Wednesday, December 4, 2019
Last night my older daughter, Megan, and I had a nice chat while she was preparing me for bed. Megan currently works three jobs to pay as much early principal on her new house loan as possible. The only time we get to talk is when she is taking care of me because she does not have any days off (that is also why I have been packing her belongings still left at my house).
 
I thought I have been doing a good job on paying my mortgage principal down. I have never, not even year one, paid more interest than principal on the mortgage on this house. It was probably only $100 or less on year one, but I still paid more principal than interest. Megan makes my efforts look juvenile. I do not know what her number will be, but she is making double payments with the second payment going directly to principal. I only paid $200 dollars a month extra on my payments.
 
When Megan told me the exact amount of her payments last night, I noticed it was $3.20 short of an even 100 number and asked her why she did not round up. She gave me that “Really, Mom?” look and told me to quit harassing her about three dollars and 20 cents.
 
I know Megan would need to change her payment amount every year as her escrow payments fluctuate to keep an even $100 number. I changed my extra payment for the first five or six years of my mortgage to keep my extra at $200 per month. Now it is about $170 per month extra principal because I quit changing the amount each year and my taxes and insurance keep going up.
 
Megan told me that she had told the general manager at her other full-time job about my ongoing cancer and shorter expected life span that day. He asked her how we were dealing with it and she said I am dealing with my emotions this time. I asked Megan what that meant. I dealt with my first rounds of treatment very well as far as I am concerned. She told me I did not deal with my emotions, I ignored them.
 
Megan thinks my writing every day is a healthy way for me to deal with my emotions. She is probably right, even though that is not why I am writing. I am writing so my children can get in my head a little when I am gone and possibly realize I am not complicated enough to need to deal with emotions. My first rounds of chemotherapy involved happy denial as my only emotion. Cancer was something to get through and move on. That is what I did.
 
When that illusion was shattered and my new reality was forced upon me, happy denial is still my favorite emotion. Angry Susanne takes center stage occasionally and I have successfully fended off the weeping woman for now. Megan has told me I should let the weeping woman out, but I am not ready for that. I am not ready to be vulnerable. (That is kind of funny coming from a 108-pound quadriplegic in a wheelchair.)
 
The weeping woman will get her day, but it is not today. I think as long as I am feeling good and feel my quality of life is good, happy denial will reign with the occasional outbursts from Angry Susanne. Once my health starts to deteriorate the weeping woman will likely come out as I need to admit the truth to myself.
 
My piece of advice to you is to acknowledge your feelings or lack thereof. I do not feel like I need a good cry right now because I am not sad. Crying is not the only way to express your emotions. I guess that is why Megan is glad I am writing. I may not think I am dealing with my emotions when I write, but that does not mean it is not happening.
 
Until next time,
Susanne

Please check out my GoFundMe page.

Tuesday, December 3, 2019 
Yesterday was rough. I started the day okay. I got up and filmed a video with my seven-year-old, Mika, for her YouTube channel because she has a late start for school on Mondays. I started to feel a little queasy before we left to walk to school, but I figured it would pass quickly. Mika and I stopped on the way to school to walk with one of her friends, and I walked back with her friend’s mom.
 
The last few blocks home, when I was alone again and not distracted any more, the nausea started becoming more intense. “Great,” I think to myself, “the week I do not poison myself is the week I get sick.” By the time my helper arrived at 11:00 a.m., I was done. My helper put me in bed, and I sent her to the grocery store to buy grapefruit soda for me.
 
I can deal with all kinds of illnesses and work through them pretty easily, but nausea puts me in bed every time. Ever since my accident, 20+ years ago, it hurts me much more to throw up sitting up. And I usually make a much bigger mess sitting up. When I am lying on my bed, I can roll to the side and put my face directly in a bucket.
 
I am very wary of nausea recently. The last three times I have thrown up were each the result of a bowel blockage and each one landed me in the hospital with a tube up my nose (darn cancer complications). I do not even like much food, but when you cannot eat for several days even an ad for a cheeseburger looks good.
 
I would lay in my hospital bed and think nasty thoughts toward all the food advertisers. How dare Domino’s advertise while I have a tube up my nose or am still on a liquid diet after they removed it. Why is The Price Is Right putting Starburst candy in their grocery game? I had my older daughter, Megan, bring strawberry Starbursts to the hospital after that episode of The Price Is Right and one of the times I was placed back on a regular diet, I ordered mushroom pizza for breakfast.
 
I drink grapefruit soda when I get nauseous because it makes me burp quickly and a lot. I have discovered that getting gas out of my belly usually gets the nausea out too. I spent several hours yesterday feeling miserable, but never did actually throw up. Grapefruit soda wins again!
 
I still get to say my chemotherapy treatments have not made me throw up, and even if I had thrown up yesterday, it probably was not related to my chemotherapy drug. I have decided that even though my ovarian cancer will likely kill me (unless I get hit by a bus) the chemotherapy treatments for it are not awful, just time consuming.
 
I do not know how long the chemotherapy will keep me alive. Dr. Doom and Gloom said possibly a few years. It could be one, three, five, or whatever. The only number I floated was 20 years and he shot that number down as not possible. As long as I feel like I do now, I can keep on keeping on. I have finally kicked the never-ending cold and feel great today.
 
My piece of advice to you is to admit your Achilles heel. Nausea is my Achilles heel; it puts me on my back (or side). I fight it if possible, but I know I need to give up my day once it grabs a strong hold on me.
 
Until next time,
Susanne 

Please check out my GoFundMe page.

Monday, December 2, 2019 
I have written about crying before. I am not a crier. I do find that I tear up at happy news, like a town giving a parade for a terminal child, more as I age, and other friends have told me the same. I, of course, do not let the tears fall out, so I still do not cry. I did let a few tears fall when I told my mom I had cancer last year (I am sure it was not more than three).
 
When I was at the rehabilitation hospital after my automobile accident, the doctor told me it was not just my body that had experienced trauma, my mind had too. He told me I would cry for no reason and have mood swings when I went home, but they would lessen and get back to normal after a time. I thought he simply did not know me and did not think twice about it.
 
I went home to my adjusted life, spent thirteen months in the hospital dying and recovering, and went home again without an issue. Then it started. My significant other, Donald, suddenly was a tear trigger. If he raised his voice, I was in tears. If he said anything I could misconstrue, I was in tears (which was everything he said to me). I was a hot mess and we argued all the time. I was like one of the silly romance heroines who is told a lie by someone she does not even know about her new boyfriend and she believes it without talking to him about it first and breaks up with him.
 
My mind kept telling me lies and I believed them. I broke up with him. We were arguing over whatever lie my mind told me one day and I decided I was done. I told my son to go get the empty boxes out of the storage shed and I told Donald to pack his stuff and go. (I may have been a hot mess, but I was still a mean hot mess.) Donald has never forgiven me for that night even all these years (and another child) later. I do not blame him.
 
I do not regret doing it. I needed to do it to get my sanity back. I wish I would have had the presence of mind to have handled the situation better. I could have sat him down and told him we needed some time apart so I could get my brain back under control. I did not. I had his son bring in the boxes for Donald to pack. I would not forgive me either.
 
It took me more than two years to get my brain back together. I did not go to therapy (perhaps I should have), because I remembered what the doctor said about getting back to normal after a time. Donald and I were already in the process of getting divorced before this incident happened, so this was not a marriage ender; it WAS a relationship ender.
 
While I was originally in the rehabilitation hospital, we were told we would need to get divorced for me to get the medical coverage I needed. Thanks to the flesh-eating disease I ran through the $500,000 life-time cap on my insurance in less than two years. Our nine-year-old son cried when we told him we were getting divorced. We told him we were still a family first and we kept our promise.
 
Our three children have never experienced what it is like to have divorced parents. When Donald did not live with us for five or six years, we still did activities together as a family nearly every weekend. Our family was more important than our relationship. Donald moved back in when we bought this house and he now needs to work hard to push my buttons (he still can bring water to my eyes sometimes).
 
My piece of advice to you is to make the hard decision even if you hurt someone else. I would take back the pain of that decision if I could, but I needed to take that step to move forward.
 
Until next time,
Susanne

​Please check out my GoFundMe page.

Sunday, December 1, 2019
I confess, I watched most of Face the Nation this morning. I know I gave up the Sunday morning political shows, but at the end of Sunday Morning the preview for Face the Nation announced John Dickerson was hosting today. John Dickerson was the host of Face the Nation from the middle of 2015 until early 2018 when he replaced the scandalized Charlie Rose as a host of CBS This Morning.
 
I liked John Dickerson as the host of Face the Nation. Every time I watched he kept the discussions respectful and I never felt like he pushed an agenda. There is a woman who hosts now (I only remember her name on Sundays, but she did not host today), and I am sure she is a nice enough person, however when I watch her do one-on-one interviews, I frequently feel she is trying to get a “gotcha” moment. She probably thinks she is simply pushing for a straight answer, but that is not the way I interpret it (there are always at least two sides to every story).
 
When CBS once again revamped CBS This Morning under new leadership after yet another sexual scandal, poor John was thrown by the wayside. I get it; I LIKE John and it took me a while to like him as a host of CBS This Morning. He is very laid back, which is why I liked him so much as a political reporter. I really wish CBS would put John back as host of Face the Nation, but then they would need to do something to the perfectly capable woman who hosts now.
 
But this morning it was John Dickerson and I watched. He was just as mellow on his interviews as I remembered. I enjoyed politics again today. Granted, it is Thanksgiving weekend, so all the hate has kind of dropped out of the news cycle and the panel was to discuss recent political books, but I enjoyed watching Face the Nation until I got out of bed.
 
Next week I am sure I will be avoiding the political shows again. Impeachment will be back in the news with Republicans saying impeachment is unconstitutional even though it is part of the constitution and the democrats will say Donald Trump is the cause of anything that is unpleasant in our country. Donald Trump will be tweeting more ridiculous nonsense to stir up the media and they will take the bait.
 
Honestly, I have never cared that much about national politics. I do research the candidates and vote for the one I think will work well with others of different opinions. I think that is why I feel so burned by politics right now. Compromise is currently a four-letter word and I live in the real world where nobody gets everything they want.
 
Compromise is still real in local politics and our votes matter. The only time in recent history I can remember not voting in my local election was a year or two ago when there was one issue on the ballot, and I did not have an opinion one way or the other. I am sure I will continue voting until I pass, however educating myself may become more unpleasant in 2020.
 
My piece of advice to you is focus on your local politics. When tax issues are on the ballot, research them; do not simply vote no because you do not want to pay a little for something that really helps your community such as parks which benefit citizens of all income levels. Feel free to vote no when they want to build a stadium in a part of town that already lacks parking. Whatever your views, your voice has more power in local politics. You could be your town’s next mayor.
 
Until next time,
Susanne 

Please check out my GoFundMe page.

Saturday, November 30, 2019
“I am going to start taking kisses away from your payment if you do not go fill up that bowl.” My older daughter, Megan, said this to my younger daughter, Mika, last night. Megan and Mika have a favor payment system. When Megan asks for a favor, she offers Mika a number of hugs and/or kisses. Going upstairs to get Megan a water glass might get Mika a hug and two kisses.

Mika and I do not have the same system. I tell Mika what to do and she had better do it (if only it actually worked that way in real life instead of repeating myself three times). I am slightly envious of their cute system and wish I had thought of it. I did not implement the same system with Mika after Megan did because I wanted them to have something special to keep for themselves.

Mika and Megan have a great relationship and I know that bond will help Mika after I pass. Until a few months ago, Megan has lived with us all of Mika’s life. Megan is still at our house everyday because she is one of my paid caregivers. Megan is now having Mika sleep over at her house on Sunday nights so that they still get sister time together.

Mika does not have a strong relationship with her brother, Marcus. He had moved out years before she was born. They are both dragon babies, born 24 years apart. I am sure Marcus did not feel the need to try to build a strong bond because he was so far removed from our nuclear family. They talk (and sometimes play) when we do extended family events, but Mika has never asked to call Marcus to say hi.

I have four sisters and two brothers and there are only 11 years from top to bottom, so we always had a playmate as small children. I do not have a particularly strong bond with any of my brothers or sisters. I love them all and care about their wellbeing, but I never call or write, and, except for my youngest sister, my brothers and sisters are pretty much the same way. I had a pleasant-enough childhood, but we were not a hugs and kisses type family.

I think that is why I like to watch Mika and Megan together so much. I do not wish for that type of relationship with my brothers or sisters any more than I want a relationship like the ones in the cheesy romance movies. However, I do appreciate that others do like that type of relationship with their siblings and I encourage it with Megan and Mika.

That does not mean that I do not give Mika (and Megan still) hugs and kisses. When Mika gets up in the morning, she comes to me for her good morning hug and kiss. I get a goodbye hug and kiss when I drop her off at school. We have our do you know I love you game. Those are our special moments and I want her to have special moments with her sister too.

My piece of advice to you is reach out to those you love. I am still feeling healthy despite the whole terminal cancer thing, so I have not sent out the death alarm and told my brothers and sisters to come visit me or they might miss their chance. I told my parents they should plan to come visit me this summer (just in case), my directly-younger sister and her family will probably visit me in the spring and fall, and my youngest sister is planning three trips this year to visit me because she gets flex time at her job.

I plan to enjoy every one of those visits and will welcome others if more of my family wants to come. Unfortunately, I still will not call them once they leave.

Until next time,
Susanne

​Please check out my GoFundMe page.

Friday, November 29, 2019
Happy Black Friday! I have loved Black Friday for many years; I call it my favorite holiday. My idea of a perfect Thanksgiving is to get the newspaper full of ads and spend the entire day sitting at home, planning purchases. If there are some good toy deals, I will buy a few gifts for my seven-year-old, Mika, however Black Friday has always been about me ever since my dad took me to Pamida for 20 for one dollar, full-size candy bars in high school.

I usually get electronic accessories such as headsets, flash drives, movies, and etcetera. This year I have simply not been in the mood. I was out of bed with plenty of time to roll down to the convenience store to buy yesterday’s paper before we went to Thanksgiving lunch, but I did not feel like it. I am working to get stuff out of my house; I do not want to bring more stuff in.

I am also having trouble spending any money on items for me. I did buy some new long-sleeved t-shirts after I finished my original chemotherapy treatment plan, before I got my terminal diagnosis because some of mine were very holey and needed to be thrown away. I simply cannot convince myself I should buy new underwear or jeans unless my others get too many holes to wear. It is not that I cannot afford to replace clothes that are starting to show a little wear; I feel I am wasting money I can spend on those that will probably not be dead within a few years or my family could use after I pass.

Yesterday I did not look at a single ad. Today I looked at four ads online because Mika needs new snow boots and I wanted to know if any of the department stores had them on sale. They did not. At about 10:00 a.m. I rolled down to my neighborhood Target to shop Black Friday deals for Mika. That was a mistake.

I did not think the snow would still be an issue, but I was wrong. I can roll my wheelchair in the street safely in my neighborhood, so I do not need to rely on people to shovel their sidewalks and some of the streets do not have sidewalks at all. I got down to the main street that leads to Target and the access to the sidewalk was blocked by a foot of plowed snow. Fortunately, that street has well-marked bike lanes and I was able to ride safely in the traffic to Target

Mika and her Dad met me at Target so we could look at snow boots and buy toys. I miss Payless Shoes. I used to simply take Mika into their store and the clerk would put the shoes on and off Mika’s feet and make sure we got the right size. Someone needs to come with me if I buy Mika shoes at Target because they never (almost never; nothing is never) have helpers around.

They remodeled my local Target a couple of years ago and I hate (yes, I dislike it enough to use a four-letter word) it. I shop at the store approximately one quarter of the time I did before the change. The new layout does not make sense and I need to search the entire store for a clerk to help me. Target quit requiring its employees to wear their branded red shirts so now customers do not have a clue who works there. Target may be the next chain to start closing stores.

After searching the store for a helper to check for a different size boot we wanted to get Mika, we discovered we need to go back Wednesday when her size will be back in stock. I did buy four games for Mika to play with her friends, two LEGO sets, and five DVDs. I did go to Target.com to purchase a Play-Doh set Mika had requested several weeks ago that was not in the Play-Doh section and I was not about to search the store for a helper again. Thus, my Black Friday shopping was done.

My piece of advice to you is give up your traditions when they no longer serve you. I doubt I will shop at all if I make it to another Black Friday. I did not feel the bargain-hunter joy I have felt in the past. Maybe next Black Friday we will all sit on the couch and watch a movie together.

Until next time,
Susanne

Please check out my GoFundMe page.

Thursday, November 28, 2019
Happy Thanksgiving! I was able to enjoy a low-key day with my significant other, Donald; his immediate family; and two of our children, Marcus and Mika. My mother-in-law is still in a rehabilitation facility since her spinal surgery, so we went to have Thanksgiving lunch at the facility dining room. Our other daughter’s, Megan, schedule did not allow her to attend such an early event.

Donald’s immediate family consists of his brother, his sister-in-law, and his mother. The seven of us had reserved a private dining room because the tables in the common area did not accommodate a group our size. The facility was offering a turkey or brown-sugar ham option. I was going for the stuffing and green-bean casserole. I enjoyed the green-bean casserole, however the stuffing had cubed potatoes in it and the bread and potatoes did not taste good together.

My son was late (as usual), but he still arrived in time to be grilled by my sister-in-law. I do not think my sister-in-law is noisy; I think she is simply genuinely interested in what is going on in people’s lives. I was glad my son and mother-in-law were there to keep the questions about my treatment from going too deep. My sister-in-law calls my mother in-law “Mom’ and I call them both by their names. I like my in-laws; however, they are Donald’s family in my mind.

Marcus has been dating a woman for about a year who has recently upgraded from “lady friend” status to girlfriend status. I know a few details about her, and I have never met her. I do not think she and my son are very serious based on the conversations we have had. I did not know her name until my sister-in-law asked Marcus for it when she was asking him why he did not bring her. She was out of town with her family. That is another one of the differences between my sister-in-law and me; I do not need to learn Marcus’ girlfriend’s name until I meet her, or my son tells me they are serious. Neither has happened.

Mika was so excited to go to Thanksgiving this year because last year she was sick. She was doubly happy when I told her I was going since I had missed so many events last year. Mika really enjoyed the mashed potatoes and pumpkin pie. She mostly enjoyed monopolizing her Oma’s (grandmother) attention. The staff had given Mika a coloring page which she convinced Oma to color with her. When that was done, Mika drew a gameboard on the back and Oma helped color the gameboard too.

We only stayed about two hours, but it was nice. I have not seen Donald’s family for several months and Mika loves basking in Oma’s attention. We do not have Christmas plans yet. Hopefully, my mother-in-law will be back in her new apartment readjusting to independent living.

We stopped by Megan’s new house on our way home to drop off some requested tools, and I was able to see her new house (the garage anyway) for the first time. Megan was not home, so our visit consisted of Donald going inside, opening the garage, unloading the tools, and coming back again. Mika woke up as we were leaving and asked if we were at big sister’s house. I am not sure if Marcus has been there, so I may not be the last to see it.

My piece of advice to you is gather occasionally. I would very happily sit at home alone or with my family each and every holiday and think it was a perfect day. Today was a pretty great day with extended family. Fairly soon I will not be around for these days, so I should make an effort and show up while I still can.

Until next time,
Susanne

Please check out my GoFundMe page.

Wednesday, November 27, 2019
My seven-year-old, Mika, and I have been having quite the day. We started filming the last of her advent calendar videos for her YouTube channel and in the middle of one, the smoke alarm went off. It was so loud; I was sure it was the carbon monoxide detector. I took the carbon monoxide detector off the wall.

The beeping continued and I told Mika to take the carbon monoxide detector to the garage. As she went up the stairs, the beeping continued, and we realized it was the smoke detector. I was happy it was the smoke detector because there was obviously no fire, and now I did not need to call the fire department to check the carbon monoxide level in my home.

I had Mika climb on my lap to try to reach the reset button on the smoke detector; no luck. I had Mika climb on our two-foot stepladder to try to reach the reset button on the smoke detector; no luck. I had Mika climb on our four-foot stepladder to try to reach the reset button on the smoke detector; success! It probably took us five minutes to figure out how to get to the reset button.

We managed to finish Mika’s videos today with the smoke alarm only going off once more. We obviously need new batteries because it is alarming approximately every 15 minutes. Mika and I will deal with it until noon, when we leave for my weekly blood draw. I am feeling a bit sorry for the dogs. Our big dog is very distressed when the alarm sounds and it will keep beeping once Mika is no longer here to reset it.

Fortunately, Mika’s dad, Donald, is getting off work at noon for the holiday, so he can change the battery as soon as he gets home. I called him to give him the heads up, so he does not walk into a crazy house wondering what is going on.

I connected with the genetic counselor yesterday to get the results for my abnormal genes test. Turns out I was negative for all 86 gene abnormalities that are associated with a cancer risk. I am not surprised since I do not have a history of cancer in my family, however I am a little disappointed there are not any additional treatments available for me that may extend my life.

I did have one abnormal gene and the genetics counselor said most people come back with one. That particular gene mutation is not currently associated with any cancer risk or treatment so the information goes in the database and they will let me know if there ever is a connection found. I am not expecting any change in the few years I may have left, so I am finished with genetic options and left with my crazy chemotherapy schedule for the rest of my life.

I lucked out with my chemotherapy schedule because my rest week is this week and after my blood draw this afternoon, I do not need to think about cancer until Wednesday next week. We will spend Thanksgiving lunch with Donald’s family since he was raised in Colorado Springs and they are local. This will be the first family Thanksgiving I will attend for a few years because I was too sick (may I make it to 20 more) to go and Mika and Donald missed last year because Mika had a stomach virus.

My piece of advice to you is do what you can. I took the genetics test because I did not want to limit my options. If I had been home alone when the smoke detector went off, I would have either ignored (not likely) the blaring above my head or braved the cold, hopped a bus to downtown, and had a bowl of French onion soup. Soup sounds good to me.

Until next time,
Susanne

Please check out my GoFundMe page.

Tuesday, November 26, 2019
It is a snow day! Okay maybe it is not as exciting when there is not any school scheduled, but sometimes it is simply nice to hunker down at home and watch a storm pass. My significant other, Donald, did not get the luxury of a snow day. The construction job must be far enough along now to allow working in extreme conditions, because they did not send him home. My helper lives on a snowy side of town, so she called off. It is just Mika and me for most of the day.

Mika and I started the day recording videos for her YouTube channel. We usually record videos on Monday mornings, but I had to get my Neulasta shot yesterday. Right now, we are filming her opening and assembling the toys in the LEGO Friends Advent Calendar. We did days one through twelve on the past three Mondays and today we filmed days 13 through 18. It only took us about an hour to film all six days and we plan to film days 19 through 24 tomorrow.

I have bought Mika a LEGO advent calendar for the past three years before this one, so this was a natural fit into her channel programming. We are filming the advent calendar in November so I can edit and post each video on its proper day in December. Her dad did get her a chocolate advent calendar last week so she can still enjoy the daily rewards in December.

Mika and I spent the afternoon chilling. Mika loves to draw with the program Paint, so she manipulated some images of cartoon characters she found online into her own, odd creations. Mika likes death and mayhem in her art. Blood is frequently featured in her art. She does draw happy pictures also, but I would say 60 percent involve blood. She likes some characters called the animatronics and they are destructive machines often covered in blood.

I should not be surprised Mika is a little dark. When she was a toddler, she used to sit on my face and try to smother me. We used to joke about how my two-year-old would accidentally (on purpose) kill me. She has outgrown her murderous tendencies, but she is still fascinated by creepy toys. On the bright side, she does not show any interest in scary movies.

About 3:00, Mika decided it was time to go out and enjoy the snow since the storm had passed. She bundled up for the 22-degree weather and out she went. Mika lasted almost half an hour. The timing was impeccable; Mika opened the back door just as her dad was opening the front door.

I did get a glimmer of hope today that Donald has any interest in Mika’s YouTube channel. He watches videos posted by a scale-model builder and asked me if I knew about the new YouTube regulations regarding children’s content and told me about a link to comment about the settlement. That YouTuber had posted the link in his latest video informing his subscribers about the upcoming changes.

I had already read the information and set Mika’s channel accordingly, but I did not know about the comments, so I wrote a comment. I was very disappointed when YouTube made the announcement two weeks ago. Ad-sharing revenue is a major source of revenue for many channels. Mika is not eligible yet; she would need 1,000 subscribers and she has 22. Content for kids will no longer be eligible for targeted ads. Content for kids will display general ads, which pay significantly less than targeted ads.

You will no longer be able to comment on a kid’s video. Her channel playlists that group her videos into categories will disappear from the end of her videos. I will need to brainstorm revenue sources now that targeted ad sharing will never be a possibility until she gets older and starts a new channel for adults. It is interesting that a law to protect children’s privacy online will probably remove most children’s programming online because there will not be any easy way to make any money for creators, so they will quit providing content.

My piece of advice to you is to enjoy the snow. Kick back, relax, and chill out once in a while. I may decide it is too impractical to continue Mika’s YouTube channel after the new changes, but today I get to smile because her dad showed an interest.

Until next time,
Susanne

​Please check out my GoFundMe page.

Monday, November 25, 2019
It is cookie day! Two or three times a year, my friend, Star, comes over to bake and decorate cookies with my seven-year-old, Mika. We have expanded cookie day to include Mika’s friends Lily and Alice for the past two years. Cookie days are usually one in December, one during spring break, and one in the summer. We had a weird schedule this year so today was our only chance for all of us to make Christmas cookies. Star was very brave this time and suggested we invite another of Mika’s friends to join cookie day.

Cookie day is a lot of work for Star. She makes the dough at her home the day before so it can sit overnight. Star usually brings a double batch for both families, so she probably made three double batches since we had a third family involved today. Star brings rolling pins, icing, sprinkles, cookie cutters, and everything else she needs, so she makes several trips in and out of my house to bring in the supplies.

Star wrangled all four girls through rolling out dough, cutting shapes, baking, and decorating. Then she cleans my kitchen when she is done. I have the original tiny, 1960s oven that was built in my house so I am sure only one tray of cookies can be baked at a time. It makes for a very long day for Star.

Today Star overdelivered. Star made matching aprons for the three older girls and a different one for the three-year-old. She went to the dollar store and bought them each a container to take their cookies home. The girls felt extra special.

I do not like most cookies, but I really like Star’s sugar cookies. Star usually sets out a few unfrosted cookies for me to eat because I find the frosting on the decorated cookies too sweet to eat. This time Star made a batch of her buttercream frosting that is not very sweet and smeared a small amount on my cookies. They are delicious. I have nine cookies to eat!

I do not participate in cookie day in any way. My kitchen is too small to fit me in my wheelchair and five other people, and still be functional. The girl’s moms do not participate in cookie day. It is solely a Star show, and it is one of my most cherished family traditions. I love hearing the excitement in the girl’s voices as they cut cookies and decorate them. I love hearing them race around the house when they get kicked out of the kitchen for baking time. I love eating my nine, barely frosted cookies.

I hope cookie day will continue after I pass. Star will probably need to strong arm my significant other to make it happen, but even though it is a Star-Mika bonding event, I think cookie day will bring back pleasant memories of me for Mika and Star. And everybody will get to eat amazing cookies.

My piece of advice to you is to create some family traditions and expand your idea of family. Star has been helping me with Mika since Mika was born. Star is Mika’s honorary grandmother; and she loves Mika just as much as I do.

Traditions can be as simple as family dinner or emailing mom when you stop for gas on a trip. I am sure the first road trip my older daughter makes after I pass will be bittersweet. She will get to that first gas stop, pull out her phone to email me, and remember I am not on the other end.

Until next time,
Susanne

Please check out my GoFundMe page.