, so you can imagine how much the grass had grown over the concrete. Anyway, on our way to the door one day, Susie looked down at the newly exposed dirt right next to the sidewalk, and saw the missing bracelet! We pulled it out of the dirt, washed it off, and it’s back on my arm with the other ones Karen was wearing at the hospital that last week. Camp Sunsibs and Sunrise were both virtual again this year. Covid numbers were ok then, but unless you keep the active treatment kids home (and their siblings from Sibs) it’s too much of a risk, so really there wasn’t much of a decision to make. We helped pack boxes again, and Matt and Susie enjoyed the activities together on the Sunsibs weekend. Hopefully next year, there will be a way to have a more normal camp experience. We went on a couple of trips this summer, but unfortunately haven’t made it up to Maine like I had hoped to. We spent a week in Vermont, where we did a lot of hiking, learned too much about Calvin Coolidge, played mini golf, ate ice cream at Ben and Jerry’s, bowled on a granite bowling alley, and looked for moose. The scenery was beautiful, as expected, and it was very nice to be able to be somewhere else. We also took a long weekend to see a couple of colleges, to give Susie some idea of what different campuses look like. Of course there was also hiking and mini golf on that trip, too. Lots of waterfalls! So nice to be somewhere else for a while. Covid has gone on too long. Susie’s senior year is here - time flies. All students in school, and sports have resumed like a regular year. So far, so good. There have been some cases in Susie’s school, but nothing that would be considered an outbreak. They had their homecoming dance on the football field, which was wet from rain earlier in the day, and it was a cold night. At least they had it, and the kids will always remember it!
When I’m doing things around the house with music on, some songs sure do hit me hard! “Don’t take the girl” had me bawling one day! Not that it takes a lot to get me crying. Usually it passes pretty fast, but driving while crying hasn’t gotten any easier. I remember when the Rascal Flatts song about the girl with leukemia came out, during Karen’s first treatment, I couldn’t listen to it at all without crying. And even now, still crying. (Did I mention how much time I spend crying when I write these? It’s a LOT.) And last year, they came out with another song that makes me cry, How they Remember You. To those of us left behind, it’s remembering the ones who left us too soon that’s so important. I know Karen is remembered, and I’m so grateful to the people who mention her to me. Thank you! I’ll try not to let it go so long next time. I don’t want to disappoint Karen again! It has been much longer than it should have been – I feel like I’ve let Karen down a bit. But these are hard for me to write, and I can frequently find something I’d rather do than spend a few hours crying. Life has continued to be strange, but as with most things, it has become the new normal. I always remember to take a mask to the store, but somehow seem to forget when we go to a soccer game. My own life isn’t actually that much different, other than the mask. I still go for my morning walk with the neighbors, except now we walk on opposite sides of the street to maintain our distance, instead of single file like we’re supposed to. Fortunately, there’s not as much traffic as before. I still go to the store, but not as often, and almost exclusively where I can scan and bag the groceries as I shop, for less handling and interaction. I haven’t gotten a haircut in months – my hair is longer than it’s been in 40 years! I’m enjoying the new experience, but I think it will end up short again eventually. Susie’s sports resumed, so there was driving to practice and going to games for a while. It’s nice to have Susie home during the day, and I’m sure I’ll miss her when they go back to school in person. I can’t even imagine if Karen was in treatment now with all of this. She hated being in the hospital alone, and didn’t even like to go to appointments by herself. This would have been very stressful! But as I sit here typing and crying, I wish she was still here, even if she did need to go to the hospital a lot. One of Karen’s cousins turned 40 this year, as part of the large number of July birthdays in our family. She was outside playing with her daughter when a butterfly appeared. She took a few pictures – it was that close - and sent them to me, saying that she always thinks that Karen is paying her a visit when she sees a butterfly. I was driving when the messages came, so Susie read them to me. I had forgotten how hard it is to drive while you are crying. When I finally replied, she sent a video, showing the butterfly following her daughter around the yard. She said it stayed around them for a couple of hours – it was definitely a visit from Karen. She loved Maine in the summer, and would have wanted to celebrate the big birthday! In my last post, I mentioned how I wished Karen was still here to celebrate her own birthday. Recently in a dream (most of which I completely forget) there was a fancy custom chocolate bar, and it was imprinted with the words “Karen is celebrating lots of birthdays.” At the time of the dream, it made me so happy! There was another dream, months later, where I was getting a haircut, and Karen was in the chair next to me. She looked so good, and so happy. I love those dreams, and I wish I had more of them. Camp Sunrise was virtual this year, of course, and one Sunday in July we went to help pack the “camp in a box” boxes that went to each camper and staff member. It was so nice to see so many friends, after months of isolation. We had also volunteered to deliver some of the boxes. Some of the parents sent me pictures of their kids unpacking their camp supplies, and they were all so excited! Matt was a counselor, and he came home to do all of the camp activities – castle cake, smores, tie-dye, polar bear swim, etc. It’s not the same as all of the kids all being together, but I’m sure they all had a great time! We passed that other “milestone” too. I got lots of messages of love and support, and even though they make me cry, I will always appreciate knowing how many people remember Karen, how many lives she touched, and that so many people take the time to reach out. I also love the random messages from her friends and mine when something reminds them of her. Steve has continued to plan outings for us, which has been great. Hikes, bike rides, kayaking, and even a camping trip. We didn’t manage to go on a summer vacation because of all of the travel restrictions. I wanted to go to Maine, but was afraid of bringing illness with us – I’ve read too many news stories about family gatherings becoming superspreader events. There aren’t any news stories about the gatherings where nobody gets sick. Traditionally, my family gathers at Thanksgiving, and I was really looking forward to it this year. At first, we were planning to arrange testing and go anyway, but the numbers are high here and in Maine, so we stayed home. I have a friend that I met through Karen who recently got a cancer diagnosis. It’s never easy, and her experience has been extra difficult. I started to send her quotes and jokes and website links from Karen’s transplant chains, to try to cheer her up a little. I have enjoyed reading what people submitted, and seeing who sent things, since Karen didn’t really share them at the time. (She had so little privacy then, if she wanted something for herself, it was the least I could do.) I have used all of the chain links, so now I’ve started to go through things in Karen’s room, along with a poster I found in the basement that she must have had at college. It’s full of quotes, all positive or inspiring, so I hung it up on the wall near our computer. It makes me feel a little better to use things Karen had to help other people. Susie was instrumental in getting us to take on some long-ignored projects this summer. We rebuilt the shed around the pool equipment, fixed a drainage problem near the basement steps, and worked on an electrical project in the wood shed, among other things. Occasionally I get motivated enough to go through something in Karen’s room, or through things she brought back from college that have been sitting in the basement for a long time. (That’s how I found the quote poster.) Some of it is easy – I can recycle her notes from various college classes without any emotional stress at all. Some of it is much harder. I’ve kept a folder of things she wrote. Some of them made me cry as I read them, and some made me laugh too. There are blankets and other things that people gave her, that I’m planning to donate, finally. At first I kept all of it, but I’ve reached the point where, if I don’t know where it came from, it probably needs to go. So there’s a donation pile. It’s a process. If you gave her something and you might like to have it back, let me know.
Wear your mask, wash your hands, get your flu shot – there are more immune-compromised people around than you realize. Today is Karen’s birthday. It’s a difficult day. I love to get messages from family and friends who are remembering her today, but I hate that she needs to be remembered – she should still be here, celebrating her own birthday, and getting her own messages, living her life. So I read the messages, smile, and cry. Karen rarely celebrated a birthday without a castle cake, so we made one. We couldn’t decide if it should be a beach scene, or a concert venue, so we combined them. We had a stage with a full band (two guitars, keyboard, drums, and a lead singer) and large speakers, and even a light show on the big screen. There were spectators with beach umbrellas, and lots without them, a lighthouse complete with a keeper, and a heart-shaped island. We were thinking it should be a Kenny Chesney show, because of course he would have a show on a beach, but somebody suggested the band should be called “Bearly Breaking a Sweet” instead. Since I last posted anything, the world has certainly changed. A whole new vocabulary has become necessary – who would have put “social” and “distance” together in a phrase before the world was overtaken by coronavirus? And masks used to be for oncology patients, not every person you see, everywhere you go. But not anymore. During the lockdown time, I thought of Karen’s transplants, and the activity and travel restrictions because of being very immune compromised. After the first transplant, there was approximately a month in the hospital, and then the rest of the first 100 days was supposed to be within 30 minutes of the hospital. We don’t live that close, so we stayed in an apartment provided by the Believe in Tomorrow Children’s Foundation (believeintomorrow.org) in Baltimore. It was a lot like the lockdown – we only left for food and medical appointments. And like the lockdown, we opened back up slowly, with constant hand washing, and Karen wore a mask EVERYWHERE. I don’t want to be political, but when I hear people complain about wearing a mask, I just want to scream at them. Karen wore that mask through her initial treatment, and again during all of her relapse treatment, and she rarely complained. It must have been much harder, too, because she was the only one wearing one, so she really stood out, not like now, when an unmasked face is unusual. During Karen’s transplant times, she had paper chains with jokes or song suggestions or links to interesting things, and each day she would open one. It was a great way to mark the days off – the links were numbered from 1 to 100 – and feel connected to the friends who had helped create the chain. {Karen posted instructions for how to make a chain in the Resources section on this blog.) If I had been organized, I would have posted one of her chain things each day during the lockdown time. I still can, if anybody is interested. Let me know. I went to Florida with my sisters just before life got insane. So much fun, and so important to spend time together! We went to see my dad, went to a beach, put together a puzzle, did an escape room, played shuffleboard, saw manatees, and did a couple of home improvement projects. One sister runs a college health center, and some of the students had gone to Italy for their spring break. Italy was a hot spot, and coronavirus was barely on the radar of anybody here, but her vacation was filled with meetings about what to do with those students when they got back. It turned out not to matter, since everything on campus ended for everybody anyway. We were supposed to volunteer at SunSibs again, but they decided to have virtual camp instead. Each camper or family got “camp in a box” delivered, and there was a platform to host group chats and post pictures. They had virtual polar bear swims, held their dance, and even managed to get some pranks in. It was a wonderful experience! The planning committee did an incredible job. Not surprisingly, Camp Sunrise will also be virtual this year, and I’m sure it will also be amazing. Steve has been doing his best to keep us busy but socially distant. There have been hikes, kayak trips, and many bike rides. I love the hikes and bike rides, and I’m very happy to be the designated driver on the kayak trips. I did go along on one kayak trip, with some friends. We went to Mallows Bay, on the Potomac River. There are a lot of scuttled World War I cargo ships there, and you can kayak around the remains of them. Some have become islands, with trees growing in them, and there are a lot of birds. There are also beaches nearby with fossilized shark teeth and manta ray jaw pieces. They were all much smaller than I thought they would be, but once we knew what we were looking for, they weren’t too hard to find. A lot of the places we go are nearby, and we’ve been there before, frequently with Karen. Each time we go now, I remember those other times with her. I’m waiting for the memories to just make me happy (that’s what the books say will happen, eventually) but I’m not there yet, and it still makes me sad. Karen loved to take pictures, so I try to take some of the ones I think she would have taken. Hers would have been better!
(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. |
AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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