Couldn't Make This Up If I Tried...

Hi there, friends.

Didn’t expect a blog post from me today, now did you?

Join the club.

I didn’t expect to be typing this from the comfort of the couch, with my favorite fluff ball by my side.

You know what else I didn’t expect?

To walk into the hospital at 5:30 this morning and be told that my surgery had been canceled and my doctor is no longer practicing at the hospital.

(Feel free to read that several times. Yes, you are deciphering the words correctly).

People, I couldn’t make this up if I tried.

To say that this is a train wreck is not quite a strong enough phrase. 

To say that I have absolutely no idea what happens next is also quite the understatement. 

Do I just go home and resume my life, with a casual side of heart failure?

I moved my entire family, closed up work for a few weeks, rescheduled other appointments and procedures for every member of my family (even the dog!), prepared and planned every last detail, did the emotional goodbyes with my family this morning…and then got sent home 10 minutes after I arrived.

I’d also like to point out that this is now the second time this year that my surgery has been canceled. Different procedures. Different doctors. Different states. Same outcome.

2020, friends. One for the books.

I’ve spent all day on the phone, calling the disappearing doctor’s now former office, my home cardiologist, the hospital, every member of my family, desperately trying to piece together what happened. 

More pieces of this seriously screwed-up puzzle are still coming in, but as of now all I know is my surgeon unexpectedly and abruptly left the practice. If I glean correctly, this happened last Thursday. Another doctor in the same practice evidently called my home cardiologist to tell him on Friday. 

Neither one of them thought to call me. 

When the office staff received my pre-op labs and COVID test, somehow they didn’t see that as a GIANT CLUE that no one had called me.

So here we are.

I received a phone call this afternoon from the disappearing doctor’s colleague who never called me. It was a very sincere and heartfelt apology. He took complete ownership for the absolutely unfathomable error. As a highly sensitive person, I value a good apology. But at this present moment, it’s not enough.

And much more importantly, what the heck do I do now?

I’ve put out some feelers, I’m doing some more research. To be honest, at this point part of me is just throwing my hands up and hoping that something just falls into my lap.

Unrealistic? 

To say the least.

I have been moved to tears by the outpouring of love and support from our family and friends. I cannot even begin to describe how much it has meant to me and my family, and even though I know this situation is of absolutely no fault of my own, a small part of me is almost embarrassed to show up empty-handed. 

As if people went out of their way to say congratulations on your graduation, but it turns out you failed a class and didn’t actually get your diploma.

For now I’ll just say thank you from the bottom of my ever-so-slightly-still-broken heart. 

Onward and upward, friends.

Spicing It Up

Well friends, quite a year, eh?

Just a few things have gone on, ya know, here and there.

(Understatement of the century).

You know what would make this year even more interesting? 

Heart surgery. 

Because why the heck not. 

You may remember from my last blog post that Penelope was given an eviction notice. You may also remember that my cardiologist had decided on a plan and I even had a surgery date. 

You know what has happened since that day? 

A global pandemic.

An insurance denial. 

An emergency surgery [for my cardiologist.]

To name a few…

So now here we are, months later, trying to piece together the next steps of a seriously fragmented puzzle, all of which have led me to having a completely different surgery, in a completely different state, at a completely different hospital, with a completely different doctor, on Monday.

(How is it again that we are only slightly half-way through 2020?!?)

When I saw my cardiologist’s number pop up on my phone back in March, I wasn’t surprised. I had been expecting someone to call and tell me that my surgery was being postponed until it was safe to resume normal surgical activity. I was NOT expecting a nurse to tell me that my surgery had been completely cancelled because my insurance company decided I was not in ENOUGH heart failure for their liking. Heart failure? Yes. Enough for them to pay for a surgery? Evidently not.

When my doctor mysteriously disappeared a few hours before I was supposed to meet with him and figure out what on earth we were going to do, I (along with his staff) treaded water for weeks while we waited for him to return…and we all realized just how much we rely on him for everything. He is, thankfully, back to the office and healthy and happy now, just in time to paddle my seriously off-course canoe. 

Speaking of, it’s always a really great sign when the aforementioned brilliant doctor who specializes in the rare and unusual...sends you to someone else.

In fact, on Monday I’ll have heart surgery with a doctor I have only met on the internet, which feels like a mix of a plot for Law and Order and like I swiped right on Doctor Tinder. 

After consulting with some colleagues, my doctor sent me to a new cardiologist who is well-known for a relatively new procedure, called His bundle pacing. I’ll spare the squeamish the details, but it involves a lead straight to the His bundle in the center of my heart, bypassing the problematic areas entirely.

Picture sifting through the ice and trying to snag the last maraschino cherry in your Shirley Temple with a drinking straw, and you’ll be pretty close. 

It’s not a guaranteed procedure - meaning there has been a lot of success with this surgery, but sometimes it doesn’t work. My track record for being the exception is...well...let’s just go with “lengthy,” but if there was ever a time to break that pattern, this is it. 

Within 2 minutes of meeting my doctor in a virtual appointment, he told me that if things didn’t change, I’d be in complete diastolic heart failure by age 44. 

I’m 37. 

So that’s cute. 

I have a LOT more to do with my life and I need the time to do it. So this has to work.

No pressure, doc. 

It’s unclear if Penelope will actually be retired, or if she will just “get a little work done.” Until my doctor goes in and examines the situation, he won’t know if he will need to replace the unit or not. 

To be clear, Penelope is my literal ride or die and I am grateful for every single heart beat she has provided since 2014. 

To be even more clear? If they replace the entire thing, I get 8-10 years before another surgery. If not, I do this all over again in 4-5. 

I told my doctor not to try too hard. 

Perhaps the strangest thing about this whole experience is doing it completely alone. On Monday morning, suuuuper bright and early, Mr. Restarting My Hard Drive will drop me off at the front door of the hospital...and pick me up whenever I get discharged, hopefully the next day. 

In a weird way I feel grateful that I’ve had so many surgeries before, and I have experienced the long wait time between arrival and when you actually head into the OR. Doing it alone will be different, but at least it’s not my first rodeo. 

Waking up from anesthesia alone, however? Now that’s strange. 

On the plus side, it will make for some exceptionally interesting FaceTimes for my family, so there’s that. 

In general, I prefer to find out I need surgery and be in the OR within a few days. The longest I’ve ever waited is a month, and it was brutal. This surgery? I’ve waited 5+ months, and I’d like it over with right now thankyouverymuch. 

I’ve had far too much time to worry about every last thing. Too many minutes thinking about the things I’m going to miss. Too many moments wringing my hands with grief and anger that I’m forced to miss a single second of my daughter’s life. 

It’s time to rise up, friends. 

Let’s do this. 

Now Accepting Nominations for a New P Name….

Yep. 

You probably already guessed it from the title of this post.

Penelope the Pacemaker is heading for an early retirement.

If by early, I mean REALLY early. 

About 8 YEARS early. 

To call this unexpected is somewhat misleading. It has been a possibility for the past 7 months, but one I really, madly, desperately wanted to avoid.

Desperately wanted to avoid to the tune of weekly infusions to increase my blood volume, daily electrolyte tablets, constant exercises to push the blood out of my legs, and salting every meal I ate. The robot hanging out on my heart had to be set so high during the day that it would have been impossible to sleep…so my doctor added a “sleep setting” from 10 PM to 6 AM. Want to go to bed at 9:30? Denied. Still asleep at 6 AM? You’re about to experience the feeling of an actual hummingbird inside your chest by 6:02. I was, quite literally, a larger than life alarm clock.

Despite all of that, I couldn’t get through my daughter’s class at The Little Gym without staggering to hold the wall or grabbing the toddler-sized balance beam to keep from collapsing into a passed-out pile. 

(Not exactly the best way to make mom friends.) 

The aforementioned list of surgery avoidance techniques was going quite well...until it wasn’t. 

In late December I found myself needing to sit down and rest at the top of a flight of stairs. If I was sitting on the floor with my daughter and turned to grab a book, I started to pass out almost instantly. Halfway through a dog walk, as I was pushing the stroller up a hill, I’d be so tired that the thought of sitting down in the middle of the path to take a siesta actually occurred to me…but ya know, dog and toddler in tow. This wasn’t all the time - I’d have days where it wasn’t a problem at all…but also days where I was avoiding a full syncable episode 15-20 times a day. I’m no expert, but I’m pretty confident you aren’t supposed to spend the day trying to avoid melting into the furniture. Gradually, the days where it wasn’t a problem became fewer and farther between. 

Now, yes, when it’s all typed out, I will admit the writing was on the wall. BUT…in my defense, it’s not always that crystal clear. You know what causes fatigue and heart rate changes? Thyroid disease. Digestive disorders. Autoimmune disease. You know what can cause dizziness? Sinus congestion. Autoimmune disease. Thyroid disease. You know what can cause insane fatigue? A TODDLER.

You see my point…

I did finally get myself to the cardiologist. He hooked me up to the computer so he could take a look and…silence.

Clicking of the mouse.

More silence.

Few more clicks.

Then, the phrase.

You know the one. 

The phrase which is, coincidentally, the title of my future autobiography:

“Well, I’ve never seen THAT before.”

Stupendous.

Friends, my pacemaker did the literal ONLY thing it’s designed to never, ever do.

It reset.

Erased all of the data.

Went to the default settings.

And turned off the closed loop stimulation, which is why I have the pacemaker in the first place. 

I was being paced 30% of the time. For the past 5+ years, I’ve paced at least 85% of the time.

I’d like to formally apologize to my 2-months-ago self for calling you a wimp mid-dog walk.

My doctor had never seen this before.

(Shocking, I know.)

He asked if I had been hanging out in a data center, or near an exceptionally large magnet.

Nope.

He made his best guess on my settings, and told me to come back in a week. I researched my face off for that week, trying to figure out what I may have gone too close to that would have caused such havoc. He said it would have been something equivalent to 200+ computers…seems like a good time to point out that I work from home, stay home with my toddler full time, and eat about 3 things, so I’m not exactly galavanting around the globe on the regular. I surveyed my friends for ideas, poured over the internet searching for everything from local business construction to lawsuits for faulty devices, and came up with nothing. I called facilities where I go often and completely perplexed (and overwhelmed) 99.9% of the managers when I asked questions about electric conduction and data centers on site. Again - nothing. 

A week later, when he interrogated my pacemaker the “lead failure” error code appeared on the screen. The battery life had also decreased by 2 YEARS in a week.

More silence. 

More mouse clicks.

“Huh.”

So my doctor did what we all do when we are facing technological difficulties - he called tech support….who was unsure, so they called the company.

In a nutshell - the smartest man I know called tech support, who called their tech support. 

When the company said they “thought they had seen this once before” even my doctor said that wasn’t very comforting. 

(Sidenote: I’m still not sure if knowing my doctor was as perplexed as I was is more or less reassuring.) 

After much back and forth between all parties, and approximately 7 million stickers placed all over the exam room in an attempt to quiet my pint-sized sidekick, the team figured out how to override the setting that was making my pacemaker go to default mode in the first place. 

Why was it defaulting?

No one knew. 

Why did it turn off in the first place?

Unsure. 

Was there actually a lead failure? Was the battery actually dying at a rate of 2 years per week?

Most likely not to the former…possibly to the latter.

Let me just say that absolutely nothing makes you feel more like a robot than the sight of two men talking on speaker phone, hovering over a screen…that happens to be dictating every move of the second most important organ in your body. 

I’m pretty confident I would have fit in well with the Jetsons. 

When my doctor sent me off this time, he asked me to come back in a month, as that would give him enough data to know if there was actually a lead failure and to see if we could figure out why all of this was happening - with the knowledge that Penelope was no longer able to just turn herself off. 

It was a long month.

It wasn’t terrible, but it wasn’t good, and deep down through all of this, I just knew.

When I went back a month later and he looked at my stats, I think we both knew.

Prior to all of this drama, my atrium paced about 85% of the time and the ventricle only 5-8% of the time. In the past month, my atrium paced 97% of the time and my ventricle had shot up to a whopping 35%.

My literal ride-or-die since 2014, Penelope just couldn’t keep up anymore.

No one knows if the device is faulty, or my needs just outgrew my pacemaker’s abilities. Possibly a little bit of both, but most likely the latter. No one knows what event caused this cardiological cacophony. Like most things in my medical life, the quest for WHY is a dead end, that while infinitely frustrating, is a total energy vampire. 

It does not serve me to put all of my effort into searching for the unattainable.

In a few weeks, at Penelope’s “retirement ceremony” I’ll switch from a Toyota to a Tesla. The procedure is literally called a “pacemaker upgrade.” Right now I have a two-line pacemaker with closed-loop simulation protocol, but my upgrade will be a fancy-schmancy three-line pacemaker that enables both ventricles to be stimulated at the same time, pumping more blood around my body with less sloshing back and forth within my heart. It is, for my medical friends, a Biotronik Cardiac Resynchronization Therapy Biventricular Pacemaker. 

So fancy.

And yes, I’m bitter that yet again, my doctor won’t let me bedazzle it before implantation. Lame. 

(How cool would my X-rays be?!?!)

It’s easy for me to joke - it is and has always been, my coping mechanism for life.

I’m joking, but I’m also crushed. And even I am having a hard time laughing it off this time. 

Is this major open heart surgery? It is not. 

Does it affect everything? It does. Much more than ever before when I have marched into surgery after surgery like it was just another day at the office.

In 2014 I was barely working, and spent most of my time alone, focused on my health. 

Now I have two jobs, a toddler and a “doggler,” and I make it my personal mission to be as normal an adult as humanly possible.

I spent nearly a decade being told everything I can’t do, can’t eat, can’t be.

I have fought, clawed, scraped my way back to the the world of CAN, and getting benched back to the CAN’T, even temporarily, just feels like the biggest slap in the face. 

It feels like the the universe is saying, “You thought you could just live your life? Ha!”

This current season of my life? I really like it. A lot. I don’t want it to change.

I don’t want to be told I can’t pick up my child - for months.

I don’t want to go back to slow, boring walks for exercise. 

I don’t want to miss out on working out with my group of amazing, supportive moms and their awesome kids.

I don’t want to inconvenience our families. Again. 

I just…I don’t want to. To all of it.

Yes. I realize this is temporary.

Yes. In theory, I should come back stronger.

Yes, I’m beyond grateful to live in a place where I have access to incredible medical care, and health insurance that helps (understatement of the century) pay for it.

Yes to all. 

I can be both grateful and crushed at the same time, and I very much am.

I know seasons change. I knew this one wouldn’t last forever. 

I just had hoped for it to last a little bit longer. 

I’m oddly nostalgic about losing Penelope. Despite the fact that I am fully aware she is a completely inanimate object, she has been with me through thick and thin - the most obvious being the birth of my child, where she pretty much saved my skin. So ya know, she’s family.

So, friends. We need a name. It needs to be a really good name.

I have one in mind, but I want to peruse all of the options.

We need to do Penelope proud.

Let’s talk.

Nominations are open, let the games begin! 

A Divergent Decade

Whew, friends. It’s been a DECADE.

(How often do you get to whip out THAT line, eh??)

Tomorrow is the start of 2020 and I am full of ALL the feelings - wonder, excitement, trepidation, apathy, and if I’m being frank, a wee dose of fear.

The past ten years have included the most unexpectedly life altering moments of my 36 years. Vivid memories I’d like to forget, and fuzzy memories I desperately wish I could better remember. 

Ten years ago, I could never have imagined how my life was about to change. Could not have written the prologue if you paid me. My story, like most, wrote itself and has been one heck of a thriller.

I worked everyday in a community I loved, with students whom I adored. 

I ran all the time. 

I got engaged. 

I was diagnosed with an autoimmune disease. 

I got a virus from my students that humbled my young, vibrant body to the core. 

I got married. 

I went on a honeymoon. 

I ran a half marathon. 

I wore silver, sparkly shoes every Friday. 

I was diagnosed with gastroparesis. 

I lost 30 pounds in 6 months. 

I was diagnosed as failure to thrive. 

I had surgery to place a feeding tube. 

I was told by one of the finest hospitals in the world that they couldn’t help me, and sent off to another. 

I saw a doctor who wanted me to surgically remove my stomach. 

I actually considered it. 

I flew to Minnesota, planning to stay for a week, and came home over 3 months later. 

I met and lived with the most incredible second family I could have asked for. 

I started writing.

I had a PICC line placed. 

I endured an endless litany of medical tests, ranging from painful and scarring to epically comical.

I was sent to behavior medicine when nothing else made sense.

I was genuinely thrilled to have unexpected surgery in the middle of the program, so I could escape the worst 3 weeks of my life. 

I lost my right submandibular gland.

I went back to school. 

I lost my thyroid. 

I was told I had cancer. 

I spent so much time in Minnesota in one year that I could have applied for residency. 

After spending the majority of 3 years in hospitals, I finally came home for good. 

I lost my job. 

I spent years entangled in a legal fight that made me question my faith in humanity and forever altered how I look at the world. 

I started my own company. 

I had surgery on my heart, including the “birth” of Penelope the pacemaker. 

A month later I had surgery to repair an abdominal fistula. 

I had a muscle biopsy that has since been named the “sewing experiment” for the ridiculously bad scar it left behind. 

I grew my practice. 

We bought a house. 

After seeing doctors at Johns Hopkins, Mayo Clinic, Cleveland Clinic, Georgetown, George Washington, Penn, Tufts, Brigham and Women’s, INOVA, Jefferson, Lankenau, and countless private practices, a geneticist 10 minutes away discovered 2 genetic mutations that have never been seen before. 

I got kicked out of 3 fertility clinics. 

A perinatologist wouldn’t even open my file.

My fur baby came into my life. 

I did 2 years of IVF, 150 miles away, in a veil of total secrecy. 

I got pregnant and had a shockingly delightful pregnancy. 

I gave birth to my beautiful daughter. 

I crashed and don’t remember the first few hours after her birth. 

My daughter was diagnosed with a digestive disorder that ironically didn’t come from me. 

I was diagnosed with another autoimmune disease. 

My dog was diagnosed with a digestive disorder (seriously people, can’t make this stuff up). 

I celebrated my daughter’s first birthday.

My last class of students started their senior year of high school.

I started weekly infusions when my cardiac function changed drastically. 

I spent time with my family. 

I restored my soul in the mountains. 

I laughed. A lot.

I cried.

I lost and gained and ebbed and flowed.

I endured.

And that’s just the cliff notes.

Throughout all of this, I grappled with finding acceptance and some semblance of closure. I expected myself to move on, mentally and physically, and was embarrassed that I didn’t find it that easy. More than embarrassed, I was ashamed. I wanted to move on, to close some doors, to stop feeling what I was feeling. Forget the leaf, I wanted to turn over the whole damn tree.

But, you know what?

Ten years later, I think closure may actually be a bit of an illusion. 

How can there be an end point to love and loss?

Closure would mean there is a final chapter to love and passion. There’s not. I will never stop missing the career I had. I will never stop wishing I could run again and not feel like I’m going to collapse every 5 seconds. I will never stop yearning for the ease I had to eat and travel and live my life completely at whim. I will never stop feeling these feelings because I was lucky enough to have them in the first place. Closure would mean never thinking about those years of my life and remembering not only the season of hardship, but also the season of joy. 

Yes, it may seem easier to close the door on the last decade and pretend it never happened. It would save me from reliving pain and grief and loss. But it would also prevent me from some of the most special times of my life. My marriage, which has been pushed and pulled and bent beyond comprehension, is a product of that decade. My relationship with my family has strengthened immeasurably and my friendships are ones that matter. My child - my joy-filled, shattered-glass-ceiling miracle child - is a product of that decade. Erasing the last ten years of my life would erase not only the pain, but also the happiest moments of my life.

You cannot have one without the other. If you want to close off the pain, you will also close off the joy. 

I know that now. 

If the next decade looks a lot like this one did, it will be unexpected. 

And scary. 

And my health insurance just may name a building after me. 

But you know what? 

I’d be ok.

No, not I would be ok. I will be ok. 

I’ll be ok.

Lost and Found

Heyyyyy friends.

I wrote this post weeks ago, almost posted it, then almost deleted it. 

I hemmed and hawed for days.

It’s not the picture I had hoped to paint for this season of my life. 

It felt redundant. And ridiculous. And embarrassing.

But true. 

For better or for worse, this is who I am and this is where I am - so I need to put on my brave pants and own it.

Deep breaths.

Recently Mr. Restarting my Hard Drive and I took a trip to the teacher store. He needed a few last items for his classroom and I wanted to peruse the toddler section because somehow our brand new infant has turned into a toddler (still unclear how these things happen). In retrospect I was naive to think I could just waltz on into the store like it was a normal trip to Target. It hit me like a bowling ball in the stomach. Along with the rainbow of organizers and posters and math manipulatives and folders and flashcards were the sea of teachers wandering the aisles looking for new ideas and anything they may have forgotten. It wasn’t hard to spot the veterans, who knew exactly what they needed and the brand new teachers, stocking up on absolutely everything that they likely won’t need (no, you don’t actually need 7 different shapes of post-it notes - been there). There was a line at the laminator and a mother and daughter teacher combo talked about their desk arrangements while they chose pencil holders. 

Wiping back unexpected tears, I smiled away the lump in my throat for my daughter as she gleefully pointed at every single item on the shelves and I picked out her first package of crayons.

Later that day, the tears found their way to the surface again and this time I couldn’t push them back. I’m not a crier, generally speaking, and this tidal wave of emotion nearly knocked me over. This time of year is always hard for me, but for a multitude of reasons, this year hits especially hard. 

I miss everything. 

All of it.

I miss the first day of school excitement and the pre-holiday chaos. I miss long field trips and long faculty meetings. I miss late night grading and team plannings so long we ordered pizza. I miss Bingo Night and long assemblies spent playing student roulette, moving them around in every possible way to keep the side chatter to an absolute minimum. I miss parent-teacher conferences and back to school night. I miss reading stories on the rug and celebrating birthdays and half-birthdays and dressing up in costumes for various things throughout the year. I miss wearing sparkly shoes on Fridays and attempting to wear my hair down for the first few weeks of school before giving up and wearing a ponytail for the remainder of the year. I miss setting our Monday intentions and sending out our Friday wishes. I miss working with a team, a well-oiled unit that always meant you could poke your head outside of your door and ask for coverage for a quick bathroom trip or run to the copier. I miss having someone genuinely care if I showed up for work every day. 

And the kids. Most of all, I miss the kids. Every last one of them, even the ones that pushed buttons I didn’t even know I had. I miss watching the lightbulb go on and helping kids discover their passions. I miss that moment when math finally makes sense or a book becomes readable. I even miss the moments when it didn’t quite click. I miss the stories - told in a way that only makes sense to an 8-year-old. I miss the notes. And the smiles. And the laughter.

I am surrounded by teachers. My husband is a teacher. My mom, mother-in-law, and father-in-law are all retired teachers. The vast majority of my friends are teachers. Many of my clients are teachers. And now, I’m just kind of…there. 

I have a new appreciation for the perpetually awkward, non-categorical platypus. 

I have moments where I dream about going back, where I convince myself that my body could absolutely handle it and I’ve learned to manage well enough to return. “I could teach part-time!” I tell myself, deeply convinced that my body will agree, and the mere thought brings me such light and joy. Last week I even found myself scrolling through the job postings, not planning really, but just hopefully wondering. 

The very next day my cardiologist gave me the “lovely” choice of weekly infusions at the hospital or another surgery, and asked me how I was adjusting to a new medication - the one prescribed for the brand new autoimmune disease I recently added to my acumen. 

Woof. 

A proverbial throat punch and heavy dose of reality. Just like that, a bubble of a daydream popped.

This beginning of the school year pain is not new, nor did I just leave the classroom recently. If you’re sick of hearing about it and think I should be over it, I don’t blame you. I even agree. 

But I’m not.

Truth be told, I’m not sure I ever will be. And the real question is - how do I live with that? 

How do I make peace with myself and my future, knowing i’ll never get to do what I planned and prepared and worked for? How do I find new meaning when the career where I felt like the very best version of myself is simply not there? When the one thing that I felt I did fairly well is gone…what then? And how, I ask you, HOW do I really, truly, finally move forward?

I have the most perfect, fabulous, joyfully hilarious little miracle. I am truly grateful to spend pretty much every waking hour together. It’s like having a constant sidekick who not only tolerates your spontaneous need to break into song and dance, but requests it. Fifteen months in and I still don’t believe she is mine. I built a business from scratch and it is a true honor to walk beside my clients as they navigate new waters of health and happiness. I have the very best fur baby in all the land (just try to find a better one, I dare you) and a husband who has traveled through the uncertainty of the last 9 years by my side. My family is far and away my favorite group of people in the world and I won the lottery with my friends. I have a roof over my head and food on the table. 

I am truly, deeply, abundantly blessed and have more to be grateful for than I could ever adequately convey.

So…why? How can a person have SO much, and still feel so lost?

Grief and loss are most certainly not linear, and it’s no surprise to anyone that it will grow and change with time. Over the years I have certainly ridden the waves as they came, but truth be told there is one emotion that really has never registered until now.

I’m not an angry person. In fact, I tend to sense confrontation of any sort and run far, FAR away. As a highly sensitive person to a T, I am hugely uncomfortable with other people’s discontent and disagreements, and something like a healthy debate, even among friends, is enough to make my palms sweat. This feeling is so foreign that it took me some time to really register what it was that I was feeling, and longer still to figure out why I felt it. I’m still not sure I want to accept it, but writing it down is a start.

People, I’m pissed. 

No, I’m downright furious. 

I’ve spent a lot (a LOT) of time in reflection on what changed, which is funny to me because it should have been incredibly obvious. What changed was that my life no longer belongs to me alone - a gift I never thought I’d have, but one that comes with more than I expected. I did not expect to have to turn down a fun toddler music class because it’s the same time as my weekly infusions. I did not expect to be bragging to my husband about how much of a rockstar our daughter is when I go in for blood draws. I did not expect to be completely isolated from a community and not know a single local soul with a child her age. I did not expect to have the people we talk to the most be so far away that my daughter recognizes them the most on a FaceTime screen. I did not expect the look of confusion and sadness when my daughter offers me a bite of her food and I can’t eat it.

I did not expect to be angry on her behalf. 

Yes, I am acutely aware that by no longer being in the classroom, I am able to be home with my daughter and spend this time together. Yes, I am very aware of that gift and I know I would be missing her desperately if we weren’t together. But I also know that this isn’t the life I wanted for her. A life spent being shuttled around to my appointments and navigating naps and meals and dog walks while working two jobs without childcare.

It’s not what I wanted for me, but it’s most definitely not what I wanted for her.

But here we are.

Writing to me has been cathartic over the years, a place where I turn when I don’t know what else to do. Oftentimes, I find myself sitting down to write because I inherently know I need to…but don’t even really know what’s going to come out. This particular post has been three-fourths finished for a few weeks. A story suspended in mid-air, waiting for resolution. 

Back in January, a client and friend had given me a calendar all about happiness - one of my favorite topics. It’s full of quotes and sunshine and fun little to do lists and when I ripped off the page this week, I felt an ease in my shoulders and a wave of contentment just reading the words. 

I am more lost now than I have ever been. 

I am lost and sad and lonely and even a little angry. 

And try as I might, I can’t sing and dance and smile those feelings away.

I’ve been lost for a long time. Longer than I’d like to admit.

Many times it feels like two steps forward and not one, but two full steps back. 

I can only hope that someday it won’t.

For my daughter, I have to believe that it won’t. 

She deserves that. She deserves everything. 

I don’t know how long it will take, and I definitely don’t know what it will take to finally put the life I planned in the rearview mirror.

I hope someday I do.

Turns out there is one good thing about getting lost - the belief that someday you just might be found.

This is Me

Oh heyyyyy friends! It’s been a hot minute or two, or ten.

I’ve had so much to talk about, but the words didn’t come. So many thoughts just stuck in their holding pen. Much like standing in front of the open refrigerator and expecting the perfect snack to just magically appear in your hands, turns out you actually have to write to get the words from your head to your hands. Who knew?

And then it finally happened. And the words came.

For Christmas, my mom gave me a page-a-day calendar of inspiring women. 365 days of quotes, tidbits and fascinating knowledge about women, women and only women. 

Needless to say, it’s wonderful.

When I stumble into my office at 5:30 in the morning, I am greeted by the day’s nugget of knowledge. A few weeks ago, the page stopped me in my tracks.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it.” Brene Brown, “The Power of Vulnerability” (TED talk)

In fairness, all things Brene generally stop me in my tracks. If you aren’t familiar, do yourself a favor and pull her up on YouTube STAT. But this one really resonated and I’ve been noodling this quote ever since, mulling it over in my mind ad nauseam, trying to decide why it struck such a deep chord.

I have shared my story openly and willingly, using writing as a way to process and heal through the thickest of plot twists. And yet there has always been something missing. Not the nitty-gritty details or the overall narrative. Not the emotional roller coaster of a life spent in medical limbo. 

I think while I have shared my story with others, along the way I somehow lost contact with sharing it with myself. I’ve spent so much energy trying to normalize myself to fit into a mold that doesn’t even exist anymore and running from this harsh reality. Facing it was far too large a pill to swallow.

And yet, here we are.

I have both accepted and absolutely not accepted that the way my life is now is the way it will be forever. I strive every day to defy the odds and I plan to continue to hike my own path, but there is also that place deep down in the dark recesses of my brain that quietly whispers - is this really it? Forever?

I desperately want to travel and see the world. I itch endlessly for adventure. Yet so much of how we immerse ourselves in a culture starts with food. It demands endurance and a functioning immune system and a brain that sends signals everywhere it needs to. I want to bike through Tuscany and stand under the Eiffel Tower in Paris. I want to meet my giraffe relatives on a safari in Africa and spend time with the tortoises in the Galapagos. I want to go to Ireland with my husband to find his relatives and see the sparkling blue water in Vancouver. But how can I enjoy a fresh scoop of gelato in Rome or a bite of spanakopita in Greece, if an accidental milk mishap at a coffee shop recently had me running to the bathroom for days? How can I hike through Switzerland (“Sound of Music” style, of course) if some days I get dizzy walking up my own stairs?

Will I continue to sit at my dining room table and type words into a machine, while the rest of the world keeps turning, for the rest of my life? Is this really…it?

I have images in my head that are equal parts sobering and hilarious of me hobbling down the halls of a retirement community to meet my friends for mah jong, and toting my trusty lunchbox because the dining room doesn’t offer a baked sweet potato and avocado. 

50 years from now, will I still order a tea just so I’ve ordered something?

These questions have always been there, but somehow I was able to keep them penned in a safe, pad-locked box in my mind. Acknowledging their existence but not giving them the power to speak above a whisper. But then things changed.

10 months ago I had a daughter. She is the very best thing I have ever done with my life, and I still marvel each and every day that she is actually mine. Despite the fact that I grew her and pushed her out into the world, I still don’t at all believe it. (Possibly because the first few hours after her birth are a total and utter medical haze mystery…regardless, I got nothing). I could talk about her for weeks and it wouldn’t even begin to tell the world everything I want to say about her. How her smile lights up every cell in my body. How after she goes to bed, I look through pictures from the day because I miss her.

For 9 years I’ve been in and out of hospitals, sliced and diced so many times that I run out of spaces on medical forms that ask for a surgical history. Each time falling into a drug induced slumber and waking up disoriented and in pain. Each time leaving with a laundry list of post op instructions, drains, stitches and empty spaces where organs once lived. 

Do you know what I left with this time?

A duffel bag of mesh underwear, a sitz bath, and my daughter. 

That’s all you really need to know.

I detest the phrase “everything happens for a reason” with pretty much every fiber of my being, but I do think life has a way of handing us what we need, when we need it, IF we are available to see it. 

After moving heaven and earth to avoid passing along my genetic mutations, my daughter came into this world with a gastrointestinal condition from the other side of her genetics. Hilarious, universe, soooo hilarious. 

She will grow out of it, and is perfectly healthy and happy with the proper management and changes to both of our diets, but had my life not turned out the way it has, I’m not sure I would have been mentally prepared to look a server in the eye and ask for a gluten-dairy-soy-egg-oat-tree nut-peanut-fish-legume-free, low residue, vegetarian meal and expect a straight face. I don’t think I would have known how to navigate physical therapy and feeding therapy and specialist appointments and insurance coverage.

Life has a certain way of rewriting your story.

But while I am exceptionally grateful for the wisdom of life experiences, how will I explain…me, someday? What will I tell her when I have to get a new pacemaker when she is 7. And 17. And 27. And, God willing, so on and so forth?

What will she think of the web of scars that cover my body? 

Will she care about my past at all? Will I be…a burden?

I’ve been out of the classroom for 8 years and still miss it every single day. Every. Single. Day. Which somehow seems embarrassing to me, like I should magically just get over the expectation hangover that the career I always planned on is no longer mine and more than likely never will be. It’s been long enough that people no longer identify me as a teacher, and I wish that didn’t sting, but it does. I’m an ambivert through and through, who needs time alone to charge my battery, but also time with people to charge my soul. Working two jobs from home with a 10 month old and a furry mascot has its perks, but sanity and community are not on that list. Loneliness and exhaustion are not hats I wear well in tandem, the combination leaving me with far too much time alone with my once restrained thoughts. I’m learning, in this new season of life, to find peace with those thoughts, and learning takes time.

My story is messy and unexpected and complicated, and yet has taken me places I never would have imagined and introduced me to people I never would have met. My daughter is a product of that story and a chapter I cannot imagine my life without. I can no longer run from my story, if she is in it, and truth be told - I don’t want to.

It is uncomfortable to let these questions wash over me in waves. It’s painful and scary to be reminded that my life has not played out like I planned, and my future is a big fat question mark. In this season of life, I am both blissfully happy and desperately lonely, and that needs to be ok. Some days the waves nearly topple me over, and others they just lap gently at my feet. I can fight it, or I can surrender to the best of my ability and ride the tides as they change. 

Owning my story is hard. Owning my fears and uncertainties and scariest questions is impossibly difficult, but it's time for me to rise up and make peace with the relentless current. After all, sometimes deep within the waves, you find the most precious, perfect pearl.