We listen to a good deal of Contemporary Christian music. There are other tastes among us, but often, especially in the car – we listen to this. It’s been a few years since we’ve had a church where we all felt comfortable and at home, although we possess strong, deeply rooted faith. This music helps keep us focused when things can otherwise seem blurry.
This particular song surfaced a few weeks ago. Meghan was battling to make a comeback from knee surgery 7, and seven was NOT a lucky number.
When you’ve been through the operating room 18 times and it’s still a week before your 14th birthday – you can call yourself somewhat of a professional at recovery.
We left the hospital with our list of directions. We went to the surgical follow-up. We scheduled PT. We even held an extra week before restarting swim. There were crutches for a very long time – used responsibly. So, when she had done everything right, and her body decided to push back – hard, she was understandably angry and very frustrated.
No one really had a solid explanation for the fluid that overtook that knee almost 5 weeks post operatively. But, there never really is a solid explanation. I’d like to say we’re used to it. But, I don’t like to lie.
There were more crutches, and more PT with the BEST PT in the whole wide world. (We LOVE Dr. Jill – because she works on the WHOLE kid. She gets that they are more than the body part giving them trouble. I know of NONE quite like her.) There was increase in strength and range of motion. There was a return to (half) swim practices.
There has been diligent icing after swim. There has been stretching and strengthening because, quite frankly, she WANTS to feel better.
We joked around during the month of June, how nice it would be if we could make July a “doctor- free” month. We longingly imagine the same scenario every year. What if summer could be time to relax? What if we could take day trips? What if we could come and go, and rejuvenate?
I just counted 20 medical appointments between us over the last 31 days. There are 2 more tomorrow.
Chronic illness is a real drag at any age. When it happens to a child or a teen it makes everything that is already hard about growing up – even more of a challenge.
When you are in an almost constant state of recovery, you can find yourself tired. Fighting so hard just to get back to where you were can make you feel like a hamster stuck in a wheel.
Chronic illness, constant pain, surgical recovery, ongoing surveillance, and all the other “fun” things that accompany Cowden’s Syndrome – or any other “it’s sticking around FOREVER” illness can leave you wiped out.
It’s hard to build relationships, friendships, or even a social group when you aren’t able to do so many of the things people take for granted every day. There are days you quite simply run out of “spoons.”
But, in life there are more times than not that we have choices. I try to model for my daughter, but so often she models for me. You can choose to sit alone. You can choose to let pain, fear, anxiety and frustration take hold. You can choose to be sad. You can choose to be mad. Or you can realize that life is hard. Everyone’s life is hard. Life is also full of blessings.
When you realize that this is your life, and you decide you’re going to make the best of it- that’s when you dig in. You climb up that mountain, one step at a time…
I admire many things about my daughter. She is not perfect – neither am I. But in her soul, there is a “Never Give Up” attitude that permeates all things. There is a constant quest for equity and justice, not just for her, but for all she interfaces with. There is a compassionate need to help others. There is a desire to be successful in spite of her circumstances – not because of them.
She always says she loves to swim because regardless – she has to meet the same time standards as everyone else. Somehow it makes each comeback a little sweeter.
No one else would likely know, or realize, or remember. But, we know.
First year on the high school team. The season starts right after school. She’ll be ready.
That’s why we will always remain
#beatingcowdens
“…There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away…” Danny Gokey
This video is worth your time…
Danny Gokey – The Comeback
After a season of nightfalls and pushbacks
After the heartache of wrong turns and sidetracks
Just when they think they’ve got you game, set, match
Here comes the comeback
Just cause you laid low, got up slow, unsteady
Don’t mean you blacked out or bought out you’re ready
Just when they think there’s nothing left running on empty
Here comes the comeback
(chorus)
This is your time, your moment
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
You feel the lightning, the thunder, your soul shakes
Under the roar of the heaven, the tide breaks
And from the ashes you will take your place
Here comes the comeback
(chorus)
This is your time, your moment
The fire, the fight, you’re golden
You’ve come so far keep going
Here comes the comeback, comeback
There is no mountain you can’t face
There is no giant you can’t take
All of your tears were not a waste
You’re one step away
Just when they think they’ve got you game, set, match
Sitting, sopping wet, in the middle of the ocean, in your small row boat. Your feet are wet. Your fingers are wrinkled. You are cold, exhausted, and often frightened. There is no access to the weather channel. Your connections to the real world have all but vanished. You focus every ounce of your strength on keeping the boat afloat.
You try to maintain a sense of calm, but your insides are turning worse than after a serving of spoiled mayonnaise at a summer barbecue.
There are moments when you think. Hope. Pray. That it will settle down. There are moments when you dream of enough sunshine to shed your wet clothes and warm and dry yourself. There are moments when you can almost see what appears to be a friendly ship in the distance. And in those fleeting moments you even remember what it felt like to socialize, to chat, and to laugh – about every day life.
Your faith reminds you that Jesus is in the back of that boat. You know better than to let your insecurities wake Him. You know in your core that you are loved, and protected.
And then another wave crashes over the side. You can not put your hand on the oar. You lock eyes with your husband in front of you – always with you. You put a hand on your girl, sopping wet beside you. You strengthen your resolve.
I have been fading out of touch these last few months.
I love writing. It is my therapy and my release. It clears my mind and cleanses my soul. Except there is a balancing act to be had -tenuously protecting privacy while fulfilling what we believe is our calling to share a raw, honest view of our lives “Beating Cowdens.”It is hard to realize breaks in time. Things blend together so readily it is hard to discern where one event starts and another stops. There is only rarely a pause between medical appointments, some for the same issues, some for new ones, and others for maintenance. Some appointments are mine, and some belong to Meghan. All but a few require hours and hours of travel. It safe to say they cost us on average 5 hours a day. But, those 5 hours are not of my choosing. I can’t say, decide to get up at 5 – deal with the appointment and be ready to start the day at 10. That’s just not how it works. Most are scheduled somewhere between 10 and 3. That means by the time we get home, there isn’t much time to do anything. Or, we spend the day waiting to go – so there isn’t much to get done. There are no summer day trips planned. Making plans to catch up with friends is something we avoid – because we so often have to cancel. The cycle continues. There is just getting by. And some dreams that maybe we can get to the beach one day this summer…
Somewhere early this year Meghan started to be done with it all. This is not an easy place to be in by any means. She is a month shy of 14, and this is her journey for the REST of her life. Teenage years are nothing most of us would want to revisit. The extra complications of finding your way amidst a chronic sense of isolation (the knee precludes too much walking, it prevents basic sports games most of the time, it leaves the competitor side-lined too much, the allergies mean the food has to be different, the pain is unusual and constant and managed in some “unorthodox” ways, the number of times she has to say “no” because she has an appointment, an ER visit, or something else medical is astounding and limits the invitations, ETC., ETC…) coupled with an understandably defensive posture, and a desire to just BE, can make for some lonely times.
Her sleep patterns went off the charts some time in February. My sleeper just couldn’t fall asleep. She’d lay still for hours. Her pattern was restless and fitful. I watched my girl pull away from her swimming. I fought to push her. Even after her best meet ever in March – I could no longer get her up to a morning practice.
Meanwhile, I never made connections that are so clear now. In January we were released from the Interventional Radiologist who had completed the 5 embolizations over 6 years on the AVM in her right knee. He released us to the care of the orthopedist who had already performed an arthroscopic lateral release in 2015 to help shift her patella into place. It had begun to slide as a result of residual damage from small amounts of lingering blood in the knee. By early this year the warning signs had begun to develop that the knee was off.
A visit to the orthopedist in February confirmed what Meghan undoubtedly knew. He offered her the chance to try to intervene conservatively and put a brace on to hold the patella in place. Maybe it could “convince it” to move on its own…
She took it in stride, like always. We bought leggings to accommodate the giant addition to her thin frame. She dug in and pressed on.
While all this was going on the chronic congestion that had begun in November worsened. The ENT noted swelling, but called it allergies, the obvious choice this season. There was a nasal spray added, and a week of a decongestant.
Attendance in school started to be a struggle. There was fatigue. Low grade infections. There was pain. So much pain.
The chiropractor visits became more frequent. The leg length discrepancy made more noticeable by the limping to accommodate the brace on the shifted knee cap.
My surgery in March helped nothing. There was so much vocal rest required it tossed us all on edge more than normal.
Swim practice was lessening. Focusing on school was a chore. Sleep was becoming near impossible.
The breathing worsened. We justified the “worst allergy season ever.” Her voice started to feel the effects of this chronic congestion.
In April the inevitable was spoken. The knee would need a repeat of the 2015 arthroscopic lateral release. We wanted to schedule it immediately. The first available day was her the opening night of her school play, a play she had earned the lead in. The next opening was almost a month later on May 20th. We would have to wait.
The pain increased. The frustration increased. The sleep, and subsequently the desire to swim decreased.
The “Coaches Award” at the swim dinner made her feel honored. She respects her coach so much. But, she couldn’t reignite the fire.
The surgery in May went well, even though I had worried with the increased congestion that they could not put her under anesthesia. But, it was fine. She went through the 2 hours like a seasoned veteran. That made number 18.
Rehab was tough. The pain was significant. But, it faded gradually. Our favorite PT began to work her magic.
She got around on crutches, figured it out and made it work. Again. Always.
She got off the crutches exactly in time for 8th grade prom.
She was healing. Physically.
She made it back into the water. She swam the 18th of June, and the 19th too. She started to talk about it in a more positive way. The 20th was awards night for 8th grade.
My 8th grader was named Salutatorian for a graduating class of almost 400. She received several academic awards that night. I sat in the auditorium with the last few months, and years running through my mind. People knew some, but no one, not even I knew ALL of what it took to be her, every day. And here she was, not only doing it, but excelling at it. It was a good night.
Until she came home, and put up her feet. And there, on the side of her surgical leg was a 4cm x 6cm mass, with rapidly increasing swelling. Breathing, we strategized.
We took the crutches back out. I stayed up most of the night making sure there was no bleed on the knee. I sent her to school the next day to get her cap and gown and yearbook “like everyone else.”
Then we headed to the surgeon. His nurse practitioner sent us to the ER. They could not get their acts together and after 7 hours discharged her on crutches with a script for an MRI.
And an IV that went unused…
She was to be “minimal weight bearing as tolerated.” They wanted her back at the doctor that Friday. I finally spoke up and said no. She was going to her graduation Friday – NOT tainted by a medical appointment. We settled on Tuesday.
However, with no answer, she was to graduate on crutches. So, a friend suggested if she had to use them, she should “own” them. My husband spray painted them white.
Sunday we drove to Long Island for that MRI. The one I knew they would not do locally. 30 miles. 2 hours and 15 minutes home. We caught up with some friends that day. Good thing. We needed them so badly.
As she was in the MRI machine for her knee she told me something was “blocking” her nose inside her head. If you’re a Cowden’s Mom – you just went to tumor as fast as I did. My head spun.
Monday the ENT was able to ease that worry. He told us it was a mass of infection. That likely she had had a severe sinus infection for 8-10 weeks. He anticipated 14-28 days on biaxin to get after it. That was alongside a short course of oral prednisone. He nose was so inflamed there was almost no air passing.
A sinus infection usually has me out of commission in about 3 days. I just shake my head in awe sometimes.
Tuesday the 27th we trekked out to the surgeon again. The MRI showed the mass to be a huge fluid filled pocket. There is also fluid all through the knee joint. He looked, and looked. He has done many surgeries. He is skilled. He shook his head and finally told us he did not understand. He had “never” seen this before. And now we had to wait for her knee to tell us what to do next.
Cancel camp. No Drama Camp she had loved so much.
Postpone PT indefinitely.
No swim practice yet.
And there we were – facing another summer…
But somehow, all of this seemed to weave together. The perfect storm. The knee, the sinuses, the sleeplessness, the fatigue, the low-grade illnesses, the sinus infection…
Somewhere through all this we spent a few visits with a brilliant doctor who diagnosed Post Traumatic Stress Disorder. PTSD. Like with the soldiers, or other trauma victims. “Secondary to significant medical trauma” she said.
It all made sense, except the “post.” There is nothing really “post” about this ongoing scenario.
That, and the Salutatorian thing. As impressed as I am – I am still in awe.
The journey continues, and we will above all things remain…
I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang. I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.
It was Tuesday the 11th. “Spring Break” had begun Saturday the 8th. Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned. It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight. I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet. Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house. It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well. So, I had headed to this appointment alone with Meghan earlier in the day. Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.
I took a deep breath before I answered.
A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?” That is my favorite title- depending on whose asking. I tried my best to muster and equally cheery, “Yes, it is.”
“Oh, good. I was asked to set up Meghan’s surgical date.”
Sigh, Even though I knew the call was coming – it doesn’t get easier. I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”
“How soon can we do this?” I asked.
“My first available is May 11th.”
“REALLY? A whole month?” I thought of the anticipation and the anxiety that would build as the pain increased. Then I realized something worse. May 11th is opening night for “Bye Bye Birdie,” her school play. Cast as Rosie she’s been preparing forever. There was just no way. I swallowed hard.
“What if I can’t take that date?” I held my breath,
Cheery changed her tune. I’m sure she thought I was being difficult. I tried to explain. No luck.
“The next date is May 20th, then you’re into June.”
I was playing out the June calendar in my brain. ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.
There was never going to be a good time to be out of commission.
Deep breath. “Any chance you’ll have cancellations?”
“No.”
“Ok then. May 20th it is.”
And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery. I just said, “Thank you.”
Meghan’s relationship with her right knee is complicated. It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee. As she grew, it got worse. It always seemed to bother her. She pushed, and pushed. Eventually it was hot to the touch and pulsating. The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.” Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee. We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.” Between December of 2009 and February of 2012 there were 4 embolizations on that knee.
The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011. It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit. By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring. It seemed to stabilize.
But, as everything overlaps and one thing leads to another, there was pain. There was pain that she was repeatedly told should not be there. Yet, no matter what they said, the pain was there, and it was consistent, and it was real. She pressed through. She stopped soccer and tried dance. The knee was cut out for neither. She found her way into the pool in the spring of 2013.
By that fall we had signed her up for a 12 month competitive swim team, and things were looking up. She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.
There were other surgeries in between. And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function. And the Celebrex was wonderful. Until it wasn’t.
And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress. It took a week to stabilize her. I was scared. Out went the Celebrex, fried food, and a whole host of other goodies.
But, little did I realize, that Celebrex was likely the reason the AVM had quieted down. Apparently the drug has properties that work on blood flow. A few months off of the Celebrex and all hell broke loose. Literally. It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk. Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.
Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.
Blood and bone and tissue are not friendly. It’s like neighbors invading space. You can tolerate it for a while, but it doesn’t take long before the damage is irreparable. It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.
We were advised to consult with an orthopedist, and we did. He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together. It became an orthopedic procedure. The patella was moved back where it belonged. Things were cleaned out. Recovery was smooth relative to the emobolizations. We were told it would last a few years.
In January 2017 we were pretty much released from interventional radiology. We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again. In February the knee pain started again. Slow, but steady, it kept growing in duration and consistency. At a routine visit the orthopedist mentioned the potential need for another arthroscopy. He reviewed the January MRI and showed us where the patella had shifted again. He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing. He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.
Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery. He explained to us what he needed to cut and move, and why it was time to get it done. We had the necessary conversations about length of time out of the pool, and other restrictions. We left, quiet and resolved. The only thing she asked me was to just get it done as soon as possible.
So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again. Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks. And that’s just the frank honest truth. Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit. I was grateful for Grandma, and the ability to be distracted for a bit. Without her memory, she is just real. That was a good day. And that day she loved having me. I cherished the visit.
I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.
Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment. Meghan headed to play practice, and I traveled to my vocal follow up in NYC.
My report was adequate, but not what I had hoped for. Still swelling. Still be very careful. Still rest when you can. Still exercise caution when you get back into your program on the 19th.
Friday was for vocal therapy. And for trying to put the house back together. And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws. It was our 17th Anniversary. We sneaked an hour or two for dinner together…
Saturday was voice lessons, and…
Somehow it bled into Sunday, and Easter and some time with family. But, it was immediately back to the painting.
By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order. We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…
I am focusing on the sunny days. I am trying to find some time within the chaos to be still.
I asked Meghan why she was so uptight the other day. It really was a stupid question. This was the grossly abbreviated version of ONE aspect of her real life.
And tomorrow she will have to practice smiling and responding to the question “How was your break?” in the only socially acceptable way. “It was fine, how about you?”
Fine… it has so many meanings. We don’t want to bring people down all the time. It gets hard to have a conversation sometimes though. Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times. A lot of our days are spent recovering. Physically, mentally and emotionally recovering. Fighting financially against incorrect billing, and generally trying to breathe.
I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s. However, just like in anyone’s life, some days are better than others.
I’m anxious for a vacation not peppered with appointments and surgeries.
Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”
I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3. I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation. But, aside from the inconvenience of not speaking, I have felt pretty well.
That left me with a little time to get a few things done.
I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.
I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years. I vowed to get to work on that.
I also discovered that I have an account on the family’s “Netflix” and I learned how to sit still long enough to binge watch some “Law and Order.”
There was time over these three weeks for some honest self-reflection as well.
Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it. I already wrote about isolation, and I had some time to think more deeply about what role my own actions play in that. I was able to reconcile that some of it is unavoidable, and some can be mended by me. Balance. I’m on it.
I also took a hard look at my own emotions and how they affect my house.
It is so easy to get “stuck” in the role of caregiver. It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life. We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin. Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt. When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming. And it did.
I sat in my office one day, looked around and realized I was unhappy. That was a tough realization.
I am not unhappy with my husband, or my daughter, or the countless blessings in our life. I just became so consumed with getting things done that I forgot myself. Literally.
Sometimes its good to reflect. It’s the only way to get things done.
Last week my sister sent me a box of essential oils. I was skeptical. I bought a diffuser. I feel like peppermint in the air while I work is good for my soul. So is trying something new.
Tuesday I went to Kohl’s. A quiet activity easily done alone. I felt the tension start to release. I picked up a few things for me and for the house. I went out because I WANTED to.
Something amazing happened Tuesday. My husband and my daughter both remarked that I looked happy. I had a story to relay at dinner that was about me. The mood in the house was lighter.
Wednesday I took a nap in the middle of the day. Because I could. Again, I found myself with a little less pressure in my shoulders.
That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.
I’m a work in progress.
I chose to do a deep cleanse on Thursday and Friday. I was working on my mind, but I had to bring my body along. It had been too long. I had gotten a little lazy in my habits and in my routines. I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.
I woke up this morning having released 5.1 pounds of junk. I started the day with a protein shake full of strawberries. I shopped with my girl this morning. Then, I got to listen to her singing lesson. Now, they watch a movie while I get to write. Then, my little family is off to dinner together.
This week the spring plants that sprouted on 3/3 started to really grow.
The caterpillars that came in on 3/2 have all become butterflies today.
Maybe we all used the same period to try to transform a little. Nothing like a few new butterflies to remind you about new beginnings.
I am focused on this journey now. I may falter along the way, but I will hold true. This feels right. This feels good. And when I feel right and good, it is much easier to remain
I always hated charades. I stunk at it. And I still do.
I would have made a rotten mime.
Forced down time.
That’s what surgery brings.
This time it brings silence as well- for at least the next 5 days.
I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me. I mean, ignore it in the sense of not writing about it too often. Of course, I’m not foolish enough to ignore it…
It was last spring, right about this time that I started to feel a little hoarse. I blamed it on spring allergies. Except it never went away.
It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.
Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.
I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway. So – I find its best to pick a good surgical record to start. Negative, or realistic? You can decide for yourself.
The first appointment I met the speech pathologist and the doctor. Both took baseline screens. I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side. I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.
Healthy image
But, first I was sent to vocal therapy. And while I scoffed at the idea, I know now how valuable the experience was. I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech. But somehow for me, it was a tougher pill to swallow. At first.
I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016 And then there was a quick entry here Laugh Out Loud – November 2016, Basically, the therapy helped enough to reduce the swelling, and reveal more issues. In October I was told definitively that surgery was in the future plan. I was told to continue to practice what I had learned in vocal therapy. I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises. I continued Vocal Therapy through December. It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time. Not too bad for a few months of modifying something I’ve been doing for 42 years!
The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice. We got in a routine, as you do when faced with a new obstacle. There is no other choice really, because as my friend says, we just “keep swimming.”
The plan was for me to return to the doctor in early April to set up surgery for the summer.
Except plans change. And it was getting a little hard to breathe. I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.
I called the doctor to move the surgery up. We set February 20th as the date. Sometimes I just have to trust my instincts. Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd. And for a hot couple of moments I entertained February 17th. Except that “Jeans for Rare Genes 3” was set for February 19th. And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.
January 31, 2017
I headed to see the doctor on January 31st and he found a new problem. There was now a very large polyp extending over the vocal cords. It was big and it had not been there in October. I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign. I liked the odds, but still he agreed waiting till the summer wasn’t a great plan. We settled on a surgical date of March 3rd. Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.
Over the last few weeks I felt increasingly short of breath during mundane tasks. I stayed calm. I decreased my daily activity and moved a little slower. I knew we could make it, and we did.
So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery. I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.
The surgery went as surgery does. It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room. I don’t get lost anymore and anticipate their words and requests. It’s odd, and a bit strange this job of #beatingcowdens. I walk dutifully to the OR and get settled under my warm blankets. I expect the IV, and the burning of the anesthesia. I know the mask will be the last thing I remember before the recovery room.
And its amazingly less nerve wracking when the surgery is for you and not your child.
So the biggest polyp had increased drastically in size since January 31st. It’s gone, and so are the other issues. We wait on pathology and a follow-up next Thursday. I’m on strict voice rest until Thursday at least, which requires me to really isolate. Talking to my family is reflex. And as I said before I stink at charades.
Before – 3/3/17After 3/3/17
So we carry our phones. I put my fitbit on rest. It’s off an in a drawer. I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils. I’m organizing my brain- a little.
I’m trying not to get ahead of myself. I’m trying to address one day at a time. This is not my strength. It is in my long term planning that I strengthen my resolve and focus best on
#beatingcowdens.
For now it’s been about a day. I slipped on about 20 words total. Not great, but I never claimed to be perfect. The funny thing about talking is you don’t realize how much you do it till you can’t.
The laughing is even harder. My husband is funny. It’s one of the things I love most about him. How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh? I’ll hide from my biggest blessings a few more days. #gratitude
We were worried. Attendance was at an all-time low. We had picked a bad weekend, but it was too late to change it.
We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.
It took a whole lot of record keeping, but it was worth it.
We had an “Early Bird Special” and free T-shirts. We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.
After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.
We received so many generous donations that were accompanied by, “I wish I could, but..”
We received so many well-wishes and positive thoughts from genuine people.
But, in the end we were looking at attendance numbers far lower than last year.
We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.
Meghan and I wrote out and carefully planned what we wanted to say.
She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.
But, as late as that morning the text and phone calls kept coming from people who could not make it.
We walked into the room anxious. Not sure of how the day would go.
We should not have worried.
What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.
They were from all areas of our lives. There were family. There were lots of cousins. There were friends. There were colleagues. There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional. There were friends of friends. There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.
There were 42 raffle baskets, and a 50/50. The money generated just from those two things was mind-blowing.
There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.
We laughed. We drank. We ate. We talked. Kids danced with balloon creations. There were musical chairs and fun. There was pure love in the room.
When Meghan and I spoke there was silence. Attention. Focus.
Cowden’s Syndrome is understood by this crowd, because of us.
And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.” She “put Cowden’s Syndrome on notice.” She told it, it was time to “keep up with her.” She’s got things to do. Places to go. People to see. She’s growing up right before my eyes.
Not long ago she was a scared and confused 8 year old. Now she is a wise, and mature beyond her years, 13-year-old young woman. She wants the PTEN Foundation to flourish. She wants research, a patient database, and even a cure. She’s 13. There is time to get it right for her, and all the young ones being diagnosed after her. She has drive and ambition.
She chose a song to end her speech. She chose “Let it Go” from Frozen. She toyed around with a few songs, but this is the one that spoke to her, at this moment. This one got to her heart. And you could tell, as she belted it out acapella.
In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.” They said this one was “the best yet.” We felt loved and full of gratitude.
And as we sorted through the finances, we were struck with something amazing. Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation. This love, this event, these people, the generosity of so many, had generated an amazing amount.
Our hearts are full of gratitude.
A donation of over $12,000 to the PTEN Foundation. Because of you.
Thank you for valuing a cause that matters so much to my family. Thank you for loving us. Thank you for supporting us from near and far. Thank you for your never-ending generosity. Thank you for your prayers and good wishes.
I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.
If you love someone, prove it every day. It’s not about the big things. It’s about the things that matter.
Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…
My husband and I decided years ago to exchange only cards on Valentine’s Day. I already know how much he loves me. We do what we can to get a little something for our girl, well, just because. And we, we try to get organized and celebrate our anniversary. The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.” Because those vows – they matter so much.
Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work. I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.
I will return in time to have parent conferences at my daughter’s school.
Not a “romantic” day by any means.
I will wear a red shirt that says “Strong” and I will make it work with a smile.
Because, I will be thinking of this heart.
Last year in January, my Grandfather fell. It was after a trip to the grocery store. We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd. If you know me personally at all, you know my grandparents were larger than life to me. That’s it. They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.
Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time. And, although I’m not totally sure either was aware of the date at the time, we were.
A few days after Pop passed, my uncle sent the picture above. He was cleaning out the linen closet and tucked in between some things was this heart. By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.
My Pop was a man that planned ahead. He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.
Nothing flashy, nothing fancy. But he saw the hearts early, and thought of her. That’s how he rolled. Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.
My newsfeed, and my heart have been full lately, of people struggling and suffering. The prayer list is long. There is pain and sadness and worry. But within, there is also love, and gratitude and compassion.
Life is about balance.
I’d rather spread out the love to last all year. I’ve got plenty to share.
For it is with love alone that we hold each other up.
Love for those around us, and those who’ve gone before, motivates us.
Grandma is still “here” but many of you understand when I say I miss my grandparents. The love though, the love and the example they set is imprinted forever in my soul.
It is with Love and Gratitude that we find the strength to remain
I’m not one for New Year’s Resolutions. I don’t believe in waiting for a specific day to make changes. If they are needed, wanted, or warranted – we make them. Right then. Otherwise, I’m all about just being your best you- every day.
Parenting a teenager is tough stuff. Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.
There are people who would challenge me that we have it easy. They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more… And maybe they are right. I will never know. But, they won’t either. That’s the point.
Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.” There are challenges present in every single scenario that comes to mind when I think of EVERY family I know. In this house we talk a lot. My girl and I, we talk about those other lives we know, and their battles. And we send love and prayers and warm wishes, as they do for us. It’s not a contest, it’s real life.
2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.” It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen” And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.
2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.
Yet, we made it. We came out with a few bumps and bruises, but we made it.
2016 ended with 8th graders we know taking High School entrance and Scholarship Exams. The next weeks will bring jubilation, laughter, and tears.
Yet, we WILL make it- all of us.
The “To Do” list on the yellow pad to my right is busy. The fundraiser is about a month away and there is lots to be done.
There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me. All before February 22. That’s IF no one requires additional testing for anything…
We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.
We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives. It’s a subtle difference on paper, but a HUGE one in practice.
And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings. Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive. I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.
It came up this week when we were preparing for the fundraiser and talking about social media. Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…
Digital footprint – how are you presented on the internet? What if someone “googled’ your name? Now? 5 years from now? 8 years from now before your job interview? The whole concept of this blog has been discussed in depth. Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease. Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis. That’s forever, and its important.
What she does with it, well that’s ongoing. She’s made some pretty dynamic choices to date. Sometimes she feels a bit like she has something to prove- so she does.
She’s been asking me for “snapchat” lately, and eventually I’ll give in. But, I’m one of the mean moms who makes her wait. Instagram is plenty to manage for now.
This week Meghan was nominated as “Inspirational Staten Islander of 2016.”
It prompted me to “google” my daughter. So when I type in her name connected to our home town, these are the first links to surface…
And just for good measure, I switched to an image search. These 5 were on the first page…
Meghan in her elementary school with one of her idols- Borough President James OddoAn old one – when Meghan was named “Hero of the Month” by Child Life after an early surgerySI Children’s Museum Achievement Luncheon AwardRare Disease shirts from the PTEN FoundationOne of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016
And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016
Apparently she has listened, carefully. I don’t know what the future holds for my bright eyed activist. I know she’ll continue to take heat from a few along the way. I also know she’ll find the strength to rise above and press on. Because, that is what we do.
Would she like it is she were named “Inspirational Staten Islander of 2016”? Sure. Will it break her spirit one way or another, absolutely not. Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”
2017 Event Flyer
If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below. The voting takes place like a reality TV show. I’m not sure how valid it all is, but there is a week of lots of voting. It ends January 11th at noon. Apparently you can vote many times before it stops you. And then you can vote every hour. So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.
Regardless of the outcome, life will go on. And we will continue on the same missions we’re on right now.
The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.
I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.
I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.
So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.
My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.
At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?
There is a security connected to living in a state of medical drama. At least you know what to expect.
But, it’s not a place to hang out when you don’t need to.
Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.
And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.
This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.
She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.
We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.
Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.
I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.
I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.
And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.
As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.
Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.
Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.
May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.
I think I blinked, and the calendar changed from October to December. Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming. But, I “lost” the fall in a beautiful way. I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about. Four years ago I could not have imagined she could keep this schedule. She battles for it every day and I admire every ounce of her determination. I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us. Meghan’s appointments begin late this month. Mine will overlap, likely culminating in vocal cord surgery. But, for now, for this moment, I am grateful for this chaos. The hint of “normalcy” is not to be left unappreciated.
Today though, I blocked out some time. Today I needed some time to sit in my office and look around. There are beautiful images on the walls of my office from New York City to Washington state – and places in between. Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours. There are thousands of such images on my laptop and several backup drives. You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum. Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.
“A Few Good Men,” has been far more than a movie title in my life. I was blessed to have 3 grandfathers that shaped who I am. I am equally blessed to say I have had two fathers mold me into the woman I have become. My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between. There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.
My father, well… let’s just say the early years were rocky.
What I know now, but I didn’t know then, clarifies a bunch. Dad, a Vietnam veteran came home lost. The earliest years are peppered with memories that don’t leave “the warm fuzzies.” The years after that hold memories of fun visits. Dad would come by sometimes. There were movies, and visits to the park and the zoo. There were restaurants, and exciting novelties. But, there was not consistency. There were chunks of empty time. There was a lot of wondering.
Contact got more steady in the teenage years, especially after my brother was born. There were more visits, and more phone calls. But, history sometimes repeats itself, and there were years that faded away again.
Later, after high school, and probably after college too, there was more. Maybe I was ready. Maybe he was. I’m not sure. But, slowly and carefully, over years, a relationship began to form. By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.
After my daughter was born, he started showing up more. And I liked it.
Hard times came for Dad, and the restaurant industry finally failed him. And that low for him, was the point our relationship became solid. Nothing happens overnight, but he was here. Close. Interested. Available. He helped pick up Meghan. He came to birthday parties, and dance recitals, and swim meets. He came by for Father’s Day and even celebrated a birthday with us.
It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.
“I have PTSD. Do you know what that is?”
“Yep. I know. (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”
He was stunned. He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder) He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life. 13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior. I was able to pick up from a text-book the reasons why he had shied away from our relationship. I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.” But, in that moment, hat moment when he said it THAT is where I got him back.
I can’t say I remember the day. And I may be wrong on the year too. But, it was sometime around 2009. Finally, he was working on his own healing.
And he worked hard.
We spoke more regularly. Once a week usually. Sometimes it was his turn. Most of the time it was mine. As I struggled through raising a chronically ill child, he became my sounding board. He was my confidant of all things. He was where I went to bounce the tough decisions. Because, life had left him a great listener. Raising a child with a rare disease, means often having to make really tough choices alone. When your disease affects only 1 in 200,000 people, experience with it is limited. When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.
It is hard to hear over and over again that a child is ill. Especially, when it is your child, or your grandchild, or one you love so much. I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart. Dad was the one who could hear it all out. He heard me without speaking. He listened attentively. He offered advice only when I asked, and offered encouragement always. These were not situations where I just needed my ego stroked. These were tough conversations to have, and he never ever shied away from one.
He simply would bring me back to reality. He’d ground me by telling me to use Meghan as my guide. Check on her health, physically and emotionally. Focus. Trust my instincts. Be able to correct wrong decisions whether they are mine or theirs. Still now, three years later I find myself aching for those conversations. She is stronger. She is tougher. She is amazing. But, there are still so many battles to face and so many difficult decisions to make. That’s when I retreat to my office. I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think. I talk the conversation through as if he were here. Because I know he is. I just have to listen really carefully.
Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him. When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time. While I could never profess to connect this to the horrors of war, he did. And I think it allowed him to open up with some of his own stories.
Through those years I heard tales from his mouth I had never known. I heard of battles, and losses and names of people, and places. I listened so attentively. Quietly. As he had done for me. Sometimes I even took pen and paper to write down his story. Because I wanted to hang on every word. Because you just never know.
I found out Dad was sick when I made that Friday night phone call in October 2013. His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn. When I asked him if anyone knew he said he wasn’t too sure. But, he said, “now you do.” And he laughed, as only he would at that moment.
I got to the hospital the next morning and we went through the details. At that point no one knew anything. Confused doctors was a topic we had spoken about at length.
The 10 weeks that followed were just a long blur. There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments. Sometime after that he admitted he couldn’t drive himself. That was a tough day. I had already called in my sister, and it was time to reach out to my brother in Texas. Family meeting. The “team” assembled.
And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.
Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him. No more suffering. No more PTSD. Pancreatic cancer at age 65.
I dialed his number for months after. I still know it in my heart.
I spent the months after he died cleaning out his apartment. Dad was not a man of many “things.” His iPhone held no Email, and only one photo. “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.
As I cleaned I took every single scrap of paper he had ever written on and clipped them together. I laminated them. It was to be the only way we would ever “talk” again. It is Dad’s quotes scattered through this piece.
He loved light. And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.
Dad was, to our family, and friends, a photographer. “Tom” would have a camera around his neck at all times. He took joy out of capturing happiness. He took pleasure at photographing family events, and sharing his photos with everyone. As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images. We sorted out the family shots from the scenery ones. We put up a sharing site for all those family images in case anyone had never seen them. And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.
At some point we will organize an art show in his memory. We will print, and sell his treasures. We will find a place to donate any profits that will honor his memory. We will let the world see what he saw. Dad used that camera lens to showcase the light. To view the beauty in the world. Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.
Dad did not leave us rich with money, or objects. He left us rich with visions and memories. The former keeps you satiated for a little while. The latter can keep you fueled forever.
The last gift Dad left for me, was one I did not see coming. In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart. I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.
Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior. I reached out to every Marine in that list, and if they were still alive, they reached back. Over 20 of them. 45 years later. I grew up knowing Dad had 7 brothers and a sister. I had no idea of the Marine brothers scattered around the country.
I have had the pleasure of meeting many of them. And this past summer I brought Meghan to meet a few too.
Alan was the first to answer my letter. From West Virginia he called to tell me he remembered crossing time with Dad. He researched the story I told him about the incident. He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy. Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.
My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.
I do not know the book this came from, but I found this among his clippings…
My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.
He left thousands of photos. Snipits of his own words, and memories of times that we got it right.
I sometimes always wish that he would answer when I called him on the phone. But, I know. I know that he is flying free. And I know, that while he needn’t be saddled with the cares of this world, that he checks in. That he is nearby when I need him the most.
So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky. When she sees the beauty of the world around her. When she looks for the good. When she keeps her friends list short and neat, I see my Dad. I feel him. I know he’s right there for that moment.
Courtesy of Meghan on a road trip to WV to meet the Marines. Always being guided by the light…
Only when you love deeply do you feel great loss. They all hurt. The oldest to the newest. I can not change the way I love. When I love it is with my whole self. Otherwise, why?
This one hurts differently because it took so long to get it right. But, I rest with the gratitude that we did get it right. And once you get it right, if it’s truly right, nothing before that matters anymore.
You may never know the strength you gave to help us remain
beatingcowdens 