There is fun, and then there is fun

Thank you for all the energy you send my way. It enabled me to travel to Pittsburgh with my family, to celebrate Easter with my parents and siblings and partners and cousins and friends. A two-day trip would normally be crazy and unthinkable, with everything that gets packed into that, but your support enabled me to do that.

On Easter Sunday night, at bedtime, I laid in bed with my younger son. As part of their bedtime routine, I like each boy to reflect on his day and think about what he is grateful for. I also like them to give thanks to God for those same things, though sometimes that part pushes my luck with their patience.

Neither boy is the reflective sort and they find this exercise tedious. Still, I persist, posing the question in various ways.

Tonight’s version was, “What was your favorite part of today?”

A lot had happened. We were in Pittsburgh at my parents’ home, so the kids woke in the same house as their cousin. They had a special breakfast made specifically with them in mind and received Easter baskets of goodies and gifts from my parents and their aunt and uncles. We went to church (granted, not a potential highlight when you are seven years old) and they ate cookies and cake and special treats throughout the day. He  and his cousin put on a gymnastics and dance show.

A friend of mine arrived in a convertible BMW and took our son for a fabulous fast ride in her car. His grin was non-strop and I don’t think it was the power of the wind against his face.

I thought about all this as I asked him again, “What was your favorite part of today?”

“Tonio.”

Late in the afternoon, my cousins arrived, bringing their two boys. Their older son is a teenager and did a fabulous job of playing with his younger brother (Antonio) and my younger son, who are close in age. My cousin and sister and I sat on chairs in the backyard and watched while they played football and freeze tag and lots of other games where you run around a lot. The balls would go over the hill, and retrieving them was a fun game in itself. The boys would run down the hill over the brambles to get the ball, then run back up again. Their clothing gathered grass stains and the feet of my barefoot son were so dirty that we couldn’t scrub them clean in the bath that night. Both of my cousin’s boys are amazingly easy-going and fun, and they laugh easily. It felt idyllic.

Because it was the last big event of the day and they left barely an hour before this, I attributed his answer to the recency effect. So I pushed. “Easter candy?”

“Tonio,” he said again, definitively.

“Gymnastics?”

“Tonio.”

“Riding in the convertible?”

“Tonio.”

Though it had been a great day overall, clearly the best was the connection he made and the physical fun he had playing outside with someone he adores. Okay. Tonio.

I know that I get so caught up in what I am trying to get done that I often put off that physical connection and that fun. This was a good reminder for me to refocus.

Thank you for connecting with me, and being open to my connecting with you, enriching my life.

I send you wishes for a beautiful week, filed with the absolute joy and love of connecting with someone amazing.

Love,
Marie

Meaning and Joy

Thank you for your prayers and positive thoughts, your visits, food, emails and every other uplifting and helpful thing you do. As chemo weeks go, this one wasn’t so bad, and, to my delight, I rebounded quickly. Thank you for all you did to enable that. It not only helps me, but it helps my family as we function each day.

For a long time, and often even now, I just aim to get through the day. I don’t generally commit to anything in advance. For example, I’m never sure if I can do school pick-up on any particular day. I haven’t thought much about family rituals, and certainly not yearly ones. I didn’t have the confidence to plan for something that would occur year after year.

But last week, I started thinking about how to make events more meaningful and joyful. With Easter Sunday and its preceding Holy Week approaching, I spied an opportunity. Maybe we could make this week special somehow, maybe even starting with Palm Sunday.

The Jesuit church near us has a Palm Sunday Mass where liturgical dancers act out the Passion (the story that runs from the Last Supper through the crucifixion and burial of Jesus). I was encouraged to bring my children to this, in the more formal “upper” church, rather than attend the very family-friendly children’s Mass.

I wondered whether my kids were up for it, and whether I was up for shepherding them through it. For us, a regular Sunday Mass looks like this:

  • We arrive between 5 and 10 minutes late (on a good day)
  • My kids settle into the pew, sitting on the kneeler and facing the seat. There, they set up whatever activity they brought to occupy their time during Mass (anything from drawing to reading to Legos).
  • Partway through, they get restless so I ply them with snacks and a drink
  • If their behavior is good, they are allowed to get donuts afterwards

But, I was up for trying something new. I said I would bring my kids.

“Oh, make sure you arrive early to get parking and a seat. It gets crowded,” I was told.

“How early?”

“Thirty minutes should do it.”

THIRTY MINUTES? I thought. The overachiever in me added its two cents: If everyone else is arriving 30 minutes early, I’d better aim for 40 minutes early.

How would we get there 40 minutes early? And worse, how would I keep those kids engaged for 40 minutes before Mass even starts, and then through the entire, longer than normal, Palm Sunday Mass?

One step at a time.

I developed a strategy, buying treats they rarely see, like chocolate milk and candy. (Well, they get plenty of candy but not usually at church.) I talked with them about activities to bring and packed extra paper and pens and yarn. I brought water for myself.

Miraculously, we arrived 40 minutes early. We got good parking.

The kids picked up palms and then one of them immediately asked if I could make it into a sword for him.

“A sword?”

“Yeah, you know – with the handle and the bar across and the long part?”

He meant a cross, which, if held upside down by the shorter top part, apparently looks like a sword.

“Let’s wait on that.”

The church was already filling in the front but we found seats. The boys settled in as they usually do, opening their Legos and playing quietly together while I prayed.

Then I looked around. The kids near us had books with titles like, “The Saints” and “My Catholic Mass Coloring Book.” One child in the pew behind us leaned into our pew, ignoring his books and watching my boys play Legos.

I got close to my sons and whispered, “Share with him,” then held my breath. I’m never sure whether I will get resistance or compliance. Thankfully right now, I got only a bit of resistance before compliance. Good. I heard the parents say to their son, “Make sure you give that back to him before Mass starts.”

I was suddenly self-conscious about our secular toys and my plan.

I leaned over the boys and whispered, “Let’s put those away once Mass starts.”

Though they looked at me with big, shocked eyes, at least they didn’t say, “But you ALWAYS let us play Legos.” I remain grateful for the small things.

Mass started and we waved our palms over the procession. At first the kids got into the action, then their arms were tired. Whining and complaining totally drains me and it was too early in the Mass and too early in the day to start that. We were now squeezed into the center of the pew and I didn’t see an easy exit.

Then the liturgical dancers took over, and the boys and I were captivated as they acted out the Passion. One of my sons even sat on my lap to get a better view. The rest of the Mass had a rhythm that was different enough to hold their attention. A nice person behind us made a “sword” for my son out of the palms. I eventually allowed them to have the chocolate milk but held off on the candy.

And then, the Mass was over and we walked out of the church into a beautiful rainfall. As we drove away, they even talked animatedly about the service and absentmindely sang the songs from the Mass.

Eventually, they asked, “Donuts?”

“Sure,” I smiled. I guess that after-Mass donuts have become our family ritual. It happened without planning or realizing. And maybe it isn’t particularly meaningful, but it is filled with joy.

I wish you much joy and meaning this week, whether you are celebrating a holiday, birthdays, or any reason to either gather with those you care about and love. If you are spending time alone, I hope that feeds your soul as well.

Love,
Marie

Try not get worried

Over the past few days, the pain in my abdomen started getting sharper and more frequent.

Another friend passed away this weekend from cancer, triggering my concern about whether this pain was just another blip in the road or a milestone. At best, it was distracting. At worst, worrisome.

I tried to pay close attention to the pain and realized that whenever I was upset, anxious or thinking some judgmental thought, the pain got worse. I gave up judgment for Lent and thought I was doing pretty well, so those moments of awareness were particularly stabbing.

At Whole Foods this morning, still in pain, I got that shaky “off” feeling that I get sometimes, where things don’t feel like they are clicking and I feel like I need to get out of whatever physical space I am in.

I hurriedly collected and paid for my groceries, and I bagged them. I actually love bagging groceries and am pretty good at it, but not today. I wasn’t efficient and I wasn’t careful about putting my bags in the cart, leaving one precariously balanced on top.

The woman behind the register asked, “Can we help you get to the car?”

I thought, you don’t have someone to help bag. Who is going to get me to the car?

Jabbing pain.

I said, “No, thank you. I think I got it.”

Two steps later, the bag toppled onto the floor and one gallon of orange juice broke, causing a mini-flood. I stood and watched, not knowing how to stop it. It was right where the entrance and exit meet, so anyone coming into or out of the store was blocked.

The clean-up crew arrived. I apologized and rushed to get a replacement gallon. When I returned to my cart, all three workers who were cleaning the mess said to me, “It is all okay. We don’t mind doing this. We are more worried about you.”

I really needed to get out of there.

And so my day went.

A few hours later, driving to teach my religious education class of first graders, I started to panic. I promised them a pizza party today and often, with this age group, a change in routine has the potential for things to spiral out of control. Why was I even doing this? Who even cared? Was it worth the effort?

Jab. Jab. Jab.

How was I going to get through the class with this pain?

And then this song started playing:

Try not to get worried
Try not to turn onto
Problems that upset you

Oh don’t you know
Everything’s alright yes
Everything’s fine

It has been so long since I heard that song, I couldn’t even remember that it was from Jesus Christ Superstar. It was just what I needed to hear. And of course, I just love events that occur against all odds.

I got through the class. The kids were AMAZING. The person helping me said that it was the best behavior she has seen from them all year. And if the pain was there, I didn’t notice it at all during the entire hour.

Everything’s alright yes
Everything’s fine

Love,
Marie

 

 

 

 

Leg warmers of love

When I was growing up, my mother made all my clothes. For my senior prom, we went dress shopping together. With each dress I tried on, I would tell her the aspects that I liked, and when we got home, she made a pattern that incorporated each of those aspects into one unique dress that I loved.

My friend Harriet has similar skills. She can look at any set of raw materials and quilt, knit, crochet, build, sew or otherwise construct a thing of beauty.  And fast.

I can do that with food. I cannot do that with knitting, at least yet. From watching my mom and Harriet, I know a project can be done and I generally dive in, even knowing my limits.

When I wanted knit leg warmers, the pattern I loved was a cable stitch, something I’ve never done. I don’t require perfection but I know that I am a slow knitter. I worried that I wouldn’t get the leg warmers finished until next winter (who knew how endless this winter would be!). Also, there was that nagging feeling – would I be around to wear them?

Harriet and her flying needles immediately came to mind. Maybe she would make them? After a brief, online conversation with her, I sent off the pattern and the yarn.

Something to know about me: I don’t see people as they are today. I generally see them at their best. So say, if they were a great gymnast at age 7, a brilliant student at age 15 and a fashion model at age 20, I see them as all these things at once, even if they are 80 years old with a failing memory and walking with a cane.

It never occurred to me that Harriet might be out of her knitting phase and into something else. And she is too generous to burst my little imaginary world.

This is the story of the leg warmers and the generosity of friendship, from Harriet’s point of view. So beautifully told, I had to share it.

My beautiful leg warmers from Harriet

And the leg warmers arrived well before the end of winter, too. Thank you, Harriet!

Lots of love,
Marie

P.S. Harriet also taught my children to say, “Thank you for my lovely dinner. May I please be excused?” I LOVE that gift every single day.

Great Expectations

Usually I feel energized after acupuncture, so I look forward to the appointment, and then revel in the feeling afterwards. But this morning after my appointment, I was disappointed to drive away feeling tired instead of energized.

Of course, there was reason to be tired. Our busy weekend included lots of driving and attending the MA state gymnastics meet to watch our seven-year-old son compete.

I never competed state-wide for anything, so I was already amazed to be there, even as an observer. I hoped to see his display good behavior, a solid performance and a fun time with his friends.

We watched him closely in each event, and his performance and scores were solid. There were a lot of good competitors, but he could be proud of his performance. He was also a good teammate and having fun. How he placed felt secondary to us, and we all enjoyed the meet itself.

In the end, he placed 6th in rings, 6th all around, and first in the high bar. First in high bar in the state. Wow.

He was rightfully proud, and we were thrilled for him. We took lots of photos and made a fuss over his medals. Having no expectations to win made it feel like icing on the cake, and we all thoroughly enjoyed it.

Maybe I needed to get rid of my expectations around acupuncture (and lots of other things outside my control) and then I could enjoy whatever I won from it. And then simply move onto the next thing.

After the meet, during the long drive home, he called from the backseat.

“Mom, look at this!”

I assumed it would be something related to his medals. I looked back at him still wearing his uniform and the medals around his neck. He pointed to his mouth as he blew a big bubble with his gum and smiled. The gymnastics meet? So 15 minutes ago. He was having fun meeting the next challenge in front of him. I am thrilled that he is still only seven, after all.

 

Every little action helps (or, where is my rosary and how do I say one anyway?)

A former student traveled to Rome and bought a rosary for me at the Vatican. Not only was I incredibly touched that this eight-year-old girl would think of me during her vacation, she also selected a beautiful set of wooden rosary beads that feels lovely to hold.

For awhile, I carried them with me to every chemo session, keeping them in their little white paper bag from the Vatican shop. I didn’t actually use them, but I felt better just having them with me.

Then about 8 weeks ago, I couldn’t find them. I have several different rosaries that I love, but I hate losing objects that are meaningful to me and I went into a panic. I dug through everything I own and worried that I may have lost them at Dana Farber while I was in a chemo haze.

I vowed that if I found them, I would pray the rosary every day. They didn’t show up.

Then I did what worked for my ring – I prayed to St. Anthony, but this time laughingly. I had looked everywhere and this was a silly last resort.

But yes, less than 24 hours later, there they were, next to my bed. Crazy.

Wooden Rosary from the Vatican

I happily said one rosary, even though I don’t really know how to say the rosary. Yes, I looked online for instructions, but it seemed like you are supposed to meditate on different mysteries depending on the day of the week (with some exceptions, of course – why can’t this be straightforward!) and THEN, for each set of prayers within the rosary, meditate on a different mystery within the major category. It all felt so complicated.

I know that for each little bead, you say one Hail Mary. I seem to recall that on the larger beads between the sets of 10 little beads (decades), you say one Glory Be and an Our Father. But I don’t know what prayers to say at the Cross or at the funny little symbol that connects them.

So I did what I knew and called it a really good try.

They next day, I didn’t seem to find time to say the rosary until late at night. The day after that, I started to say one after I went to bed (counting on my fingers instead of the beads) and fell asleep shortly after starting.

The subsequent days, I only thought about doing it.

On Thursday night, walking down the hall to say goodnight to our sons, I passed by the rosary beads. As I continued walking, I said something like, “Mary, I’m going to need some help with this.”

On Friday morning, I went to a Mom’s Spirituality Group, where the group leader provides a topic and structure for our weekly discussion and we work within that structure. This week, the topic was stress, worries and anxieties. We were to write down our individual stress, worries and anxieties, then pick a buddy and discuss.

I don’t like to focus on these things, but I pretty much do what I am told so made my best effort. Janet and I finished first, so we paired up. After discussing our assigned topics, we started talking about life in general. At one point, seemingly out of the blue, Janet shared that a friend of hers told her to pray the rosary. Janet wasn’t sure where she would find the time, but realized that she spends so much time in the car that she could easily do it while she was driving.

She also told me that she doesn’t pray the “official” version of the rosary, just her own version. She believes that is okay because even doing that shifted something inside her, and events began to change for the better in her life. She assured me that Mary works to answer our prayers.

Though I appreciate all the details she shared, my favorite is simply that the topic came up at all.

I received direct help on how to get going on the rosary and the assurance that it can be meaningful without being a big event. Of course, that makes me stop in amazement and gratitude.

I want to thank my young friend for the beautiful rosary and the wave of miracles that unfolded because of her lovely act of kindness.

I thank YOU for every little action and thought from your heart. Regardless of how big or small it feels, each one is meaningful and has a beautiful ripple effect as well.

Love,
Marie

Time for tea

Susan held up the metal teapot and cloth tea cozy that belonged to her Scottish grandmother.

“Tea was the answer to every problem,” she said. “If you weren’t feeling well, my grandmother would say, ‘Let’s have a cup of tea.’ If you broke up with your boyfriend, she would say, ‘Let’s have a cup of tea.’ We would have tea, and everything would be much better.”

She paused briefly, then continued. “Of course, it wasn’t the tea itself. She had a whole routine of making the tea, then we sat down together, over cups of tea, to talk.”

Last week, I got to participate in a session run by Health Story Collaborative. The Health Story Collaborative is founded on the theory that there is healing in telling your story and in listening to the stories of others. The WBUR CommonHealth blog wrote up a summary of the session.

I shared my story, and the session felt so intensely personal that I wasn’t going to write about it here. The evening was filed with authenticity and laughter, and the energy that I felt afterwards left me wanting to just be with it. I didn’t want to check texts, emails or Facebook – unusual for me. Others who attended felt the same way. That gift of life force energy carried me for days and I continue to hold it in my heart. I didn’t want to do anything that might dissipate its special, powerful impact.

Then on Tuesday, I got my tumor marker measured. Over the past months, it has been going down, bit by bit, maybe 10 points or less at a time. Though the doctors label that “stable,” I am grateful for each drop.

This time, though, it dropped from 340 to 290 – a reduction of 50 points, or almost 15%. That is significant.

So, I’m stepping out of my silence to say, find a friend and take out the teapot. Share your stories, and listen with your heart. These seemingly small things make a big difference in our world.

If you are interested in sharing your story, find out more at Healing Story Sessions or email healthstorycollaborative@gmail.com

Love,
Marie