Little known fact: Michelle and I are Potter heads. We both really like the magical world of Harry Potter. So, we saved a day to experience Harry Potter World. That was fun. We had frozen butter beer and attempted to not get poked in the eye with rogue wands being waved. We also went through other parts of the park, like Jurassic Park. We put 20,000 steps in and had a great time taking in the sites and just people watching. There were a lot of families all dressed up in Harry Potter costumes of some sort. The weather was great and we spent the day just wandering around. We finished our day at the Chocolate Emporium. I got the biggest and best sugar cookie I have ever had there. I made it last two days! The rest of our trip is mostly caught on my good camera…so it may be a bit before I can get to those, as I am heading to Houston tomorrow (driving). I will try to get them up soon!

I flew into Florida last Friday and stayed with Rich’s cousin, John and Kim. They were such gracious hosts as I showed up on their doorstep at near 1 a.m. We spent Saturday morning catching up before I went to the airport to pick up Michelle. She told me years ago that she wrote a report about manatees when she was in the 3rd grade and has loved them ever since. She had never seen one live before. I thought we should change that. We have been talking about this trip for several months now. We decided that the depths of winter would be the best time to get away from the snowy midwest and to reconnect with one another after the tough parts of the holiday season. We went to Clearwater Marina and spent some time soaking in the sun and walking in the sand and getting our feet wet in the surf. We then went on a boat to watch the dolphins play and the sun set in the gulf. I have some photos of that on my good camera, which will come later. We then drove up to Crystal River, where we stayed in an air bnb for two nights. It is a cute little town, and we had a great time eating at local eateries and going to art galleries to see local artwork. On Sunday, we got up and in 42 degree weather, went kayaking in a clear plastic kayak. It was a tandem kayak, so Michelle was in the front and I was in the back. We could see the fauna in the water underneath us as we paddled around Kings Bay. We found some manatees pretty quickly. That afternoon we then went snorkeling with the manatees. I took some photos but the guide in the water with us had a much better view and a much better camera. I bought those photos she took. I am not a good underwater photographer. We also went to the TECO Manatee Viewing Center in Tampa a few days later, where there were dozens of manatees (including babies) in a small bay. They discharge clean, warm water and the manatees love to come in there and warm up. Anyhow, here are some of the manatee photos from our three manatee experiences. Michelle and I were happy that we missed the Manatee Festival (which is going on right now). The winter is the manatee season…and we have decided that we love the phrase, “When life gets stressful, just relax and pretend you are a manatee.” Fun fact: they are huge and incredibly docile creatures. They don’t have an amygdala…the part of your brain that controls your emotions. They don’t get overly upset about anything. They are big swimming potatoes. I actually almost ran right into one, because I thought it was a sea wall. It was a barnacle covered manatee. They also have hair…about 2 inches long. If you ever get the chance to visit them….do it!

I have been gone over the last week to Florida. I purposefully did not bring a laptop or tablet to do work on. I wanted to devote my attention to just being in the moment. However, I had so many wonderful moments that now I want to share with you all. Before I move on to Florida stuff (which will be in another post) I wanted to share something very special that happened in the last 24 hours or so.

I flew home on Friday evening. I happened to be sitting next to a retired firefighter/EMT from Norfolk, Nebraska. He and his wife moved down to Clearwater a few years ago after a particularly cold winter snap. My phone screensaver has been Joe’s bunker gear when he graduated from the Olathe Firefighter Academy back in 2021. He asked me about it and I told him about Joe. I told him how incredibly awesome OFD was when he died. They literally carried us through that difficult time along with his army national guard unit. The man sitting next to me told me that Joe was also an awesome person because he, too, was a fireman, and a part of that awesome group of people.

I was in the middle of doing laundry and catching up on bookkeeping from work when the UPS truck dropped off a small package on my doorstep. It was from the Olathe Fire Department. I was blown away by the contents. Love those guys and gals so much. They really step up and do something wonderful when I really need it.

I know this is out of order, but I just got around to processing these photos. The day before I had my surgery, the sun was actually out, and I could use the natural light in my house to take a few photos of things that really defined my feelings of this first Christmas without my Joe. It was snowing outside and so I thought I would start out with the easy stuff…. easy on my heart anyhow. I wanted to take some photos of Tallinn outside with the snow gently falling. Well, that nut of a dog decided that he wanted to try and catch the snowflakes in the air. He just couldn’t help himself. He is a fruitcake, but I love him. Then I decided to test my dog lover’s patience even further and see if I could get a santa hat on him and take a picture of him in front of our Christmas tree. That is a two-person job. I am only one person. He enjoyed carrying around the Santa hat, but definitely not wearing it. I did manage to get some reindeer antlers on him that we have tortured many family dogs over the years with. He was not happy. So, I gave up on cute Tallinn Christmas photos and went to take some photos that were more for me…and how I was feeling without my Joe this year. I set everything up and Tallinn, who had unrequited love for Joe, just curled up around my items I had laid out and wouldn’t move. Joe wasn’t really fond of Tallinn, although I think when he was able to spend time with him when his two dogs weren’t there, he realized Tallinn was tolerable. But Tallinn really liked Joe…and he absolutely loves Tim. We joke that it is because he recognizes the ginger hair on them as being one of “his people”. Anyhow, I am guessing some of you will be thinking these photos are weird. They come from my heart though. I have been journaling letters to my Joe since right after his Celebration of Life. It allows me to talk to him and it is also a record or how far I have come in this grief journey….and how much further I have yet to go. This is my blog…so it is a no judgement area. This was me using my form of art to grieve my son this first Christmas. I was only going to keep these for myself but decided last minute to share them.

I wanted to hop on here real quick and give a happy birthday shout out to Lily Su Grace! Happy 18th birthday! It is amazing how much she has grown since we adopted her in China 16 years ago. She was so shy and afraid of everything…even a slide at the park terrified her….momentarily. She always seems to conquer her fears and just go into life headlong. Her dad and her brothers are always egging her on, but she has learned to give as good as she gets. Her quick wit is amazing and she makes me laugh every day. I don’t know if she understands what a gift that is to give to someone….to make them smile and get them to belly laugh. In every state but Nebraska, today she is the age of majority…an adult. She has less than 6 months left here, so she’ll be a legal adult somewhere soon! Speaking of somewhere….she is supposed to announce where she wants to go to college to us tonight. I am excited to hear where she wants to go so we can start helping her move in that direction. But for today, we are just giving thanks for this bright light that was added to our family a little over 16 years ago. Our family would be so much less lively without her. So heres to my beautiful, witty, snarky, clever daughter, Lily! Happy Birthday, Honey. We love you so very much! Here are 18 photos from across your life with us….taken all over the world.

I type this as the last few minutes of 2022 come to a close. Rich is out of town and spending tonight with good friends from high school in New England. Tim is back in California and Lily is staying the night with her best friend. Just Tallinn and me tonight. I had a nice chat with Michelle this afternoon. I verified that I am not crazy…. entering a new year is harder than Thanksgiving or Christmas without Joe; going into a new year without him is just hard. I have mixed emotions about 2022. It was the hardest year of my life. There is a quote going around social media that says the following, “May the tears you cried in 2022 water the seed you planted for 2023.” Sounds like a wonderful platitude, doesn’t it? If it were true, we would have no issues with global warming because I would single handedly be growing a huge tropical rain forest from the tears I have shed. Although it was a hard year…I at least started it with my Joe. His physical life stopped in 2022 and therefore, I feel like I am being dragged into 2023 kicking and screaming because I want to stay in 2022…where he still is. Sounds kinda crazy, doesn’t it? I have been talking to several grieving moms and it seems to be a common thread. But onward I must go…. carrying my memories of Joe with me to continue to share with the world.

2023 will be a year of changes for our family. I was contemplating trying to start up another photo 52 challenge. The group I feel most comfortable being a part of for this challenge says you have to have a word to concentrate on and reflect in your photos. Whenever I think of 2023, the only word that comes to my mind is CHANGE. All four of us will be moving this year to different states. Tim will be changing jobs. Lily will graduate and go to college. Rich will retire (again). I will work on starting a photography business and writing more. I am going to allow myself to set boundaries and say goodbyes to those people in my life who are not allowing me grace in my life. I am going to just let go and concentrate more on the tight tribe who support me. I am going to spend more time doing things that fill my cup, that I enjoy. I am going back to the basics: faith, family, fun.

As the last minutes are ticking by, I wish you all the best in 2023. I hope it brings us all good health, more laughter than tears, and lessons learned which can employ to allow life to be a little easier. We all need that grace. Love to you all. Have a blessed 2023.

Wishing you all a very Merry Christmas! As a Catholic, we have the Christmas season…so we are still celebrating. When I last posted, I was pretty bummed. We weren’t sure Tim was going to make it home at all. He was one of the casualties of the great Southwest Airlines breakdown. Luckily, Rich found another flight a day later from another airport on another airline. Tim ended up taking off at midnight from San Francisco and landed here in Omaha at 5 a.m. on Christmas Day. Rich picked him up and brought him home where they both went back to bed until about 10:30. We are so very thankful he was able to come home. We have a lot of friends whose children did not get to make it home at all between the bad roads, the frigid temperatures, and the airline craziness this year. My heart goes out to you all especially. Starting at noon on Christmas Day, the doorbell kept ringing as friends of Joe’s came by to say hello and spend some time with us during our first Christmas without Joe. His best friend, Zac, was up here with his family and they all came by to smile and laugh, and talk about the crazy adventures Zac and Joe had in high school and college. James, another good friend of Joe’s from Bellevue West High School, was also in town on break from med school. It was so nice to spend some time with him as well, as he lives on the east coast now. Tanner and his wife, Megan, and 5 month old daughter, Sugar Donuts (Charlie), also stopped by. It is always so fun to watch them parent….as I know Joe and Michelle would have been top notch parents as well, so I live vicariously through watching them. So the whole day was spent standing in the kitchen eating goodies, catching up, and also remembering Joe. What wasn’t there was Joe’s laugh….he would have been laughing the whole time and had everyone else laughing alongside him. He sure is missed. This is our last Christmas in this house…with memories of Christmases with Joe and Michelle and their dogs in the mix. It is kind of an end of a chapter in my life’s book. That reality is kind of hard but I am trying to look forward to making new memories wherever we end up.

I wanted to share a few photos. We went to Christmas Eve Mass at 4 p.m. and I was a lector for the first time in over 3 years. It was nice to participate in Mass again. I am also on the schedule for Eucharistic Minister of Holy Communion as well. That has been good, too. We always take a family photo on Christmas Eve after Mass, so this is the 2022 version. We’ll have to take a photo of us with Tim before he leaves. I honestly haven’t taken one photo…phone or otherwise over the last several days. I also wanted to share with you what one of my best friends sent me for Christmas. I made a cairn (rock pile) to represent our family when I was walking the cliffs of Moher in Ireland in August. She took that photo I took and put scripture to it and had it printed on a ceramic tile. It was just such a very thoughtful gesture and I appreciate it so very much.

I am still supposed to be taking it easy for the next week to insure my stitches don’t tear, pull or anything else that sounds awful. I am going stir crazy though, so it has finally managed to hit freezing here today (32 fun filled degrees) so we are going for a walk. I know Tallinn will appreciate it as well. Thinking about a trip to the zoo tomorrow with the kids and Rich. I would really love that. Other than that, I have been losing spectacularly in all board games as is my M.O. I actually bought some new board games this year in the hopes that I will have a fighting chance. We shall see. Sending love and warm thoughts to you all this season.

I promised myself I would just rest yesterday, but I wanted everyone to know that my port is out and all is good. I had to be at the surgical suites at 0630 yesterday morning for surgery at 0800. I was a tad concerned because of the awful weather that was predicted overnight Wednesday into Thursday. It was snowing and the wind was blowing really hard when we left at 0600, but we did not have any issues getting to the hospital or getting home. We did stop at a red light (because I was in the car…anyone who knows me, knows that if I am in the car or on the phone with someone driving, you will hit every red light – it is an uncanny gift) We sat at the light and the winds just rocked the care back and forth, buffeting it as we waited to move again. The hospital staff had arrived early, and so did we. I check in and called back quickly and had an IV in and was ready to go by 0700. I went into the radiology OR suite at 0800 and was back in recovery by around 0900. We were out of there around 10-ish. I came home and just bundled up on the couch and watched TV with Rich and Tallinn for the rest of the day. I was awake during the procedure…they put me under “twlight” anesthesia via IV. Since Christmas is just a few days away, there weren’t any students practicing on me, which was great. It was quick and easy and there were no complications. The doctor showed me the split in the tubing of my port that was in my neck. It was about a half an inch long. Definitely not good. So the port is out. I am sewn up and just trying to remember to take it easy and heal. I had an ice bag on my incision site which helped tremendously with the pain when the local wore off. I have taken Tylenol a couple of times, but it seems to be fine now.

Thank you to those who sent messages of support during this unexpected medical mishap. I am happy that it is over and happy to not have had any complications. I am not without extra parts for the first time in three years, (besides the alien tumors in my body). I am not sorry to say goodbye to broken foreign objects in my chest and neck.

Today I overdid it a bit and will most likely sleep well tonight. I wanted to get some sweets done for Christmas, since Tim was going to be coming. He was supposed to arrive at midnight tonight. I am now hoping he will make it at all. All the self help kiosks are not working in the San Jose airport, so he jumped in line to check his bag. His flight has taken off while he was in this very long line….over 2 hours. Rich has been on hold with Southwest Airlines customer service for 1 hour and 45 minutes. It is a hot mess. He was going to miss his flight in Denver anyhow. At least he is stranded at home, I guess. I am hoping he will be able to be re booked for tomorrow. Fingers crossed and a prayer lifted. I would really like to have him here for Christmas.

Well the last couple of days I have been busy getting a bunch of appointments set. Although the radiologist that I saw on Tuesday said I could do activities, I don’t think she realizes the amount of activity I am used to doing. With a broken piece of plastic in my neck, I am not willing to take crazy chances. I have a couple of adult dance group performances in the next few days and I will do those, but am not going to be doing the big, fast, and furious dancefit and group fight classes until I have healed from surgery, so at the beginning of the new year, I think. Pushing snow off the driveway was my exercise today. I would have taken Tallinn for a walk but it was SLICK in my neighborhood today and pretty windy and cold. Tomorrow afternoon I have an appointment with an oncology nurse practitioner, who will make sure I am healthy enough for the surgery. No one has listened to my heart or lungs for over 2 years thanks to COVID and my local doctor, who prefers to just do a zoom call or a phone call every 4 months. As long as nothing remarkable shows up during that physical, I will be first case next Thursday morning, Dec 22nd. My local doctor does not feel that I need another port at this point, so they will just be removing it. It should be an easy enough procedure, but they did warn me that because I have had this port for 3 years, that there may be a lot of scar tissue adhered to the port, so just to be aware of that. I should be home by noon that day to recover and lounge around the day. Tim will arrive late the next night, so I should be feeling a bit better by then. I will be sore over Christmas, but we will be having a quiet, at home affair, which will do just fine. I also got my CT scans set up for January 30th…then my zoom appointment with my Mayo Clinic sarcoma specialist to follow in early February. So I am set for now! Thanks for all of your prayers !

I guess it has been a while since I have updated this blog. I don’t have a really good excuse for that. Thanksgiving was hard without Joe, but it was so absolutely wonderful to have Tim home, even if it was for just a few days. A lot of board games were played, good food eaten, and basketball watched. Thankfully, he is able to come home again for Christmas. I am so very happy about that! I realize that our years of all being together for the holidays are coming to an end…with Joe and Michelle and their dogs not present, it is so quiet. Tim is looking to be hired this spring as a head strength and conditioning coach for basketball at the university level. The holidays happen to fall in the middle of their season, and they are typically celebrating Thanksgiving at fun locations playing in tournaments. We may just take a trip to wherever his team is and take in the festivities there. So, Thanksgiving will most likely look very different from now on.

Lily has been accepted to the three universities she applied to: Montana State University, the University of Central Missouri, and the Kansas City Art Institute. All of these schools are excellent and very different. She has a large school, a medium-sized school, and a school half the size of her high school in the mix. She hasn’t said which one she is leaning toward. She would be closer to us if she went to MSU…but still 5 hours away. If she goes to school in KC or UCM, she will have her sister-in-law close by and Joe’s circle of friends, whom I would think would help her out if need be. They have all watched her grow up. She was reflecting on that last night. All of Joe’s friends are about the same age 10 years ago as she is now. She said that she is her own person now, not just Joe’s “durpy little sister.” I look forward to seeing where she decides to go. Her best friend was also accepted to KCAI, so I am sure that will hold a little clout as well. Both of them got significant scholarships and there is an art scholarship from her high school available as well if she decides to go to KCAI.

Rich is down in Florida right now helping his sister and parents move into their new house. His mom suffers from dementia, so it has been a bit of a struggle as today is moving day. I am glad he was able to go down and help because it sounds like they needed the extra help. Plus, it has been gray, raining, and blustery since he left here. I hope he is getting to enjoy the weather a little bit. He will be home on Friday, just in time for our first snow fall of the year, if the weatherman has it right.

I have had a few health issues. Actually, it isn’t my health, it is the extra pieces in me thanks to cancer treatment that are going awry. Three years ago TODAY, I had my port put in. It has worked beautifully for me…until Thursday morning’s treatment. They went to flush it and it felt like lightning flashed up my neck. It was horribly painful. She was able to draw blood just fine, but then went to flush it again, the lightning pain started again…and then the port tubing in my neck started bulging. She stopped immediately and then started an IV in my arm to do my infusion. She contacted my oncologist and let him know my port needed to be checked. My neck was bruised all weekend and it was so sore. I was taking photos at a church event on Friday night and just the feeling of the camera strap on my neck was incredibly painful. By Monday morning, my neck was feeling better, but it was pretty concerning. Fast forward to today. I went in first thing this morning for a port study or venogram. They lay you on a special table and you have an x-ray machine with a plate hanging over you to isolate my chest and neck. They took still photos first but could not see anything obviously wrong with my port. This was my biggest fear, because I knew what was coming next. They accessed my port and then slowly started pushing dye through the tubing. Sure enough, that lighting effect started. I told the doctor that I was hurting and that the tubing was again, bulging in my neck. She, of course, decided to keep going to just make sure and get good pictures of THE LEAK THAT I SAID WAS THERE. She showed me the scans and it is obvious that my tubing is fractured in my neck. The doctor decided to take out the needle to my port. I am not sure if she had done that before (it’s a nurse thing). When she finally realized how to take it out without hurting me further, she popped the needle out and I started bleeding from my port site. I am on blood thinners. I don’t bruise easily…. even on blood thinners, but I do tend to bleed when poked. She is standing there, looking horrified (at least through her eyes) as she placed a gloved finger on the site and asked for a band aid….and then a gauze pad to “clean up my skin”. One of the main lessons you learn in nursing school is to have all your supplies with you before you start a procedure. Sigh. Anyhow, I received an email from my oncologist’s nurse saying that my port is fractured, and they choose to just remove it at this time and not replace it. I need port access 7 times a year, so I will just get IVs started rather than having a port put in. So, she sent me a number to call to schedule my port removal. My oncologist has not seen me in person for maybe two years. A requirement of the surgery is having a physical of some sort. I haven’t’ seen my doctor at the base for over 5 years. I go to the cancer center every month. Trying to get into the clinic for a physical could take months. I told the lady on the phone this. It is a teaching hospital for goodness’ sake, I am sure my oncologist has a resident that can do this. So, she was going to call him and get back to me. That was a couple of hours ago. Hopefully we can get this taken care of very soon. I have a trip planned to Florida with Michelle in early January to swim with the manatees and I want my incisions healed before getting in the ocean water! I will keep you posted on surgery dates.