When Jason was battling Glioblastoma I faithfully kept up his Caring Bridge site. Although I had never written much of anything in the past, I found that many people enjoyed my writing style…loved being able to keep up with our journey…learn more about us through my posts…and that the writing was therapeutic for me. Now I hope that with this blog I can continue to reflect on the past…mourn in the present…and maybe find some hope for the future.
Love was the building block upon which Jason and I built our whole entire lives around. We loved each other and our children with everything we had. I’m not sure yet what my life looks like without the love of my life in it. It is hard to look forward to a future of loneliness. I am grateful that he left me with three beautiful children to live for.
Tennis has been a big part of our lives from the very beginning. It is what brought Jason to UW-Eau Claire where we met. Jason played tennis for many, many years and we made numerous fantastic friends through tennis. Many of our trips and great memories are tennis-related. Our children have all been involved in tennis…playing and coaching. I work at a local fitness club in the Tennis Center and have a great support system there.
Cancer is a word that you never, ever want to hear in relation to someone you love. Glioblastoma in particular is not something I would wish upon my worst enemy. It is a brutal disease….stealing away bits and pieces of its victim little by little, day by day. For 15 months cancer consumed our whole entire lives…and now our lives are irreparable changed because of it.
And everything in my mind is screaming
And my soul is pleading
And my heart, my poor heart
I add another brick to the wall
But the foundation crumbles
And the words keep battering
And the eyes, everywhere the eyes
And the fingers pointing all around
And the constant buzz of whispers
Or is it all in my messed-up mind?
And caring has ceased
But I cannot forget the love that still burns
And I feel so all alone
My love is not here
Only alive in my mind
Today was Levi’s last match of the season with Eastview. He still has Individual Sections next week…so more tennis for him to play…but his team is done. They played Benhilde-St. Margaret. He played a great match and won at 3 singles, but his team ended up losing 3-4. They had a really good season…although the weather could’ve been better at the beginning of the season especially!
Jeremy came to watch today. He walked into the spectator area with a woman that looked very familiar to me, but I couldn’t place her until he said…”Did you recognize who I walked over with? Jason’s partner…” And then the light went on. Sarah that Jason had played mixed doubles with at the last National’s Tournament that he played in November 2019. She was the Mom of one of the players on the Benhilde-St Margaret team. I didn’t know her as well as some of his other partners, but the fact that she was there nagged at my brain and my emotions the whole match.
When the match was over I went up to her and introduced myself. She already knew who I was and gave me a big hug and asked how we were doing. I got teary-eyed and had to put a huge effort into holding back sobs. Unusual for me. I don’t know if it was seeing her unexpectantly…or memories that came up…a combination…but damn that was hard on me. I told her we were hanging in there…still doing a lot of tennis. She commented on how well Levi played and I said “He’s a lot like his Dad and if there is one thing I know Jason would approve of it’s tennis. So here we are”. And then I said my goodbyes and got out of there before I turned into a mess on the court.
Unexpected triggers are hard. It’s like my legs get swept out from under me and I just can’t find my footing or my breath for a bit. Most of my days I have my guard up and I’m better prepared…like when I’m at work…most of the time my emotions are battened down tight. Today…watching my kid play…not so much.
And it’s a Wednesday…I don’t count the weeks anymore….but every single Wednesday I think “Jason died on Wednesday”.
Last week in therapy we talked a lot about how humans have the ability to feel multiple emotions at a time…sometimes very strong emotions…sometimes emotions that are complete opposites of each other. She was asking me to rate on a scale of 0-10 how often I have felt certain emotions or how strong certain emotions have been in the past week….happy, hopeful, hopeless, sad, anxious, irritated, lonely, etc.
So often the times when I would say I am feeling the happiest…I am also feeling so incredibly sad. Today is one of those days. Levi wrapped up the regular season for tennis and brought home the award for Most Improved Player. I am so happy for him and so proud of him. He worked incredibly hard all year…private lessons, drills, matchplay, etc. He never hung his racquet up or took a break…just kept grinding. He just loves the game so much and wants to play the best that he can, not only for himself, but for his team. And while I am so happy….I am so sad because his Dad isn’t here to share this moment. And it’s moments like these where I feel like praise from his Dad would mean so much more than praise from me.
I made it back home from Wabasha around 10:30 this morning. I could’ve stayed a little bit longer but my anxiety about leaving the kids home alone…human and dog…was starting to get the better of me. Seth was feeding the dogs their breakfast (!) when I got home, but he had also loaded and started the dishwasher…so there’s that.
A few takeaways from the weekend:
Laptop screens do not mix well with sunny days. It’s really hard to sit in the sun and write at the same time. So frustrating!
I do better with time alone if I am really alone…like cabin by a lake alone. I did okay eating breakfast in a local dinner by myself on Saturday morning, but other than that being around people was really uncomfortable. I was glad that I brought along frozen dinners so I didn’t have to venture out much other than walking down by the river.
Sitting by water is extremely calming. It brings me peace in a way that little else does. My mind stills and my breathing calms listening to the waves shush against the shore. I know this…but I always forget. I need to add some water to my backyard.
And lastly…but the most exciting and scary for me…I decided that I need to do something more with my writing. I revived a project that I had started a few months back that I’m pretty excited about….autobiography…mixed with poetry…mixed with pictures…mixed with songs that have spoken to me at different times in my life. I’m not sure what I’ll do with it when I’m finished…but it feels good to be working on it and like something I need to do.
After I got home I worked on hanging up some pictures around the house. I really like this frame that I filled with pictures from Jeremy and Cheryl’s wedding. I go back to that day in my head often. The Last Happy Day
Last night I watched the movie “Senior Year” with Rebel Wilson. It is a comedy about a cheer captain who has an accident while doing a stunt and ends up in a coma for 20 years. Of course, when she wakes up life has gone on around her, but in her mind she’s still 17 with dreams of being prom queen.
The movie had its funny parts but I also found so much to empathize with. No, I was never cheer captain or the most popular girl in school. I never had aspirations of being prom queen. But I do feel like life is going on around me while I’m still somewhere in the past…not 20 years, but 2 years for sure. In the movie, Rebel’s character tries to make her old goals and dreams fit into her new life…and while that makes for great comedy as a 37 year old goes back to high school…it just doesn’t work well. But what is one supposed to do when one’s life changes so drastically in ways one never would have chosen or imagined? When the change is so big that the very threads of one’s identity are either completely broken or unraveling. When not a single dream or goal from before is relevant or obtainable. And life goes on all around…for everyone else.
I ran across this infographic the other day that pictures all of the secondary losses that occur when someone loses their spouse. A couple of these don’t apply to me….I still have my job and I’m not in danger of losing my house, although I would say that it doesn’t feel like “home”. And these are not even all of the things I feel like I’m grieving. I feel grief that Jason doesn’t get to experience a future with me and our kids. I feel grief that my kids don’t get to have their Dad and our grandkids won’t have their Grandpa. And on top of that is the trauma from watching the love of my life suffer for 15 months before dying in front of me while I was powerless to stop or fix anything. I feel like it would be easier to pull a Rebel Wilson and go back to school and become prom queen than it would be to have any sort of hopes and dreams for my future.
And so for now I am just treading water. Staying afloat. Trying to be a good Mom to my kids…making sure they have everything they need. Forcing myself to keep on kicking when I really don’t want to. Goals for today: enjoy nature…walk by the river…write…sit in the sunshine…get an ice cream cone. Today is going pretty well so far.
So…this weekend I was supposed to be enjoying Girls’ Weekend with my sister-in-law and my friend Terri. Doing all the wine drinking…or vodka soda drinking…we could and wreaking havoc on Wabasha, MN. In other words spending our money libating at the local establishments and scouring the boutiques for “must-haves”. Well…as usual…things didn’t go as planned. Terri had a conflict with a trip to Florida and had to cancel. Bummer, but Cheryl and I were going to pick up her slack and party twice as hard. Well, that plan also died when Cheryl tested positive for Covid on Monday. And not the “oh I’m positive, but I don’t have any symptoms Covid”. The “oh my God I got hit by a truck and I’m dying Covid”. So suddenly…no Girls’ Weekend…but I have a VRBO in Wabasha I’ve already paid for and can’t get a refund on.
So I’m frustrated…and angry. Not at either one of them, but at how life has to keep throwing me freaking curveballs. And that’s how I went into my Friday therapy session this morning. And Connie worked her listening magic once again. Let me bluther and cry not only about my “ruined” weekend, but about all the other things I didn’t know I was even thinking about under the surface. And by the end of the hour my whole mindset had changed and instead of being frustrated and angry at the change of plans I was looking forward to having more of a “writing retreat” type weekend. The location is not exactly what I would have planned for such a thing…put me in a cabin by myself on a lake…but I do have a balcony where I can see a small stretch of the river…so I’m making due with that.
On the way here I drove through Red Wing….where Jason grew up and his parents still live. I was reminiscing about the first time Jason brought me home to “meet the parents”. It was January of our Freshman year of college. Red Wing is a pretty small town now…it was even smaller back then. No Target or Walmart. His Dad was a teacher at Cannon Falls High School and his Mom worked for Goodhue County. They were both at work when I got there. Jason was trying to fix something with he and Jeremy’s computer that he had messed up. And I was sitting in Jeremy’s room looking through their high school yearbooks while he did that. I don’t know why I remember that so well. I slept in Jason’s room and he slept in the basement. His parents would leave for work in the morning and I would sneak downstairs to cuddle with Jason for a few hours until we got up for the day. He struggled to find anything in Red Wing to show me…Treasure Island Casino (we went inside the lobby and saw the waterfall)…the Pottery…Red Wing Shoe…the St. James Hotel…the lock and dam by the nuclear power plant. We went to see the Titanic in the movie theater and his high school buddy let us in for free. Good memories.
May 12, 2020…two years ago today…I dropped Jason off at the door to the hospital the morning of his first brain surgery. Not able to go in at all because of Covid. I spent the day surrounded by family and friends…while he was all alone. Worrying…pacing…waiting for calls from the surgeon and nurses updating me on how he was doing. I didn’t get to actually hear his voice until about 7pm.
He was only in the hospital for two days…he came home on the 14th…but those two days felt soooo long. Everytime I was able to talk to him on the phone or Facetime with him I could see how badly he just wanted to be home. I knew from that very first hospital stay that when the time came for hospice he would be at home with me…in our house. I had no idea what I was getting myself into and how those days would haunt me…grab ahold of me…not let go…wake me in the middle of the night with tears streaming down my cheeks…replay over and over….like my brain just can’t make sense of it. Would I do it again? Yeah…for him.
Right before his surgery, a friend arranged for us to have family photos taken. Check out the long hair…and the covid grey roots…yikes! Most evenings you could find Jason and I like this. Me with my hand in the crook of his arm…each of us with a dog…going for a walk. Feels like a different lifetime. And to think that two years ago two nights without him seemed like forever…
I have been trying to gather up some motivation to get out in my yard. We have a gazebo that was always a bit of an oasis for us that we spent a lot of time in…especially the past two summers. I always looked forward to getting it all set up for the summer. Usually as soon as I thought it was done snowing I would be out there getting the roof and the walls up…planting my pots…enjoying evenings or early mornings by the fire table. This year I look out at my yard and all I see is a long list of “stuff” to do….either by myself or bugging the boys to help me.
I finally went out this afternoon for a little bit. The roof on the gazebo is worn out. I threw it away. So now I’m going “topless” for the summer. My next door neighbor chuckled when I told him that. I decided to leave all my pots for Anna to plant when she’s home for the summer. I did put some seeds out for the birds and made sure to fill up the peanut feeder for the blue jays. Jason gets a kick out of watching them. I put out my hummingbird feeder on Sunday and have had a pair busy humming back and forth. And that’s as far as I got. I didn’t even walk around my gardens at all. It’s just all too much and very overwhelming. I guess what doesn’t get done just doesn’t get done….but I made a little progress today.
Mom. The role in my life that has literally kept me going these past 9 months when I felt like giving up. Like staying in bed instead of going to work. Like getting in my car and just driving away…cutting all ties to anything here. Our three kids…created out of love…bits of both of us…have kept me rooted. Kept me fighting. Made me smile. Reminded me that there is good left in this life. I am so incredibly thankful for them.
Being Mom is never an easy task….the past two years have been almost impossibly difficult. Heartbreaking conversations. Heart-shattering moments. Endless worry…so much worry. Not knowing how to help them with their grief….how to make sure they are doing okay. Constantly trying to stay in-tune with them while I’m feeling so out-of-tune with life myself. Recognizing that their grief doesn’t always come out as sadness…often it is anger…or crabbiness…or quietness.
Jason would sometimes leave for a few days to go to conferences for work. I always struggled during those few days…being home alone with the kids. I would joke with him that I wasn’t cut out for single parenting so he better get home soon. Joke was on me I guess.
Jason always made Mother’s Day special. It didn’t matter how young the kids were he would load them up in the car and take them to buy me flowers…and usually come home with balloons too because the kids liked them. Then he would make sure we spent the day doing what I wanted. Usually that meant some sort of Forced Fregien Family Fun…hiking…or going to the arboretum…sometimes we would spend the day in Red Wing relaxing at his Mom and Dad’s.
Our kids paid attention. This year Anna surprised me by coming home for the weekend. Yesterday her and I went down to Red Wing and planted geraniums in his Mom’s planter…just like we would do every year. Anna, Seth, and I went to a movie together last night while Levi was at his girlfriend’s house. This morning they set their alarms to make sure they got up early-ish to have breakfast with me…Anna baked…and got me a beautiful orchid. I had to work this afternoon, but Anna decided to go back to school tomorrow morning so that we could all go out to dinner when I was done with work. We took the dogs to the park to play. Started doing some research for our Portland trip.
It’s days like today that I can take a deep breath and feel reassured that our kids will be okay. Even though I often feel like I am just not enough. I need to remember that Jason is still living in them…through actions that he modeled….through words that he spoke….in their very DNA he is there. I’m not really parenting alone.
Today I had my weekly appointment with my therapist. It started very similarly to last week. Her asking how my week was and me just talking and crying. I had a few specific things on my mind today that she helped me talk through a little bit. Somehow she’s really good at both validating my feelings and helping me see things from different perspectives and that helps “unwind” me a little bit I think. Jason was really good at doing that for me as well…which I actually didn’t connect until I just wrote that. Maybe that’s why I find her so easy to talk to. There’s just something about her demeanor that reminds me of him.
Anna surprised me today by coming home for Mother’s Day weekend! Tomorrow we are going down to Red Wing to visit with my in-laws. On Sunday I will have time to spend with her in the morning before I go to work and she heads back to school. It is always the best when the kids are all home.