Sunday, February 5, 2023

Not the Communion I was Expecting (Day 36, Year 3)

Today, my son asked to go to bathroom at church right after going up to get communion. I noticed the bread--the symbol of the body of our Lord and Savior, who died on the cross for our sins--was in his right hand and he was trying to palm that bread into his suit jacket sleeve. 

Tonight, I asked Nicholas what he did with his communion bread. And he said: "Why? What have you heard? You look so pretty!"

After I accepted my compliment, I was able to learn that my son threw out the body of Christ into a trash can in the newly renovated parlor of our church. The bread had been dipped in the symbol of the blood of Christ, which this Sunday was white grape juice. 

Nicholas said he tasted it and it did not taste like the Communion he was expecting. 

And friends, I could not disagree with him! The white grape juice was too sweet and it was not even the appropriate BLOOD like color. 

I thought about writing an email to my Pastor and include links to purchase red grape juice.* I've been upset about the white grape juice all day. I mentioned to my husband and he just shrugged, making me realize that I am turning into a crazy old bat. 

But, in my defense, this was not what I was expecting. I was not expecting my bread to look like it had been dipped in water; I wanted the drama of the red grape juice, like I've been accustomed, too. 

I wanted what I expected. 

There are three very important lessons in all this:

1. My son is always up to something. 

2. My husband does not always entertain my rants. 

and the big one:

3. You don't always get the Communion you were expecting. 

This story reminds me of the time I was eating some Filipino food and I thought I was about to eat a carrot and it turned out to be a hot dog. 

It was very unexpected and tell people about that hot dog at least once a week. 

There are so many things that I wasn't expecting in my life. I wasn't expecting to have three children. I certainly wasn't expecting to know anything about childhood cancer. I wasn't expecting to live in New Jersey. I wasn't expecting to have so much gray hair already. 

You don't often get much of what you were expecting in this life. 

You don't get always get the answers to your prayers that you were expecting. You don't get the future you were expecting. You don't get the job you were expecting. You don't get the day you were expecting. Every moment, truly, is just one big, "THAT WASN'T WHAT I WAS EXPECTING" moment. 

I think when we encounter something we did not expect we have a couple options; one which is palming that moment and making it disappear (Nick's Communion). The other is ranting about it (the hot dog!). Another option is maybe just eating the freaking white grape juice soaked bread, drinking some water to take away the taste and moving on with your day (my gray hair). 

There is one other option: finding joy in the thing that you were not expecting. This is a hard one--but then again--I will find joy in the story of my son tossing his Communion in the trash can for a long time to come. I will also joy in wondering if I should find joy in the trashing of part of a sacrament. I find so much joy in my life--even the really bad stuff. This was not what I was expecting, friends, but it's what I've got. 




*We are Presbyterians so we don't have wine, we have unfermented grape juice. We also only have Communion once a month. And we don't believe the elements are actually body and blood, just symbols to help us remember) 





Saturday, February 4, 2023

Saturday Night Housekeeping Report (Day 35, Year 3)

Well, friends, it is a whirlwind. Last night, I went to bed feeling like an utter failure. Today, I have a little parenting swagger because my offspring were mostly delightful and absolutely amazing to one another today. 

Plus, Lily did this little rowing thing and got some bling around her neck. I thought I'd write about all of that victory in my blog tonight. However, then I realized that I don't feel like being inspirational at all and since this is my blog and I am the boss, I can do that. 

Maybe I'll write about inspiration tomorrow. For tonight, I'd like to discuss the chaotic state my house is in. It currently looks like it is owned by a ten year old boy. 

And really, no matter what the mortgage says, our youngest really owns everything. He's an expert at manspread and has manspread chaos everywhere. There are half drunken Wegman's flavored seltzers everywhere. There is a pizza box with a congealed slice of pepperoni pizza inside. And that slice of pizza has old Twizzlers stuck to it. There are smells that I cannot identify and actually just don't want to know about. There are bath towels on the floor outside the second floor bathroom. There is urine on the toilet sheets. There are half eaten Girl Scout cookies on the console table in the entryway. The kitchen floor is sticky. No beds are made and the carpet in the living room is crooked. 

We also spent the evening eating sushi while seated on the floor and watching "Megan" with the ten year old, while listing all the ways we could utilize a "Megan" to mess with our enemies. 

It's all super mature. 

And you know what? I find myself not really caring. We had a crazy, crazy week with interruptions in our schedule and lots of meals served while standing up and sometimes dinner was nuts and 4 oranges, because that is what could be eaten in 7 minutes. We went from a black tie charity ball last weekend to basketball, play practice, dance classes, crew practice, play performances and an indoor rowing championship this weekend. Tomorrow there is church choir (and I am going to try not to care what they wear) and basketball and the closing show of Lily's latest musical. Then it will be Monday and our lovely cleaner Aline will come and make everything less frat house like.  

We will repeat the whole manic, insane week all over again, starting with a relatively clean home and ending, hopefully just as we are now: a hot, happy, content mess. 



Friday, February 3, 2023

2 Teens and A Tween. (Day 34, Year 3)

It is Friday night and one (if not all) of my children are angry with me. This is nearly everyday. I have no idea if this is par for the course having two teenagers and one tween or if I am simply a failure. 

Either way, I feel like one. 

Also, I hate the word tween; but it is easier than saying a child over 9 years old who isn't quite a teenager, yet is experimenting with being one.

Now is when someone will be tempted to comment with how WONDERFUL and GRATEFUL their teenagers are and school me in how to say "No" and how to "demand respect." Don't you LOVE that person who KNOWS everything?

Well, God loves them. But He loves everyone. 

Anyway, this stage of motherhood is more exhausting than the stage of motherhood when no one could be home alone and someone always needed a diaper change. At least then they were grateful, now they are often spiteful.

Of course, now I sound spiteful. I am trying not to be; but this is really hard guys. 

Anyway, this is where I am tonight: slightly spiteful, a bit hurt, very tired, unable to sleep with a load of laundry to switch because otherwise I won't have pants for tomorrow. 

I shared a picture of my three before they were angry with me. The picture is from 2013. Hopefully by 2033, everyone is finished being angry with me. I am not holding my breath, however. 

Thursday, February 2, 2023

Survivorship and Stories (Day 33, Year 3)

I had the most interesting interview with a childhood cancer researcher today. Dr. Eugenie Kleinerman at MD Anderson in Houston, Texas (where Lily had proton radiation in 2007, that's what's pictured at the left, little warrior Lily) is studying how exercise could be used as a preventive and a treatment for doxorubicin chemotherapy induced cardiac myopathy. 

I know those were big words for the non-oncology readers. Basically "dox" is a really effective chemotherapy that damages the heart. In kids who receive this therapy, more than 50% will have some sort of heart damage which leads to decreased quality of life and even, early death. 

Dr. Kleinerman expressed how devastating this is to her--she cured their cancer and left them with heart disease. 

Pediatric oncologists have really hard jobs. 

I'll write about her research more specifically for Alex's Lemonade Stand Foundation--they funded her early work which set the stage for the study she is leading now.

In the interview, as always nearly always happens, I start thinking about the research in the context of my own walk with childhood cancer as Lily's mom. I used to never bring up Lily, unless we were discussing ependymoma (which is the brain tumor she had), but in recent interviews I've disclosed it. I am not their therapist, after all, so there aren't professional rules in place; plus childhood cancer has no rules. When I see the doctors talking, I see how personally their work affects them. The aftermath and current toll is written all over their faces. 

I said it before: pediatric oncologists have really hard jobs. 

I've learned many things in my walk with childhood cancer; the biggest thing is that human connection and sharing stories means something. It is not "oversharing" or "TMI" when you tell your truth. 

When I am fully honest with my story, I connect more deeply with whomever I am speaking with and then I get to hear their stories. Today, the discussion led us to what happens to childhood cancer survivors when they grow up--how do they navigate their healthcare in adulthood. 

For kids who had high-dose chemotherapy, constant cardiac surveillance is needed; but community doctors don't always have the bandwidth or resources (even in this wealthy country of ours). Some children with a history of cancer can have trouble getting health insurance--I think this is lessening, but I have no doubt it is still a reality for some. And frankly, a newly minted young adult is hardly equipped to manage childhood cancer survivorship on their own. They most likely don't have a life partner to shoulder the burden; they still need their parents or other trusted adult to advocate and support them. 

(I am 45 years old and really could use a healthcare advocate for myself somedays). 

This keeps me up at night--this worrying about Lily and what's next. I am so excited for her to grow up--but I am so scared about what that means. I need her to live to be 100 years old or more. I won't accept anything else. 

I don't know what the solution is, but I know if someone isn't working on it yet, someone will. I know that I'll begin to shift my personal focus into advocating for adult pediatric cancer survivors. 

And I know that a solution will come because families like mine shared our stories with each other, with you and with the incredible researchers working everyday for cures for their patients. 

Stories can change the world, I think. And I know they can cure childhood cancer, too. 

Wednesday, February 1, 2023

Infinite Opportunities (Day 32, Year 3)

Friends, guess what today is?! It is National Girls and Women in Sports Day! 

I normally do not celebrate these thematic days. I know that sounds strange because I love a good theme! But, I find these days overwhelming. Like today is National Serpent Day (no thank you), National Baked Alaska Day (Yes, please) and National Get Up Day (this one uses a photo of an elderly person attempting to get up from downward dog to depict the day. It's simply too much.)

But this day, I think is important.

Both my daughters are athletes. When you ask either one of them about their sports--they will talk your ear off. Lily loves rowing. She dreams of racing down the river. Chloe loves field hockey and lacrosse. She dreams of the rules and plays--strategizing how to get it all just right. 

When ask them about women in sports---immediately they've got stories to tell. For Chloe, the stories are of unequal field time and unequal celebration. There wasn't a parade for her team when they won the championship this Fall. Often the fields she plays on are a mess. We have a son, so I can say that his fields are usually not so much of a mess. Chloe knows she won't be a professional field hockey player--that path isn't even on her radar. 

Her little brother entertains some thoughts about playing sports professionally; after all men get paid more professionally and enough to make this a legit path for the lucky few. Plus, he's ten--the world is still magical. 

It's just different for boys, isn't it?

Chloe doesn't like that. She talks of change in attitude and understanding. Sports, she says, are important. Equality is important. Level playing fields are important. 

Why are they important?

Well, her older sister Lily is a perfect example of the power sports can play in someone's life. 

Lily started sports before she could walk independently. She was 2 years old when we put her on a horse. She couldn't hold her head up because of the surgery to remove a brain tumor damaged her cerebellum. She was 3 years old when the Temple University Women's Lacrosse team adopted her through the Friends of Jaclyn Foundation. She got to see her "sisters" work hard and win and lose and get back up to try again. 

Lily was five when she stepped on a soccer field wearing braces in her shoes to help her alignment and activation in her feet. She was six when she picked up a field hockey stick--thankful those giant shin guard hid the high braces she wore to help her lift up her toes. 

By the time Lily was 10 years old, she learned that she did not love soccer or lacrosse or field hockey. They weren't the sports for her. But she also learned that she loved sports. She loved that sports were hard--but rewarding. She loved being part of a team. She loved being able to support teammates when they did well and support them when they were hurting. 

Lily also discovered that her little body--the one that gave her trouble and wouldn't walk when it was supposed to--had amazing potential. 

Lily was 12 years old when she first rowed down the Cooper River.  I remember when she came home and said, "Mommy, I found it! I found my sport!"

And she did. 

Now, Lily is 16 years old. She's had amazing wins in rowing and she's had really hard, hard lows. She's had months spent sitting on a dock when she wanted to be rowing in a boat. She's had to recover from emergency shunt surgery and try to find a way to explain that she's not sidelined forever. She's been hopeless and at the same time, confident that someday, someone would take a chance on her again. 

Today, because of rowing, Lily finds herself on the cusp tremendous opportunity. She loves her sport.  She loves her team. She loves her body. She's learned firsthand what it feels like to be sidelined--to be excluded because coaches couldn't see past her impairment. And now, she has learned firsthand that there are coaches who can see her for the athlete she is and have taught her to embrace herself--the perfect and imperfect. 

Sports have taught my daughter that inclusion does not mean letting someone row in a race as an experience. Inclusion means giving someone the opportunity to do the hard work, to be part of the team and to earn their own experiences; to earn their place in the boat. 

Sports have shown her that nothing needs to stop her drive and determination. These aren't lessons she could have gotten anywhere but on a sports team. 

Opportunities that are given--create infinite opportunities for the receiver. 

This is why sports are important and this is why equality in sports is critical for our girls. 


Tuesday, January 31, 2023

January Book List (Day 31, Year 3)

Alright friends, the first (and longest) month of the year is a wrap, which means my January reading is a wrap too! This month, my family did not even complain that I was ignoring them, which means they are adapting OR they are happy to have some free time without me asking them to empty the dishwasher or scoop the cat litter. 

The reading this month definitely got darker and more dysfunctional and less real as it went along! I began with rom com then jumped to celebrity memoir then dove into man hating psychological thrillers and sped ahead to a new genre for me, horror. 

I never read horror before and only accidentally began reading "How to Sell a Haunted House," thinking maybe it was a ghost story or something. Instead it is straight up horror with demonic, haunted puppets. I LOVED IT, but more on it later. 

Let's start in order first, with my two books by Beth Moran. 

I wrote a very special, slightly insane ode to Beth Moran earlier this month. Beth is the author of "Just the way you are" and "How not to be a loser." I did end up having an interlude with her on Instagram and she said my blog meant a lot to her! 

I am going to see if I can visit her in the Sherwood Forest! Might be best to surprise her! I am sure she'd love that! 

I took a break from Beth's WONDERFUL Ed Sheeran song-esque Rom Coms to read another Brit's work with Spare. I did a partial review of Spare and then I paused to think about it all amidst my own sibling drama. I did talk Spare through with my husband extensively who told me with all my wild theories that I should write fan fiction. He might be right, but when would I write fan fiction? I am busy here and there and also planning my trip to the Sherwood Forest. 

Anyway, here's where I landed with Spare: I am think it is a well-written memoir, but what irritated me is the pillars of perfection Harry places his mother and wife on. It feels obsessive and strange. It is the sort of love that raises up the object of affection while very directly putting everyone down (sort of like: "no Mummy, only the pink crayon is pretty! Purple is ugly! I love pink! It is perfect!")  Maybe it's just not my kind of love. 

Also, when it comes to his sibling/royal drama, I just want to say: THE ROYAL SIBLINGS ARE JUST LIKE US! They have ridiculous misunderstandings, endless dramas and sibling rivalries that last a life time. Harry seems to point out sibling rivalry as if it is dysfunctional or abnormal; but I think all of us with siblings (even me with one dead and another maybe dead or faking it) know that sibling rival is real. 

Honestly, I hope the Princes work their shit out and stop acting so weird. Although I am sure they cannot help it, they are like fancy prisoners. 

Next, I switched my addition to some man hating psychological thrillers with female characters that absolutely had a little bit of con artist in them. I love a good con; but don't like to be conned. This con artist information is not relevant to the books. Anyway, I so enjoyed The Villa by Rachel Hawkins and then Two Reckless Girls by Hawkins was divine. Both books delivered on the confusion and unraveling and even when you figured it out, there was more to unravel! The Villa is set in Italy and Two Reckless Girls begins in Hawaii and ends on a creepy, island in the Pacific. Everything about these two stories made me happy. 

Then it was onto "How to Sell a Haunted House" by Grady Hendrix. This book was recommended again and again in my Peloton Moms Book Group. I dove right in and was surprised by the genre--and then delighted by it. The book has themes of long buried family secrets and dysfunctions--which I can totally relate to. There is the horror element of demonic dolls and puppets--that while utterly ridiculous is somehow redeeming and healing and like some sort of play therapy or allegory for the unraveling of long ignored family issues when the matriarch and patriarch die. I loved how this book did not take itself too seriously. 

Now that I love horror, I had to jump into The Final Girl Support Group also by Grady Hendrix. I am about 30-percent of the way through and I love it more than the first Hendrix book I read. The Final Girls are the women who survived horrendous, horror movie like massacres and they are traumatized, routinely stalked and now being hunted by someone. It is a book with serious themes; but somehow the horror bit of it allows it to not take anything too seriously and instead you are left unraveling and working through whatever trauma in the book speaks to you. 

For me, I identify with the being hunted part. Sometimes, as a childhood cancer family, I feel like we are hunted by childhood cancer. It's a real trauma for me--really for all of us--but I appreciate how this book is working through that feeling. 

For February: I think I might turn to a biology memoir written by retired neurosurgeon Henry Marsh called "And Finally, Matters of Life and Death." Marsh is a legend and you know I love this science-y stuff. I also have two more sweet Beth Moran books to read and some messed-up psychological thrillers burning a hole in my Kindle reading list. 




Monday, January 30, 2023

January Mice (Day 30, Year 3)

Well, friends, another cloudy, dark gray week in muddy yet still cold January in New Jersey has begun. I know there are several of you that enjoy this warmer January; but I find it seriously annoying. It looks so dirty outside at all times, like some sort of sad industrial revolution scene from London with smog and overpriced eggs and rodents running wild. 

Speaking of rodents, today began with screams from my daughters. Our cat Rosie was playing with a mouse she caught. The mouse would play dead and then reanimate, much to the irritation of sweet Rosie. Rosie responded to the reanimation with intense rage and split the mouse in half. This is the second time this in-half mouse situation has happened. 

Obviously Chloe had to go in late to school to take care of the her farm chores (two halves of mouse removal). Since I live for telling a good story, I was excited to write a letter to her band teacher telling him the very specific reason for her tardiness! 

Anyway, I guess this is all par for the course in January! It begins with hope and resolutions and ends with you feeling as if you've been split in half like a mouse killed by a very angry, very tiny cat who does not like to be held. 

Speaking of mice, my son, who has been working diligently all year to charm his teachers, has finally succeeded! The key to their hearts was his knowledge of genetically engineered mice used in cancer research. Somehow he was able to make them feel less "icky" about animal research. I am sure PETA is so glad my son is out there being of service. I don't know why lab mice knowledge was the key to his teacher's hearts; but someone in this family should be able to use mice to their advantage! 

And speaking of mice (again), my husband once had two pet mice which we named Gus-Gus and Jacques after Cinderella's mice. They were adorable. Gus-gus was a round little guy. I would willingly touch and play with those mice. I'd even be left alone in the room with them and find peace in watching them play. I have no idea why. I am ready to burn my house down over our mice. I was even sad when Gus-Gus and Jacques died. They looked exactly like the mice Rosie murders. And I am not sad about those mice. In fact, I am happy she murdered them! I hope she kept one alive, but maimed to go and warn the rest to stay away! 

I feel this is proof that things have more value when you pay for them versus when you simply get them for free. Our Eldridge mice came with the house and I hate them. Mike's Cinderella mice cost a few bucks; but then we invested in all these toys and bedding and food for them. They seemed more valuable, even though they were definitely less hardy and super dumb, unlike the Eldridge mice who have developed a complex series of tunnels in the home and are planning to take over. 

The mice that frequent our front porch are able to lick the traps clean of bait without setting the trap off. How do they do that? It disturbs me so much because they must be very evolved, very smart and will definitely steal our identities and take over. 

With that apocalyptic rant, I'll end this Yoke-full of wisdom from January mice, who hopefully will all be dead by the time February begins on Wednesday.