And to keep it fun, I added our flyer for our fundraising breakfast in 2015.
Meghan is now a week post op. Not a minute. And I mean a minute. Goes by without the realization that she had a hole in her artery. There will never truly be peace.
But life marches on.
Today we brought two balloons to the cemetery, a flag and a butterfly. Very appropriate.
Tomorrow she goes on a trip to NYC. Here’s to hoping the knee holds.
Back to swimming on Monday- with her eye on some improved times. Life goes on.
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!
I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.
Then I realized roller coasters and life have a lot in common. So I started riding them, cause really -what the heck?
If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years. And I am confident I have studied hard, and that I understand. I understand that just when you think you might understand – you don’t.
You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.
There have been more funerals this year than I care to count. Maybe its always like this, and I am just noticing now that 40 is behind me. Or maybe not. But there have been funerals for friends, for the brother of friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…
As I sit here thinking about all of them I try for the umpteenth time to rationalize. And I get farther with some than others. Some will just never do.
But the ultimate realization is that it’s not really mine to figure out. It’s not mine to decide how it fits in the grand plan. And I’m trying to stop looking to figure it out. Because, boy it can be exhausting.
And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why. But, as much as I miss him, it’s not in a pitying kind of why. It’s in a genuine curiosity for something I will likely never be allowed to understand. Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.
It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.
As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.
I wonder how we ended up here – again, on the second floor of this hospital. Today. Now.
12 hours ago I thought I was tired. HA! What did I know.
450 miles in about 30 hours to celebrate the life of a great man, my uncle. Lots of driving, lots of thinking, lots of observing. Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor. Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity. Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.
12 hours ago I thought I would go to bed early.
But I ended up picking Meghan up from swim practice on the way home from Vermont. And she walked out of the locker room and almost fell to the ground with tears.
“I can’t walk. It’s my knee.”
And I checked off the list – Did you fall? Did you bang it? Did you hurt it doing dryland? One at a time I asked the questions, even though I knew the answers.
This knee. The one we’ve been waiting for since we stopped the celebrex had finally given way.
We had had hopes of finishing swim season first. That was before we had to refocus our hopes to making it into urgi care without falling.
We were promptly told to get out, and get to an ER. Fast. The swelling was too big.
Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats. A quick bag for Meghan and I and we were off. This time to Lenox Hill ER. Cause that’s where they do the knee surgeries. And not that I’m trying to plan. But just in case… Maybe we should be at the right place.
They contacted her doctor. He’s sure it’s the AVM, but he’ll confirm in person in another hour or so. In the mean time nothing to eat or drink for Ms. Meghan after midnight. Just in case.
We are thinking we are far from alone in appreciating this Facebook post from the Global Genes Project. I mean these days it seems more than ever, I barely talk to someone whose life isn’t taking major, unforeseen “Plot Twists,” on a regular basis.
Global Genes hit this one spot on!
Whether it is the sick parent, or parents; the terminally ill or recently passed loved one; the stress of work, moving, new job, or the new house, life has a habit of not going according to plan. Brain surgeries interrupted, recurrent thyroid surgeries. The list really goes on and on. The only constant being change. And not on our pace, or our time. God alone knows the true plot of our stories.
Some have almost played out and are nearing the climax. Others are barely introducing the characters. And the older you get, the more you realize that doesn’t have as much to do with age as you might have once thought.
Sometimes I want to read faster. To see what comes next. To see how it all works out in the end. Sometimes I want to hide the book in a deep crevice, in a padlocked safe and convince myself that if I just don’t look at it, everything will be OK.
My logical mind knows that neither is true. And I, like everyone else, am left to brave each day doing the best I can with what I have, where I am. I am left to do my best to be kind. To realize everyone suffers battles. To pay it forward when possible. To pray for the best, and have faith when the worst hits.
We plod along here. The leg is getting worse. Much worse. The AVM is rearing its ugly head. A “Plot Twist” indeed. See in May when she spent a week in the hospital with severe gastritis, they said no more Celebrex. No one except Felix and I got the gravity of that statement. Celebrex had been in our lives since March of 2012, a month after the 4th knee surgery. And the knee had been remarkably quiet. You see in our lives, the life of Cowden’s Syndrome, Celebrex is used to treat AVMs – which are pretty common among us. It helps with the pain, and it has an affect on angiogenesis, which affects the flow of the blood.
Except the Celebrex, according to the report, had caused a very sensitive GI tract to go totally haywire. They said it caused 6 days in the hospital, dehydration, IV fluid, and a hot mess of tests. Over and over Celebrex took the blame. The drug she had taken peacefully for 2 years had finally said, “enough.” The esophagus was so damaged it looked like a 70 year-old man belonged to it. No more Celebrex. No more NSAIDs. At all. We were scared. Something had definitely gone wrong.
“PLOT TWIST!” Cause those drugs were keeping her walking, sometimes running, swimming, and playing.
But we wonder, her Dad and I, if that was really that simple. Our girl has been on some time of Protein Pump Inhibitor since she was 4 months old. She takes pancreatic enzymes to aid her digestion of a very restricted diet. And still we have always had to “pay attention.” Maybe it was the Celebrex. Probably it was the Celebrex. But what if it wasn’t?
When we left the hospital in May we figured 6 months before the knee was a serious issue again. It started in August. It’s getting worse.
On December 1st we’ll see the doctor who has dealt with it each time before.
But now we have an athlete. A swimmer who LOVES to compete. A swimmer with goals. Attainable goals. The time on Celebrex gave her time to get a taste of swimming. And she likes it. A lot.
So there will be some balancing to be done. How long is it safe to wait? How long can she stand to wait? How much of the season can she swim? How much pain can she take? How big is the AVM?
We have things to focus on. The February find raiser has us excited, and occupied. We will keep busy.
The story will unfold. Some of the best ones have multiple plot twists.
I mailed 15 pounds of medical history to the doctor who showed a hopeful interest a few weeks ago. She’ll have it tomorrow. Now let’s see what becomes of it.
Life doesn’t allow for planning. Mom keeps telling me. This year there is more up in the air than down. And yet, the days will come, one at a time. We will meet them, deal with them, and move on.
Cause really what other choice do we have? What choice do any of us have?
Saturday as she cleaned the music blasted. Katy Perry’s, “Roar”
…You held me down, but I got up (HEY!) Already brushing off the dust You hear my voice, you hear that sound Like thunder gonna shake the ground You held me down, but I got up (HEY!) Get ready ’cause I’ve had enough I see it all, I see it now…
…I got the eye of the tiger, a fighter, dancing through the fire ‘Cause I am a champion and you’re gonna hear me roar…
Today I turned 41. And while I am incredibly grateful for the gift of life, and for “More Birthdays,” as the American Cancer Society once put it, my birthday holds all sorts of emotional challenges for me.
I have a memory for dates. And seasons. And events. And people. Especially people I love a lot. And 23 years ago on this November day, my beautiful 6 year old cousin Meghan was invited to dance with the angels. Childhood Leukemia weakened her body so, that she was not to stay here physically. Yet on my 18th birthday I got the gift of the most spectacular guardian angel – and her name and her spirit live on in my girl. Even with all the good, the day messes with me. I tried explaining it to my Meghan last night, and the best I could give her was – 23 years become 23 days sometimes. The pain just gets a whole lot more fresh.
And Grandma, Dad’s Mom got her wings just a few weeks ago. After 88 years and a life well-lived, it was still tough to see her go. Not even a year since Dad…
And last November 12th, on my 40th, my Dad was in the middle of what was to be the fight of his life. We spent it together. An unsavory appointment, and some legal crap I wish never had to be.
And this year a dear, compassionate, kind-hearted, fun-loving relative sits, so close to the end of his life here on earth. My heart just gets full.
So, it came as a pleasant surprise last week when my cell phone rang and it was Gina from the Staten Island Children’s Museum, telling me that Meghan had been selected as one of this year’s “Kid of Achievement” honorees, for her advocacy work in the community. The luncheon was to be held on November 12th.
“Of course we’ll be there.” And I couldn’t wait to share the news with her.
We kept kind of quiet while she prepared her speech, and I sent her to school this morning with her backpack and her speech and a pretty dress. Quite a swap from her typical sweats.
We arrived at the Hilton Garden at 11:15, sized up the room that we will be in for our fundraiser on February 15, 2015, and checked out the raffles. We met the other honoree, a lovely young woman being honored for her work with Project Homefront. The tables filled in and the event began.
When Meghan was introduced for this award, her advocacy was the focus. Her nominee(s) knew her history. They knew of her work, and her goals.
She delivered this speech with incredible poise.
When my mom got the call that I received this award, I was thrilled. All of my advocacy began with me wanting to make a difference. I am so honored, and humbled to realize that I am.
I was diagnosed in 2011 with a rare genetic disorder called Cowden’s Syndrome. It affects 1 in 200,000 people and it starts from a broken PTEN gene. The PTEN gene is the tumor suppressor. The PTEN gene prevents benign and cancerous tumors, but since mine is broken I have a higher chance of getting these things.
My Mom was diagnosed weeks after me. A few months after that she was diagnosed with early stage breast cancer. She had some pink ribbons around the house, and she got a pink ribbon Pandora necklace.
I knew about the gold ribbon for childhood cancer, and the puzzle piece for autism. I knew there were many others, and that all these disorders had a symbol, and with a symbol comes a voice. I had many medical issues, and went to the doctor all the time. I knew there had to be symbol for people/kids like me; kids who’ve had eleven surgeries in eleven years, kids who’ve had countless tests and are treated like human pincushions. Imagine, all this happens to prevent cancer. There is no simple solution, only a constant set of routine poking, prodding, tests, surgeries and more!
We kept looking for a symbol. We found one when we came across the Global Genes Project. They stand for all rare and genetic disorders, their symbol is the denim ribbon, and their slogan is “Hope, it’s in our genes.” But, there was not a necklace, no jewelry. There was nothing to wear to help me show people, and tell the world about genetic disorders.
I asked my parents if we could get something made, and we did. My parents found a compassionate and caring jeweler who created the mold for the necklace I am wearing today. We reached out to the Global Genes Project again and again, in hopes they would sell the necklace too. Recently, they put a similar necklace on their market, and I can’t wait for it to become as popular as some of the popular pieces I have come to know.
Rare and genetic diseases are out there. Most are very rare, but there are over 7,000 of them. More work needs to be done individually and collectively, to get them the funding they need
In 2013, just about 18 months after our diagnoses, we celebrated “Rare Disease Day” which is February 29th – the rarest day- or February 28th on non-leap years, by handing out denim ribbons at our schools. We had assemblies, and I got to talk to my peers about what it was like to live with a rare disease every day.
I have had 4 knee surgeries for a vascular malformation in my right knee. I have a good deal of pain in my body, there, and pretty much all over. Some days I feel great, and other days I can’t get too far. One day in the spring of 2013, my mom was pushing me in a wheelchair to an appointment. I was annoyed by the number of people staring at me and talking about me. I heard things like, “lazy,” and “she’s not sick.” I decided I could be angry, or I could do something. While I definitely spent some time through the years being angry at some of the things – like running- that Cowden’s had taken from me, I decided instead I was going to DO something.
That night my Dad helped me design a business card that very briefly explains Cowden’s Syndrome. I have handed out hundreds to those who stare, and to those who just care. I like to spread the word, one card at a time.
This card was created out of her need to “teach” others about Cowden’s Syndrome.
This year, right before Rare Disease Day in February, I had my thyroid removed. Thyroid cancer is very common in young people with Cowden’s Syndrome. My thyroid had been watched since my diagnosis, and it went from having 4 nodules in 2011 to 16 nodules and 3 precancerous tumors in 2014. I was fortunate, but the surgery was rotten, and it has been hard getting the medicine quite right. I have been called a “Previvor,” which is someone who has an organ removed before the genetic cancer that is looming has a chance to strike.
This kid is clearly a “FORCE” to be reckoned with!
This year, for Rare Disease Day, I decided to raise some money. We sold T-Shirts at my school and we had a fundraiser. The money all went to the Global Genes Project, and it felt really good.
At my old school, in February, I also met the Borough President. He took such an interest in my story, he made me feel awesome. I have visited Borough Hall a few times, and love talking with him. He has encouraged me to keep dreaming bigger and I will.
Two weeks ago my Mom and I signed a contract with the Hilton for a fund raising breakfast on February 15, 2015. We will be raising money for the Global Genes Project, and the PTEN foundation. The PTEN foundation is a new organization, working just for PTEN disorders like Cowden’s Syndrome. We hope to have raffles, and T shirts for sale. We plan to have music and fin.
We set up ticket sales through eventbrite, and we called it “Beating Cowden’s First Annual Jeans for Rare Jeans Fundraiser.” Sales are open to anyone who wants to come support two great causes.
I am on a mission to spread awareness and raise funds for diseases people know too little about. I will not be satisfied until each of them has the recognition they need, and the cure they deserve.
Thank you again for this award, and for encouraging me to continue my mission.
Here is a video of her speech.
And when she was met with a standing ovation there were tears in my eyes. Tears of pride.
One after another people approached her, and complimented her.
Not a single one would have known the strength it took for her to walk in the room today. The pain was unbearable. But she did it. With grace and a smile.
And in addition to the compliments, there were offers to help. Real, genuine offers.
We will Email some of our new friends tonight. And with their help, in February we will blow this fund raiser out of the water.
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
Last December as my Dad was dying he made a request. He asked that we be tested for genetic pancreatic cancer.
My grandpa had it, my dad had it. It made sense.
It took me 7 months to get it together. I already had a really crappy genetic disorder, and I was not interested in hearing more about my faulty mutated genes.
But I did it. Because I promised.
And in the midst of the chaos that was the week that was, I received a letter in the mail.
13 genes tested that are related to pancreatic cancer.
13 genes negative: NO CLINICALLY SIGNIFICANT VARIANTS DETECTED.
No guarantees. But, life has none.
Simply a straight answer that actually doesn’t turn my stomach.
There is so much more to say, but for today. Only this. Only positive. Only the good news that I passed none of these other mutations to my girl.
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 sometimes hate the saying that things work out the way they are supposed to. Sometimes I just don’t buy it. But, then there are other times.
I have suffered with varicose veins since I was in my early 20s. I had 2 stripped surgically before I was 30 I had 5 VNUS closure procedures in 2011.
Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.
It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning. During the day I get distracted. And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger. The swelling is evident. The blue veins bulge.
Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help. Last summer I bought shorts. In a size 2.
This is not my leg – but a close comparison…
This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.
As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome. It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail. See there are differences even within the PTEN mutations that link us all. Some are germline mutations, some are frameshift, some are missense, others nonsense. AND, there are further specific differences too complicated for me to process. It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.
And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.
Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.
I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.
There was the sonogram. The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities. (You can read that as difficult to please.) Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting. The blood sits stagnant there. That apparently is not the most intense of my issues.
Then there was the visit with the doctor. A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.
He asked if things got worse with the vein in my leg after the tubal ligation in 2011.
“You mean the hysterectomy?”
“No, that was the following year.” He was reading from a sheet I had given him. He was right.
I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.
“I’m not sure, why?”
“I am wondering what is causing these veins to turn. And I have to look at every possibility.” As he places his hand on my abdomen.
“How long had that pulsing been there?”
“Um… I don’t know. (Feeling incredibly dumb for ignoring my body) Why?”
“Well, I won’t even consider surgery without some major tests. First I want a full abdominal CT to check for vascular malformations.”
Now truth be told I wasn’t shocked to hear this. I had a nagging, behind the ear voice telling me to get that pulsing checked out. But I had met with a vascular surgeon in July and that turned train wreck. So I was a bit delayed. I also I guess didn’t really like the fact that he could feel the pulsing too. I thought, well I thought that was just mine….
So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.
And as I tried to process that, I thought of everything. I ran the gamut from aneurysm to AVM.
As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.
MY SPLEEN!
I had never mentioned my spleen. The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round. I was told they are vascular. I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.
I really hope they aren’t misbehaving.
I like my spleen.
I also like that this doctor cares enough to check everything out first.
Pain in the butt? Absolutely. Life-changing? Maybe.
The other doctor was ready to take the vein out in the office with no prior testing. This guy told me I need an ER and tons of pretesting. You know what? At least he takes things seriously.
So now I wait. For authorization. For testing. For a whole host of inconvenient to schedules to processes.
And fortunately there isn’t much time to waste on worry.
Life is busy. We squeeze what we need to into the crevices.
We can’t let Cowden’s Syndrome distract us from this life that needs living.
This one is a favorite of a dear internet friend 🙂
beatingcowdens 