The Next Chapter

English Roseum in Bloom

I promised, Dear Readers, that I would share a longer, and happier, post this week.

As many of you already know, my fiancé and I were married on Sunday, June 9th, 2019 at Ausable Brewing Company (we were the first couple to get married at the brewery). My fiancé and I had been engaged for 2.5 years—and we had wanted to get married sooner—but, you know, cancer. And, transplant. And, timing.

Then, while on the road to an appointment in Boston, we started talking, once again, about getting married. We brainstormed venues, photographers, and ways to work around my unpredictable immune system. The conversation was an exciting rush, volleying ideas back and forth. There was this moment, when we both knew, that getting married was finally possible.

Our mothers helped make this dream come true. My mother and my Maid of Honor helped me pick out my wedding dress—which my mom paid for. She helped me get dressed, pinning my flower crown and veil to my hair. My mother-in-law purchased the perfect card box for our wedding and helped decorate the brewery’s pavilion the morning of the ceremony.

We wanted a small wedding for several reasons—one of which was my immune system. My immune system is almost 21-months old now, but I am not completely vaccinated. It was a risk to have a wedding. Every hug, every handshake, although offered in friendship, could result in illness.

I was, as I am sure you can imagine, nervous about mingling with our guests. True, the gathering consisted of immediate family and close friends that would never endanger me, but I felt nauseous anyways. I kept having this recurring fear of contracting the chicken pox (because, yes, I’m not vaccinated against that yet).

My feelings of anxiety settled a bit, when Pachelbel’s Cannon in D Major started to play. I watched my lovely Maid of Honor and the Best Man weave their way through the brewery’s pavilion, joining our guests behind an old barn. I was up next. My father led me down that same path, kissing my check when we reached our Officiant, Steph.

One look at my fiancé, and happiness bubbled up inside of me. The fear dissipated and the next thing I knew, I was doing what every new bride does: I was following the directions of our wonderful photographer, Julie (owner of JMRowe Photography). Below is a small sample of her amazing work:

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My husband and I danced to Ruelle’s “I Get to Love You”, for our first dance. These pictures were captured by either our friend, Jamie, or our sister, Kate (not sure who took which picture – but am so thankful that they were shared!).

After dancing, I welcomed as many of our guests as I could. I gave hugs, shook hands. I was taken aback by all of the compliments that I received. Gorgeous. Beautiful. Stunning. Were they truly talking about me? I rarely feel beautiful…or comfortable in my own skin. Treatment has left me with so many scars, both visible and invisible. How could I be ‘stunning’?

Our wedding was nontraditional. As such, we hadn’t planned on doing any of the traditional dances (i.e. father-daughter, mother-son). It was a happy surprise, then, to have a dance with my dad.  My brother, in charge of the music, played “I Loved Her First” by Heartland. I should preface this by saying that I have always been a Daddy’s girl. I nearly started ugly-crying halfway through the song. I had put this loving, kind man through so much—almost dying on him at least twice—and, yet, there we were. I was alive—and so, so grateful to have the opportunity to dance with my dad.

KL received_481882679215704
Photo courtesy of my long-time friend, Kristy.

“You’ll always be my pumpkin,” he said when the dance ended.

Our wedding was not only the beginning of our marriage; it was also an enormous leap toward normalcy, toward healing.

The next day, while lying in the MRI machine, I began to review everything that had happened at our wedding. I had been so joyful. I had felt so loved, so blessed. Tears of gratitude began to slide down my cheeks.

I have waited a long time to be happy, to feel okay about myself, to feel hopeful. No more waiting, Dear Readers. Life is too short. As my oncologist told me after my scans, “we did a lot of terrible things to you. Now it’s time to put Laura back together again”.

Let the real work begin.

Thank you, Dear Readers, for your presence here, for your patience, and for your prayers. You have been a well-spring of support. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

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Boots and Camera, Please

spring

As you know, Dear Readers, I had my power port removed last week.

I promised, on Facebook, to write a blog post about it. I wanted to use that post to encourage others to research Post-Traumatic Stress Disorder (PTSD). Unfortunately, the more time I put into writing that entry, the more triggered I became.

For me, PTSD has its roots in medical trauma. So, even a “small procedure” such as a port removal, is a big deal. It summons nightmarish memories from both of my cancer experiences and my transplant. While writing about it, I realized that I was walking the fine line between Mental Health Advocacy and Desiderata’s poetic advice, “Be gentle with yourself”.

I chose Desiderata.

I needed a break from the anxiety of it all—some solace—so I put on my boots, grabbed my Nikon, and went outside in search of spring. It wasn’t difficult to find.

We only have a few deciduous trees in our backyard. Currently, they are all heavy with buds and the promise of green leaves.

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Our English Roseum (otherwise known as Rhododendron) is starting to wake up, too.

English Roseum

The shrubs, framing the front porch, are wearing the signs of new growth:

 

new growth

I am not sure if these are Day Lilies or Irises, but they’re certainly trying to reach for the sunlight.

iris or lily

And, then, of course, there are the birds:

robin in the horse shoe pit

Although this photograph—of a cardinal amid the tree buds—was pure luck, his presence was a comfort after such a long week.

cardinal amid the tree buds

Thank you, Dear Readers, for all of your prayers, light, and love. Please continue to send them; I have another follow-up appointment in Boston this week. It is imperative that my white blood cell lines are within normal limits this time.

 

With Love & Gratitude,

Laura

This is Peace. This is Panic. This Might be Primaveral.

As you know, Dear Readers, my life has been a whirlwind of diagnoses, followed by medical procedures. I’m not particularly skilled at either resting or relaxation—but I can recognize them when I see them:

peace

This picture was taken last week. I was sitting on the love-seat, editing my latest manuscript. When I looked up from the text, both of the fur-babies were sleeping. Alderaan was on the mantle, and Luna was in her favorite spot, the recliner. The fire flickered quietly on the hearth. I took a picture, to capture the moment. This, I knew, was peace. Rest. Healing.

I am so grateful for these little moments.

And, yet, while writing these words, and studying that picture, I had a panic attack. There were no warning signs; I simply, and suddenly, had difficulty breathing. I felt like my heart was wedged between my clavicle and my first rib. I’ve had panic attacks in the past, but it’s been awhile; this one caught me by surprise. For a minute I thought, like most people do, that I was having a heart attack.

The panic attack eventually passed, and with it, the chest pain. I was exhausted afterwards, and left wondering what had triggered it. My brain, although tired, conjured Alanis Morissette’s song, “Ironic”. Because, yes, it was ironic to have a panic attack while thinking and writing about peace.

I couldn’t find a satisfactory answer as to what triggered the attack. Normally, I would sift through my anxious thoughts to find the source. Identifying our fears and confronting them are, in my experience, one of the only ways to beat them. Sometimes, though, that’s contraindicated—especially when rest is required. As the adage goes, “Let sleeping dogs lie”.

If the temperature is mild, Luna likes to take brief naps in the green lawn chair on our back porch. When she’s not resting, she’s using the chair to survey her territory. I realized, recently, that she might also be observing primaveral changes. There are some signs of an early spring: the angle of the sun and the moon have changed, and, now, it is not only the blue jays’ squawk greeting the sunrise. There’s another bird, hiding in the cedar hedge. Its song is more melodic, it speaks of warmer temperatures and flowers poking through the frozen earth.

It’s early yet (and it is snowing this morning), but spring is not far away.

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These are obviously fake tulips—with price tags still on them—but I find the colors inspiring…so I thought I’d share them with you. I hope, if you need to smile, that they help.

Thank you, Dear Readers, for your continued prayers, love and light. Your presence here, at Of Perras & Pieridae, keeps me going. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

On the Ice

icicle 01.25

Both of our sidewalks—and our driveway—are currently miniature ice rinks.

They’re slick, slippery, and challenging to walk on. I’ve nearly wiped out on four separate occasions. Due to this, I’ve decided to be a bit more cautious and use a ski pole to help me get to where I need to go. It’s slow-going, but to quote a popular adage, “it’s better to be safe, then sorry”.

I imagine, that those of you who live near us, are experiencing similar conditions.

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When I look outside at this ice—especially the large patch next to the garage door—it summons memories of winters past.

ice next to garage
Underneath that dusting of snow, is ice

There were several winters in which my father made a shallow ice rink in the side-yard. My brother and I were still in grade school at the time—and huge fans of “The Mighty Ducks”.

The goal—the reason for creating an ice rink—was to teach us how to skate.

Our parents bought us hockey skates, because they have better ankle support. They were black with white laces. The blades glimmered, new. Our father used to play hockey in high school, and later, in a men’s league, so we’d don his old helmets. He’d skate with us, keeping an eye on us as we pushed chairs across the ice.

little icicle

I will admit to not being good at it. In fact, I’ll go as far as to say that I can’t skate.

Why? How could such a thing happen when I had the best skating coach that a little girl could possibly ask for?

I was afraid of falling. Because of this fear, my body would tense up, rigid. I seem to recall that my knees should have been slightly bent, a bit relaxed, even. I couldn’t do that. Relaxing, to me, meant giving up control.

Control is believed to be power; but, it’s a complete myth. We’re never 100% in control of our lives. Sure, we can have a direct impact on how our lives unfold via the choices we make (to pursue an education, to apply for a particular job, to eat healthy foods and exercise). We can control what lens we use to view the world. Viewing the world through a positive lens can make life feel and look better; conversely, viewing it through a negative lens, can make it quite awful.

I, obviously, didn’t know any of this when I was a little girl on that ice rink. I remained tense, hoping to keep every ounce of control that I thought I had. There are consequences for not relaxing. In the adult world, it’s called, “burn-out”. As a little girl in skates, it was a missed opportunity.

Learning how to relax—giving my mind and my body a break from stress—is now at the top of my priority list. It encourages healing (which I have plenty to still do). I don’t need to control everything about my life; “burn-out” and “missed opportunities” are too steep a price to pay. As another adage reminds me, it’s important to, “stop and smell the roses”. Relax, slow down enough to notice the little things in life—which, more often than not, are the most beautiful things.

more icicles

Will I ever wear a pair of skates again? I don’t know. Maybe. We’ll see.

Thank you, Dear Readers, for the prayers, light, and love that you send my way. This past week was full of appointments—and your good wishes carried me through. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

A Fear to Laugh At

Those of you who have followed this blog since it’s inception, know that I often write about medical appointments and/or health developments. Some of those posts were difficult to write. Living through those events was, at times, quite frightening. Today, though, I’d like to share a light-hearted fear—something that can be laughed at.

Some pertinent background information:

  • I am not a gamer, but my fiancé is. It’s through his interest in gaming that I was introduced to Rust.
  • Rust is an online, multi-player video game. It is set in a post-apocalyptic world, in which survival is neither easy nor guaranteed. In Rust, players must scavenge for food, weapons, and clothing. Players make their own outfits from the various materials that they find (i.e. wooden barrels, metal buckets). Occasionally, players discover hazmat suits—which are helpful in high-radiation zones. It is the end of the world, after all.

So, what does any of this have to do with me? It has come to my attention that every time I carry a letter out to the mailbox—in the wee hours of the morning—I am dressed like a character from Rust. My outfit does not adhere to any fashion standards…it’s just a quick ensemble, pieced together to survive the cold.

I don’t bother getting properly dressed to put mail in the mailbox. Instead, I throw my thick, winter coat on, over my pajamas:

winter coat

My coat is respectable enough, but the pajama pants that I wear with it, vary from silky black material, to Christmas-themed, to gray with pink, dark gray, and white polka-dots.

I wear snow boots.

boots

This ensemble is topped off with a Star Wars hat:

star wars hat

Every time I open that front door, I pray for three things:

  • Dear God, please keep Alderaan (our cat) upstairs where he is safe. Dear God, you know my heart will shatter if he sneaks outside and becomes a road pancake.
  • Dear God, please do not let me fall.
  • Dear God, please don’t let anyone take a picture of me.

The road we live on is well-traveled, and I am afraid that one of these days, a commuter is going to snap a picture of me with their cellphone. I’m dressed so ridiculously in the morning, that I feel as though the picture would go viral—especially if it’s marketed creatively:

Woman believes she lives in Rust.

Woman dressed to scavenge, bust geodes, and build her base.

 Woman in Rust wears a surgical mask—it’s the end of the world!

Clearly, my marketing skills are a bit rusty. Pun intended.

I’m not actually afraid of having my picture taken; in fact, I find this “fear” to be rather amusing. It is so insignificant compared to other fears that have plagued me in the past! And, sometimes, it just feels good to laugh at the workings of my own imagination.

Thank you, Dear Readers, for visiting Of Perras & Pieridae today. I hope the description of my morning, Rust-like, attire makes you smile.

 

With Love and Gratitude,

Laura

The Beauty in Broken Things

snowflake on coat
Not broken, but beautiful

We’re only fourteen days into 2019, and, already, the new year has taught me some significant lessons.

While undecorating the Christmas tree, an angel ornament broke.

The dryer is screeching…not a little bit, but a lot.

I broke a tooth.

How can I be “okay” with any of these happenings? The answer is quite simple: most broken things can be fixed. With, perhaps, the exception of these ink-stained pajama pants:

ink stain

There’s no saving these, but that, too, is okay. I only ever wear them to bed. And, if you look closer, what do those ink stains look like? Hearts. They look like hearts.

I was not happy about the angel ornament breaking. This ornament was actually a party favor from a friend’s wedding (forever ago). The angel has shown me, that although broken, she is still quite beautiful. Just a dab of hot glue, and she will be whole again. She will be ready to shine on 2019’s Christmas tree.

seashell angel 1.0

The dryer, of course, is another matter entirely. It’s teaching me patience (the lesson that I am given again and again. Someday, I’ll actually be patient). My fiancé has ordered replacement parts to fix the problem, but in the meantime, I have to hang our clean, but wet, laundry on a wooden clothes rack to dry. The drying process is longer, and the product is rather scratchy, but it works.

dryer

Let me tell you, when I can use that dryer again, I might just buy some sparkling juice to celebrate!

Finally, my broken tooth. This, was unfortunately, fated to happen. I can’t remember if I ever wrote about the dental evaluation that I had to have, prior to my bone marrow transplant in 2017. The short version: this evaluation resulted in having one tooth pulled and a few others marked as likely to cause future issues.

Well, here we are in the “future”, and a suspect tooth did as was predicted—it broke.

The break didn’t hurt, but unhealthy teeth are gateways for infection. So, Dear Readers, I will be visiting the dentist this morning for an exam. I’m not sure if any work will be done, but I will need to take an antibiotic anyways. PowerPorts—I still have mine—are susceptible to infection from dental work, especially if any plaque is disturbed and makes its way down the port line.

Similar to most people, I do not like having dental work done. The drill, the Novocaine shot…ugh. For me, though, it’s the overhead light that is most bothersome. It is a PTSD trigger. Sometimes, when I am sitting underneath that light, I think I can see other masked faces staring down at me—faces that performed my ICU surgery in 2010. These images bring me back to a time, and a place, wherein I was on Death’s doorstep.

That’s not an exaggeration. I nearly died, and no matter how much time passes, it is something that continues to haunt me.

How do you face a fear like that? I plan to silently recite a verse from the New International Version of the Holy Bible, specifically, Psalm 91:11a. I’ve written about this verse before. I find a great deal of comfort in these words, so I thought that I’d share them once again: “For He will command His angels concerning you…”.

So, 2019, I see this challenge, and I will view it as Exposure Therapy—which, in the end, will only make me stronger.

Thank you, Dear Readers, for continuing to send love, light and prayers. You give me hope and strength to see the positive in so many situations. Thank you, thank you, thank you.

 

With Love & Gratitude,

Laura

All of The Feels

It’s 4:36am, to be exact.

And, it’s time to be honest.

I shield the people I care about—including you, Dear Readers—from a lot of what I feel and live with on a daily basis. I don’t like people worrying about me; I certainly don’t want pity. I just want my life back…which…having survived cancer when I was in my early twenties, I know is impossible.

You can’t go back.

The setting for ‘normal’ has changed. Forever.

Of course, this isn’t a rule that applies to everyone. There are survivors that accomplish amazing feats after treatment ends. Sometimes those achievements occur in the world of work. Sometimes it’s on the side of a mountain. Sometimes, they emerge from the cancer world happy, healthy, and stronger.

But not me. Not right now, anyways.

I only hinted at this in my last post, but my heart is currently broken. My transplant anniversary is quickly approaching and, by most standards and available literature, my immune system should be ready to go at that point.

The hard truth is, my immune system won’t be ready.

I’m still on too many immunosuppressants for my system to come back on time. It is currently impossible for me to be taken off of these medications as my borrowed bone marrow and my body don’t get along like they should. To take away the anti-rejection drug or the steroids (both immunosuppressants), I would become infested with Graft vs. Host Disease (GVHD). It has happened nearly every time that my transplant team has tried to taper me off of these medications.

So, what does that mean?

My transplant anniversary, September 21st (also known as my “1st birthday”), is not going to be the magical day that I had so foolishly hoped for. All of this time—the entirety of 2017 and 2018—I’ve been lying to myself. I kept pushing through the appointments, repeating: September. September. Everything will be better in September.

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September isn’t going to change anything for me. I won’t be freed from wearing a surgical mask and gloves in public. The strict dietary rules will continue to be applicable. Worst of all, I won’t be able to live with Alderaan (our cat) until my borrowed marrow and my body decide that they like each other.

All of this hard work, all 14 medications that I take every damn day, all of these appointments—and my immune system isn’t going to be ready.

If this post sounds a bit angry, it is. I can, and I will, blame it on the steroids. It probably also sounds a bit like a pity party—and maybe it is, because I don’t usually acknowledge these emotions—so, now, while I’m still waking up, these feelings are emerging without restraint. I feel defeated. I feel like I’ve lost myself. Who was I before all of this? I don’t know. I can’t remember her.

I suppose…if I have to look on the bright side…this is an opportunity to build a new me—from the ground up. My prayer for the remainder of August, and however many months it takes for my immune system to come back online, is that this extended recovery period ushers in something good. Maybe, just maybe, a fellow ‘slow healer’ will find this post, and won’t feel so alone. Maybe they won’t feel different like I do. Maybe they won’t feel like a failure.

Please send prayers, love, and light, Dear Readers. I have cranial and lumbar spine MRIs scheduled for August 21st. It’s precautionary, but there is always the fear that the scans will show something unwanted.

 

With Gratitude,

Laura

Free Write

Most of the writing that I do these days is quite strict. Skraeling, my manuscript-in-progress, is now 70,497 words strong. The protagonist, Aurora, is the first anti-heroine that I have ever created. I love the story, the challenge that it poses, the research it has required—but I miss playing with words.

To regain that sense of play (and have some fun), I decided to use this week’s blog post as an opportunity to experiment, to record observations, to simply let the words take whatever shape they wanted to. For this week only, my traditional blog post has been replaced by what is essentially a free write.

Nearly every English course that I have ever taken has employed free writing for at least one class session. Why? One plausible reason is that free writing helps students get words on the page by eliminating worries about grammar, story structure, and spelling. In free writing, these conventions don’t matter—it’s the ideas that do. Typically, free writing is not edited (but the perfectionist in me happily broke that rule). So, here it is. This is where my mind wandered to:

I recently heard Autumn’s first cricket chirp.

It seems a bit soon for the insect to resume its song. Yet, there it was, chirping a melancholy tune. Too soon, too soon, I think. I need more time. I’m still on too many immunosuppressants. The anniversary of my bone marrow transplant is approaching; my immune system is supposed to be mature by that date. My bones, and my borrowed marrow, tell me that it won’t be.

not a cricket
Not a cricket, but I thought this little guy (or gal) makes a good substitute.

I saw the first, crimson leaf on an Euonymus alatus (commonly known as a Burning Bush) yesterday.

My memory—what remains of it—pulls me back to the tan-colored, bricked buildings of our college campus. I think I see you there, amid the parade of departing students, but what do I know? I, the Woodcutter’s daughter, had to research which tree the acorn belongs to. Worse still, I had somehow forgotten that the helicopter-like seeds, the ones that spin and twirl to the ground every Fall, belong to the maple. These facts were once in my blood. How could I have forgotten?

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I have felt the comforting warmth of a favorite, over-sized sweater nearly every morning this past week.

The mornings, before the sun rises in earnest, are quite cool. I shrug into the sweater—the black and white one that my mother bought for me the first time that I had cancer—and I put the hood up. From my seat at the kitchen table, I can stare out the window. I can watch the sky as it begins to lighten, darkness melting away.

I tasted a tart apple and wanted to add cinnamon, sugar, butter, and oats.

apple crisp recipe

There’s more to the family recipe for apple crisp than all that, though. Once out of the oven, you will need vanilla ice cream to melt on top of it. Remember, innovation is acceptable, but only if it’s as sweet as a fine drizzle of caramel.

I smelled bitter, dark-roasted coffee.

morning coffee

Bitter is better at 4am in the morning. I don’t add sugar to my daily cup; God knows I have enough cavities. I only consume two cups—preferably using one of our giant mugs—and I’ll have to stop drinking after that because my heart will begin to race. My fingertips follow suit, flying over my laptop’s keyboard.

I am my own cricket, tapping out an oftentimes melancholy tune.

keyboard
Please excuse how dirty my keyboard is. The last time I tried to clean a keyboard, I accidentally fried the entire laptop. 

Thank you, Dear Readers, for allowing me to experience writing as a creative outlet once again. I apologize if this post makes very little sense, but please know that it was incredibly fun to write! I needed to do this. And, who knows? Maybe my next novel-length project will have its roots in this text.

As always, thank you for your prayers, love, and light.

 

With Gratitude,

Laura

Words of Comfort, of Healing

 

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In response to my last blog post, someone I consider to be a dear friend kindly asked:

“…What is your favorite thing for people to say in support? Are there certain statements that help noticeably more than others? If all we have are words to help you I’d like to use the words that mean the most to you.”

I didn’t have an answer.

As a writer, I always have words—or, rather, the arrangement of words—on my mind. For instance, I spent a great deal of time trying to describe the color of the Sternbergia lutea flower for my novel-length manuscript, Greenwood. More recently, I’ve been searching for the right words to describe a fictional Norwegian Forest cat named, Birkir. He has an important role in my current writing project, Skraeling.

Despite this constant meditation on words and how best to use them in fiction, I have rarely thought about what words would be most comforting to me in uncertain or frightening situations. I couldn’t answer my friend’s question until this past Thursday morning.

Many of you may remember the notice I posted regarding the week of June 25th. Namely, I wrote that there wouldn’t be a new blog post that week due to having so many doctors’ appointments in Boston. Among those appointments was a surgical procedure—meant to diagnose the potential presence of a secondary cancer. I’ll spare you (and me) the details of “what it might have been” and “what they did to me”. Instead, I’ll just say that I received an email on Thursday morning announcing that the procedure results were in. The email also listed the results…and I couldn’t decipher them.

I did what anyone with a difficult medical history would do—I panicked. I cried. Yes, I have been a patient, in various capacities, since I was 23 years old. Although my sojourn through cancer and transplant-land has been long, it does not mean that I can speak the language of the medical field. Overwhelmed, I kept scrolling through the procedure results, desperately trying to translate them.

Finally, I worked up the nerve to call the doctor’s office.

No one picked up. I had to leave a message.

Surprisingly, while all of this was unfolding, something wonderful happened. I realized that I did have an answer to my friend’s question. As found in the New International Version of the Holy Bible: “For he will command his angels concerning you…” Psalm 91:11a.

Alderaan July 2018

I was spiraling in a panic attack, but I kept repeating the verse over and over again. Soon, there was nothing else in my mind. The Bible verse was in my blood, in my lungs. It was the ocher buoy keeping me afloat in a sea of anxiety.

When I finally received a call back from the doctor’s office, I was collected enough to hear the words, “very good results”.

And, then, I started crying again—big, grateful tears.

Fortunately, I don’t have a secondary cancer. I will have to be monitored for any changes, of course, but in this present moment, I have time to rest and heal. I also now have words to comfort me when old fears rise.

pink wildflowers

Please continue to send prayers, light and love, Dear Readers. They are both needed and very much appreciated. Thank you, thank you, thank you.

With Love,

Laura

 

A Temporary Absence

rain on leaves

Dear Readers,

Please note that I will not be sharing a new blog post this coming week.

As some of you may already know, I will be in Boston for several appointments on Monday, June 25th—including a surgical procedure. If possible, please send light, love, and prayers my way. Thank you, thank you, thank you.

With Love,

Laura