I vaguely remember a shirt my older sister used to wear when she was swimming. The message was something like this.
It was motivational, meant I am sure to remind the young swimmers that their fatigue from grueling practice would translate into race times that would forever keep them proud of their accomplishments.
And in that case, I hope the pain, the pain of lap after lap, translated into successful meet times that led to a gratifying feeling of pride.
But what about when it’s not that neat? What about when you can’t sort it out in a package, or tie a bow on it?
There is emotional pain. The empty pain of loss.
As I type, I have two lit candles on my desk, celebrating the 60th birthday of my uncle in heaven. The pain of his wife, his children, his mother, my dad, (his brother,) can not be explained. The loss is raw. The pain is an open wound.
I think of my college roommate, and her nephews and sister-in-law preparing for Christmas without their 36 year-old father.
I think of the loss of my Dad, just over a year ago, and the flood of memories and seasonal connections complicating my every thought.
I think of the loss of our beloved Allie Girl last week.
I think… and I think. And I know how badly it hurts. And I know we are so far from alone. I am grateful not to be able to imagine the depth of the pain some feel.
Pain is temporary…
There is the pain of anxiety. Very real. Depression. Equally crippling. I’d be lying if I said I haven’t battled with both my whole life, amped up by this Cowden’s Syndrome torment under which my girl and I will live forever.
Try as I might, the worry is stifling. The sense of urgency all the time is exhausting. There is little room for error. Screenings, medications, lab work, surgery. All scheduled with precision to conserve sick days and minimize missed school. Except when I can’t. Like when it’s an emergency. Then we just roll with it.
The anxiety weighs on my girl as well. 11 years old, trying so hard to be normal, and to fit in. But, the reality is there is no “normal.” So she fakes it as best she can, blessed to be surrounded by some spectacular kids.
But, she gets mad. Mad at the doctor, mad at her knee, mad that she takes two steps forward and three steps back, in this poorly choreographed dance she is forced to participate in. Mad that she can’t be “the best,” because her own best is unacceptable to her. And some days when she is extra mad, I wonder about the thyroid. Cause its absence affects all things. And this week came the phone call that the numbers have increased 400% over the last 3 months again. So we continue to raise the dose of a medication that I don’t think does a damned thing for her. We play the game while I search, frantically for someone to “get it.”
Pain is temporary…
Except when it’s chronic. And it involves every single minute of every day. And the one medication that does work is off-limits. And the surgery to plug the hole in the artery that was likely provoked by the absence of THAT medicine, causes and abundance of scar tissue and this feeling of a lump the size of a cashew or two exactly where the knee should be able to bend. And you have no way of knowing if its going to get better, or happen again. Any minute.
And the pain, well if it was only in your knee it would be better. But it’s in the shoulder, and the neck, and maybe it’s caused by the feet over a 1/2 size off, or that slight curve in the lower spine, or something else no one cares to figure out.
So, you gather your spoons. And you borrow a few.
And you press on. Through sixth grade and onto the principal’s honor roll, and through student council, and drama club, and fundraising activities, and swimming your butt off. Cause what choice do you have?
Pain is temporary…
We talk about injury pain, vs healing pain. Tonight’s pain counts as the healing type cause it was generated largely by exercise. This pain is movement in the right direction. Swimming heals the soul.
You have to find what heals the soul, or you will lose your mind. There is no other way.
Pain is temporary… cause it needs to be.
You have to find what brings you peace.
Two weeks ago on December 4th, I chose this. The butterfly breaking out of the cocoon. Free forever.
I miss my Dad.
My heart is full.
But we press on. Because pain is temporary. Even for all of us in the middle of the worst pain of our lives. The sun will shine again.
Channeling that energy into raising awareness, fundraising, and helping those whose sun hasn’t come back up.
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?
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.
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.
beatingcowdens 