Saturday, January 16, 2021

On going to a Virtual Ball (Day 16)

 If you told me one year ago, that I'd be attending a virtual Ball, I'd tell you, "No, thanks."

But here we are, January 2021--10 months and change into a global pandemic that made every last thing virtual, including the Alex's Lemonade Stand Foundation Lemon Ball. 

For our family and our children, especially, the Lemon Ball is a much looked forward to event--we dress up, we stay overnight in the city, there is dancing and Shirley Temples (and cocktails!) and most of all, there are our friends--who are really our family. They aren't our neighbors or life long pals from high school and college, these friends are totally different---they are the only people in the entire world who understand exactly what it is like to be us--a family impacted by childhood cancer. 

Lily was just a baby when she was diagnosed with ependymoma, a brain tumor that only seems rare until it's at your front door and in your baby's crib. There is no amount of time or prayer or therapy that will ever make Lily's diagnosis okay nor is there anything to erase the memories that are etched in every cell in my body. 

But, the thing is, despite it all, I can say I have the most blessed, joyous life. 

That's how this childhood cancer thing works. And the people who get it--they are our lemonade family. 

Every year at the Lemon Ball we reunite, in our ball gowns and tuxes with our wigs all curled and our lipstick on. And we celebrate. We celebrate despite the fear. We celebrate despite the children who are gone and shouldn't be. We celebrate because we can. 

If childhood cancer has only taught me one thing, it is that you cannot have bad days. My friend Megan Roberts reminds me of that. She lost her son Declan when he was just 4 years old--it is unimaginable. But she is always reminding me, just by how she lives her life that there are no bad days and that we need to remember we are full of goodness.

So tonight, we celebrated apart, but always together. It was different--but my daughter Chloe reminded me--the Lemon Ball is a feeling--it is not a place nor is it an event--but it is feeling. And we felt it all tonight. Someday, we celebrate cures and safer treatments for all children, but we will always celebrate the beautiful children who gave us this mission and moral obligation. And we will celebrate the incredible, strong fierce love that exists between our families. 

I believe with every fiber of my being that we will win this fight. We have no other option. 

And look at her--my girl, almost 14 years later, she is just beautiful. 

Friday, January 15, 2021

Week 2 Review + Weekend Preview (Day 15)

 Well, it seems I have a little tradition going here--two Fridays in a row, I've shared my week in review! I know you are all probably on the edge of your seat waiting to know how it is all going! (Note: I am not following whatever format I used last week. Mostly because I am lazy.) 

So, I am happy to oblige! (I do adore talking about myself!)

Oh and as a bonus, I included a weekend preview. 

1. Progress towards my daily goals: 100% compliance! Daily abs, daily meditation and daily Yoke-writing! I have to say daily meditation has really helped me in so many ways. Somehow I feel less attached to drama. I still love drama, but I let it go and then have more space to focus on non-dramatic things and brand-new-super-dramatic things. 

2. I have not worked on my book and no, Karen, I have not built my desk. I have two weeks to find 4 hours to book write and find lumber. 

3. Word of Year: Pause! I think my biggest accomplishment pausing happened when I fell asleep midday one day while writing something. I woke up and all the things were buzzing. My iWatch was vibrating, my phone was angrily aglow and my laptop was ringing. I looked at the clock and I had only been asleep for 7 minutes. So I went back to sleep. 

And you know what, 7 minutes later, everything was buzzing again and I had two phone conversations I don't remember. If I spoke to you and I seemed "off" just like shoot me a text, thanks!

4. Favorite Blog Post of the Week: Cataract Surgery! It did result in quite the buzz--lots of tips, concern for my mother's well-being (she loved it!) and I fully expect the left eye to be just as fun to document! 

5. Least Favorite Blog of the Week: Squint, from Saturday. It was annoying to write. I might rethink my Saturday writing exercise. BUT, it did remind me that I am due for new glasses! I feel like I barely got to wear my old glasses because they are for driving and distance. I haven't been in a conference room since March 2020 and I rarely drive, except for surgical and boujee helium needs. Aren't these cute?

6. The Rest of the Week: I am honestly don't remember. But somehow we now have a Robot Flying Shark Balloon named Bessie. 

7. Weekend PREVIEW: Tomorrow is Chloe's first front yard cookie booth of the year. So if you are local, swing by in your hazmat suit for some cookies ($5/box!) from 10am-2pm. 

Then in the evening is the annual Lemon Ball. It is virtual this year, but Chloe has some big plan,  that she wrote about for Alex's Lemonade Stand Foundation, to make it spectacular! Plus, our family will be interviewed during cocktail hour. Lily, Chloe and Nick all love the Lemon Ball. And they really love Alex's Lemonade. I am so glad they've learned how giving to others enriches your life so much more than holding onto money does. We are really blessed to have this amazing night to look forward to, plus being gifted with this first born of ours, is pretty awesome. In case you missed Lily's story:

Happy FRIDAY Yoke-sters! 

Thursday, January 14, 2021

Product Review (Robot Flying Shark Balloon aka "Air Swimmers" (Day 14)

Today, I built a Robot Flying Shark Balloon. 

I feel like I climbed a mountain, y'all! It is not that it was fulfilling or any sort of accomplishment. It was just time consuming and tiring. 

Are you wondering why in the world I build a Robot Shark Balloon? 

(I mean I am just wondering myself). Here's the story:

Nicholas, my 8 year old, has been begging for an Air Swimmer since January 1. It was like he forgot about Christmas entirely and was ready to start gifting season again! He claimed to have some Christmas money (I never saw it) and he is really persistent! So, with his imaginary Christmas money (which is also known as my money), we ordered an Air Swimmer Remote Control Flying Shark!*

For $39.99, we got an entire experience and a new floating resident! I thought I'd share my experience and product review with all my hoards of readers. I figured you could bookmark this when you are shopping with imaginary Christmas money, or for birthday gifts or Valentine's or Easter or just a random Tuesday when you have to bribe your children with toys in order to complete a very, very, very important conference call. 

Here's the down-low on the Air Swimmer: Swim Through The Air! Remote Control Flying Shark**:

1. Do NOT expect to get anything done beginning the moment the Air Swimmer arrives. You child will no longer be able to think and will only be able to say "when are we putting my Shark together?" repeatedly. 

2. The Robot Shark Balloon requires a VERY SPECIFIC type of boujee*** helium. You will need to plan in advance and build in time in your schedule for the helium filling. 

The instructions say you need "non-diluted helium." I went to our local party store today**** with the deflated balloon. The conversation went a little like this.

Me: "Hi, can I get my balloon filled up. I need to have it filled with non-diluted helium."

Party Store Owner: "You get it filled with helium."

Me: "Yes, but can you make sure it is non-diluted? The instructions were very specific."

Party Store Owner: "You think my helium, no good? I give you back your balloon and you blow up yourself with your air."

Me: "No, I just wondered if there was a selection of heliums, could I have the non-diluted one."

Party Store Owner: "You take the helium I have or NOTHING."

Me: "Okay."

She filled it. I might be banned from the party store. And I have no idea if I got the right helium! I have no idea what happens if I got the diluted helium. 

3. The filled shark balloon is not as big as a real shark, so don't worry! But it is as big as an adult pot belly pig, but not as heavy. In fact, as you can imagine, it is light and constantly wants to fly away to the heavens. So, DO NOT allow your child to carry the balloon. Instead you need to grip the balloon tightly on both sides, pray and carry to your vehicle yourself. 

4. Do not plan on doing anything the day your fill up your Robot Shark Balloon. Today, I attempted to have a normal afternoon of work and text messaging friends Memes. I was interrupted every 4 minutes with "WHEN ARE WE PUTTING MY SHARK TOGETHER" repeatedly. They might even smack you with the inflated shark a few times. 

5. Also and this is very important, SHOWER THE DAY BEFORE you fill up your Robot Shark Balloon! Today, I made the mistake of not showering. And well, I had to spray myself with perfume, like some sort of Egyptian mummy, to keep myself from gagging on my own musk. You also will not be able to eat or prepare a meal or do anything else. the Robot Shark Balloon is like a newborn! 

6. You need some additional supplies, including two screw drivers (size: tiny and slightly more tiny), AAA batteries and extra tape. Build in time to gather these supplies and be prepared to pick the wrong size screwdrivers repeatedly, like Ground Hog's Day. 

7. You need to know your Altitude. I don't know why, but this is critical when you are on step 8. I tried to ask Alexa, but she was unplugged. So I had to ask my husband, who then played a fun game of guess the altitude and wasted precious time. Just Google it in advance. Ask no one. They don't know. 

8. You need to be good with stickers. There are lots of things to stick on. And there are extra stickers and rubber bands. And ribbon. I have no idea what half the items are for. When I was confused, I just used clear tape that I stole from my mother's dollar store tape stockpile. 

9.  You need a helper, but be prepared for them to lose focus. Nicholas was my helper and he often disappeared to play a quick game of Fortnight! But you need someone to hold the shark down, because since it is filled with helium it floats up. A lot. 

10. After you follow all the steps, in order and read all the warnings, you have to pair your remote to the shark! This takes 1 hour. There is no getting around it. You also have to do a Double Dare challenge that involves a time clock, a first button press and a flicking of a switch. It is a lot. Meditate before hand so you can focus. 

11. When the shark is complete, name it! Nicholas named his Robot Shark Balloon, Bessie! Bessie floats around on her own, but with the remote, she flicks her tail and then gets stuck behind the TV. She also scares the cat. But, Nicholas said she is SAVAGE and I think that is a compliment! 

12. The Bottom Line: I'd totally be conned into purchasing this again! I'll also purchase for birthday gifts for my friends who have lots of free time and need a hobby! 

Oh and before I go, a note on where to buy: We grabbed "Bessie" from Vat19. I was skeptical, but once Nicholas showed me that someone with 1 million trillion YouTube followers vouched for Vat19, I figured it was a safe bet. I mean you cannot trust anyone these days--except for YouTubers, right?

*Full disclosure: We had the Flying Fish version of this before. However, someone opened it, lost all the parts and we never got to fully integrate it into our family! 

**I have no idea how to punctuate this. 

***I just learned how to spell boujee this week. Which makes me more boujee than I already was. 

**** In my mask, while maintaining a social distance and after taking my temperature 17 times. 

Wednesday, January 13, 2021

My Joy List (Day 13)

I thought about writing tonight about how I had nothing to write and did not feel like writing; but then I did my daily 5 minute meditation. Tonight, it was a Happiness meditation with Cody Rigsby. Within seconds of knowing I'd be forced to confront happiness, I realized I knew exactly what I'd write about!

Can you guess?

Bet you can't! 

SURPRISE: I am going to write about Happiness and Joy!

This evening, I was texting with a friend and I said that despite all the challenges and all the pandemic and all the madness, that I was really very happy. Then, a moment later, I texted her about some frustrations I had today--friend drama for my middle daughter, the high school going all remote, probably 12 other things--an instant barrage of complaining. 

And I questioned my own joy level--could I possibly be happy? Did my friend think me so contradictory that I was lying about my own happiness? Am I actually happy if no one sees it? 

Sometimes, when my husband is upset about things or frustrated (in a loud way), I think to myself, "man, he's like so unhappy." Okay and by think, I mean, I open my big, uncontrolled mouth and accuse him of lacking joy and being unhappy. Which, obviously does not lead to joy. . . 

He always replies, "Why would you think I was unhappy?"

(Erm, because you are shouting?). . .

BUT, the truth is, I was just being judgmental. The truth is, true joy exists in the midst of discomfort and horror and madness and frustration. True happiness should never be judged by how irritated you are in one moment. 

True happiness and joy are things that are a steady drumbeat throughout your life. They are the songs that get stuck in your head; not the annoying ones like Baby Shark; but the ones that call you back to joy when everything has gone wrong. True happiness and joy are moments that shock you out of your irritation--and let's face it, there is always a lot to be irritated about--especially in the midst of a global pandemic that coincides with treason season and a billion other things. 

The world is a hot mess. And everyone is annoying and annoyed. 

But, true happiness and joy don't disappear at the first sign of trouble. So with that in mind, here is my list of the very real things that give me joy (and don't judge my list, I promise not to judge yours.) :

1. Political Memes (I don't even care which side they mock. I love mockery.). 

2. Laughing at everything (cataract surgery, the plague, my mother's parking, myself)

3. That my husband always wants to have two points of physical contact when we sleep. (I hate cuddling. but he loves cuddling and loves me enough to need to be close to me. Really the best feeling in the world.)

4. When I hear my children plotting against me. (They are best at making messes and chaos. And when they work together, even against me, well I know I've raised a den of theives who will be loyal to the death). 

5. Reading books. 

6. Binging on Netflix.

7. Jelly beans with salty pretzels. 

8. Unfinished, unstarted projects and long to-do lists (Completion is great, but it is an ending. I love beginnings and journeys!)

9. Watching my cat avoid my dog. (it is hilarious. and the dog is so patient.) 

10. My friends who laugh with me at everything and don't tell me I am a monster. 

11. My giant vegetable garden (it reminds me of my dad and his dad and my mother's dad and all those great grandparents of mine.) 

12. Our childhood cancer family (we laugh, we cry, we mock, we hold each other up and we fight together for our kids.)

13. My work and my colleagues (I have so many. What a gift to be surrounded by so many different people who are demanding, brilliant and put up with my flights of fancy)

14. Homemade pickles and wine. (Like my garden, the things we created give me joy!). 

15. Watching Lily row. 

16. Watching Chloe run. 

17. Watching Nicholas talk to everyone. 

18. My husbands laugh (this actually might give me the most joy. Especially when I am the one who made him laugh). 

19. Writing and knowing people read it. (You give me joy, because you are listening to me!). 

And so many more things. . . .And all these things happen in the midst of frustration and fear and mess. But, somehow, the joys drive out the rage, every single time. 

Tuesday, January 12, 2021

What to Expect with Cataract Surgery: Lessons from the Frontlines for Caregivers (Day 12)

Let me tell you all: Cataract Surgery has been an EPIC adventure in this house. I thought I'd share my experience in the time of COVID-19 to help others understand what to expect and how much to drink during Cataract Surgery Week. 

As some backstory: I am not particularly close to my mother--except for physically (she lives in her own self sufficient apartment off of my kitchen)--but at the same time, we have a pretty open relationship (consisting of my mother requesting insane things and me refusing and then my husband getting mad at us and then us both looking at him like the monster of rationality he is). 

And while my mother drives me absolutely INSANE, I'd do anything for her (I mean I will complain the entire time. but I'll do it. I am her daughter!) 

So enter the Cataract Surgery.  She's been talking about her cataracts and their "ripening" (vomit. BTW, cataracts don't really need to ripen anymore.) for approximately 2 years. It has been like the most anticipated event of the century. 

Here's what to expect when your mother who lives with you needs Cataract Surgery:

1. She will absolutely wait to schedule the Cataract Surgery, until there is a global pandemic. 

2. The surgery, without a doubt will be scheduled on Monday, which in turn creates a nail-biting wait for the required COVID test results that might be delayed by the weekend. 

3. The surgical testing center will strongly suggest the COVID test be administered by a very specific testing location, approximately 58 minutes away on an unnamed road in a tiny plaza near the Jersey Shore. You will refuse and spend one week refreshing the available COVID test appointments at a variety of testing sites. Then you will spend the weekend refreshing your phone for the COVID test results. 

4. When the COVID test results miraculously arrive in your inbox on a Sunday, do not expect your parent to be happy that they are cleared for surgery. Instead, they will be praising Jesus that they received a negative result. And when you asked why they thought it was positive, they will clam and up and deny ever going to 17 different Dollar Stores in search of the "right" tape.

5.  On surgery day, expect the patient to be waiting in your kitchen 3 hours before you need to leave. Also, expect them to not believe you when you show them the map to the surgical center and share the actual travel time. 

6.  At the surgical center, the patient WILL NOT be allowed in until the COVID test results have been reviewed by 17 people. During that review process, you will most likely wait outside in the cold. You will see people come in off the street and run in "just to use the restroom." BUT stay strong, the COVID review process only takes like 47 minutes. (Bring a coat and hand warmers). 

7. You will encounter many other caregivers and patients. Note: everyone is angry, everyone is scared, most are masked, some are not masked properly, and one will have a cane. Note: Do not anger the one with the cane. 

8. You will wait in your car during the surgery, which takes anywhere from 20 minutes to 17 hours. Since, most of us never leave our homes, I found this time to be like a little mini vacation. 

9. When you get the call to pick up your patient from their procedure, don't be surprised if they bully you into parking in Handicap parking and repeatedly tell you "It is fine." It is NOT FINE, because the parking lot security will harass you and accuse you of taking away parking from disabled people.  You will wish the one with the cane from number 7 was your mother. 

10. Depending on the drama level of your patient/loved one, don't be surprised if they come out in a wheelchair. BUT understand they are not blind nor are they suddenly unable to walk. They just like to be pushed around by muscular male nurses. 

11. You loved one will have a clear patch/shield over their eye. Your children might start talking to them like they are pirates. My mother enjoyed this. Others might be offended. 

12. There is a very, very extensive eye drop schedule. DO NOT UNDER ANY CIRCUMSTANCES OFFER TO HELP WITH THE EYE DROPS BECAUSE THEN YOU CANNOT LIVE A NORMAL LIFE. They need the drops about 4-17 times a day. You cannot commit to that. You have work and Netflix to manage. 

13. They will be fine! And have their eye sight, but using medical tape to reattach their patch/shield will allude them and they will revert to using the clear tape they found when they went on their pandemic trips to the Dollar Store. You will call them a "hobo," at least 19 times under your breath and once to their face. They will not cry, because they are now hardened by their surgical experience. 

14. There will be several surprise appointments that they've known about for 2 years, but disclose at the last minute. You will drive them to surprise appointments, but you will drive "a way" they "are not familiar with," and "too aggressively" and "not how" they "taught you." As a result, they will be gripping the armrest and praying to Jesus "Save me like you restored my sight." I recommend turning up NPR really loud for the car ride. 

15. No one will say Thank you. Which if you are a mother, you are probably totally used to.

16. The bottom line: your patient/loved one/mother who lives with you has two eyes. So you repeat all of this in two weeks. BUT it is all worth it to restore their vision, so they can see well enough to drive safely and to be able to criticize your hair. 

17. delivers in most states, but be sure to pre-order on the same day you book the COVID test. You can place your order in-between refreshing for appointments. 

I hope these tips helped! Happy Cataract Surgery-ing! 

Monday, January 11, 2021

Six Ways 2021 is just like 1620 (Day 11)

I mentioned on Friday that my next book would be a historical fiction book based in the 1600s by Philippa Gregory. I picked this book because I wrongly (Spoiler Alert) assumed that reading about old time problems would make me feel better about the right now problems. 

I am only a quarter of the way through Dark Tides and I can tell you: NOTHING HAS CHANGED! WE HAVE ALL THE SAME PROBLEMS! WE JUST HAVE DIFFERENT TECHNOLOGY!

It is disturbing, truly. 

And very funny, actually. I mean who knew I'd have so much in common with a middle aged lady from 1620 who is running a shipping and receiving business from a wharf in England with a body hanging on a noose nearby. Apparently the bones, clang in the wind, as a warning to pirates. I might try the same tactic against the Squirrels and the Spotted Lantern Flies. 

ANYWAY, here are 6 ways today 2021 is just like 1620:

1. Women are still managing everything and making less money. The heroine, who  has her import and export thing going on, has to handle everything. She works endlessly. The men seem to do just fine whistling and like whatevering. I bet she makes 30-percent less because of her petticoat.  Oh and she lives with her mother, who is not totally senile and not like awful, but still a real pain in the fanny. (Parallel lives!). 

2. Children are always surprised when they have to do work. The kids in the book are 21 years old and it seems their mother has to constantly remind them to complete their work at their respective jobs. And she is constantly reminding them to have some ambition, because, well, she doesn't want them to have to live on her horse hair bed one moment longer!

3. There are lots of conspiracy theories.  The mother in the book, well, she is recovering from a failed with drowning episode that happened in the prior book. They thought she was a witch because the crops grew or someone's cow broke a leg (I cannot remember exactly.) Everyone is suspicious and then, in turn, they just yell WITCH (i.e. 2021's ANTIFA!) and then shove some poor woman in a cage and drown her. If she survives, well, then she is left to navigate the healthcare system. 

4. Healthcare is very confusing. The suspected witch, well, she cannot seem to get the water out of her lungs from 21 years prior. She sees doctor's all the time and no one really has any idea what to do and no one is really in charge of her care, so she mixes up herbs and rambles on about having a "touch of drowning." (It reminds me of my own mother who once told me she had a "touch of pneumonia" for a month.)  

5.The original KAREN may have been from 1620 colonial America. There is no Facebook, but there are posts all over town. Think your neighbor is fraternizing with the Natives too much? Well, write a judgmental letter and nail it to a tree! Someone stole your fish net from the river, write a passive aggressive letter on your finest parchment and nail it to the church door. Seriously. . .

6. There is the plague. I don't really need to explain this one, do I?

Sunday, January 10, 2021

Simple Faith (Day 10)

The last time I was inside my church's sanctuary was March 13--for a funeral of a dear friend's father.

It's been 303 days--nearly a year.

Our church moved worship online (in fact our church always streamed their services, so the transition was a little smoother). Nearly every Sunday since March 15, we've gathered our household, which includes my Mom, and attended church in our living room (and in our pajamas). 

I can honestly say in the past 303 days, I've attended worship more than I ever have before. The simplicity of gathering my kids--without the fighting and complaining and dressing and finding shoes and Bibles and car keys and cash for offering--has been such a gift. I miss the inside of the church; I miss the fellowship of being with people. But I don't miss the screaming. 

There was so much screaming.

I love this simple act of gathering in worship.  And it is not always perfectly peaceful--most Sundays there is a bit of yelling or technology failures or huffing and puffing and whining. 

But, when I say it is has been reduced by 90-percent, I am not exaggerating. 

For communion, we use what is on hand. I told a friend we used ginger ale and saltines one Sunday and they were horrified. But I don't think Jesus minds much. I look at it this way:  the first Communion was at the Passover table and there happened to be some wine and bread, as there would have been.  Communion became the blood of Christ represented by the Wine and the body of Christ represented by the bread. 

I have no idea if my perspective is biblically correct, but during our home communions, I've felt just as close to Christ nibbling on a saltine and sipping some ginger ale, as I have in my church with the grape juice and the bread. 

I don't think Jesus minds so much if we do things a bit differently than He did, as long as we do it with Him in our hearts and minds. I understand how ritual can help to focus and center us in the moment. And I love a good church service with all the Jesusy pomp and circumstance. But, sometimes, those things can get in the way, like church clothes and car keys seem to be the fly in the ointment of our pre-pandemic Sundays. 

I am prone to getting wrapped up in the complications of things--I love a complicated ritual, a good theme, a multi-leveled strategy with nuances and surprises, a long, very specific prayer-but when I start overcomplicating my relationship with God, I lose Him completely. I am focused on the relationship part--not just simply on Him.

For me, finding the simple faith is finding the truest faith. 

So here goes my Simple Statement of Faith:

Jesus loves us. We should accept His love and give it in return to Him and for Him to the world;

God hears our prayers. We can pray in the simplest way, by saying "Lord, hear our prayer." He knows what is in our hearts and He does not need our words.

We are forgiven, when we ask. And therefore, we should ask for forgiveness and in turn, like the love we share with our neighbors, give forgiveness to them as well. 

God, Jesus and the Holy Spirit are in all things. The triune God is in all things and we can be with God in all things, whenever and where ever we want--in our living rooms, in our pajamas, with a communion of soda and crackers. We are always with God, we've just got to get out of our own way.