It’s 2015 and the first surgery of the year has been scheduled. February 18th. This year it’s my turn to have surgery over the February break. It seems each year one of us takes a turn.
So while my friends are returning to school tomorrow, counting the days to the February week, I am not quite as excited.
It’s only a vein. A large, painful, varicose vein to be stripped out of my right leg. Large enough that it requires an operating room. But it’s far from the first. My veins are crap. This is almost certainly connected to the PTEN mutation that caused our Cowden’s Syndrome. My veins seem to be a generation less severe than my girl’s AVM.
I had the first one stripped in my early 20s. Before I knew of Cowden’s. Before there was Meghan. The next 2 were done in the years that led into my early 30s. Then 4 years ago I had 5 done through an in office procedure at NYU. There they were just “closed” and not removed.
Maybe they are sped along by a life that requires so many hours on my feet. Maybe genetics have sealed their fate already. Not a single doctor I have seen has ever claimed to know for sure. And that’s better. I hate when they guess.
I sometimes wonder when I will run out. I wonder how many they can close off or take out before…
They just keep telling me the ones they are taking out are already broken. Backflowing. Not doing their job anyway.
Doesn’t keep me from wondering why they keep breaking. At 41 I do wonder how this bodes for the future. But, it’s one of the things I have consciously chosen not to research too much. Because I can’t control it.
I have tried compression stockings, and I wear them when the pain and pulsing gets really bad. But, I hate them. And a religious stint of wearing them a few years back saved me nothing, and caused me to be very angry. All the time.
They are not nearly this glamorous. Trust me.
So for now, it’s the last thing I feel before I close my eyes at night. It is the first thing I feel when I open them in the morning. It is the reason I often keep moving, because the resting makes me more aware of them.
The pain, the pulsing, the aching is maddening. But it certainly reminds you you’re alive. And, as cliché as it sounds – it reminds you that it could be worse. Much worse.
Our vascular issues in this house, (although Meghan’s still terrify me,) have been confined to lower extremities. And I flash to our friends in Australia whose 20-year-old fights vascular malformations in her brain. Over and over and over, with a resilience in mother and daughter I marvel at.
Perspective. It’s all about perspective.
Meghan has 2 appointments coming. One is a follow-up for her vascular surgery in November. The other is with her endocrinologist to try to tease out the continuously unbalanced thyroid hormone levels. I have three in February – before the surgery.
It’ll be a busy winter.
So glad we chose to distract ourselves from ourselves with the “Jeans for Rare Genes” fundraiser. Always good to keep it focused somewhere else.
Good lessons that I teach my daughter. Good lessons I will remind myself repeatedly when I am tempted to rant about another stint in the operating room.
Better me than my girl. And it could always be worse.
Maybe we’ll have a different countdown to the February break. Maybe we will count down until February 15th – the date we hope to raise enough money to make a difference in some lives. The rest of the week… we’ll skip that for now.
When I started this blog just about two and a half years ago, it was to serve as therapy for me. It took a while before I even started linking my posts to facebook. I didn’t pay much attention to the stats of the blog, except to occasionally marvel at the random countries my blog was being read.
This week while searching the year that was, I happened to notice that this little blog has cleared over 100,000 views!
Stunned. Amazed. Humbled. Grateful.
I think of the people who have reached out to me through this blog. People looking for an ear, or a point in the right direction. I think about the newly diagnosed who have come my way a few times, and have been relieved to learn everything can be ok with Cowden’s Syndrome.
I think of the blogs I follow, of people with and without Cowden’s, and all I have learned. Most especially that WE are not alone.
I think that spirit of companionship, whether it comes from a country across the world, or a city nearby is a factor in what motivates me to keep writing.
But, mostly blogging is my therapy. My free therapist. The computer is my listener. Where I can air my thoughts and ideas, and worries and hopes and dreams. And then I can edit myself into the positive mindset necessary to press on. This blog keeps me away from the negativity and the despair that can sometimes accompany this life.
And yesterday as I recapped “The year that everything broke…” I was reminded of all the blessings that came our way in 2014. And despite the lows, there always seemed to be someone, somewhere, with some random act of kindness, who was able to help us turn things around. For all of these people – and they know who they are – accept my gratitude, OUR gratitude. For really this is our story.
Although I am not much a fan of “New Year’s Resolutions,” or proclaiming that things will be drastically different in the minute it takes to pass from 11:59 PM on December 31st to January 1 at 12:00 AM… I wanted to highlight some of the positive things that have gone on for us in 2014.
We began last year, much as we will begin this year, preparing for Rare Disease Day. In February there was an assembly at my school. We gave out ribbons to all the students. Meghan and another family, two dear boys who had been affected by a different rare disease spoke. They opened some eyes that day.
And in the midst of that assembly Meghan met Borough President Oddo. The two struck up conversation like old friends. Meghan immediately respected and admired him, and he has become a mentor of sorts. They are in Email contact, she has been to Borough Hall to visit a few times. He was really the impetus behind Meghan believing there is no limit to the difference she can make in the world. He continues to encourage her as she plans Beating Cowden’s First “Jeans for Rare Genes” fundraiser on February 15, 2015. I feel so fortunate for her to see such a positive role model who changes the lives of so many just by being himself.
Meghan chatting with Borough President Oddo!Meghan’s friend has been a great support in so many ways.
We had a fundraiser last year as well, and raised several thousand dollars which was donated to The Global Genes Project. Satisfaction. “For the babies who really need it, Mom.”
In February also in the midst of what was almost a train wreck around a bad snowstorm and a carefully orchestrated thyroidectomy, I frantically called in desperation to get us into NYC the night before the surgery. Ultimately we ended up with the greatest gift, as we were privileged to spend a few hours at Ronald McDonald House in NYC. The facility, the employees, the organization – all phenomenal. Our Guardian Angels were active that day!
Our Room
Meghan received some awards this year that made us very proud. In the Spring she was selected as “Staten Islander of the Week.” At graduation, she received the “Portrait of Courage” award. In the summer she received a nomination from the Global Genes Project for their “Teen Advocacy Award.” On my birthday she received a “Kid of Achievement” award from the Staten Island Children’s Museum. She was starting to get the idea that SHE can make a difference.
Meghan 2014 Nominee for Global Genes Project Teen Advocacy Award2014 Kid of Achievement – Staten Island Children’s Museum
In July the Borough President’s office arranged for Meghan to throw out the first pitch at a Staten Island Yankee game. And this girl who had never thrown a ball before received a crash course from some great friends. Not only was the pitch a success, but the number of friends and relatives who joined us at the game, wearing “I love someone with Cowden’s Syndrome” T-shirts, was beyond touching. We are loved.
August saw the overcoming of a lifelong fear of roller coasters, for both of us.
And in the fall we saw the first glimmer of hope that Meghan’s dream for a denim ribbon necklace was steps from being realized. Exciting times all around.
It looks like it will happen- SOON!
We capped the year off at the Stone House at Clove Lakes, with another family with a different rare disease, lighting their Christmas Tree to help raise awareness of rare and genetic diseases. Meghan’s intermediate school chorus came out on that chilly night to support the cause.
Meghan and Uncle Chris at The Stone House
So Cowden’s Syndrome, while it creates more than it’s fair share of heartache and obstacles, also creates opportunity when we look for it.
Just like we notch off and remember each surgery, and the milestone of overcoming the recovery, we also acknowledge, enjoy, and savor the positive milestones.
We remember that “everyone has something.” We are grateful for the blessings in our lives. No one’s life is perfect, and far too often we all suffer from the belief that someone else’s “grass is greener.”
May each day hold for you enough positives to counteract the negatives, and the ability to look for the good in all situations, people and places.
That is my wish for my family and friends near and far, not just for the new year – but for every day of your lives.
One of those multiple meaning words that seems to get tossed around a lot this time of year.
Reflections for me are necessary as a part of who I am.
As the new year approaches, I find that I hear the same sentiment over and over. “2015 Will be a (great, better, good, fabulous…) year.” Often I hear people say, they are “due,” and it’s their “time,” or their “turn.”
And that’s not to say I don’t know countless people who have suffered gross misfortune. And it’s certainly not to say I don’t wish them all a break. It’s just I’m not sure what difference a minute makes, really.
I am reminded of the conversation I have with my youngest students several times a week. December to January is a matter of a minute. One to the next, and the calendar changes.
I guess it’s none of my business this notion that the new year will make things better or different. But, I just don’t really buy it.
I like the idea that the year starts over again. I have always liked that about teaching – the ability to start fresh every September. But to me that is a more authentic change than New Year’s Day. At least in school it IS a new year, new schedule, new students…
Maybe it’s the fact that the last few years feel all drawn together in my mind. And they haven’t been all bad. Just quick. Fast-paced. And maybe a little tiring.
Truth be told, though, there is no real indication that 2015 will be any different from 2014, or 2013, or one of the rockiest of them -2012. The change of month and year will not alter many of the things currently set in place. There is Cowden’s Syndrome to fight. There are relatives and friends struggling with health issues. There are things that just are.
But, what will remain the case in 2015, is currently the case right this moment. I will wake each morning, put my feet on the floor and find something good to focus on. I will shake off the pain. I will be a role model for my girl. I will eat the most nutritious food I can find, and share my passion with whomever will listen.
I will question doctors. I will question everything and get the best care I can for my girl. I will adore my husband, and love him the way he loves me. I will follow the lead of my daughter and strive actively to help as many people as we can. I will work on staying calm, and not sweating the small stuff. Because that is how I get through every day. All year. And some days when we are very tired, we will just be. And that’s ok too.
Although, I’m not beyond reflecting on the last 12 months, in the year we often dubbed “The year that everything broke…”
I spent January sorting through my father’s apartment after his death in December 2013. It was a whirlwind that ended December 4, 2013, when he passed from a battle with pancreatic cancer, and the carry over was evident in my dining room for the early part of 2014. I made phone calls, wrote letters, and did what I could to address inquiries and settle affairs. And still a year later there are pictures to be sorted and water marked… soon.
In February Meghan’s thyroid finally gave out. And was taken out. In the middle of a huge snowstorm that led us into the Ronald McDonald House in Manhattan the night before. And we spent a few weeks with the largest part of the recovery, which included a medication reaction and another overnight hospital stay. Almost a year later her Synthroid dose fluctuates every 6 weeks and doesn’t seem close to being regulated.
Trying to distract the pain away.
There was the identity theft that targeted me in March and got right into my bank account. There were headaches, and police reports to follow, but they had nothing on the fraudulent tax return we learned had been filed in April. Hours and hours, and months of waiting. We have it all fixed. Almost.
The spring was a constant juggle of pain. An indicator that the thyroid removal had altered the balance in the body as far as I am concerned. That theory was further confirmed when Meghan spent a week in the hospital in May with severe gastritis. It was the culmination of a spring where things just seemed to be getting worse. We met a gem of a gastroenterologist who was able to settle a few things, but after an endoscopy we left with news of severe esophageal damage. Her medication was blamed. The same one that had been helping us manage her constant pain, and had been diffusing the activity of the AVM in the knee. We also left with a diet exponentially more restrictive than the one she was already on. Ironic maybe that the fryer we had, had broken the night before we went to the hospital. We certainly didn’t need THAT anymore.
And then we said goodbye to the Saturn. The 1996 Saturn that was the “extra” car that was so handy to have, was towed away in the spring after a few failed attempts to fix what surely was the start of a failing transmission. We are a one car family for now.
Even in the “happiest place on earth” Meghan’s stomach “broke” again. Scaring the heart out of us, causing a visit from a Disney doctor for which I am still trying to coordinate payment from the trip insurance company. Fortunately it didn’t derail our trip. But, it reminded us that everywhere we need to have our guard up. Everywhere.
And our Allie Girl in July had 5 teeth pulled in quite the procedure of a surgery. It didn’t take her long to start eating again, but my nerves, and my visa were permanently affected.
There was the pool that kept having a “little” leak. Until it was consistent enough that we left a hose in the pool. Until I finally bit the bullet and called for a leak assessment. And just like that the pool was being emptied for its liner to be replaced. At least it will be ready for us in the summer.
And the bay window. The one that developed some dry rot after a call to the window company 2 years ago led to a ton of red tape. By the time they came to see if the damage was covered it was too late. And just like that we were replacing the bay window we had put in 14 years ago. And once you cut a hole into the wall… It was like a bad version of the book “If You Give a Moose a Muffin…” Almost the whole house got painted as Meghan moved her room upstairs, and we cleaned and sorted and purged…
The very end of August my Grandma, Dad’s mom, had a stroke. And we hoped and hoped that it would get better. We visited, and chatted, and spent as much time with her as we could. And she went from the hospital to rehab, to the nursing home, and declined every step of the way. She remained pleasant and agreeable until she passed away October 22nd – less than a year after we lost my Dad.
The first “great-grandchild”
Early in September Meghan fell and there was a stress fracture in her foot just in time to start 6th grade and a brand new school.
And in the fall the washing machine gave up, and a new one found its way into the basement.
In November Uncle Jerry, my Dad Ken’s brother passed away. Just shy of 60, he was taken way too soon by cruel cancer. GGPa, his Dad, was taken from us in June of 2012. Too close. Too much. Too sad. Just wrong.
And as I traveled home from the funeral in Vermont I went to pick Meghan up at swim practice. And as she walked out of the locker room she collapsed. The pain in her knee was too much. Emergency surgery the next day at Lenox Hill revealed a pea size hole in the artery of her right leg at the AVM. And what we saw coming 6 months prior when she stopped the medication because of the gastritis had happened. The AVM was back in a foul mood. 50ccs of blood drained from her knee joint. After 5 procedures in there, at only 11 the knee will never be what it should be.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.
We spent Thanksgiving at home, just the 5 of us. Felix, Meghan and I, and Allie and Lucky. We decorated for Christmas, while Felix made a fantastic dinner. And it was ok to be housebound. Together.
There had been too many funerals this year. Too much loss. In my immediate and extended families, and the families of friends. We needed some time to enjoy our innermost circle of 5.
By that time memories of my Dad’s passing a year earlier were taunting me. Maybe I looked the other way at the earliest signs that Allie didn’t feel right. Maybe it wouldn’t have mattered. But, we got home from celebrating cousin Kim’s wedding, and it was evident that my Mom was even worried about Allie. A walk the next morning with Felix where she gave up mid way prompted a vet visit that Sunday. After x-rays of her belly that were inconclusive, and some medication for pancreatitis that we were pretty sure she didn’t have, we took her home. We diligently gave her medication and prepared chicken and rice as directed, but by Tuesday she wasn’t eating. And THAT was NOT like her. So I took her back on Wednesday hoping for a new medicine and grossly unprepared for the vet to tell me it was time for her to be put down. So in between tears I gathered my family and waited. I held Allie for hours while I waited for them to arrive so we could all say goodbye together. December 10th we lost a good friend, and a key player in our family of “5.”
I ended the year breaking the vacuum the day before Christmas Eve.
And as I sat to reflect I remembered that still in the chaos that sometimes ensued, never were we to be defined by Cowden’s Syndrome. We are to be defined by other things. The ability to; persevere, love, lose, cry, laugh, sing, smile, appreciate, endure.
Because you see Cowden’s Syndrome is with us every day. Of every year. For the rest of our lives. But it can not BE our lives.
However, it has taught us some good lessons. Life changes quickly. If you aren’t paying attention you might miss it. Don’t be complacent. Ever. And be as prepared as you can while never making firm plans. Cause life is not designed for “firm” plans, but better suited for goals.
And don’t wait to make those goals. Or to carry them out. You don’t need a new calendar, or a special occasion. Just do it.
Treat each day as a gift. Be the best YOU that YOU can be, all the time.
Be honest. Don’t be afraid to love deeply. The pain of loss is horrendous, but without that ability to love deeply there would be a good deal of much needed compassion missing from a world that is already struggling.
The best thing about reflections, is they encourage you to continue onward…
Although there is some debate on that, I stand with Billy Graham.
We lost our Allie Girl today. And just when I thought there couldn’t be anymore sadness, our hearts are broken in half.
Allie found us. Rather, she found Felix, in August of 2007, when PLUTO Rescue did their events at Petsmart. It was August 4th, Felix’s birthday, and we stopped in just to grab a bag of food for Lucky. Meghan and I walked through the aisles enjoying some of the puppies around for adoption. Ready to leave, I asked, “Where’s Daddy?” And there he was, knee to knee – eye to eye- with Allie. “This is the dog I was meant to have,” he told me very matter-of factly.
Just a week or so after they met.
I came up with a litany of reasons why a second dog was a bad idea. ( We already had Lucky)
“What if they don’t get along?” (Solved in 2 seconds flat when they met outside Petsmart. They were fast friends.)
“We are having company for Meghan’s birthday next week.” (They offered to delay the adoption 2 weeks.)
“Our yard may not be big enough.” (We passed the home visit with flying colors.)
“We don’t have the money right now _” (I was grasping. The fee was so reasonable. And they offered to postdate the check a month.)
I lost.
But I won.
Big time.
Allie joined us on August 12, 2007. The guesstimate for her age was three. I suspect that was conservative. She stepped into our home with none of the puppy nonsense new dogs cause. She was trained, didn’t bite the furniture, or pee on the rug. She needed a little tiny training to settle down with her food. Easily done. And she really was the perfect dog.
Allie waiting until Felix wakes up
She was Felix’s dog from the get go. No matter where he went she followed. She slept on his feet at the TV at night. She waited for him on the weekends if he slept in. She sat at his feet when he whistled. She greeted him at the door. She knew it was he who had freed her from the cycle of adoption and fosters, and found her her forever home.
Her “tough” side – much like Felix’s, was put into check with the right love.
I took a bit longer to catch on. It took a few baths, and some nail cutting, and adjusting to calls from the groomers that they couldn’t service her. I had to understand her, her abandonment, and her need to trust again. Once I “got it,” we did just fine.
Mostly I fell in love with Allie because she loved my Meghan. I can remember nights, and there were so many sleep deprived nights, that Meghan would wake crying, and if we didn’t hear fast enough, Allie would come and get Felix and I and make sure we took care of her. She became so protective of Meghan – from “hide and seek” to watching her in the pool, to not resting until Daddy dug her out of the snow bank, Allie knew Felix was her master, and protecting Meghan was her purpose.
And how could I not love the dog that loved my two favorites?
Meghan, being without siblings, took to the dogs as her “furry sisters.” She always used the number 5 to represent her family.
And when she was sick, or hurt, or recovering, as she so often was, Allie was loyal and attentive always.
Being sick is the pits. Having Cowden’s Syndrome is horrendous. Having a dog or two to love you through it – definitely a bright spot.
There were so many nights. More than can be named. So many nights of tears and frustration and sadness and anger. Soothed by the love of a dog.
We love Lucky. Very much. But we always said Allie made Lucky a dog. Allie turned her in the right direction. Made her less neurotic and more normal. They were sisters. A good pair.
Cowden’s Syndrome just got a little harder to swallow.
Life just got lonelier.
Allie got sick fast. Maybe a few weeks of not being quite right. And a few days of really being laid up.
We took her to the vet Sunday. It looked bad. I took her back today. It was over. Her belly was full of fluid. Even without eating – 2 pounds heavier than Sunday. They didn’t offer to do blood. Or treat.
“This is it,” the vet said.
And Meghan and Felix came, and we sat as a family. And we said goodbye together. We hugged, and held, and loved and cried. Then we left.
Our world, and our lives forever changed. Richer for our experiences, more painful for our losses. For only those who love deeply, can hurt.
Thank you Allie.
Hopefully Grandpa Tom finds you. You two always got along. Cause I firmly believe I’ll see you both again.
Last summer we invested in a new roof for the house. I’ve never regretted it. Truth be told we had no choice. There were leaks and dry rot. All sorts of potentially serious places for significant damage. Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively. But we’ve stayed safe and dry. I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.
The weather forecast this week is pretty awful. And I started thinking about how, “into every life some rain must fall.” And I started to wonder, whether maybe we’ve actually had enough rain.
Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days. And life, well it can get dicey and complicated even without Cowden’s Syndrome. This year has been wild. Full of so much sadness, and hurt, and sorrow. And in between there peeked in some fun, happy times.
This month has been tricky.
These last 2 weeks….
I’m really starting to think it might be time to consider an ark. I’m not wallowing. Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow. Just, wow…
Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee. The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way. Thanksgiving weekend was spent home. Low key. Leg up. Resting.
We had goals. All geared towards December 8th. Goals set by the medical team. Swim practice was to begin again tonight. And Mom, FYI – goals are different from plans… 🙂
We slowly weaned off the crutches, and the pain medicine. We moved to an ace wrap as needed. By last Monday the 1st she went to school still in pain, but unassisted. The swelling was going down. The healing had begun.
But by Friday she couldn’t do it. Had to stay home because of the pain. The swelling looked a little off too. More rest.
Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.” The knee looked horrendous. And very similar to its pre-op state. More resting. Some pictures. Some brainstorming.
ER 11/24Living room 12/7
All the while Allie, our oldest dog was having troubles of her own. Allie, lethargic for a bit – collapsed on a walk. Felix called me to pick him up carrying 70 pounds of dog. Off to the vet for abdominal x-rays and a negative test for pancreatitis. There was no discrete mass of the x-ray, just some shadowing. They decided to try to treat for pancreatitis despite the negative test. There aren’t too many other good options and I am worried.
And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.
And we took pictures of Meghan’s leg and elevated the knee.
Today we got up early to give Allie her medicine together.
Then Meghan dragged her painful, aching leg around school until I could get us an appointment.
1:30 arrival at Lenox Hill. Sonogram initially showed no blood. Then, wait for it…. there it is. But no obvious spot its coming from. Shocking really. Could it be residual from the procedure two weeks ago? It looked to be about 5ccs. Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out. Now all of a sudden – we’ll just wait and see.
They used words like “discomfort,” and “irritating.” She used words like, “excruciating.”
Not the first time we haven’t seen eye to eye. But he’s all we’ve got. One of very few doctors in the north-east to operate on these in kids.
I get not racing back in. I do. But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.
Wrap it. Elevate it. Put swim off another week. (Tough talk from the guy who initially said she wouldn’t even need crutches.)
In the car Meghan told me to get my Christmas shopping done. Just in case. She hopes she’d wrong – but it doesn’t feel right.
My money’s on her- and it’s a bet I hope to lose.
Allie, she’s super mushy. Who knows?
Online shopping here I come.
I’m done with the rain. Really over it. Rainbow anyone?
It’s always a good time to be grateful. Especially Thanksgiving week with catastrophe averted. Even full of memories from a year ago, I feel gratitude.
Just a week ago I wrote a post called “Plot Twist”
where I mentioned the AVM in the knee was starting to become a problem.
One day I will learn to trust instincts. I will look back on signs and think – I should have seen that coming. But, for now I remain a bit of a slow learner.
See, in May when we ended up with the gastritis mess, there were warning signs. For days prior she spoke of the “fire” in her throat. Of this general feeling of being unsettled. And then everything broke down.
Monday was not the first time in recent weeks she had complained about the knee.
In August, about three months after we stopped the Celebrex, there were signs. Subtle signs. We went for the MRI. We went for the visit. The doctor saw “something,” evidence the AVM was still “live.” He told her to wait until there was pain, and then come see him. Our appointment was for December 1.
The pain has been progressive. But, right or wrong, having a rare disease, and living with a child who has one too, I often have on my “suck it up and let’s go” personality.
“Mom, my knee hurts. I think it’s swollen.”
“Yes. it’s a little swollen, but mine is too. You’ll be ok.”
“Mom, my leg is throbbing. I can feel it pulsing.”
“Mine does that too – here, feel. Now let’s go – we have to get to school”
Ok, so looking back, perhaps these are not normal conversations. I am in consultation with a vascular surgeon to address the messiest of my leg issues – as soon as I can fit it in. Maybe most parents would have been more bothered. I mean I WAS bothered. But, if I stopped every time – goodness, we’d never even get out of the house. If I addressed every pain – I’d give this disease more power than I’d like it to have.
So for now, we “suck it up” together. Different. But the same.
We talk about other people’s pain. We wonder about different types of pain. We think about what it would be like if the pain could be fixed. We wonder about kids who use pain as an excuse. We acknowledge that you can never know what goes on in someone else’s body.
So we adopted positive thinking and visualization. She drew a smiley face on that knee to convince herself she could get through it. And she pressed on.
Sunday, while I was in Vermont, she was at a swim clinic. And Monday, she finished an hour and change of practice. Walked past me smiling. Walked out of the locker room and basically fell to the floor.
I did some more of my “suck it up” talking, as my heart sank. This was the real deal, but we were too far from the car. Everything about her body language told me we were in trouble. I finally, by Grace alone got her into the car, and headed immediately to urgi care. We lasted about 10 minutes there before we were booted to an ER. The leg was getting frighteningly larger by the moment.
The knee with the AVMThe “good” knee
My gut. My instincts told me to go to the knee surgeon. So we threw a bag together and got to Lenox Hill Hospital on 77th street.
After I got them to page her doctor, we immediately were notified we’d be admitted.
When we got to the room at 4:30 AM the tell-tale “NPO” (nothing by mouth – for any surgery rookies) was on the door. Can’t knock the kids timing. I knew he operates Tuesdays.
The team arrived mid morning to assess. They set her up for 1 PM surgery.
“That’s blood. And it has to be taken care of now.”
Ok – show me where to sign.
Blood and joints don’t mix. Not without consequences. This I know from experience with this child.
Get it out.
And as I waited… that awful waiting time… my mind wandered. I thought about her swimming, and the time she is trying so hard to beat. I thought about how much harder she’ll need to work to get it back together. I thought about it being unfair. And I thought about a mom in California whose extended hours on the phone to me as we were panicking and newly diagnosed were of such solace. I though of the hell her girl has gone through. Over and over. Then I thought about my internet friends in Australia. One young lady who had her thyroid removed AGAIN. Yep – two partials, and then one side GREW BACK. Unfair. Then the ultimate lesson in unfair in the countless brain surgeries, 10, 12 hours at a clip for a young woman with a similar vascular condition to Meghan in a much more dangerous place. I thought about her life on hold. I thought about her recent surgery derailed as they discovered multinodular goiter on the thyroid. I wished I could have tea with them. Right then. To talk to someone who does this. This hospital thing. This surgery thing. Like its their job. Cause that’s just what we do.
And there are no contests. No one has to have it worse. No one makes you feel like it’s not important. This just is our life. This is life with Cowden’s Syndrome. Beat it. So it doesn’t beat you.
And when they came to get me, to tell me she was in recovery, they told me they drained 50ccs of blood out of that knee-joint. Apparently there was a hole about the size of a pea. It got plugged. A fast flow leak. They hope that’s all of it.
This is about 50ccs of water – roughly the same amount of blood that filled her knee joint.
Flashback to 2012. Last surgery, when the doctor was so unsettled that there was ANY blood in the knee-joint that he told us about the damage it could cause and sent us to Boston for a consult with a doctor who could scope the knee-joint. And we went. But we never went back. Things got better. We started Celebrex a month after that surgery in 2012. That was number 4. Number 5 was yesterday.
In 6 weeks we’ll go back for post-op. We’ll talk about whether things are better. There is someone in New York, on his team, doing that scope now – if she needs it.
In 6 weeks I hope she’s kicking some serious butt in the pool. I hope this is a memory. An update in the growing medical file.
Sometimes the only option..
This is life. This is life with Cowden’s Syndrome. This is our life.
Everyone has something. And yes, it could be worse. But right now, at this moment – we are tired. And that’s OK too. I am emotional, remembering a year ago today we admitted my Dad to the VA hospital that he would never leave.
Thanksgiving will be quiet tomorrow. Just the three of us. And reflective. This week is going to be wracked with emotion.
For tomorrow, I’ll take the fact that my husband makes a mean turkey and a fantastic Gluten Free stuffing as a win.
The little things ARE the big things. We ARE BEATING COWDENS!
Yesterday afternoon began very typical of so many of our days. I left work, got Meghan at school, and instead of heading home we headed to 60th and 5th for a doctor’s appointment.
Trip to Manhattan, not a problem. Trip IN Manhattan – super high stress.
Felix met us and I was able to let Meghan out of the car to endure the extra 20 minutes needed to get around the block to the parking garage I had printed a coupon for. Silly as it may sound, that advanced planing has saved me hundreds of dollars – as our bill yesterday alone was a meager $35 for the lot as compared to the $63 it could have been.
Inside we filled out tons of paperwork, Meghan and I as new patients, and Felix in for his one year follow up. It was the first time we’ve actually had an appointment as a family.
Last year we ended up with this doctor for Felix after a skin biopsy went bad locally. It took weeks for me to obtain less than favorable results, news of unclear margins, and the potential wait of several weeks for a repeat excision. I promptly transferred the biopsy slides and all information to a cancer specialty center in Manhattan and we met our doctor. She had the slides reviewed and told Felix that not one, but BOTH sites biopsied needed further attention. She took them to clean margins and ultimately diagnosed him with “Dysplastic Nevus Syndrome.” He had been fortunate. Precancerous lesions cleanly removed. Annual screening from then until forever.
This year Felix squirmed a bit when I talked about his follow up, but I knew if we could all be connected to this doctor it would be a win all around. Little did I know the scope of the score it would be.
Meghan, now with not only Cowden’s to raise her skin cancer risk, but also the genetic “dysplastic nevus syndrome” potentially inherited from her father, needed a dermatologist in place for annual screenings – ASAP. And for me, well, it was something I had been doing, but not with someone too good. Time to ratchet it up a notch.
The doctor was amazing.
She immediately made Meghan feel comfortable and valuable, and spoke with her at length about the presentation of Cowden’s Syndrome she had experienced. My daughter is incredibly empowered about her own health and held a 10 minute conversation quite nicely. While I filled in a few gaps, the doctor told us she had worked previously at the NIH, (National Institute of Health,) and the NCI (National Cancer Institute) and was therefore, aware of Cowden’s Syndrome. That alone is a rarity in our world.
But she took it much farther than that. She wanted to know about the disease presentation in me as well. She wanted to know how much had gone on before and after diagnosis, and how difficult of a path we had traveled to try and find knowledgeable doctors. She was in constant thought, wondering about what she could do. She spoke almost immediately about training her peers to be the front lines in screening for Cowden’s Syndrome, and how if they could identify classic marks like the trichilemmoma she removed from my forearm, they might be able to raise flags early and help save lives.
Harmless enough, common in Cowden’s Syndrome, she wanted one confirmed though biopsy.Healing… less than 24 hours later.
She wanted to know what we had in terms of screening, and records. What could I send her? CDs? Images? PDF? How fast? She could have my CT scan reread for no fee. Just send everything. (Of course everything is in about 6 inches of binders. So there is sorting and scanning to be done.
What is this http://www.PTENfoundation.org ? She wanted to know. Can she refer people there? What if she publishes in a dermatology journal? Could she list the foundation?
My head was literally spinning – but in a good way for once.
I am going to present on you she said, both of you. But no one has to know its you.
And finally a doctor who ALSO feels this way!
“Can I come?” asks my curious 11 year old.
“Of course…”
And as she took such a liking to Meghan she asked me who was managing her care. When I said, “me.” She was visibly bothered for me.
Someone should be looking after her. Let’s think about what she needs. And with that she rattled off doctors to handle things I couldn’t get my local doctors to address with a ten foot pole. She told me I’d hear from her this week, and from some other doctors too.
I left with three negative exams, 6 months for me and Meghan, and a year for Felix. I left with my belly hungry and my head racing.
Was I dreaming? Had I really finally found the doctor to help us?
No one should have to travel your path alone, she said. You need help navigating.
From her lips to God’s ears. May she be true to her word.
In the mean time I have quite the homework assignment.
So as I sit with my “eventbrite” window open, excitedly hearing the “dings” of attention out February Fundraiser is generating – I am going to get started on perhaps the most important homework of our live
My friend in Australia reached out this week. My “blogging buddy” sensed the silence meant things had gone awry. Continents away; she knew. She was right.
Writing is my release, my sanity, my way of keeping Cowden’s Syndrome and the fast paced, quick changing world around us in check. Writing keeps me “honest” as they say.
And over the last two weeks there have been things to write about. There have been CT scans and fears, and mishaps. and pain, and hunting down doctors and bickering over erroneous bills. But, for the last few weeks most of those things have taken place hastily, in transit. I had some place else to be.
On Wednesday I got the call that Grandma Gen had died.
And as I sit here more than 48 hours later, I am sure it hasn’t sunken in. Not really.
Even as I look out the windows at the changing leaves, and I am brought back to last October, as Dad was getting sicker, quickly, I can not really process.
Gone too soon…
I sometimes feel like so much goes on so fast that sometimes the brain just has to protect the heart for a while.
I have an odd connection to numbers, so it struck me that Dad had died on a Wednesday too. 46 weeks ago. And as we approach what was sure to be some challenging anniversaries, my family will gather this weekend to remember again, a life well-lived.
Wednesday was my cousin Christie’s birthday. 23 years old. I so hope that she found her cake. Because Grandma would have never let a party pass without some cake.
Wednesday was my cousin Kim’s birthday too. 30 years old. One to be filled with joy.
I know girls. I really do know. A piece of my heart died forever on that November day, my 18th birthday when we lost Angel Meghan. And last year, on my 40th, Dad and I went to the VA for a really tough appointment. And then to get the legal papers signed. And as he signed he said, “It’s your birthday!” And I said, “There’s no one I’d rather spend it with Dad.” And there wasn’t. And I don’t regret any of it one bit. And in the end, that is what matters. No regrets.
So to my cousins whose birthdays will never quite feel the same I can tell you to focus on the connection. We all got a really strong angel in Grandma – but you girls… well you have something no one else has. I’d love to tell you “Happy Birthday” doesn’t still flip my stomach a bit, but I don’t much like to lie. What I can tell you is focus on the “happy” that was Grandma. Eat your cake. Always.
And Kim. The wedding will be December 6th. The shower is tomorrow. So compassionate. Not just to Grandma, but to everyone. Something unfair about the timing of it all. But, I can tell you I have a good feeling heaven will be tossing SHOWERS OF BLESSINGS your way.
It’s almost impossible to sum up my Grandma Gen to someone who has never met her.
Grandma was beautiful. Not only in a physical sense, but inside as well. One of the stories I never tired of hearing was the one of her and Pop’s first date. And because there is no way I could do it justice here, I will simply tell you she told it often, and rarely did a detail change. Decades after Pop’s passing, and 60 or so years since that date, her eyes showed the love in her heart. And even in her last weeks whenever we talked about Pop she would say, “God gave me such a GIFT when He gave me your grandfather.”
They were parents. Busy parents. Grandma was the Mom to nine children – 8 boys, and a girl. Most of us shudder at the thought of trying to raise 1, or 2, or 3 children. For Grandma there were never enough babies. Each one was a true gift from God. So for 20 years she had her own, from my Dad to my Uncle Gerry, and everyone in between. And then, just about three years after Gerry, my older sister Lisa was born. There was never a break. The house was always busy, and happy.
They took this shot as often as they could…
As a young child, the cousins just kept coming. There was always a baby to play with, and Grandma ALWAYS had a smile on her face. I believe between 1980 and 1990 – the core of the cousins, 13 if I have the numbers right- were born. Some just a few weeks apart. When all was said and done she boasted 27 grandchildren. There were busy Christmas Eves on Kingsley Avenue for a long time. There were swims in the pool, and dogs to guard the door instead of keys for the lock. There were trips to “Bud’s” for milk, and always a sweet treat. There were green mashed potatoes on St. Patrick’s Day that at the time just amazed me. The little things. So many, really, are the big things.
When I got to call Grandma and tell her that she was going to be a Great Grandma, she let out tears of joy. She was thrilled beyond words. 2003 was a good year – 2 grandchildren and 2 great-grandchildren. 9 more great-grandchildren have followed Meghan and Luke. And she never resisted an urge to tell friend and stranger alike about how proud she was, of all of us.
The first “great grandchild”
Maybe one of the most special things about Grandma was that everyone had their own “one of a kind” relationship with her. When you spoke to her you were the most important person in the world. And we were all perfect. In case the rest of the world missed the memo, or noticed a few faults along the way, you must have been mistaken. Each of her children, her grandchildren, and her great-grandchildren could do no wrong. And while in reality, we know we are all far from perfect, there is no denying that that kind of unconditional love felt awfully good.
Uncle Paul and Aunt Rita’s 25th Anniversary
Grandma had a firm, strong belief in God, Jesus, and she adored The Blessed Mother. She would often tell me, if you REALLY needed to get a prayer answered to pray to The Blessed Mother. She’s get word to Jesus, and He’d never deny His Mother.
Motherhood was her core. From her days playing with her baby dolls she prayed to be a mother. And boy were those prayers answered.
And through the years as the family grew, and changed, Grandma could be found smiling somewhere.
Grandma with Poppy Hollywood and Barbara and Gerry OGrandma and Aunt Shirley
I can say with confidence, that for all the years I knew my Grandma she never acted with malice in her heart, and always had the best of all intentions in all she said and did. Somewhere along the line I became a middle aged grown up, and I’ve picked up a few things. That pure heart, that is what defines people. At the end of the day it is the knowledge that they did the best they could with what they had where they were at all times that really separates the pure in heart.
And as sure as Jesus said, “Blessed are the pure in heart, for they shall see God…” I have no doubt my Grandma was welcomed into Heaven-warmly.
Because even after the stroke that was to be the beginning of the end, she was the most polite, well-mannered patient you ever could have imagined. In the hospital, in the nursing home, to anyone who did anything for her, “Thank you.” “They’re so good to me.”
Even as she waited for visitors, she stared at the picture of her children on the steps at Dave and Margie’s wedding, and she spoke with pride about each of them, and how their hugs warmed her soul.
Sometimes when I was visiting her alone she would tell me about the places she had been. Of course these were voyages of the mind, but I listened, as we all did, with intent excitement. These last few weeks were interesting, because you truly never knew who had been in before you, or who came after you, but we all had our times to listen and chat.
She and my brother used “FaceTime” so he could chat with her from Texas, and she sure knew it was him, somehow coming through my phone. Shane may very well be the first Thompson male to have his facial hair approved of by Grandma. He booked the first dance with Grandma at Kim’s wedding. And without fail as the call would disconnect, she’d say, “Shane, I love that kid!”
And there were days my Dad must have visited with her when she was lonely, and her brothers, and some others who gave her comfort, because we heard all about them too.
Even as her mind took her farther from reality, she smiled. She regaled us with tales of how we were all going to gather for family dinner. She told me one day she was buying 2 houses to there would be enough space for all of us. She would talk about the family being close, and how my cousins from Washington were coming with their families too! (We can dream!)
So this weekend we will gather together again. This time for the first gathering without our matriarch.
And we will spend Saturday showering Kim and Nando with blessings for their upcoming wedding. Because Grandma, who believed so much in weddings, and marriage, and love would have had it no other way.
Then Sunday we will get together in Harmon Funeral Home again. And in Irish fashion we will have a loud celebratory wake for a woman who lived a full, happy life. And we will look at pictures and tell stories, and we will laugh and smile. Together.
On Monday we will travel, and bring her back to Pop. 21 years later they will be reunited again, a love story never ended, simply interrupted.
Together again – together forever
Then the real work begins. It’s our job now. We need to stay focused. We need to stay connected. We need to stay together.
For so many of my cousins Grandma Gen was their last grandparent. I have a guilty amount of good-fortune, and celebrate three grandparents still. But. the significance and the importance is not lost on me.
In the end it is really only about one thing.
In our loss, we must remember their freedom. In our loss, we must remember the gifts they left behind. In our loss, we must remember they are never truly gone if we keep them alive in our words, thoughts and actions.
I miss my Dad. I miss my Grandma.
Their physical bodies are gone. Their energy, their spirit, their love remain.
Grandma Gen we’ll do our best to stay “on the right path,” as you so often said. And at every dessert table there will be an extra piece of cake or a “dollie” shared for you.
Enjoy Pop, and Daddy, and Angel Meghan, and Bo, and all the rest of those you love so much. No worries. When the time is right we’ll all be together again.
It wasn’t too long ago in conversation with my husband that we started to talk about all the things that have gone on in our lives in the last 2+ years.
The life changing diagnoses of Meghan and I and the correlating surgeries and appointments. just about took control there for a while.
And Felix studied for and ultimately obtained his electrical license through the drama, and extensive, ridiculous hiccups in the process.
It all just blurred in and we never properly celebrated that accomplishment.
Meg changed schools. Well, twice now.
We changed churches.
And the car accident, and the back trauma.
The rotted bay window, and the pool with the hole in the liner.
The loss of my father after a brief, battle with pancreatic cancer that had life changing ripple effects everywhere.
I actually sat down to write a list at one point. Maybe I felt, albeit temporarily, the need to justify the un-returned phone calls, the missed dates with friends, the chaos shoved behind closet doors, and the overarching feeling of disorder in my life. I wanted a way to explain why I felt like I was existing, not living. Why every weekend was faced with catching up, and why we were missing each other. I wanted to explain to the world how I was nutritionally healthier and stronger than ever before, and excited about my new products, but I was/am struggling to get out of my own way.
But this year has served up some intense wake up calls and I am trying to give them my full attention. Because if any reality resonates clear it is the one that there is no guarantee of tomorrow on this earth.
I am not trying to be morbid. Quite the contrary actually.
It is that very realization that caused me to shred that list I was making. It’s counterproductive to dwell. We must press forward anyway. So why stay stuck in the past?
There is a point in your life where you have to stop. And look around. And focus on the blessings around you. This paradigm shift, while far from perfected, is a work in progress.
We have taken steps to transform the house, even if that stands in the way of clearing off the credit card bills. Because, we are not extravagant, and never will be, but living in a neat, clean, organized house, when done well, is easier to maintain, and therefore an investment in our time together
We have family. And lots of it. At 40 years old, I can boast 3 grandmothers and a grandfather. I am becoming more aware each day of the depth of the value of those relationships. In addition to those 4 great -grandparents, Meghan has 4 grandparents of her own. I am beyond thrilled that Meghan, now 11, has had the opportunity to have created life long memories with all of them.
And sometimes it is within thoughts of those closest to us, that we remember what is the most important.
And if I really remember who I am, I have to speak of my grandparents, most especially today Mom’s parents.
Early in my life, when things were jostled around and life was uncertain, they were there. We lived in the first floor of their 2 family for the most formative years. They fed us breakfast and met us after school. They took us to sporting events and school activities while Mom worked 2 jobs. They were just always THERE.
And Pop was there to fix things, and Grandma to play cards and cook with.
There were summers in Ocean City, New Jersey – the best summers of my life.
There was a whirlwind trip to Disney, and so many more adventures.
I remember them as a young child, watching them. They never separated, even for a few minutes, without a kiss goodbye and an, “I love you.” This practice, perhaps formed after a lengthy service in WWII, and a full career in the FDNY seemed rooted in their deep understanding that we need to appreciate each other here. Now.
And when we moved into Mom and Ken’s house there was the summer Pop and Grandpa Al sided the house.
And in my own house the woodwork. The beautiful labor of love that is each piece of trim, each windowsill, each doorframe. In his 80s when I bought my house Pop trimmed each piece, and even helped Felix put in the front door. He shared his craft with my husband, and did so with patience and ease.
So much of the last 40 years of my life revolve around Grandma and Pop.
Never a task too difficult. Never say no. Always giving. Always sharing. Always loving.
When I think about my list that I had started to write, and then I think about them, I get a bit embarrassed.
Born in 1919 and 1920 they have seen more changes in their lifetime than any other generation. They lived through the Great Depression, and participated in World War II. They spent years apart, in touch by letter, only to marry a few weeks after Pop’s return in December 1945.
They built a family, my Mom and my Uncle, and the family branched out.
Pop worked in the Fire Department, and at Zion. Grandma took care of everything else so that there was never a thing out of place.
During their life transformations like – no phone to cell phones, and no TV to HD flat screens, and so many more have happened and they persevere. Pop Emails and surfs the internet, and even carries a cell phone – though it’s rarely on!
Times have changed and things slow down a bit. But it’s still a huge highlight to stop in for a visit and chat.
And when he can, Felix still picks Pop’s brain for suggestions of things he’s about to try.
All my life I remember them doing. For everyone. All the time. They are the ultimate lesson in “pay it forward.” They are for me the ultimate reminder of those vows we make before God and family and friends on the day we marry. Regardless of the wording used, the sentiment is the same. They promised to love each other, in good times and bad, in times when there was a lot, and in times there wasn’t, in times of sickness and in health, and to stand by each other for as long as God gives them life together.
Love my Grandparents!Christmas 2009Grandma’s 90th birthday on 2010At Pop’s 90th birthday in 2009
And even in the toughest hours, they make it look easy.
That is almost 69 years of marriage as God intended it.
There are so many things I share. And there are some that just aren’t to be shared. But make no mistake about this.
I’ve learned how to be a better person, and a better Christian from my grandparents. I learned how to be a better wife, from my grandparents.
This doesn’t detract in any way from the love of all the other influential adults in my life, including my own parents. We learn different things from different people at every place in our lives.
But today, it’s about Grandma and Pop. And how their selflessness and pure love never cease to amaze me.
I pray that though all adversity, my husband and I may set the same example for our daughter.
We are deeply, thoroughly, and completely blessed.
And when making lists its far best to make lists of your blessings than your struggles.
I spent the weekend with my college roommate. She was the one I lived with the longest. She was the one who introduced herself to me the first day. She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday. She learned how to drive in my Toyota. We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with. We gathered enough good dirt on each other to be sure we’d be friends forever.
The last time I saw her was in December. She and her husband showed up at the wake for my Dad.
The time before that was when I made it out to the wake for her Mom.
Somehow we find each other…
And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes. We cried, and hugged and pulled it together. As the scene was replaying itself again. But this time it was far worse.
College Graduation – 1995
It’s not right that we don’t see each other. And it’s no one’s “fault.” And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.
We stood together for a while, just the two of us. Interrupted only by people trickling by. We spoke about his fight. His strength. His battle. I told her how much I respected all he did to fight. I told her I was so privileged to have shared a few email exchanges after he took to this blog.
But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.
Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.
Her little brother had died. Her “little” brother was little in age, not in height or spirit. He had a presence about him 20 years ago when I greeted him in our dorm room. When he spent time with us. His charm, and sincerity, and personality resonated even then.
Her “little” brother was 36. Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented. He fought for his family, for his wife of 10 years, and for his two handsome young sons. He fought out of zest and a love of life. He fought for his siblings and his Dad.
I remember when she and I spoke this summer. I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier. She asked how long it had been for my Dad, from the time he was diagnosed until the end. And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…” But, she had heard a number. Just as I had when I had asked the question months earlier.
And I kept an eye on the calendar as I checked in on my friend. And every day I thought of her. I prayed often for her brother, and the family.
Sunday came the text that he wouldn’t make the week.
Tuesday came the one that said he was no longer suffering.
Friday rolled into today, and we sat. Side by side in a standing room only funeral parlor. We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life. And my favorite story of the day came when they said he went back to college after he had his boys. And he got his Master’s Degree too. Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class. His spirit filled the room. There was an abundance of support, and love.
And then we were at this backyard party at her brother’s house. And to the naked eye it could have seemed like any end of summer gathering. But it wasn’t. People were eating, and sharing stories, and passing time together. And two handsome blond boys ran about with their friends.
And then there will be tomorrow. And this young woman, now a widow, will need to press on for her boys. And those boys will slowly come to the realization that Daddy is never coming home. And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.
36 years old. Father of 2. Dead from Pancreatic Cancer. Illogical. Incomprehensible. Insidious, painful, horror show of a disease. It just doesn’t make sense.
At all.
And there have been so many things that don’t make sense. Ever. They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.
I think it was Wednesday at work.
I had a first grade class. And the loudspeaker went something like this, “This is a soft lock down drill. Please take all proper steps.”
And just like that 28 first grade students instinctively went to the back corner of my room. The stayed low and quiet as I shut the lights and the smart board and locked the door. They got themselves out of sight of the glass window on my door. And they sat. Silently. And I was stunned. I think it was the 10th day of school. They range from 5 to 6 years in age. And they never moved. They looked to me for a reassuring face. I faked it.
Truth is as necessary as I know they are – I HATE those things. And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it. And I take it seriously. And the reality that one day we COULD be a target of chaos doesn’t escape me. But that doesn’t mean I have to LIKE it. I don’t like that we need to scare the crap out of these little ones just in case. They are growing up in a wild world.
So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square. She gets things very quickly. And she is stellar at context clues. Dad’s in Times Square every day.
These kids are growing up in a tough world. Grown up worries. Grown up realities. Young minds. It’s so hard to make any sense of it at all.
And so when the ones who are supposed to help -just don’t, well that seems to make things worse.
In the middle of the renovations that swallowed the end of August, Meghan broke her foot. A stress fracture to one of the superficial top bones. I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement. That was a Thursday night. And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.” Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.
And we brought the X-ray, and the report. And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain. So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.
So she began middle school days after getting her braces off, with this giant black boot on her leg. And she plugged along for two weeks, and we got the X-ray repeated as we were told to. So, when we returned to the office for the recheck we gave them the disk and the report.
There was some grumbling about the radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.” (Doctors should learn some moms have rabbit ears.)
So he came into the room after having had Meghan take off the boot. There was a surgical resident in tow.
“How does the foot feel?”
Meghan, “Much better.”
“Great, there’s no evidence of fracture on the x-ray. You must have healed. Let’s transition you off the boot.”
Please know during this whole exchange he NEVER EXAMINED HER FOOT!
Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?” Does that mean anything?”
“Well, it’s not causing her pain is it?”
Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on. Could things being out of order in the foot trigger some of this?”
Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”
“Well does Cowden’s Syndrome cause bony overgrowth?”
Me, “You’re the doctor, I am asking you.”
“But you are far more familiar with the syndrome than I am.”
Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”
(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research. It took me less than 10 seconds to find. It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)
“I don’t think so, but you should probably have a specialist look at that. I don’t need to see her again.”
And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot. He has no idea what the problem really is. What’s the point of wearing the boot? I have to trust my own body cause they don’t know anything. I think its healed and the boot is hurting my knee.”
Fair enough.
She’s the closest I have to a doctor, and the thing that has made the most sense all week.
When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.
Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack. But the terrorist is cancer.
You get to live in fear, or live your life.
You get to try and make sense of things, or run with them anyway.
With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused. To live life instead of hiding in a corner, or some days under the bed with the lights off…
So many things, so many tragedies will never make sense.
But it’s less about making sense, and more about being sensible. It’s about instinct. And love, and compassion. And cures. I am a big fan of cures.
Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.
Say a prayer for those two little boys who will begin to know that Daddy is never coming home.
Say a prayer for a family who lost a 36 year old high quality man too soon.
And please. In this world that makes no sense. Do something logical. And kind. For someone. Cause we ALL need it.
beatingcowdens 