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.
It’s been a while since I wrote anything here, and I’ve been getting signs from Karen that it’s time. There was an email from a friend with a picture of the sign at their local Mexican restaurant. There was a butterfly on my walk the other day, and it’s getting kind of late for butterflies here. There was a message from one of Karen’s oldest friends (all the way back to first grade!) that she got engaged. And there was a word game where the daily puzzle answer was “taco.” So here I am. (a note: I didn’t post this the day I originally wrote it – I wasn’t happy with it, or something. This morning, there was another sign from Karen to get moving… A food truck drove by that said “TACO TRUCK” on it. It was a happy day in Karen’s life when the food trucks at Drexel took payment methods other than cash!)
This weekend there is a 5k race at UMD that’s a fundraiser for the Hebda Foundation. They asked Karen to speak at their gala one year. It was during a remission, and she was at school in Philadelphia most of the time. She didn’t want to come home an extra weekend to speak, so they made a video instead. On the day of the filming, we came home from somewhere to a house full of video and sound equipment. It was QUITE a production. Now I’m so happy to have this video, so I can see her and hear her anytime I want to. http://hebdafoundation.org/why-we-exist
I used to tease Karen sometimes, and tell her that we were going to have a potluck dinner at a firehall for her wedding reception. My mother went to a potluck wedding reception, and she said it was wonderful. Once when we were getting the oil changed in the car, this random person in the waiting room started telling us about the local fire station’s social hall, recently rebuilt after a fire (yes, a fire at the fire station) and how nice it was. He went on at some length, saying it was so nice, you didn’t even realize it was the firehall. Of course, I told Karen we had found her wedding venue. She was very good about it (at least to my face) probably because she wasn’t anywhere near getting married, and probably because she knew I was joking. The recently engaged friend told me that she wants to honor Karen somehow at her wedding. I had lots of (mostly bad) ideas, which I didn’t share, but I’ll list them here. Tie dye bridesmaid dresses, or tablecloths/napkins, or bride’s veil. Castle cake incorporated into the wedding cake, or let the guests decorate their own cupcakes. Tacos for dinner. Or the more traditional, pictures of those who are gone too soon, which is what the recently married family members have done.
September is Childhood Cancer Awareness month. Last year, when I could see Karen’s Facebook page, I could see all of the posts about it. This year, I was relieved not to see it – I’m well aware of childhood cancer, and I already have too many reminders. Camp Sunrise lost another camper this week. I don’t know anything about this child, but I know that there is another family who lost their little girl too soon. I wish I could do something for them, but there isn’t much that helps. I have a book that somebody gave us, that I have given to others. A friend sent us some booklets about coping with grief, which arrived at various times after Karen passed away. I appreciated them so much that I’ve purchased some myself and sent them to family, friends, and people I’ve never met. These things help, but only so much.
I still miss Karen, I still talk to her most days, and I still cry (frequently!) I started a word game with a random person named Karen S, and eventually I told her why. Strangely, she also lost her daughter, but many years ago. It’s so depressing, how many of us there are.
One year ago this weekend, we had a house full of family, and more family and friends in hotels, here to celebrate Karen’s life. We had a beautiful service on a dreary Saturday, which she didn’t want, and a well-attended, very fun party outside on a gorgeous Sunday afternoon, which she very much wanted. It didn’t occur to me that all of that was a year ago this weekend until this morning, so I didn’t spend all day yesterday crying. It remains to be seen how I spend today.
Other people tell me when Karen visits them in their dreams, especially if they hear her voice. I’m always jealous, because if she’s in my dreams, I don’t remember it. Well, last night she was! I was so excited that I woke up and made sure I would remember. I almost got up then (at 1AM) to come out here to type this, to make sure I didn’t forget! Maybe I should have, because 5 hours later, the details are a little fuzzy. I do remember being very happy, because in my dream, I didn’t have to mourn, because for some reason, Karen could come back (and be alive) every so often. Oh, if only that were true!!! But I got to see her and talk to her, and I wasn’t sad.
Karen’s cousin’s wedding was fun – Karen would have loved it, except for the heat. The bride was beautiful, the groom was handsome, the setting was gorgeous. We did a mini bone marrow registration drive, and 14 people signed up to be donors! Everybody stayed in the same hotel, and we spent lots of time with family, which I always love. A word of advice… when you are taking a party of 15 to a restaurant, make a reservation first. But then you don’t have as much to laugh about later.
Our visit with our old neighbors was great, as usual. Their group gets smaller each year, as their kids go off to college and don’t come home for the summer. We went to DC and saw the Burning Man exhibit at the Renwick Gallery. A friend of Matt’s had gone to see it, and told him about the Temple, where you can leave memorials to people. The friend was planning to leave one for Karen, and saw one that somebody else had already left for her. The room was HUGE, and there were memorial “cards” everywhere – it’s amazing that Matt’s friend saw another one for Karen. I remembered Karen, David, and Dean while I was there – all three of them were adventurers who would have enjoyed the Burning Man experience we learned about.
Before Matt went back to school, we went to our favorite Japanese restaurant, where they cook the food on the hibachi grill in front of you. Karen had joined their “birthday club” where they send you a postcard around your birthday, and you can get a free meal. The last time we went there was for her birthday last year. When the postcard came, I cried (who’s surprised?) but I also decided that we were going to go back, and pay for somebody’s meal as a way to celebrate Karen. When Karen and Matt were little we went for a hike one day, and went out to eat afterwards. When it was time to pay, our waitress said that somebody else had paid our bill. We were very surprised, and we chose somebody else and paid their bill. So we sat at the Japanese restaurant and looked around, trying to pick somebody. I’m sure the other people at the table with us thought I was crazy, because every so often through the meal, I would wipe my eyes and probably look very sad. Who does that while they’re out at a restaurant?? The mom who was there with her two kids was very surprised when she didn’t get a bill for their meal. We told her we had paid their bill, but didn’t explain why. Maybe next time I’ll be more able to deal with that part.
Spread some joy around.
One year ago, our world fell apart. I know, with a cancer diagnosis, death is always there as a possibility, but you don’t really think about it, because you have to believe your loved one is going to survive, especially when it’s your child. Even as Karen had relapse after relapse, I believed the doctors were going to find the next thing, and it was going to be the one that fixed her. Even when she died, things were set up for her to participate in a study that could have been the one. She only did that last round of chemo to keep the disease level under control until the study was ready to go. Even the doctors didn’t really seem to think she wouldn’t make it, since they used the chemo that was safer for her heart long term. Unfortunately, the different formulation was stronger than they expected, and longer lasting, and Karen just couldn’t take it. I hope they learned from that, in case they need to use it again.
We’ve gotten cards, emails, text messages, and booklets from very thoughtful people, and I woke up this morning to messages from Karen’s friends, who are planning to honor her today. I appreciate all of those people, telling me they are remembering Karen. We will spend the evening with friends who loved Karen, which will be wonderful. As I go about my normal boring day though, doing laundry and washing dishes, driving Susie to her activities, I’m crying, and missing my daughter. Life goes on without her, because it has to, but there are moments when it’s just so hard.
I sit here crying, thinking about all I have lost in the last 20 months. My brother, my daughter, my brother-in-law who was like a brother. Of course, that’s not to say I don’t still have a lot of wonderful people in my life – but sometimes I’m overwhelmed by the loss.
Karen’s birthday was three weeks ago. I knew it would be a hard day for me. It started with tears (of course!) and lots of messages from family and friends remembering Karen. A lot of tacos were eaten that day! It didn’t start with Timehop for me. Apparently they had some sort of data breach, and everybody was logged out. Karen must have logged in through Facebook, so I couldn’t log her back in, since her Facebook account can’t be accessed anymore. I tried (and tried and tried) to create a new account so that I could continue to feel that connection to her each morning, but gave up after a few frustrating days. Another day, another lost connection to Karen. I miss it so much, especially as I look through the pictures for this post. It had so many great quotes, and family memories, and it made me laugh (and cry!)
We didn’t celebrate Karen's birthday in a conventional way. I left around lunchtime to begin my trip to Maine to see my mom and the rest of my family that lives there. I actually ate pizza for dinner on Karen’s birthday, one of her less-liked meals. The rest of the family did eat tacos, though, and played games, so there wasn’t a shortage of Karen-activities here at home!
While I was in Maine, we spent some time on Eagle Island, where my sister and her family have a house, and where the picture of Karen on the swing was taken. Last year, when we went to Maine just after Karen died, Steve and the kids went out there, and he took a picture of the empty swing. I thought about taking another one, but didn’t. I thought about taking a picture of somebody else on the swing, but didn’t. I enjoyed my stay on the island, and only cried a little bit as I thought about how much Karen loved it there.
We have a lot of family birthdays in July, so we had a large family gathering with tacos and a castle cake. The cake making has moved on to the next generation, with the majority of the work being done by Karen’s cousins’ kids, with supervision (and construction assistance) provided by the cousins. It makes me happy (as I cry!) to see the younger ones enjoying it as much as Karen did, and knowing that their parents will continue the tradition.
My mother lives in Maine with some of my siblings and most of their children (and grandchildren.) Mom is 87, with a list of ailments. After my brother died, her depression worsened, understandably. When Karen died, I didn’t want to tell her, because she was feeling a little better, and I didn’t want to send her back down where she had been. Of course, we had to tell her (she kept asking where Karen was, and I am a terrible liar) but fortunately it didn’t send her as far down as I thought it might. Her general decline has continued, though, and it has reached the point where she only gets out of bed when forced to, either to use the bathroom, or because her caregiver won’t bring food to her in bed. (Some do, I didn’t.) It is very hard to watch this woman who was once so active, and now chooses to barely move. It is very frustrating to see a person who has the opportunity to live, and chooses not to, when so many who wanted to live so much are gone too soon.
Our vacation this year was a trip to Michigan to visit family. We stopped along the way there, and the way back, to see some sights, including Cedar Point, which was on Karen’s list of places to go on the trip she missed last year. Karen would have loved Michigan… In addition to being a beautiful place to visit, almost every radio station we found was a country station!
Karen lost her paternal grandmother when she was 8 years old to metastasized breast cancer. When we took Karen to the hospital on the day of her initial diagnosis, I didn’t want them to mention “cancer” to her because I knew it would scare her silly, since that was her only exposure to the word. Of course, they did, and she was scared, but she was strong and faced whatever they threw at her. When her grandmother’s doctor recommended chemotherapy for the breast cancer, the response was, “I’m not putting that poison in my body.” When Karen’s doctors recommended chemotherapy, our response was, ”Where do we sign?” At the time of her grandmother’s diagnoses, there was some discussion in her extended family about chemo, and I remember some family members saying, “chemo kills people.” At the time, chemo was all there was to kill cancer. Although I know that chemo saved Karen when she was 10, I also know that chemo killed her when she was 23. I know that left untreated, the leukemia certainly would have killed her, and the doctors did the best they could. None of this knowledge makes any of my loss any easier. I hope they learned something from everything she went through. Treatment has come a long way, but there is still a long way to go.
We made castle cakes at Camp Sunrise this week. I had been to Camp to drop Karen off a few times, but rarely inside the buildings. It was Karen’s place, and she didn’t seem to want me in it when I took her there – it was always a quick goodbye, and she was off to her camp family. So when we went there for the cakes, it was actually much harder for me to be outside than inside. I guess it was good that most of my time was inside! As usual, Karen’s camp family made us feel welcome, and told us how much they missed her. Of course there were lots of hugs and tears. The kids didn’t care about any of that, but they were almost all interested in the cake and the candy! It was interesting to see how they incorporated the “Mad Science” theme into their creations. There were robots, planets, spaceships, ‘sharknado,’ and other unidentified objects. A huge thank you to the families on Susie’s soccer team who helped us bake enough cake for 12 cabins!
There are things to look forward to, many positive, one negative. Karen’s cousin is getting married, and a large family gathering is always a good thing. Some old friends from Massachusetts are visiting soon, which will be a wonderful distraction from the one year anniversary that’s approaching faster than I want it to. I have no idea how I’m going to get through that day! Of course, I will somehow, probably with lots of help from my friends.
Remember to give blood and platelets! Somewhere there is somebody who needs it.
I’ve been choosing the title for my blog post from one of the Timehop quotes, but this time it’s from a new friend who joined my club, by losing her son to cancer recently. She saw a sign with that quote on her way home from the hospital and got some comfort from it. It makes me so sad when I hear about another family going through this kind of loss. We watch our children fight so hard, and endure so much. We do everything we can to help them, and our friends and our families give us all so much support and love and so many prayers. And then we lose them, our beautiful children, who have so much potential. Having cancer changes the kids. The ones I have seen have a different perspective – they know that life is precious, and they want to give back. Karen had many organizations she supported – she volunteered, she walked, she raised money. She joined a sorority at Drexel that was service-based. These pediatric cancer patients accomplish so much, and could have done so much more, if only they had survived. One of Karen’s doctors recently left Hopkins to go to work for a pharmaceutical company. I told him that the pressure is on him, to help the kids, because we’re losing too many, and he can’t let them down.
We continue our list of “firsts” without Karen. Mother’s Day was dreary and soggy. There was a gift (from Karen?) of not going to Virginia for soccer at 7:30 AM, which was nice. There were also some delicious chocolate covered strawberries, which Karen would have loved. And there were some Timehop memories discussing last year’s Mother’s Day gift, and Karen’s input into it.
We all went to the Camp Sunrise Gala, which is their biggest fundraiser. They have the Gala every other year, and it was on Karen’s calendar on her phone. Things like that make me sad – the events I know she wouldn’t have missed, given even half a chance to be there. Lots of her friends were on the Gala committee, and I’m sure she would have been, too. (That’s when I feel the worst about myself, that I haven’t stepped up and done some of what she would have.) It was really nice to see some of the doctors and nurses that were there. When you see these people every week, sometimes multiple times a week, they really are more than just your caregivers, and you miss them when that ends (abruptly!) I cried a little bit (of course!) with a few people, but overall it was a nice evening with good friends.
Susie and Matt went to Sunsibs, the weekend camp for the siblings of the patients. Susie has gone for 6 years now, even though it is a major conflict with a soccer tournament every year. I know a couple of people who had a hard time with the idea of going back as counselors without Karen there. We went on Saturday, and did a castle cake activity with the kids, in memory of Karen. She never celebrated ANYTHING without a castle cake. I think the kids enjoyed it. There were a lot of variations on the travel/wonders of the world theme. My sister came down from PA to help me bake the cakes we needed for the 8 cabins – that’s a lot of cake!
We planted some new flowering trees around our house. They will bloom in the spring, mostly with pink flowers. Karen took so many pictures of the flowers we have, and the trees in bloom. One of the new trees is visible from her bedroom window, and I’m looking forward to seeing it bloom next spring. She loved being outside, surrounded by nature, and I know she would have enjoyed choosing the trees and where to put them, and then watching them grow. I will take good care of them so I can think of her when I look at them.
There was an activity at the elementary school where the kids went (and I still volunteer) that involved painting rocks for a rock garden. One of the staff members asked me if I wanted to paint a rock for Karen, and I asked her if she could do one instead. One day recently, she took me outside to see the finished product, and I had to guess which rock was Karen’s. So much pressure!!! But it turned out to be easy, and it’s beautiful! Karen really was a ray of sunshine.
Some of Karen’s friends came over the other day and spent the afternoon with us. It was wonderful to see them and catch up on what’s happening with them. We played cards, which Karen loved, and talked about the time they spent here with her, and how much we all miss her. Amanda gave us the beautiful picture she drew of Karen’s face, in treatment and out, all framed. For now, it’s here in the living room with the other pictures that I look at (and talk to, most days) and will eventually hang up somewhere.
A lot of the Timehop memories right now are the text messages Karen sent and received last year about her last relapse. There are messages about having to cancel her dream trip, and about starting treatment (again!) and signing consent forms. It makes me cry so much more, to read them and know how it ended, but at the same time I smile as I read them and see how much love and support she got from so many friends and family members. I miss her every day.
I’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.