We met with the surgeon for Meghan’s follow-up visit yesterday. He was so pleased with her, and with how incredibly hard she is working to recover. He is amazing, her orthopedic surgeon. He is humble, skilled, and focused, yet he speaks directly to her, meeting her questions with sincerity and validating her in ways that are literally life-changing.
You can go ahead and read that again. Validating her in ways that are life-changing. I use words to express myself and to tell our story, but I had gone largely quiet for a long stretch. You run out of words to reiterate pain. You run out of ways to explain to people that she is not better. You end up in a place where you are essentially making apologies for the discomfort your situation causes other people. You find yourself hiding.
There had been medication trials, embolizations and cryoablations, and an angiogram to attack this tumor. There was some lessening of the pain, but no relief for any real time. The pain always came back with a vengeance.
She stepped away from one thing after another in her life. Who can socialize in pain like that? Walking was excruciating, and driving was a formidable task since even sitting was painful. The pain wrapped her up in a tight ball. It mangled her hopes and messed with her dreams. It left her physically ill and a shell of herself. She put every ounce she had into maintaining her grades and surviving. People, some patronizing and some incredibly well-meaning suggested everything from her “just being depressed” to her being dramatic, to her needing to just push more. I’m confident not a single one could have managed an hour in the body she was dealing with.
When we went to see this doctor in mid-May (he’s been in the rotation since about 2015 and has done a few of her knee surgeries so we are not strangers) I expected he’d prescribe Ibuprofen and send her on her way. Instead, he sat at the MRI images on his screen and described the debilitating pain that the images he was seeing must be causing. He talked in detail of numbness, burning, pain with any movement, muscle spasms that this thing must cause… it was like listening to someone else tell me all the things she had been saying, and sometimes pleading with anyone to listen to. Validating her in ways that are life-changing. There is a power in being believed that cannot be understated.
The decision to remove this tumor was not arrived at easily. As a matter of fact, in 2019 we were told it was essentially inoperable as he would need to open close to 10 inches of her leg. The tumor at that point was 5.5cm. We needed the embolizations and the cryoablations to shrink it. And they did. But, they also left behind little pellets from the embolizations, and excessive scarring from the cryablations. That sent the pain into high gear as her body has never taken kindly to ANYTHING extra, however, those necessary steps took the tumor down to just under 2cm. But every time there was a surgery and she didn’t feel better she felt like a failure. My girl doesn’t like to fail at anything.
This time it looks like we are finally on the right path. The 2 square inches of muscle hollowed out of her leg included all sorts of things that just like Meghan, “don’t fit in a box.” But by removing them, and getting a clear margin on this benign tumor, the surgeon was able to close her 4-inch opening from the femur back up to the skin and leave only healthy tissue behind to do its thing.
The days following her surgery are chronicled in the last few posts, and etched permanently in my soul.
But there has been progress. There is a fresh new Physical Therapist who is working hard to ensure that the scar tissue Meghan’s body loves to overgrow does not get out of hand. There is an increased range of motion. She can walk some distances unassisted on her best days. On the others, she’s furniture-dependent, but we’ll take it.
There are still muscle relaxants, but less of them. Some days the Advil is at 400mg doses and other days 800mg. She started sleeping in her own bed (upstairs) this week! 🙂
Some days are better and some days really stink. There are ups and downs. There is Physical Therapy three times a week. There is the EMT course three nights a week that she, by her grit and raw determination is still making happen.
So I leave you with this progress note. And thanks to those of you who have consistently checked in and followed us through this dark time. There is nothing like sitting in the depths of despair to shed clarity on who your people truly are.
We got home from the hospital late Friday of last week. After 5 days and 4 nights-her longest hospital stay since she was a toddler, we trekked from Long Island to Staten Island, a 35-mile journey that even at a carefully selected 8PM still took us 90 minutes.
I’m certain we were navigated through every single pothole on the traffic-filled trip. I dodged every self-absorbed speeding lunatic while doing my best to keep from jostling the car too much. I teetered between fervent prayer and fierce anger that I took out in a few temper tantrums at my steering wheel. My knuckles were white (and a little bruised) when we finally arrived home.
While we got her washed off, and I took the most necessary shower of my life, I let a few things sink in.
The week began to replay in my mind and I started to grasp the gravity of what we were in the middle of.
Somewhere between The Waiting Place and Agony I left out that incident in the recovery room. The one after she woke up screaming, they gave her some IV pain medication and something happened. Her monitors are never comforting, as something is always beeping, but I instinctively got Ella out of the way as I watched her oxygen saturation start to dive and hit the 70s. Four of the most authoritative badass women I’ve ever seen moved in a way that assured me they had done this before. They had the oxygen out and there was water and something about making it moist. To be honest I don’t care enough to even look it up. All I know is within seconds of them arriving things went back in the right direction. She slept for another few hours in an oxygen mask and I stared at that monitor like it was my job. That entire incident could not have been more than 30 seconds – but I can tell you everything about that tiny area in the post-op unit. I can feel myself standing there… watching… terrified.
It wasn’t the first scary thing that happened.
The amount of narcotics it took to keep the pain at bay was flat-out disturbing. That, combined with a baseline of POTS which keeps her blood pressure often low and her heart rate often high, caused chaos every single time someone came in to take her vitals. My notes have her 6/5 early AM pressures at 68/37, 74/41… her high that day came in at 91/57. This meant that every single time someone came in, the patient care aide would take the pressure twice. Then they would look very concerned. And when her pulse ox showed at a very unimpressive 94-96 they would get the nurse. The nurse would then take her pressure and page the doctor/ and or the pain management team. Ultimately they would wake her, shake their heads, and repeat the same cycle. Every 4 hours. For days.
There is no solid reason yet as to why her pressures were so low. Like so many other things in Meghan’s life, eventually, people just shrug their shoulders.
That hospital room, with the hum of machines alternating with wails of pain, it was a lot. And I was happy to wash some of it off in that shower.
It is good I can recover quickly after a shower because I am glad I was awake when I set up to review the 7 medications we left the hospital with. It was at that moment I processed why the nurse had asked me if I knew how to use Narcan. I had answered her so matter of factly, she must’ve thought I knew more than what I had seen on a random television show, and she was comfortable when I said “one spray up each nostril.” I guess I was in a haze. I remember asking if it could hurt her, and she said, when in doubt give it. Like the EpiPen training we get annually at my elementary school I had thought, trying to normalize the fact that I was about to drive 90 minutes with my child so drugged up that I was now carrying medicine in case of an overdose.
I laid everything out by my computer and did what I always do when I’m nervous… I organized it into a table. This was likely the most important table of my life. I felt alarmingly unqualified and flat-out terrified.
It didn’t stay nearly this neat as I planned out how to alternate prescription acetaminophen with ibuprofen while separating hydromorphone (every 4 hours) with diazepam (every 6 hours) by at least an hour because both can lower her already low blood pressure. That’s where the Narcan came in. The methocarbamol was for breakthrough muscle spasms but no more than every 12 hours. The Zofran… well because narcotics and nausea…
The first few nights there was something at least every 2 hours. I got into an every 3 hour routine soon after but it definitely was the worst math word problem I have ever solved.
Every simple task was a hurdle. Walking on the crutches when she was so drugged up was flat-out dangerous. Laying on her back with a 3-inch incision on the back of her thigh was virtually impossible. Sitting was not an option as the hip is not allowed to go to a 90-degree angle. The brace created to help with the hip was a poorly designed disaster. But, in fairness, this tumor was rather uncommon.
These last two weeks have left me speechless more times than I care to count.
The day after we got home when I went through the mail, the formal denial of any post-operative stay arrived at my house. Years of experience with this caused me to barely flinch. I three-hole punched and filed it. Today in the mail came this notice, the one they sent after reviewing her POST operative file. If you have any history with hospitals you know this speaks VOLUMES…
Sometimes in the night when she is asleep next to me in the bed, I just stare in awe of all she has endured and continues to endure. I pray for guidance to keep her heart soft and her will strong. I talk to every single angel we have and beg them for signs they are watching.
And then, when I still can’t sleep I remember that her story, this crazy, often flat-out unfair and unreal story will somewhere in her future serve her as she brings her whole life of experiences with her into her own professional life as a physician assistant.
There is increasing time between the terrifying spasms. That’s what I’ve got for today. That and some photos of a really cute Ella who kicked some major butt for 5 days and 4 nights… yeppp she stayed with us!
Somewhere in the middle of Tuesday night when they were pulling blood pressures like 68/37 I started to adjust my head that we were not headed home Wednesday. I had hoped, planned and packed for Wednesday, but it was to be another “tuck and roll” kind of experience.
Overnight Tuesday was a different world from Monday. It was not because the pain was gone by any means, but because the pain care team here worked until they got her to a place where she could rest. You can’t heal if you can’t rest.
The problem with all these meds is many tend to lower blood pressure. Her’s runs low anyway. Those two things combined together to create a bunch of nervous PCAs, a whole lot of “redo” action by the nursing staff, and a bunch of pages to ortho and pain management. The good thing is she slept through most of that.
Over the last few days we have pieced together where a lot of the ancillary pain is coming from. Monday’s surgery was over 3 hours and had to be done with her face down. The bruising thought her chest area is extensive, and the numbness on the front of her legs can be attributed to this. Those things are likely to fade away well before the leg.
The leg though…
This surgery, although we knew it might be coming, kind of snuck up on both of us the week after Meghan arrived home from the semester.
This leg, and especially this tumor had been causing her grief since 2019. At the time she asked the orthopedic surgeon, who has been a regular part of her team since 2016, for an MRI of her upper leg. He agreed because anyone who knows Meghan more then 5 minutes understands that she knows her body, and something there was giving her grief.
When the scan was reviewed and the doctor started to brace us for an unusual finding, I remember Meghan saying, something to the effect of ‘Thank God you see it.’ As she showed him with her finger exactly where this beast was buried in her thigh. He was impressed that she was so on point as he verified with the MRI images, but not surprised. She was grateful for the validation that she was feeling a real “thing.”
The next few years we tried everything to get at this beast. First we tried ignoring it. Then we scanned. Then it grew. We asked about removal and were cautioned that it would be akin to “filleting” her thigh through a huge open incision. That was definitely not choice one.
By the summer of 2021 as she was preparing to leave for college, she had reached a place where this precariously placed tumor (in between the femur and the sciatic nerve) could no longer be ignored. We got a hematologist with an interest in vascular malformations to see her virtually the week she was leaving. She headed off to college with a script for lyrica. We tried to go slowly but relief wasn’t coming easily. Still, she did her best to do the things college students do, for better or for worse.
She is the epitome of, ‘Those who say it can’t be done should move over for the people getting it done.’
That year was for studying and for swimming and for trying to titrate a dose of this drug. It would likely not have mattered if it was a magic bullet (it was not) the side effects were just too much and by 2022 it was ditched and there was s new plan and a new interventional radiologist.
In 2022 and in 2023 – he worked to shrink this beast with cryoablation.
It shrunk the tumor a solid amount- by more than half.
But the pain. It has proliferated every aspect of her day to day existence. It is hard to know – until you know. Chronic pain changes you. This beast got in the way of anything that required too much moving, sitting, or just about anything else. It’s hard to be 20. It’s harder when you are trying to relate to people who don’t need pain meds just to exist. It’s like you’re side by side with them speaking two totally different languages. At some point you either learn the other language or move on. Very few people are fluent in pain.
This transition Meghan and I are working on, where I am trying to transition her into primary responsibility for her care, it is a delicate one. This year was difficult for Meghan for so many reasons, but the reason swallowing her up was the pain. I knew the call would come, and it did.
She called and asked me to schedule and MRI – just to see what was happening. She was stating that another cryoablation was not the path she would go, but she reached out to her interventional radiologist to try to troubleshoot the images. From his lens the tumor was markedly smaller, decreased by almost 2/3 from its original 4.5cm. He could not figure out why her pain was so much worse. He called and spoke with the orthopedic surgeon.
We got word that we should head to ortho to review his thoughts on the most recent images. We were expecting advil 800. He led with – Let’s get it out of there.
Tuck. And. Roll.
When it was almost 5cm he dared not touch it. Now at its current size he thought he could get it. One of the smartest men we will ever meet stared at her MRI images and described the constant pain caused by the location of this ugly beast. HE said to her, all the things SHE has been saying. He said that is in a terrible spot, between the femur and the nerve. He spoke of his access to nerve monitoring technology to ensure the motor nerves were not damaged. HE said she won’t feel relief until it’s gone and cryoablation took us as far as it could. I swallowed hard.
I knew at some point she’d need to let him try. Too many things stood to get BETTER if she got THROUGH to the other side. The surgery now on a markedly smaller tumor was going to require a smaller incision and made it seem attainable.
And before I knew it the surgery date of June 3rd was set.
The only way out is through.
So here we are. Night 3 in the hospital. Another additional dose (on top of her heavy regimen) just got administered as the pain started to creep out of control again.
She needs to move before she can go home. She knows. She needs to move because it is just better for you. She know this too. And she will, but she can’t yet.
There is no frame of reference for this surgery. It’s nothing typical. There is nothing to base the experience on. Just Meghan. We have to let her body lead.
Occupational Therapy got us through a wardrobe change and a move to the chair in the room.It was a 20 minute session of activity. The muscle spasms on the back end of that, would have been enough to make me want to stay still forever.
But tomorrow she will move again. Residents and rounds and PT and OT will visit. The pain care team will come too. What I’m almost certain will not come are our discharge papers. And that is ok. As much as I am desperate to leave, I can not take her home too soon. There are times in our lives where we have to tuck and roll. These times are no strangers to us.
On Monday the surgeon dug in, literally to the bone and extracted two inches of muscle along with this tumor beast.The hope is that once this very ugly painful time passes, that maybe the tumor pain, and the chronic sciatica, and all the other ugly after effects of this beast will go too.
But,not today. And not tomorrow. I am trying my hardest to trust the process….
I am working on managing expectations. My goal is to find a sweet spot in this parent recliner…
The last of the dilaudin is in. That is my clue to close my eyes….
Remember that killer headache you had last week? Or the time you fell off your bike? Or the day you slammed your finger in the door? What about the time you had a gallbladder attack and you ended up in surgery? Remember your most painful experience. Think about how it consumed you, and how hard it was to get through. Think about the people who cared for you and how glad you were when you were past it.
Remember the support you received after your injury/ surgery/ accident. Remember those people checking in on you and encouraging you. I bet if you think about it, one of the things that carried you through was knowing it would pass. No matter how dark it got, you knew that one day, with rest and medication and therapy and support you would feel better again.
But what if the pain never went away? What if there was always a residual pain, just present enough to occupy precious space in your mind 24/7/365?
I was, yesterday years old when my almost 20-year-old said something I don’t think I had ever really given much thought to. She said some people have no pain. I think I struggled to process what she was saying. So she said it again. To be honest the thought of having no pain was kind of mind-blowing to me. She and I both deal with pain, pretty much all the time. I think maybe it has been easier for me to deal with because I never realized or gave much thought to the fact that this is not the same for everyone.
Chronic pain is treated like a dirty little secret. You can’t talk too much about it. It is a buzz kill. It makes a room heavy. It makes people uncomfortable because even the most well-intentioned people do not know what to say or do. And if your chronic pain lasts, well, forever, talking about it is frowned upon. Talking about it can also generate unsolicited advice, “cures,” and shame. Many people cannot imagine that some bodies hurt. All the time. No matter what you do. So they resort to blaming the person who hurts. It must be their fault. They must be lazy, stressed, overweight, have poor eating habits, lack exercise, or they should just “relax.” It must somehow be their fault.
Blaming the sick person is a protection we use. I have done it. I think we all have. We often do it because we are glad it is not us who is sick or in pain. We want some concrete intellectual assurance that it can’t/ won’t be us. So, when you have chronic migraines, and someone asks you why you haven’t found your triggers yet, or when you have joint pain, and you get told to stretch and strengthen, or when your stomach pain is met with “calm down, it’s just stress…” someone is trying to make sense of what you are feeling. In this society, we want a pill or a medication or an easy repair. They are trying to “fix” it, but in doing so often the person in pain is now left also feeling like a failure.
And that patient blaming is not limited to colleagues, friends, and family. Patient blaming is on fire in the medical community. While some practitioners understand that most people do NOT want to spend their whole lives at the doctor, there are others who will find every reason in the world to make you believe you are a depressed, pill-seeking fool.
So those who endure/ survive/ function with chronic pain start to feel like they have a dirty little secret. They feel the pain is their fault and they have something to hide. They feel burdened by this pain that is involved in every single thought and every single move. All day. Every day.
Imagine a song you hate so much. Now imagine that song playing in your ear. All the time. When you try to sleep – it’s there. Taking a shower – it’s there. At work – still there. Out to dinner – yep, still there. The volume button broke. The song is stuck in a loop. It is just enough to keep you distracted but not loud enough for anyone else to hear.
The first few times, you tell someone it’s there. It’s loud. It is annoying. It is hard to concentrate. At some point people tire of hearing this, and tell you to get it fixed, or get over it. They can not even hear the song, but the thought of you mentioning it gets them twisted. So, you stop talking about it. But it NEVER STOPS PLAYING.
So, being aware that you need to do herculean things in a body that has the strength of a sloth, you press on.
You go to school. You meet up with friends. You go to work. You make polite small talk. You pursue career goals. Because you know that we only get one chance at this life and you don’t want to miss it.
And you bargain with yourself. You make little deals along the way with this body that has this terrible song playing so loud that a chunk of your focus is off, and everything you do is just harder than it should be.
You try so many things to get better. But you don’t talk about them. Because hearing someone tell you what should have made you better by now, or listening to the stigma of many alternative treatments has you wiped out and on the defensive. You don’t need to explain. You don’t want to be scammed, or judged. You just want to feel better.
While you are pressing forward, using every ounce of strength that you have to complete daily tasks, it is easy to pull away, even from those closest to you.
It can be so hard to be appropriately sympathetic to a skinned knee when the thought of amputating your most troublesome appendage crosses your mind at least every few days. Your rational mind knows the skinned knee in fact does hurt. Somewhere in the chasm between “I wish someone understood me” and “I want to be a generally decent and kind human” you find the words to say that you hope that skinned knee heals quickly.
Hope. It is the most powerful weapon we have. And sometimes we have to dig it up and polish it off and look at it for a long time. Sometimes we are afraid to dare to hope because we have been disappointed so many times before. But, hope. Hope is everything.
So what can you do if you love someone with chronic pain? How can you relieve some of the burden of this dirty little secret?
Some tips? Remember that it is there. All the time.
Be available for a hug if they want it.
Be encouraging but not patronizing. Use empathy over sympathy. And nudge them forward.
Don’t try to fix it. You can’t. If you could they would have already done it.
Sometimes quiet proximity is the best thing in the world. Being “alone together” can be reassuring.
Believe that they will do all they can when they can.
Don’t stop making plans, but be flexible whenever you can. Pain levels are not on a schedule.
It is hard to be in pain. It can be torture to watch the person you love in pain. By the way, they know how tough it is on you. It is why they worry so much. They have been abandoned before for being “too much” and they don’t want you to go too.
Show your person you want to stay. Show them that despite the dark times, their light is something spectacular you want in your life forever.
It is ok to remind them sometimes that they are a total badass. It’s not a title they were seeking, but it is well-earned all the same.
Cowden Syndrome in and of itself does not cause chronic pain. But, the ramifications of living a life of it, well that can. In our house, we stay active. We stay healthy. We go to work. We go to school. We pray and laugh and love each other. Together. In this house, we know that great things are possible even in the midst of relentless physical pain.
We have goals and we will succeed. So if you see us sitting on the bench, don’t count us out.
We remain….
…#beatingcowdens
This topic has been on our minds this summer. Send us your thoughts on chronic pain. We’re especially interested in the best and worst things people have said to you or a loved one in pain.
Meghan and I on our best days will always choose ‘Joy!’
That is hands down my least favorite question. It is one that puts my head in places I’d rather it not go. I believe very much that a positive mindset can have a positive impact on your mental and physical health. Do not ever confuse that with the Toxic Positivity that I ABHOR. They are not one in the same. That being said, my trips to dark mental places typically begin with “What if…?”
So of late, I’ve presented myself with the challenge of “What if it all works out?”
October 2021
When I last wrote Meghan was in the recovery phase of a layered procedure to address a precariously placed vascular malformation in her upper thigh. And, while she is not pain-free, the crippling nerve pain that had started to occupy every hour of every day has faded to black. This pain is different. And maybe for those who have not lived her life, it would be too much. But anything is better than that nerve pain. Anything. She will have an MRI/MRA to check the status of the surgical site in August.
She has been fully weaned off the Lyrica, a drug that was doing its job on the pain but doing an ugly number on her physical and mental well-being. Her thyroid meds have been raised. The muscle relaxant is much lower. And she is starting to have some mental clarity back. She has begun walking, a few miles at a time to get her physical strength back and to give some muscle back to the leg that was just too painful to do much with.
She set a goal. She wants to run a 5K. To some that may not seem like a big deal, but this girl was told at the age of 8 that she could not run. At all. She had to quit soccer. She had to drop dance. She could not join track even though she longed to run. She landed in the pool because it was all she had left. For her, it is an epic goal. This week she got the blessing of her orthopedist to go for it. Slowly. She is hoping to be ready this fall.
What if it all works out?
Don’t worry. We are not delusional. We know the long and windy road will continue before us forever. We know that we often have to pause at the rest stations along the way. We even know that sometimes we have to pause at DIFFERENT rest stations, because she is not me, and I am not her, and we each handle the struggles that come at us differently.
We have not forgotten about this, which we will carry forever.
But, what if it all works out?
I am overwhelmed by appointments on the regular. I am sometimes downright angry that so much of our life is punctuated by traffic and travel. Not to beaches or parties, but to doctors and hospitals. I am sometimes totally twisted that there seems to be no time to breathe and that “regular people” appointments, job issues, car trouble, and nonsense seem to come at us like sideways hail in a storm where the umbrella is inside out and useless. I hide from those I love, unable to repeat the same story over and over like an old and worn record.
But I listen. And I hear. I remember. I know of sick parents and terminal illnesses. I know of cancer battles, aging struggles, and injuries. I pray for families whose children are frighteningly ill. And my heart aches for friends who have buried their children.
What if it all works out?
There is a chance. There is always a chance. That we will screen and scan and bob and weave the worst of what Cowden Syndrome has to offer. My girl, despite her obstacles, has an impressive GPA, a relationship where they treat each other with incredible respect, a career path on the horizon, and life goals to make this world a better place.
What if it all works out?
This week we had appointments two days in a row. 35 miles, roughly 2-2.5 hours each way to Long Island. One was to her favorite orthopedist who never leads us wrong. He wants hand therapy for the healing fractured scaphoid (just “regular stuff” finding its way…) if we can manage it. And, he wants to see her again before school starts in August.
The next day we went to see a Pediatric Rehabilitation and Medicine doctor. We met him as part of the “new team” in December and he was brought on to address issues of pain. In December we could not change anything about the pain management as the goal had to be to survive until the procedure in May.
However, we were both intrigued enough to want to hear what he had to say when things settled a bit. Literally the only opening the entire summer was a 2:30 on 7/7. We arrived after a ridiculous drive and he did not disappoint. In this day and age, a doctor who is covered by insurance and takes an hour or more with you while LISTENING is unheard of.
More miraculous for us, is when issues of chronic pain and a generally overloaded sensory system were brought up, they were met with concrete medical validation, complete with images of the brains of patients with similar struggles. He met Meghan where she was and had a thorough discussion with her, appreciating that she had enough knowledge after a grueling year in Anatomy and Physiology to talk to her on her level.
What if it all works out?
It’s tough to be a teenager. It is exponentially tougher to be a teen whose life is filled with so much pain and medical drama. It is the worst to be a teen when you have lived through and endured more than most adults, and those same adults discount your reality, your pain, and your experiences. It is rare and refreshing when a doctor does not. Apparently, there are a few on Long Island that are worth the Belt Parkway.
He was able to validate what she knew. That she can FEEL everything in her body with abnormal acuity. But he didn’t throw a drug at her, he took notes and kept her talking. Then, when he had a suggestion for a medication to trade out, not add on, and potentially eliminate two and add one, he still wasn’t done. I’m not sure which one of us brought up her purple feet as she had been sitting in sandals for almost an hour on an exam table, but that sparked another conversation. I listened as he asked questions on a list I had been checking off for years. I smiled behind my mask, not because I was glad about what he was going to say, but because it made sense and he was LISTENING.
This is the same doctor who questioned her diagnosis of Hypermobile Ehlers Danlos because it did not feel quite right to him. After a lengthy conversation including all the right questions, and some heart rate checks he said “POTS.”
Postural Orthostatic Tachycardia Syndrome, brought so much clarity for her. Especially in the middle of a week-long hardcore battle with her stomach.
And finally, there was potentially explained everything from her heat intolerance to the painfully twitchy foot that sometimes drives her mad, and everything in between.
What if it all works out?
Why am I not flipped out by this? Because nothing changed. All the symptoms she was having in the office on Thursday have been with her in varying degrees for her whole life. And, truth be told, many I recognized in myself. All that happens with a diagnosis, a label, if you take it for what it is, is that you are validated. Finally. And in this life, it matters. And maybe from this, and switching a few medications around and changing a few things, she will be able to go even further, and do EVEN MORE.
Doctors who work with you, teach you to maximize what your body CAN do. And since Cowden Syndrome is not a disease for the faint of heart, we need all the strength we can get to keep moving forward. Our doctors are mostly a “guide on the side.” They are there to provide scans, medication, and sometimes procedures. But, mostly they are who we need to teach us how to maximize our lives in these bodies. They are to help us never feel weak, less than, or incapable. When they do their jobs right they are to explain and empower.
Meghan has her first GI screen this week. On Tuesday there will be a colonoscopy/endoscopy baseline. It comes at a good time because that stomach has been in a FOUL mood this last week. And we are hopeful that it shows, as GiGi used to say, “A whole lot of nothing!” And then, maybe we will take a break for a week or so and put the doctors on pause.
For today, I come to you from a place of “What if it all works out?” A place of gratitude, grace, and grit.
I am a messy hair, no make-up, living on grace, making-it-up-as-I-go-along loner. I am not ignoring you. I am busy seeking joy on the Belt Parkway and the BQE, and believe me when I tell you, that is a full-time job!
I cried this weekend. Not just the tears down your face from a sad movie cry, but the gut-wrenching sobbing cry that leaves your head pounding and your eyes swollen shut. And, it wasn’t just once. It was at least three separate times, and the weekend isn’t over yet.
I wasn’t going to write about it. I mean nothing specifically terrible happened. As a matter of fact, I drove 130 miles each way to watch my girl swim this weekend, and to give a little love to my second best girl, Ella.
I could have stayed in those stands forever. It was the place I felt the most purpose, and a heart full of pride. She has swimming goals. But my mom goals for her have already been exceeded. There are kind teammates, friends who laugh together. There is a boyfriend, and a best friend, just attentive enough that I know they have her back, and Ella’s too. School is exactly as hard as it should be, and she landed comfortably on the Dean’s List, far exceeding my own first semester.
But the weekend wasn’t all there. And truth be told there are entire weeks that have to happen before the weekend.
I was in the middle of ugly cry three this afternoon when it crossed my mind it was time to write.
I started this blog almost ten years ago with the promise to myself, and to Meghan that I would, with reasonable privacy precautions in place, record a “real” story of life with Cowden Syndrome. At least, our real story. Over the last ten years, I have come to “know” too many amazing families that each deal with their own real story. I have laughed and cried and prayed over miles and continents and oceans with so many of them. There are not two of our stories that are the same. Yet, they all have value. And if ours is the story chronicled here, I deplete its value by hiding the fact that I ugly cry.
I have been repeatedly humbled by the number of people who reach out to me and thank me for telling our story. I often wonder why people even read. But I would be lying if I did not include these days. And I do not like to lie. As grandma used to say, “I haven’t the memory to be a good liar.”
The truth is this. Even ten years into this diagnosis, I get overwhelmed. It is overwhelming. Sometimes feeling like you are at the bottom of the mountain, all day every day is utterly exhausting. To constantly feel like you might be missing a scan, like you are behind on an appointment, planning a surgery, and cramming anything else into the cracks in between work and sleep can leave you burned out. I swear some days just picking up the phone to schedule something triggers PTSD. And for that, if you know, you just know. Because every office thinks they are your only office, and none of them seem to comprehend it is through your JOB that you have insurance.
Truth be told, it doesn’t all have to be Cowden things. Sometimes “regular people” things seem overly complicated and just generally hard. And when you mix together a rare, poorly understood disease and some “regular people” things, too well sometimes you just…ugly cry.
Regular readers know that I suffered a foot injury while teaching 3 years ago. And it has complicated my life in a “regular people” way, that if it was my only medical issue it could potentially be all-consuming. The return to in-person teaching this year has left my body feeling like I jumped off a steep cliff with no parachute. My body literally feels like it is in a free fall from the hours of standing upsetting my balance and causing pain up my leg, in the opposite knee, and in both hips. So, adding to the fact that the school day itself, double-masked and peeling hands from sanitizer, literally leaves me “stick a fork in me” done, I have restarted physical therapy, added a new orthopedist, been working through pain medications one at a time, and recently added acupuncture to the “keep me functional and sane” regimen.
Friday, the battle over this, most of which I will be deliberately vague about the extent of, took me to a whole new low. I am floundering. There is nothing much to say to me, so I have skillfully pulled back from most friends and family. I must press on at all costs. So I keep my head down and forge ahead. But Friday I found myself on the floor of my kitchen with two well-meaning dogs slobbering all the skin they could find while I simply lost it.
Then, I shook it off as best I could and planned and laminated new lessons like it is year one teaching, not year 25. Well, because essentially as an educator this is year one. Nothing is like it was before. Or, well, maybe it is still year zero. Either way, this whole toss it up in the air, and see where it lands system we have going here involves new plans. And new plans take time. And migraine medication.
I leave a tab open on my computer for everything I am contending with at the moment. Sometimes it freezes the system and I have to reboot. A metaphor? Probably.
One of those tabs was USPS tracking. I paid $16 to mail a letter, priority, certified, AND return receipt because I NEEDED a signature. The signature card arrived, with the number “C19” and no name. I can only hope that when I need it, someone can confirm the identity of “C19.”
Another tab is for our mail order pharmacy, my constant nemesis. One medication of Meghan’s which was canceled for no apparent reason on 12/23 took me through 4 phone calls to them and 4 to the doctor’s office before I finally emailed the doctor directly Thursday evening. This is a really cool hack Moms of chronically ill kids figure out. You eventually pick up on the email handle used at hospitals and you realize despite the use of “portals” where front-end staff screen your correspondence, most doctors get their own email. So, Friday morning he sent in a script himself. Except, it went into the wrong “pocket.” There are different areas for different types of scripts with different authorization processes. So, I regularly check all the “pockets” and there it was, in one where it was going to be denied. Again.
To make it even more interesting, when I had logged in originally I couldn’t see any of her meds. Or Felix’s. So I logged back into her own account, which she had authorized me to use, and which she had consented to merge with mine when she turned 18. When we started this on 12/23 there was plenty of medication. It is now dangerously low. I placed a call to the pharmacy. 97 minutes, and 4 representatives progressively up the food chain later, I had successfully gotten the medication transferred and expedited, but not yet processed. That will be a wait and see… And, the linking of the accounts, after being told it wasn’t possible, and essentially that I was nuts, the best I got was a “ticket” put into tech. I changed all the passwords to match so when I toggle three accounts I can move faster. When the final woman asked me to hold for a survey I said, hopefully for a recorded line, but simply because I had to get it out, “No, I can’t because I will not give me the opportunity to specify how many ways each of the 4 of you have been unable to help.”
You see I had already been on with them the day before over one of Felix’s medications which they told me was covered for 60 out of every 90 days. I still haven’t wrapped my head around a reason, other than cost. So, I found it cheap enough to buy, through Amazon Rx. Yep. That’s a thing. When Walmart called me, they wanted insurance information, because “this script is well over $1200.” When I gave her the Amazon RX code she actually gasped. $131. Should be in Tuesday. I will find the time to get to New Jersey to get it.
After the orthopedist. Because the acupuncturist said I should probably ask for an MRI of the right knee when she was treating my left foot… I was hoping the lidocaine patches would do the trick… not so much.
And the dentist is Wednesday. For a tooth I am sure I have cracked. Because grinding my teeth is just reality.
And physical therapy is Thursday. Just because.
Oh, and “you’ve got mail” just informed me FAFSA (hours of my life for no reason at all) is due again soon.
And, the driver safety course is expiring.
The notepad beside my computer reminds me to make time to call insurance to see if they can authorize Meghan’s MRI now, so I can schedule it for May at the facility adjacent to the hospital, not at all conveniently located on Long Island where the new Interventional Radiologist (who actually seems like a kind, decent human who will eventually need his own post) will have a go at the vascular malformation butting up against the nerve bundle in her thigh.
We’re overdue for dermatology. The one we had left, and I am in search, but time ticks by. I need a visit to the ENT for the fluid in my ear, the psoriasis in both ears, and the migraines that are relentless and likely sinus-based. She’s due for an abdominal sonogram and a colonoscopy. And, actually, so am I. But at least I have a GI in place for her. That’ll be early July, hopefully after she is healed from the IR procedure. There are times I wonder when she will get her first job. And other times I know that BEING her is a job most people would have quit. I can only hope her first employer understands when there is no job history.
On Sunday night I clean up my notes from a week’s worth of phone calls. I do my best to make a new list to stay on task for the week ahead. I try to keep myself honest in getting things scheduled, even when I know some will continue to balloon into bigger and seemingly insurmountable problems.
On Sunday night I also reflect. And that is where I take the time to forgive myself for the ugly cries. I ground myself in the knowledge that even though so many have it so much worse, the parallel truth is that my pain, and my being overwhelmed is equally valid. No more, no less. And I am entitled to my time to yell and scream and carry on.
On Sunday night I pick myself up, dust myself off, and remember that I am loved. And then I make sure I allow an hour of TV with two doggies and the man who loves me unconditionally, ugly cries and all.
My birthday is a tricky time of year. This week is emotionally charged always. Emotions are right at the top. I simultaneously love and abhor my connection to dates. It is a blessing and a curse that I constantly strive to strike balance with.
I never thought much about my birthday growing up. There were often sleepovers and cake with family, but I never thought too much about it. Not about the day, or about the blessings of family, friends, and gifts galore. Somewhere in my youth, I thought it would last foever. I was always taught gratitude, and have penned my own thank you notes from a young age. But, I meant the matter-of-fact way things just happened. My mom worked 2 jobs. She worked hard all the time. But, she made time for those things as if it was effortless. I am pretty sure I might have missed some thank yous to her along the way. She never skipped a beat.
As a teen things changed a little. Our immediate in house family grew with the additions of Ken and little sister Kathi. Older sister Lisa was at college. But, still, I never gave the day much thought.
My cousin Meghan was born in May of 1985 when I was in 6th Grade. She was the absolute apple of my eye. She was the first child in my large extended family that I was ever old enough to babysit for. We spent a good deal of time together.
Meghan’s leukemia diagnosis came when I was a freshman in High School. The next 4 years for her were a perpetual whirlwind of remission and relapse, treatments, bone marrow transplants, and smart, silly kid time. She was wise beyond her years and loved on her little sister with everything she had. She loved our Grandma’s dog, and so many people loved her.
As a growing teen, I wanted nothing more than to be tested as a possible bone marrow match for Meghan. I was turned away, even as a first cousin, and told to revisit the possibility when I was 18.
The summer before Meghan died she gave me this picture after an afternoon at the local Children’s Museum. It hangs in my house still.
I left for college in August of 1991. I called and spoke with her as often as I could in the “pre-cell phone” era. And then our stories above became forever intertwined on 11/12/1991. A call to my dorm, on the morning of my 18th birthday, brought the news that Meghan had gained her angel wings. I was never going to know if my bones held the marrow that could have saved her life. That was a bitter pill to swallow. I was broken-hearted as I headed home for formal goodbyes, but I was buoyed by the fact that no matter how many years went by, her passing, and the celebration of my birth would be remembered the same day.
I never lost the feeling of connection to this spectacular, tenacious 6 year old whose ability to converse with those well beyond her years, to express her thoughts, and to bring joy to those around her was utterly epic. I never ever forgot New Year’s Eve together, setting all her dolls out on the couch, or the MILLION times we watched Lady and the Tramp.
Meghan was still in my heart in the summer of 2003 when I asked my aunt and uncle if I could name my child after theirs. That is Meghan’s name story. She was named after a warrior whose spirit she possesses. Their struggles differ but their giant hearts and no-nonsense speech sometimes are intertwined in my memories.
Our Guardian Angel wears a gold ribbon. The power of this has also not been lost on me. Childhood cancer is it’s own kind of hell, for the parents and the children. We, as Cowden’s Syndrome patients have astronomically high cancer risks. Ones that can get into your head if you’re not careful. But we have what is not given to most. We have a warning system. And through that warning system our cancers, if they occur, can be easily managed most often. We have a gift others were not given, even in this messy road.
The story of our Meghan has had so many twists and turns these last 18 years that many blend together.
Through those years we said goodbye to many grandparents. Among them, my father, Ken’s father, my mom’s father, and my dad’s father. That group of veterans were life-shaping as well. And, with Veteran’s Day being this week too… sometimes the proud, and the grateful, and the sad get mashed together.
And November 10th, the birthday of the US Marine Corps fits right in here as well. I do not profess to fully understand, but watching my Dad reach out to every Marine he was still in contact with on 11/10/2014, a month before cancer stole him, it imprinted on my heart.
I’ve never been a big fan of fall. Or, maybe I was when I was a kid. I don’t remember. But, somehow the darkness and the dreariness and all the memories seem to feel heavy this week.
So I try to think of the joys that have intertwined with the sorrow. I think of 11/12/2014 when Meghan received “Kid of Achievement” award at a very special ceremony.
I think of my little second cousin Mackenzie, my birthday twin, just a TON of years later, brought into this world no doubt with some careful guidance by Angel Meghan and some others, whose memory Mackenzie’s mom and I both hold dear. That precious girl, born after tragedy had already touched her life, has the most magical smile. Oh, I wish I saw her more.
Angel Meghan and Cousin Kim
And last year, we took the day as a family of three and had a delightful senior photoshoot for our one and only, also on 11/12.
Photo Credit Natalie Licini @Jrevele
Photo Credit Natalie Licini @Jrevele
Photo Credit Natalie Licini @JRevele
All of these memories are somehow connected to this week. And as I think about my birthday I am grateful for another journey around the sun. The numbers don’t flip me out. I will scream loudly and proudly that I am 48. I am a mother, a wife, a sister, an aunt, a cousin, and a cancer survivor. I am grateful.
This year though, on the 30th anniversary of the passing of Angel Meghan, I pause a little extra.
Some people come into your life only for a season, yet they leave an imprint on your heart that lasts a lifetime.
As I head into my 49th year, I am grateful for those I have loved and lost, and for all I have learned. I look forward to more adventures. I hold my dearest close. I shed the nonsense. I avoid the drama as best I can.
I am far from perfect. Perhaps my biggest life lessons come from basking in that imperfection, embracing those I have loved and lost, and those I still love today. Taking the lessons learned from all and carrying them forward.
Time waits for no one. Semester one at college is almost in the books. My girl is where I was the year my Guardian Angel left this earth. 30 years since I started college. Life keeps moving.
Honor the lost. Embrace those that are near. Live in gratitude and be full of grace as our God is to us. Lead with compassion and a kind heart.
This is not the birthday we planned, but it will be amazing in its own way.
These last few months have been a lesson for the world, that plans are sometimes abruptly interrupted and that life is often unfair. This is not news to us. We’ve been replaying that lesson together for many years; cheering each other on, and holding each other up through surgeries, recoveries, setbacks and all the things that come with our diagnoses.
The difference this year was that everyone else was at it alongside us.
I know you well Meg, but I have learned even more about you these last few months and I could not be prouder of you.
You tend to see the parts where you struggle. Sometimes it weighs you down. I see the parts where you succeed. I see the parts where the struggle is productive and you grow. That’s why we’ll always be good together.
There is no denying that there were times this year where frustration, sadness, isolation and loneliness tried to win. But, as I’ve said to you so many times before, you have a 100% success rate when it comes to overcoming obstacles, and this year proved no different.
You took the “remote learning” for what it had to offer. You missed the classes that had been engaging you and challenging your brain, but you never gave up. You spent the end of your Junior year as you did the beginning, finishing with the same perfect report card while doing a whole lot of “self-teaching.”
Swimming was wiped out in March just days before a meet that was to be your comeback. You were trained. You were ready. It was cancelled.
You mourned a few days. You worried about how to keep in shape. Your body had never allowed you to do much land training. You tried video after video. You addressed your own frustrations. You found a way. Now, when I see you hitting a heavy bag probably in the best overall strength of your life, I can’t help but smile. When I see photos of an 8 mile hike, when a year ago walking .5 was too much, my heart sings. You push your body to always be better. You don’t give up. You inspire me.
You had gotten us to agree to that tattoo months earlier – but you couldn’t be out of the water the required time after it was done. Then suddenly swim practice was no longer. So, you did it. With our blessing you took back a little of your body that day. You took back some control. You started to heal your soul a little more from so much trauma.
Without access to standardized exams, without the ability to tour campuses, without your college office, you knew you had to take matters into your own hands. Focused on your desire to be a Physician’s Assistant you carefully researched Universities. You created a list. You reached out to swim coaches. You set up your own calls. You narrowed things down. You called again. You got connected to admissions offices. You are well on your way to completing applications. You could have sat back and whined. You could have waited. You refuse to let anything stand in the way of your goals and dreams. When college is ready for you in the fall of 2021 you will be well-prepared.
You had a birthday vacation to Disney with your very best friend planned to the day. You were so grateful and so excited to experience your happy place with a great deal of independence, and super fun company too. We watched the numbers. We stalled. We watched some more. Then finally I had to pull the plug. Your birthday is one of my favorite days. It was hard to hand you disappointment like that. You took your time to process and picked your head up again. There will always be 2021…. The magic will still await.
Faced with the unusual situation of being local on your birthday you talked through all the feelings. You wanted to do something to make joy out of disappointment. You decided you were going to use your day to make others happy. You chose Ronald McDonald House, as you remember vividly the treatment you received when we spent a night in 2014 before your thyroid surgery. With a little help from Aunt Lisa, you were connected to the CEO of the RMDH New Hyde Park. I listened as you spoke to him and was just full of pride at your maturity and ability to handle yourself. By the time you finished he was as excited as you were.
You spent hours generating a digital flyer. You texted and posted and shared. You set up a contactless donation option for items on our front porch. Signs were made. People started to reach out.
When people asked what you wanted for your birthday, you sent the flyer.
That level of selflessness causes parents hearts to actually burst with pride.
There are many things this year is not. Many things you wished it was. You are starting your Senior Year of High School in very uncertain times. Your resilience is amazing.
It is not all smooth. It is not all easy. There are COUNTLESS bumps, and pot holes and craters in the road. “The other shoe” drops constantly. Sometimes as a sneaker, and other times as a steel toed boot. Regardless, you dust yourself off and press on.
“Get up. Dress up. Show up. And NEVER give up,” was written for you.
I can not promise you a smooth year. No one can. What I can promise is that if you continue to remain driven, focused, compassionate and loyal, you will succeed in all you do.
My wish for you is that you can spend some time this year learning to love your own strengths. I hope that you can spend less time worried about the struggle, and more appreciating the outcome.
Explore. The world is waiting for you. And the world will be better for it.
You can have hope while being grounded in reality.
Faith doesn’t mean you’re never sad.
Laura Story wrote the song, “Blessings” many years ago. It is a song that has played on repeat during a few of Meghan’s hospital stays.
The chorus,
“Cause what if your blessings come through raindrops? What if Your healing comes through tears? What if a thousand sleepless nights are what it takes to know You’re near? What if trials of this life are Your mercies in disguise?”
Is full of seemingly opposite concepts. Yet so often through our rare disease journey, and our Cowden’s Syndrome mountains, and Ehlers- Danlos obstacles, this song has just made sense.
And now, during this time of pandemic and isolation, and anxiety it resonates even more.
We are freakishly accustomed to isolation. Passing through surgeries and rehabilitation, and hospitalizations and illnesses as if they are as normal as a traffic light on the corner of a city block, means that you look at things a little differently. Any time not spent recovering is seemingly spent traveling to and from appointments that yield little besides new appointments. And yet, their very existence can consume every spare moment.
Cowden’s Syndrome is a constant “flashing yellow,” a caution sign, so to speak. It is a blessing that we are equipped with the knowledge that as a people so susceptible to a variety of cancers that we must pause to aggressively screen,often twice a year, for our most sinister well known risks, (breast, thyroid, uterus, kidney, colon, skin…) and that we must investigate each new bump or lump, because you just never know.
And yet that blessing comes sometimes through raindrops, of plans foiled, and journeys rerouted. All worth it if we have remained as we say, #beatingcowdens.
COVID-19 has rerouted most of the world this spring.
And we have learned.
We feel. We laugh. We cry. We sit still. We take walks. We eat together. We pray. We read. We pet the dogs. We sing. We celebrate. We mourn. We watch TV. We act with caution not terror. We care about others. We read. We learn. We talk to each other.
We “attend” church weekly for the first time in YEARS, as we have a church too many miles from us with a message we deeply need, suddenly available in our living room.
We did not pass a single graduation sign without a moment of empathy for what the graduates missed. We celebrated every birthday drive by with loud honking horns. We sent virtual cards when the store wasn’t an option. We thought about sports events and recitals and parades and everything someone, somewhere had their heart set on.
We talked about everyone missing something. Every house, on every street had plans interrupted, and life rescheduled without warning. “Everyone has something.”
And in the most unusual way, for the first time in a long time, we felt a camaraderie with so many. Everyone’s life was upended. Everyone’s.
Don’t misunderstand, I’m not happy about any of this. I just feel like it is easier to talk to people. That may sound odd. But currently people “get” isolation a bit better than before.
As swim season cut short days before a college showcase she was prepped and ready for, it wasn’t just HER.
As the SAT, and ACT play miserable games with enrollment and dates, she is united with the class of 2021.
Remote learning was… well I’ll just leave that there and say, necessary based on the state of NY in April.
We saw a 20th anniversary celebration derailed. And yet, we had the most incredible evening.
I cancelled tickets to my first solo journey, a PTEN conference that was to be in Boston. But, I celebrated the fact that this time I actually WAS going. I will get to the next one.
I took the refund for the missed Billy Joel concert. It took 2 decades for me to get the nerve to want to attend any concert again. It may take another 2 before I want to be in a crowd that large.
Disney – our August safe zone for 12 summers is cancelled. There is no way I could do it under these conditions. Just none.
There were tears cried for all of the above. But, there was also the awareness of gratitude, for health of family and friends, for two secure paychecks, and extra time with two adorable dogs.
The maintenance appointments are beginning to get caught up. Some have been live, and some virtual. I am undoubtedly excited about keeping some virtual medicine where the visits will allow. So far we are all faring well.
We are staying close to home. We are choosing our interactions wisely. We are choosing not to be crippled with fear, but rather empowered with logic, faith and compassion.
And when we head out into the world we mask.
We look daily at COVID numbers around us, and quite frankly they are disturbing. Locally we are in good shape now. But things change quickly.
We spend these days enjoying sunshine. We are in gratitude for a beautiful yard, and thankful that swim practice has begun again.
I promised to not complain about the 5:45 AM wake ups. And I’m trying to be true to that.
We have real conversations here about a fall schedule, without letting it overwhelm our days. We talk about scenarios. Her sport is a fall sport and it grows increasingly likely that her Senior season is in jeopardy.
We have conversations about school. We know that we want to return. But we do not know if it will come to be, at least not right away.
We have summer goals. They are different this year. And maybe that’s not always a bad thing.
We allow ourselves to feel every emotion here. And for us, it helps.
Whether you’re fighting a rare disease (or two) or wrangling a teenager, now more than ever we are one.
Forgive yourself.
Blessings and sorrows are not mutually exclusive.
Disappointment can exist alongside gratitude.
You can have hope while being grounded in reality.
Faith doesn’t mean you’re never sad.
#beatingcowdens
completing my first post from my iPad on the couch as the FOOT recovers from some pretty extensive, non Cowden’s related surgery.
The questions were simple enough. “What about basic supplies? What about the laptops? What about the crayons? What about the things multiple hands touch over a short period of time every day?”
The man at the end of the call asked the questions of the teacher’s union president. It was following a discussion of what we will need to do to safely re-open schools in what many hope will soon be a post COVID-19 world.
The call was 5 days ago.
I have asked myself “What about the crayons?” innumerable times since I heard this teacher ask. The union president was stumped, but to his credit, collected this teacher’s contact information to add him to future focus groups.
There is so much we just don’t know.
I have tried to stay present, not to stray too far from the moment. I have tried to remain in an attitude of gratitude for my ability to work from home, the health of my family, and our financial stability.
But, my mind strays from tragedies, milestones missed, and seasons not played, to an uncertain future. We receive conflicting messages daily, through multiple elected representatives, doctors, and ordinary citizens. Everyone feels adamantly one way or another about a variety of issues.
But, what about the crayons?
It’s a basic enough question, that may seem like no big deal if you haven’t spent the last 23 years in an elementary school. It’s the kind of question that will easily be brushed aside regardless of how many times it’s asked.
But, maybe it’s one of the most important questions.
Through the years of teaching I have seen a lot of changes, and I have not always embraced them willingly. Some, I would argue still, are pure nonsense. Others have made me a better educator. In reality, like so many other things in life, what I agree with is not wholly relevant.
When I started teaching we had desks. Students had desks. Teachers had desks. Everyone had their own supplies. Students largely worked alone. Slowly, there were times it was appropriate to do “group work” where we would move desks together for collaboration, only to later return them to their original separate space.
Through the years, desks became tables and teacher’s desks were eliminated. There were bins on tables for shared items. Books were kept on shelves, and folders kept in bins. Everything required a monitor to hand it out. The tables were 6 sided, making separating children a challenge, you know, for those activities that shouldn’t be done in groups. So we added “dividers” also stored, and distributed as needed.
Slowly, desks have made a comeback, as everything old is new again, and supplies are often kept in the desks for the older children, but many of the youngest still work from tables.
We are supposed to teach them to collaborate. We are supposed to teach them to work in groups. We are supposed to teach them to get along, in addition to, well, TEACHING them.
About 10 years ago I shifted from teaching in a classroom of my own students to teaching as a “cluster” teacher, in a position to provide preparation periods for the classroom teachers as per our contract. I serve as a math cluster, a position many see as odd, but one I love. My role in this position is to help all children love math.
I have evolved over the years from a hesitant, controlling teacher, to one who embraces productive student noise and activity. Although I see students from kindergarten through 4th grade, my room still has those six-sided tables. Most lessons are hands on, using everything from play-doh, to stamp pads, to puzzles, to counters, to fraction bars and many more. My children share pencils, 12 at a table. They also share scissors, and glue, and rulers, and hundreds charts, and teaching coins, and that is only some of what is in every table bin. As 5 classes a day, 25 classes a week, and roughly 600 students a week sit at my tables and handle my math tools, monitors count and keep order. Desks are washed often and hand sanitizer flows freely.
But, there is no part of me that thinks it’s enough.
The giggling joy of children battling number facts, playing dice games, building numbers with play-doh, and solving number puzzles together has become a sound that I truly enjoy. My room is noisy, active, and largely fun.
It’s a stark contrast to some other aspects of life.
I take seriously the task to encourage a passionate love of math. I am thrilled to be a safe space, where tests are minimal, informal assessment rules, groups are fluid and the majority of children get to feel successful.
Maybe I learned how important that excitement for education was after our Cowden’s Syndrome diagnosis in 2012. Something about surviving a sneaky cancer, and watching your own child lose a good deal of innocence on exam tables, and in operating rooms, makes you more in touch with the value of “productive, happy noise.”
My girl was in 3rd Grade when we were formally diagnosed, but in truth she has ALWAYS been dealing with health issues. I watched her elementary school experience. I know as an only child with two working parents, largely unavailable to meet others to play, social isolation came early. I know she had tons of alone time, and subsequently too much adult time.
I know the teachers that changed her life for the better, to whom I will be eternally grateful, and I know the ones who just changed her.
She never liked math. I could always get her to understand, but it made her nervous. It still does. She never “played” math. Like so much else, it was a task to master, not an experience to have.
Maybe because it was easier to read during the hours of waiting, in traffic, in offices, in hospitals, and during recovery. Or maybe because it wasn’t fun. I’ll never know.
She never really handled crayons much either. Or math tools. And she was allergic to the wheat in the play-doh….
So, I set out to make my math room a place that could maybe change the perception of one kid. Maybe I could help one kid believe they could be good at math, or that math was fun.
I have a system set up. There are 5 bins of every math tool you can imagine. When they need crayons there are three fresh boxes poured out into bins that match the color of their table baskets. The older kids usually have a focused lesson in different levels. The little guys often rotate through a few activities to keep them moving and keep things developmentally appropriate.
Which brings me back to the crayons.
As my colleague on that call pointed out, it was laptops, crayons, and everything in between.
It is my entire program. It is all things hands on and developmentally appropriate for our youngest learners.
No one knows.
I have had many sleepless nights since we began
#beatingcowdens
Very few things leave a mom as unsettled as her child’s health.
But, a close second might be asking a primary teacher, “What about the crayons?“
beatingcowdens 