I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang. I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I … Continue reading
I had a list of things to accomplish while I recover from my vocal cord surgery on 3/3. I have been unable to work, preserving my voice for exercises given by my therapist, and brief conversation. But, aside from the inconvenience of not speaking, I have felt pretty well.
That left me with a little time to get a few things done.
I could not push it physically, but I sorted papers, shredded, sent Emails that were overdue, and generally handled things that had fallen by the wayside during the busy nature of life.
I discovered, much to my disappointment, that my attention span for reading has decreased exponentially since spending so much time at a computer screen these last few years. I vowed to get to work on that.
I also discovered that I have an account on the family’s “Netflix” and I learned how to sit still long enough to binge watch some “Law and Order.”
There was time over these three weeks for some honest self-reflection as well.
Sometimes it’s painful to put truth right in front of our own faces, but I had the time to do the work, so I went for it. I already wrote about isolation, and I had some time to think more deeply about what role my own actions play in that. I was able to reconcile that some of it is unavoidable, and some can be mended by me. Balance. I’m on it.
I also took a hard look at my own emotions and how they affect my house.
It is so easy to get “stuck” in the role of caregiver. It is so easy to live a task oriented existence, making sure things get done, and arranging the logistics of life. We may only have one child, but you add into the equation, two of us with a genetic disorder that involves countless appointments, surgeries, therapy and follow-ups things get dicey quickly. Add in that every appointment in NYC is a MINIMUM of 4 hours, and sometimes 6 or more, and the billing that comes with these appointments is at least a part-time job on its own, well, your head can spin. Then, you think about the issues that surround friends and family, illness, disease, financial hardship, emotional distress, and your heart can hurt. When you join that with “regular” stuff, like 2 working parents, a scholar, athlete, theater buff kid, food sensitivities, prescription medication, and anxiety all around – well, it can easily become all-consuming. And it did.
I sat in my office one day, looked around and realized I was unhappy. That was a tough realization.
I am not unhappy with my husband, or my daughter, or the countless blessings in our life. I just became so consumed with getting things done that I forgot myself. Literally.
Sometimes its good to reflect. It’s the only way to get things done.
Last week my sister sent me a box of essential oils. I was skeptical. I bought a diffuser. I feel like peppermint in the air while I work is good for my soul. So is trying something new.
Tuesday I went to Kohl’s. A quiet activity easily done alone. I felt the tension start to release. I picked up a few things for me and for the house. I went out because I WANTED to.
Something amazing happened Tuesday. My husband and my daughter both remarked that I looked happy. I had a story to relay at dinner that was about me. The mood in the house was lighter.
Wednesday I took a nap in the middle of the day. Because I could. Again, I found myself with a little less pressure in my shoulders.
That night I promised myself and my family, no matter how busy things got I would find a way to spend 15-30 minutes every day on SOMETHING I could say truly made ME happy.
I’m a work in progress.
I chose to do a deep cleanse on Thursday and Friday. I was working on my mind, but I had to bring my body along. It had been too long. I had gotten a little lazy in my habits and in my routines. I have this incredible nutritional system at my fingertips and in my home, and sometimes I forget to use it to its full potential.
I woke up this morning having released 5.1 pounds of junk. I started the day with a protein shake full of strawberries. I shopped with my girl this morning. Then, I got to listen to her singing lesson. Now, they watch a movie while I get to write. Then, my little family is off to dinner together.
This week the spring plants that sprouted on 3/3 started to really grow.
The caterpillars that came in on 3/2 have all become butterflies today.
Maybe we all used the same period to try to transform a little. Nothing like a few new butterflies to remind you about new beginnings.
I am focused on this journey now. I may falter along the way, but I will hold true. This feels right. This feels good. And when I feel right and good, it is much easier to remain
I have had a lot of time to think about a lot of things since my vocal cord surgery on March 3rd.
One of the things I’ve thought about is how I feel a little bad for kids/teens today. I know most are over-indulged, and don’t lack for things. But, these last 16 days, having to be very limited, and conscious of my voice use, I’ve texted- a lot. And, I find it completely unfulfilling.
Please don’t misunderstand, texting has its place. At full voice, I use it often. But, if there is a topic where voice inflection, emotion, or feeling matter, I can usually talk it out. I can’t help but think that MOST teens today have little idea how to hold an actual conversation, and that the digital media age is limiting, and severely dampening their interpersonal skills. The constant texting leads to misunderstandings, misinterpretations and a general feeling of loneliness that just doesn’t have to happen. I know – because right now I am living it.
I spend a good deal of time communicating online. I use Facebook, Instagram and Twitter. I blog as often as I can. I “meet” others around the world with Cowden’s Syndrome. And I am so grateful. Typically, the internet is a major source of secondary communication. Except right now – it’s a lot of all I’ve got.
I am still at a point of severely restricted speech. There were significant cuts made into both of my vocal cords. I need to practice the exercises given to me in vocal therapy. AND, I need to be quiet. Often.
I can speak a few minutes each hour, in a gentle voice. But, the rest of the time I carry my phone to text my family. Conversation is brief, and sometimes frustrating by no one’s fault. Tension can rise quickly. You find yourself on edge. It’s a wild form of isolation to be present, yet unable to communicate the way you want to.
I like a nice quiet day alone as much as the next person. The thrill of being on my own to watch a few shows on Netflix was not lost on me. I have appreciated the silence I so often wished for.
But, like everything, I’ve also learned too much of anything is not a good thing.
I retreat to avoid my natural posture, which is lips moving. I am ALWAYS talking. So even when my family is around, I’ve taken to “hiding.” It’s necessary for the healing. But, I’m over it.
There will be about 4 more weeks of gradual movement towards full speech, all building to a (hopefully final) post-op visit on April 13th.
In the mean time, I appreciate your texts. I appreciate your Emails. I appreciate your support. I am trying to store up these times of silence to see if they’ll help me through when life gets too noisy.
“You can have it all, just not all at the same time,” a wise friend once told me.
I look around at adversity, illness, tragedy, and loss. I am aware of my blessings. I am grateful.
I am also honest. I live my emotions so they don’t get the best of me. I laugh hard, and cry hard (although both are frowned upon as the voice recovers.) It’s all about balance.
So for now,
will have to be done quietly.
If you were with us at “Jeans for Rare Genes” you heard me announce we had received a grant for $2500 from the Richmond County Savings Foundation.
This story Inspirational Staten Islander to host Fund Raiser ran on February 4th. On February 8th I was contacted by the Richmond County Savings Foundation. The story had been read, and it was suggested we apply for a grant on behalf of the PTEN Foundation.
We are relatively new to the fundraising thing, but with a lot of help, we got on track and completed the application. The PTEN Foundation President, Kristen, spoke with them to get the 501c3 papers squared away. And – about 10 days later we were notified of a $2500 grant, awarded to the PTEN Foundation!
We included the grant money in all our fundraising totals for the event, but today we got to go to the office to receive the check. We got to meet Mr. Cesar Claro, who noticed Meghan’s story. We got to meet Ms. DeSapio who helped us so much via phone and Email.
Meghan took the day off from school, because my speaking time is so limited, and because she’s the reason all this happens anyway. It was just right for her to be there.
We gathered in a conference room with about 10 incredibly inspirational people. I loved how professional, yet casual the whole experience was. Amounts of grants were not discussed. Checks were distributed in sealed envelopes, but first , everyone spoke about why they were there and how the grant was going to help.
Meghan spoke a little about Cowden’s Syndrome, and how we are hoping the PTEN Foundation will be able to inspire research on our disorder. She did great, as usual.
We got to hear from a teacher, and his school’s work with Habitat for Humanity. We heard from “Metropolitan Fire” and how the grant would help their organization.
We got to meet Dennis McKeon From Where To Turn, and hear about the work his organization does on Staten Island.
We heard about the Moravian Church garden and their donations of food.
We met E. Randolph Wheagar from 2nd Chance Youth Empowerment Program, and we were inspired by their community work as well.
We met Jennifer Dudley from Staten Island Children’s Museum and learned about their efforts to “spruce up” the museum.
We met a few other incredible folks as well, one whose organization was obtaining deeds to local neglected cemeteries so they could be maintained. In the absence of pen and paper a few are slipping my mind, but it was a fantastic experience. It was an intense 45 minutes!
Perhaps the one that touched our hearts most was Mr. Capolongo who spoke of his son Michael with Duchenne Muscular Dystrophy. If you are not familiar with the genetic disorder, you can get some information here. Duchenne Muscular Dystrophy It is a genetic disorder affecting about 1 in 3,500 boys. The body lack dystrophin, and without it muscle cells become damaged and weaken. It is progressive. Michael is 11. They have 2 other healthy children. They are a family like ours. Dad is a policeman, mom is a nurse and a breast cancer survivor. Yet, they have managed to create a not for profit, Michael’s Cause and have raised a million dollars to help fund research, and hopefully, ultimately a cure.
In the 30 minutes we sat across a table I felt inspired, and connected. I respect so much the positive outlook, and the awareness that even in strife, others have it worse. I respected the acknowledgement that every day is a gift, and life can change your perspective quickly. These are things we identify with in this house. Those are principles we live by.
Meghan and I often feel a little more “at home” in the presence of others with rare disease. While they are all so drastically different, the difficulty, the fear, the unknown, the isolation, they all overlap. And what also overlaps are your decisions in how to handle them.
I was reminded of my own girl, at the age of nine telling NY1 that. “You have a choice, you can get angry or you can DO something.” And, “I feel like I was put here to DO something.” Watch this clip and reminisce with me.
Today we were full of gratitude. Today we were inspired by others. Today we were reminded of our own mission. Today was a continuation of an ongoing goal, and a reminder that it matters. It all matters.
Irony is spending 20 years wondering why your students sometimes struggle to be quiet, and suddenly, in one week, realizing how insanely difficult it is to be silent, AND, that it’s likely your need to talk constantly is part of the reason WHY you went into teaching in the first place!
Last Friday, March 3rd, this ugly thing was taken off my vocal cords.
And they, like so many other parts of my body, now boast scars.
So, I set up for a few weeks out of work, and a week of required silence. I never actually thought I was ready, which is a good thing. Because I wasn’t.
I do poorly on twitter, Rarely could I get out what I need in 140 characters or less. Absolute silence involved my cell phone in hand at all times. A few times the thing almost learned to fly, as the fingers, and auto-correct could not keep up with my brain. But, life lesson number, oh, I don’t know, 4 or 5, teaches us that life goes on around us. Ready or not. Even when you have to watch and not participate.
There have been many times since March 3rd I’ve been grateful that thought bubbles do not appear above my head.
On the 9th I headed to the city for my follow-up. After learning the pathology was benign, and read only “polyp,” I was relieved. The doctor was pleased with the initial healing and told me I could begin to use my voice. Slowly. He said 5 minutes an hour. That sounded high, based on what the voice therapist had told me in the fall, but I was grateful. I used the first 5 minutes up asking him questions.
I wanted to know whether this was connected to Cowden’s Syndrome. I wanted to know if it was likely to recur, if I needed vocal therapy, and when my follow-up would be.
Apparently, kind as he is, he could communicate on Twitter much more efficiently than I.
Cowden’s Syndrome? I don’t know. There’s not a lot of literature. This type of polyp is usually a traumatic event, something you’d remember. But, you don’t. And it grew really fast. I’m not sure.
Recurrence? Maybe. Depends how it came to be. Be careful with your voice.
Vocal Therapy? Suggested. Start on the 13th. (Whew… THAT I now KNEW I needed.)
Follow up – April 13th, a few days before I am scheduled to teach my first class post-operatively.
He was an outstanding surgeon. Matter-of-fact. Thorough. Efficient. But, I’ve known enough surgeons now to know, they don’t play with why. They just fix it and move on. He will “doctor” me, to the point that he will follow-up, and hopefully watch NOTHING ever grow there again. But, in reality this is now just another vulnerable spot on this PTEN mutated body. Because, I would stake certainty that it’s connected. There just aren’t that many coincidences in life.
So I left Thursday feeling good. I got 5 minutes an hour! I tried out my voice in the car. I tried it out at home. And then, I picked up my daughter at school, and I was so excited to talk to her, I easily let the conversation surpass 15 minutes. oops.
Later when I spoke to my husband I was well past 10 before I stopped.
This 5 minutes and hour thing was not for the faint of heart!
Sometime Friday I decided that stopping at 5 minutes was, nearly impossible for me to regulate. It was quite possible I could lose my mind.
And then I texted the voice therapist to set up my appointments for this week. And I mentioned the 5 minutes. And that I randomly out of nowhere had vomited for 20 minutes that morning. And her words were crystal clear. “DO NOT SPEAK AGAIN UNTIL I SEE YOU”
I went from a poorly managed 5 minutes back to a feeble attempt at silence.
I spent 2 full days at a swim meet at with my girl. 7 hours each day away from home. I got to rest my voice, except when I felt compelled to tell her how proud I was. Or to wish her luck. Or to just chat… a little.
Some people really love chocolate. Me, I don’t mind chocolate, but I LOVE to talk.
We sat in therapy today and I got exercises for volume and pitch… all ironic because I struggle to tell the difference, but I’m an overachiever, so I try to do well. I sound like a complete loser, but I imagine it’s the same as me attempting something that requires coordination, like kick-boxing, or yoga. My poor vocal cords may not stand a chance.
6 exercises, 5 times each. Repeat 4x a day. And during those 4 hours DON’T SPEAK at all.
The revised schedule she gave me had 3 minutes an hour till Friday. Then, we’ll entertain 5 minutes again.
Tonight I pulled back into my office. To be silent I must be alone. I put some “breathe” into my diffuser, and tried to get my thoughts together.
Then I realized they ARE together. I just have no place to put them.
Tomorrow the house will be full for the snow day. Normally this would make me very happy. Tomorrow it is likely to make me a hermit.
Grateful the voice works. Grateful I tend to heal well…. But, some days
is a real trip!
March 5th. 2012
One of those dates that will stick with me forever.
On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU. I signed all the papers with my husband by my side. I shook. I prayed. I was terrified. But, I had strong resolve, and there was no turning back.
Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome. This mutation is responsible for increased tumor growth, both benign and malignant. It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things. After our diagnoses, we began aggressive and age-appropriate screening.
Meghan was 8. I was 38.
They started with her thyroid. And immediately found issues.
At exactly the same time I was being sent through screening for the highest risk in my age group. Breast cancer.
I already had a mom- a 15 year survivor of bilateral beast cancer. (She does not have the PTEN mutation.) I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology. But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012. She introduced herself to me, having already torn through my previously received medical record, and said we should set a date. When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”
A little stunned, I caught my breath and asked why? “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively. “We need to get at it first.”
She sent me to her scheduler, who coordinated with the plastic surgeon. The date they came up with was March 5th. I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.
I called my husband, shaking. “Do what they say,” he calmly asserted.
So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.
The MRI was negative. I am still amazed by that. Five weeks prior to the surgery there was NO FINDING on the MRI.
I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders. She reminded me that the results would be “imperfect.” I knew I could not delay my recovery by months. I had a daughter, a family, and a job to return to.
The surgery was uneventful.
I vomited repeatedly as I left the house that morning. I cried as I walked into the OR. My surgeon called me “brave.” I woke up with a strange feeling of empowerment.
I left the hospital 28 hours later. There were drains and wrappings, but there were things to do. I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.
The day we went to have the drains removed, for whatever reason both Meghan and Felix were there. The plastic surgeon was the first to mention how lucky we were we caught “it” early. I was confused. She said, “The cancer. It was very early and far away from your chest wall.”
There was silence in the room as we all processed the word “cancer.”
She realized then she was the first to share the news. Our next stop was the surgeon. I pored over the pathology report and kept getting stuck.
I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.
I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”
I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay. I have not traveled the road as they did. I will forever admire them. But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us. That is a feeling, and knowledge that can not be explained. You either know it, or you don’t.
My implants lasted less than 5 years. The life expectancy is 15. This past summer they were replaced. Scarring was severe on the right side, and the scars needed to be broken up. A new pair replaced the old. Nothing flashy. Quick surgery, quick recovery. No big deal. Just a reminder of the reality that will follow me forever.
Today I celebrate that reality.
5 years officially Cancer-free.
Five years – and by the grace of God, countless more to go.
Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.
I celebrate my Mom – 20 years a survivor this year – my role model. My motivation.
I celebrate inside my own quiet- unable to speak as my voice heals. I celebrate even through miles of survivors guilt. I celebrate despite my broken heart as so many around me are taken by cancer. I celebrate because that is what they would want most.
Once you’ve been there. Lived it. Watched it. Seen it. You get a deeper sense of how precious life is. And you celebrate what you have each day. It’s not easy. Life can be messy. But, we do our best.
I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.
Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!
I always hated charades. I stunk at it. And I still do.
I would have made a rotten mime.
Forced down time.
That’s what surgery brings.
This time it brings silence as well- for at least the next 5 days.
I kept moving so fast through the last few months that maybe I chose to ignore the problem growing inside me. I mean, ignore it in the sense of not writing about it too often. Of course, I’m not foolish enough to ignore it…
It was last spring, right about this time that I started to feel a little hoarse. I blamed it on spring allergies. Except it never went away.
It always struck me as odd because it came at a time during the year I was teaching less, and testing more so there was less of a strain on my voice.
Once spring turned into summer, I had to accept “spring allergies” wouldn’t work.
I searched for an Ear, Nose and Throat doctor in Manhattan, in my network. I read bios, and surgical articles, because everything seems to end with surgery anyway. So – I find its best to pick a good surgical record to start. Negative, or realistic? You can decide for yourself.
The first appointment I met the speech pathologist and the doctor. Both took baseline screens. I was told at initial consult in July that there was a “nodule” and a “striking zone lesion” on the opposite side. I was told it did not seem “typical” of the nodules teachers usually get, and I was told at that initial visit I would likely need surgery in the future.
But, first I was sent to vocal therapy. And while I scoffed at the idea, I know now how valuable the experience was. I have always sent my daughter to therapy when needed, and marveled at the success I saw with OT, PT, and Speech. But somehow for me, it was a tougher pill to swallow. At first.
I think when I wrote about this last I had connected with the Vocal Therapist, a gem of a woman, and a skilled class act in Speechless – October 2016 And then there was a quick entry here Laugh Out Loud – November 2016, Basically, the therapy helped enough to reduce the swelling, and reveal more issues. In October I was told definitively that surgery was in the future plan. I was told to continue to practice what I had learned in vocal therapy. I was told to rest my voice when I wasn’t teaching, and to employ a slew of new speech strategies and exercises. I continued Vocal Therapy through December. It has been no easy task, and I am FAR from perfect at it, but I can say I’ve made improvements at least a third of the time. Not too bad for a few months of modifying something I’ve been doing for 42 years!
The kids at school are used to my “tour guide” microphone, which helps me resist the urge to overextend my voice. We got in a routine, as you do when faced with a new obstacle. There is no other choice really, because as my friend says, we just “keep swimming.”
The plan was for me to return to the doctor in early April to set up surgery for the summer.
Except plans change. And it was getting a little hard to breathe. I felt like I had asthma symptoms more often than I am used to, and almost like a constant feeling of fullness in my throat.
I called the doctor to move the surgery up. We set February 20th as the date. Sometimes I just have to trust my instincts. Except I got a call that the OR was closed on February 20th and I had to take either February 17th or wait till March 3rd. And for a hot couple of moments I entertained February 17th. Except that “Jeans for Rare Genes 3” was set for February 19th. And, me being on total vocal rest while we entertained 120 people wasn’t a great idea.
I headed to see the doctor on January 31st and he found a new problem. There was now a very large polyp extending over the vocal cords. It was big and it had not been there in October. I asked about the likelihood of it being benign and I was told he was 99% sure it was all benign. I liked the odds, but still he agreed waiting till the summer wasn’t a great plan. We settled on a surgical date of March 3rd. Carefully calculating the number of days I’d need to be off of work before my return, we established it should still work.
Over the last few weeks I felt increasingly short of breath during mundane tasks. I stayed calm. I decreased my daily activity and moved a little slower. I knew we could make it, and we did.
So, “Jeans for Rare Genes 3,” went off as a successful event, and yesterday morning, on the first anniversary of the death of my beloved Pop, I headed to NYU to have my surgery. I left with the prayers of great friends and family, and the intense protection of one of my Guardian Angels.
The surgery went as surgery does. It’s strange how it’s not nearly as anxiety provoking as it once was. The whole routine has a wild familiarity, from the intake to the recovery room. I don’t get lost anymore and anticipate their words and requests. It’s odd, and a bit strange this job of #beatingcowdens. I walk dutifully to the OR and get settled under my warm blankets. I expect the IV, and the burning of the anesthesia. I know the mask will be the last thing I remember before the recovery room.
And its amazingly less nerve wracking when the surgery is for you and not your child.
So the biggest polyp had increased drastically in size since January 31st. It’s gone, and so are the other issues. We wait on pathology and a follow-up next Thursday. I’m on strict voice rest until Thursday at least, which requires me to really isolate. Talking to my family is reflex. And as I said before I stink at charades.
So we carry our phones. I put my fitbit on rest. It’s off an in a drawer. I’ve got my laptop in my room. I’m eating my Isagenix and diffusing protective oils. I’m organizing my brain- a little.
I’m trying not to get ahead of myself. I’m trying to address one day at a time. This is not my strength. It is in my long term planning that I strengthen my resolve and focus best on
For now it’s been about a day. I slipped on about 20 words total. Not great, but I never claimed to be perfect. The funny thing about talking is you don’t realize how much you do it till you can’t.
The laughing is even harder. My husband is funny. It’s one of the things I love most about him. How lucky and I as I heal to lament that my daughter wants to talk to me, and my husband makes me laugh? I’ll hide from my biggest blessings a few more days. #gratitude
Tomorrow marks exactly one year since my Pop moved on to Heaven. I say that with confidence, because while my Pop was larger than life here, he was forever a humble, faithful servant of God and His people.
They say the first year is the hardest. I’ll say I’m not so sure. The first year is, by it’s nature full of “firsts” and figuring out how to do things for the “first” time. It’s about their first birthday in heaven, the first holiday, or family tradition they are not there to participate in. And, while this year was tougher than I imagined it would be, I’m not so sure it will be the hardest.
I should be embarrassed at 43 years old to be lamenting the loss of my 96 year old grandfather. I should simply be full of gratitude for the years we had, and for the time we shared. But, that’s not exactly how it works. You see for 42 years I knew NOTHING other than having him there. All the time.
All loss is tragic, to different people, in different ways, and at different times.
We lived in the first floor of their house for 15 years. I kissed them goodnight. They fed me breakfast. They came to our school shows and plays. He drove us to practice. Watching him love my Grandma showed me so much about how a relationship needs to be nurtured.
We vacationed together for about the same span. Ocean City, New Jersey. Still to this date some of the best summers of my life.
We moved when Mom married, but that changed little. We didn’t move far. At first it was walking distance, then driving. Pop taught me how to check the fluids in my first car, and how to measure the pressure in my tires. He told me never to let anyone think I didn’t know what I was doing. He meant under the hood of the car, and everywhere else too.
He and Grandma drove to college to visit. We talked on the phone regularly.
And when I was back home, there were trips to their living room. I usually chose a spot on the floor where I could get a clear view of Pop in his chair. Come to think of it, I almost always sat on the floor. I think it was because even when I became an adult, he was larger than life in my mind. The view seemed more fitting.
There were stories, about the war, about the firehouse, about church and the bank. There were stories, and memories and laughs. There was, “Oh, boy!,” and “Come on!”
There was “Susie,” from a man who spent most of his life in a house with too many women. We even had numbers… “Susie 1, Susie 2…” And to the rest of the women, young and old, “Susie” was a term of endearment.
There were stories I heard dozens of times, and ones I only heard once. Yet, they all blur together now. How I wish I had recorded them. Or written them down.
What I would give to hear, “Who threw the overalls in Mrs. Murphy’s chowder?” just once more…
He was always there. Always. No matter what was needed, the answer was always yes. Always.
For a while I thought Pop was the tough one. I later learned that my larger than life Grandfather was not tough at all next to my little Grandma. Although, I was an adult the first time I saw Pop cry. And it didn’t happen often. Once was when Mom was diagnosed with breast cancer. The second was during a Memorial Service at church on September 12, 2001. There were a handful… but, those two I can picture as if they were yesterday.
When we bought the house in 2000 I wanted wood trim. He was 81. Every day for months I would come home from work elated as a new piece of trim was placed, around a door, window, or floor. There is no room in my home he hasn’t touched. And for that I am so grateful.
He took my husband in as his own. Immediately. He took my husband under his wing and let him extract years of knowledge from his brain. He taught Felix carpentry and wood working tricks, and helped him find confidence in his own abilities.
My daughter loved Pop. I loved the way his great-grandchildren rejuvenated him. It’s hard for me to imagine that just 5 years ago Pop and Grandma were getting Meghan from half days at school.
There are no words for Pop. Even as I try and images flood my mind – there are no words to do justice for the influence he had in shaping me into the woman I am today.
I always knew there would come a day when his body would no longer be with us. I always knew. Yet, I could never really have been prepared.
I wish I had listened a little more closely. I wish I had hugged a little tighter. I wish I had taken just a few minutes to record his stories. But, I watched. And I observed. And I felt the love. And I witnessed the compassion. And I watched a true Christian man support his family to the best of his ability, at all times, and in all places.
I will never forget the lessons he taught. His influence is etched in my heart.
Maybe that’s why I’m not sure the first year is going to be the hardest. I’m certain that not a day will go by without thoughts, words of wisdom, advice, or a smile from him.
I will treasure every single moment, even as the years will surely blur them together.
It’s a blessing to be 42 when you lose your grandparent, but it’s a blessing riddled with irony. If you’ve been lucky enough to be in my position – you know exactly what I mean.
Oh, and Pop, I could use some extra angel power tomorrow at noon. I could never do your memory justice without my voice, so lets keep that surgeon’s hand firm?
Love you always…
In honor of #WRDD2017 I’m sharing Meghan’s video from 2016. So much of our lives with this rare disease is lived behind the scenes. Sometimes it’s an important part of advocacy to let it be seen, heard, and felt.
Music- “Pressure” by Billy Joel
“Corner of the Sky”- Pippin soundtrack
We were worried. Attendance was at an all-time low. We had picked a bad weekend, but it was too late to change it.
We took the event off “eventbrite” this year, looking to take the fees they collect and get them to the PTEN Foundation.
It took a whole lot of record keeping, but it was worth it.
We had an “Early Bird Special” and free T-shirts. We opted for a new venue, a deluxe buffet brunch, and beer, wine and sangria for the grown ups.
After months of planning, of soliciting donations, of advertising, Emailing, and distributing flyers, we had exhausted every avenue we knew.
We received so many generous donations that were accompanied by, “I wish I could, but..”
We received so many well-wishes and positive thoughts from genuine people.
But, in the end we were looking at attendance numbers far lower than last year.
We had excellent baskets – Some were gathered by friends and family. Others were given as donations, and many were put together by my loving husband.
Meghan and I wrote out and carefully planned what we wanted to say.
She opted this year to stray from her pattern of creating videos, and she created a Power Point of the year in review instead.
But, as late as that morning the text and phone calls kept coming from people who could not make it.
We walked into the room anxious. Not sure of how the day would go.
We should not have worried.
What this crowd may have lacked in volume they more than made up for in LOVE, SUPPORT, GENEROSITY, and COMPASSION.
They were from all areas of our lives. There were family. There were lots of cousins. There were friends. There were colleagues. There was Meghan’s Physical Therapist, her math teacher, and her former paraprofessional. There were friends of friends. There was Charlie Balloons, and a DJ whose services had been paid by some dear friends as a donation.
There were 42 raffle baskets, and a 50/50. The money generated just from those two things was mind-blowing.
There were 2 schools, PS1 with cousin Kim, and Holy Rosary with our friend Christal, that each raised over $400 at their schools for the cause.
We laughed. We drank. We ate. We talked. Kids danced with balloon creations. There were musical chairs and fun. There was pure love in the room.
When Meghan and I spoke there was silence. Attention. Focus.
Cowden’s Syndrome is understood by this crowd, because of us.
And there stood my daughter, telling this crowd of 100+ that she was tired of “Living with Cowden’s Syndrome.” She “put Cowden’s Syndrome on notice.” She told it, it was time to “keep up with her.” She’s got things to do. Places to go. People to see. She’s growing up right before my eyes.
Not long ago she was a scared and confused 8 year old. Now she is a wise, and mature beyond her years, 13-year-old young woman. She wants the PTEN Foundation to flourish. She wants research, a patient database, and even a cure. She’s 13. There is time to get it right for her, and all the young ones being diagnosed after her. She has drive and ambition.
She chose a song to end her speech. She chose “Let it Go” from Frozen. She toyed around with a few songs, but this is the one that spoke to her, at this moment. This one got to her heart. And you could tell, as she belted it out acapella.
In the end, as people with full bellies, and big smiles, hugged us goodbye, they spoke of “next year.” They said this one was “the best yet.” We felt loved and full of gratitude.
And as we sorted through the finances, we were struck with something amazing. Jeans for Rare Genes 3 would be making a cumulative donation of just over $12,000 to the PTEN Foundation. This love, this event, these people, the generosity of so many, had generated an amazing amount.
Our hearts are full of gratitude.
A donation of over $12,000 to the PTEN Foundation. Because of you.
Thank you for valuing a cause that matters so much to my family. Thank you for loving us. Thank you for supporting us from near and far. Thank you for your never-ending generosity. Thank you for your prayers and good wishes.
Because of you we remain #beatingcowdens!