I’m not one for New Year’s Resolutions. I don’t believe in waiting for a specific day to make changes. If they are needed, wanted, or warranted – we make them. Right then. Otherwise, I’m all about just being your best you- every day.
Parenting a teenager is tough stuff. Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.
There are people who would challenge me that we have it easy. They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more… And maybe they are right. I will never know. But, they won’t either. That’s the point.
Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.” There are challenges present in every single scenario that comes to mind when I think of EVERY family I know. In this house we talk a lot. My girl and I, we talk about those other lives we know, and their battles. And we send love and prayers and warm wishes, as they do for us. It’s not a contest, it’s real life.
2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.” It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen” And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.
2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.
Yet, we made it. We came out with a few bumps and bruises, but we made it.
2016 ended with 8th graders we know taking High School entrance and Scholarship Exams. The next weeks will bring jubilation, laughter, and tears.
Yet, we WILL make it- all of us.
The “To Do” list on the yellow pad to my right is busy. The fundraiser is about a month away and there is lots to be done.
There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me. All before February 22. That’s IF no one requires additional testing for anything…
We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.
We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives. It’s a subtle difference on paper, but a HUGE one in practice.
And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings. Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive. I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.
It came up this week when we were preparing for the fundraiser and talking about social media. Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…
Digital footprint – how are you presented on the internet? What if someone “googled’ your name? Now? 5 years from now? 8 years from now before your job interview? The whole concept of this blog has been discussed in depth. Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease. Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis. That’s forever, and its important.
What she does with it, well that’s ongoing. She’s made some pretty dynamic choices to date. Sometimes she feels a bit like she has something to prove- so she does.
She’s been asking me for “snapchat” lately, and eventually I’ll give in. But, I’m one of the mean moms who makes her wait. Instagram is plenty to manage for now.
This week Meghan was nominated as “Inspirational Staten Islander of 2016.”
It prompted me to “google” my daughter. So when I type in her name connected to our home town, these are the first links to surface…
And just for good measure, I switched to an image search. These 5 were on the first page…
Meghan in her elementary school with one of her idols- Borough President James OddoAn old one – when Meghan was named “Hero of the Month” by Child Life after an early surgerySI Children’s Museum Achievement Luncheon AwardRare Disease shirts from the PTEN FoundationOne of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016
And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016
Apparently she has listened, carefully. I don’t know what the future holds for my bright eyed activist. I know she’ll continue to take heat from a few along the way. I also know she’ll find the strength to rise above and press on. Because, that is what we do.
Would she like it is she were named “Inspirational Staten Islander of 2016”? Sure. Will it break her spirit one way or another, absolutely not. Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”
2017 Event Flyer
If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below. The voting takes place like a reality TV show. I’m not sure how valid it all is, but there is a week of lots of voting. It ends January 11th at noon. Apparently you can vote many times before it stops you. And then you can vote every hour. So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.
Regardless of the outcome, life will go on. And we will continue on the same missions we’re on right now.
The day after Christmas in our house is reserved for a blissful amount of peaceful rest. A few loads of laundry, a simple meal, late sleeping, playing with some new “toys,” recovery, and reflection fill the hours. It is a wonderful, necessary day to pause and recharge.
I am awestruck by how fast days blend into weeks, and months, and even years. My girl is now a young lady. A young lady of 13 years old with the fall devoted to High School Applications, academic honors, hours of swimming, and some drama (class) thrown in for good measure. It was a crazy season, but a remarkable, beautiful time of transformation.
I don’t get time to write as much as I used to. But, truthfully, you don’t need to hear from me all that often to follow along. The writing remains my way to sort out life. I feel fortunate that so many of you come along for the ride.
So much of our journey #beatingcowdens is couched in perspective. We talk so much about the realities of everyone’s life. We talk about the things people endure that we can not fathom, and we talk about how hard it is to have some of the conversations necessary in the life of my 13-year-old. We talk. Often. And perhaps that is the first of many blessing I have.
My girl has become a young woman through a path that is different from most her age. Notice, I deliberately chose the word “different” as we are careful not to measure things in “better” or “worse.” The medical drama unfolded at a fast, furious pace, most concentrated in the years from 8 to 12. And we held fast through each one, but then, slowly, the dramas began to slow down.
At first we didn’t want to say anything. There is the fear of “jinxing” the situation. When medical drama is your “normal” you don’t really know how to live any other way. It sounds bizarre. You want so desperately to be rid of it, but the relief of losing it would be so intense, that to relax and then have it hit you again could be crushing. So you stay on your guard. All the time. But sometimes when you do that you can get a little… I don’t know, isolated, alone, rough?
There is a security connected to living in a state of medical drama. At least you know what to expect.
But, it’s not a place to hang out when you don’t need to.
Meghan’s last biopsy was in July. The follow-up is this week. My last surgery was in August. And, in a turn of events here, I have spent the last few months in vocal therapy sorting out ways to work around the tumor that desires to strip me of my ability to communicate. We’ve had some success, and last week even amidst a terrible head cold, my voice made it with me all the way to Friday.
And it was on that very Friday morning, as I drove Meghan to a 5:30 AM swim practice, with my head-splitting and my nose running, that I told her how lucky I felt. She may have checked me for fever, to see if I had totally lost it. But I explained – a year ago facing Christmas break without her having been knocked down at least once by something major was an impossible dream. This year, she had done more than ever before, and seems to be getting stronger. That morning I was grateful that I was able to get my butt out of bed, to take her to the place she loves, so she could work on the sport she loves.
This fall we have successfully removed 2 stomach medications that were previously necessary for survival. And, we are well on our way to eliminating a third. There is nutrition, exercise, and natural alternatives in their place. And it is working.
She came home a few weeks ago with a perfect attendance certificate for the month of October. I save everything. I think that may have been her first. These are the things that keep us in perspective.
We have a “doctor cycle” among us now. The knee needs to be checked again, MRI, and two knee doctors. There are clinical exams, GI follow-up and endocrinology. The afternoons these next 6 weeks will be swallowed up with trips to NYC. I’ll add in some appointments of my own, as I prepare for vocal cord surgery, tentatively set, but not yet confirmed. We’ll keep swimming, literally and figuratively. We’ll hold each other up, and we will do something a little different. We will, instead of fitting out lives into the doctors, we will fit the doctors into us.
Raising kids, one, two, three, four, or more- regardless of gender, or age combination each holds unique rewards and challenges. We have our moments, my girl and I, when we challenge each other to the best we can be. Sometimes its deep conversation. Sometimes it’s a little less pretty. But, we do it. We learn and we grow together.
I find myself often, missing relatives who are not here with us anymore. I miss conversations, deep and thoughtful. I miss shared laughs, and the pride they felt and showed. I understand, and comprehend their lives are changed, their eternal lives are more beautiful than I can imagine. But, I still miss them.
I sometimes shuffle around a bit in circles in my mind, feeling a little lonely, a little unsteady, and a little unsure of how to break the cycle.
And even at those loneliest points I take solace at the people in my life who are there. Their own lives keep us from day-to-day interface, but they are there, forming that net that will catch me, or us, if we were to fall. They weave a web through our lives that give us such confidence and gratitude, that I can only hope they feel the same way about us.
As we begin to get heavy into the preparations for Jeans for Rare Genes 3, it is a time to get focused. I am not a huge fan of New Year’s Resolutions. A wise friend recently reminded me a calendar is not necessary to begin change.
Choose positive. That is my simple focus. I will not be perfect at it. But, I will work tirelessly. I will be positive, hopefully not to the point of irritating, but when given the opportunity to face a new situation, I will work to find the positive.
Cowden’s Syndrome will toss us curve balls for the rest of our days. I’ve never been much of a baseball player, but I plan to practice my swing. And just in case- I’ll keep a helmet on as well.
May the culmination of 2016 lead us to gratitude for all the positives it brought, and gratitude for the negatives as well. May it leave us with the reminders of the blessings in our lives. Only in appreciation of al of it can we ever move forward. And really, forward is the only direction I choose to travel.
I think I blinked, and the calendar changed from October to December. Some weeks I can do nothing more than plan day by day, because to look too far is overwhelming. But, I “lost” the fall in a beautiful way. I lost it shuffling my girl to places she loves to be, and helping her apply to high schools she is excited about. Four years ago I could not have imagined she could keep this schedule. She battles for it every day and I admire every ounce of her determination. I take nothing for granted, and I know a huge “doctor cycle” is soon to be upon us. Meghan’s appointments begin late this month. Mine will overlap, likely culminating in vocal cord surgery. But, for now, for this moment, I am grateful for this chaos. The hint of “normalcy” is not to be left unappreciated.
Today though, I blocked out some time. Today I needed some time to sit in my office and look around. There are beautiful images on the walls of my office from New York City to Washington state – and places in between. Each is carefully watermarked “Leon G. Thompson,” a process that took my husband countless hours. There are thousands of such images on my laptop and several backup drives. You may have no idea who “Leon G. Thompson” was, but I can tell you these pictures are more valuable to me than any you’d find in a museum. Leon G. Thompson was my father, and these pictures are what he left behind on 12/4/13 when cancer snatched him from us far too soon.
“A Few Good Men,” has been far more than a movie title in my life. I was blessed to have 3 grandfathers that shaped who I am. I am equally blessed to say I have had two fathers mold me into the woman I have become. My Mom’s husband Ken came into our lives when I was a teenager, but he has been, and continues to be an unshakeable source of everything from “fun facts,” to computer tech, to house repair and all things in between. There is a special place for a man who steps into a marriage with 2 teenage daughters in tow, treats them as his own from day one, and never skips a beat.
My father, well… let’s just say the early years were rocky.
What I know now, but I didn’t know then, clarifies a bunch. Dad, a Vietnam veteran came home lost. The earliest years are peppered with memories that don’t leave “the warm fuzzies.” The years after that hold memories of fun visits. Dad would come by sometimes. There were movies, and visits to the park and the zoo. There were restaurants, and exciting novelties. But, there was not consistency. There were chunks of empty time. There was a lot of wondering.
Contact got more steady in the teenage years, especially after my brother was born. There were more visits, and more phone calls. But, history sometimes repeats itself, and there were years that faded away again.
Later, after high school, and probably after college too, there was more. Maybe I was ready. Maybe he was. I’m not sure. But, slowly and carefully, over years, a relationship began to form. By the time I got married, I was able to dance with my Dad, (and Ken, and my Pop :-)) and I will cherish the memory forever.
After my daughter was born, he started showing up more. And I liked it.
Hard times came for Dad, and the restaurant industry finally failed him. And that low for him, was the point our relationship became solid. Nothing happens overnight, but he was here. Close. Interested. Available. He helped pick up Meghan. He came to birthday parties, and dance recitals, and swim meets. He came by for Father’s Day and even celebrated a birthday with us.
It was during that time that he first spoke the words I’d been waiting to hear since the second week of my Abnormal Psychology class in college.
“I have PTSD. Do you know what that is?”
“Yep. I know. (and I exhaled a sigh I’d been holding in for years..) And it all gets better from here Dad.”
He was stunned. He had no idea that his entire adult life spent making poor choices, ducking relationships, and often shying away from those who loved him most, were just a few of the symptoms of PTSD. (Post Traumatic Stress Disorder) He couldn’t imagine that I had already pieced together that unspeakable horror encountered with his Marines in the jungles of Vietnam had impacted, to the point of changing, and really shaping his entire adult life. 13 months in that war, and not a day, a single day, ever went by without it influencing his thoughts and behavior. I was able to pick up from a text-book the reasons why he had shied away from our relationship. I was able to know in my heart that he couldn’t risk expressing his love, showing up, or being truly “present.” But, in that moment, hat moment when he said it THAT is where I got him back.
I can’t say I remember the day. And I may be wrong on the year too. But, it was sometime around 2009. Finally, he was working on his own healing.
And he worked hard.
We spoke more regularly. Once a week usually. Sometimes it was his turn. Most of the time it was mine. As I struggled through raising a chronically ill child, he became my sounding board. He was my confidant of all things. He was where I went to bounce the tough decisions. Because, life had left him a great listener. Raising a child with a rare disease, means often having to make really tough choices alone. When your disease affects only 1 in 200,000 people, experience with it is limited. When Cowden’s Syndrome manifests differently in each of that small number of patients, including myself and my daughter, there is an even lower confidence interval with doctors who often just have no idea by no fault of their own.
It is hard to hear over and over again that a child is ill. Especially, when it is your child, or your grandchild, or one you love so much. I have had to make so many unorthodox medical decisions, that I often just needed someone to hear my thought process, and let me analyze, and over-analyze. I have gone against the doctors to trust an instinct that was strong in my mind and my heart. Dad was the one who could hear it all out. He heard me without speaking. He listened attentively. He offered advice only when I asked, and offered encouragement always. These were not situations where I just needed my ego stroked. These were tough conversations to have, and he never ever shied away from one.
He simply would bring me back to reality. He’d ground me by telling me to use Meghan as my guide. Check on her health, physically and emotionally. Focus. Trust my instincts. Be able to correct wrong decisions whether they are mine or theirs. Still now, three years later I find myself aching for those conversations. She is stronger. She is tougher. She is amazing. But, there are still so many battles to face and so many difficult decisions to make. That’s when I retreat to my office. I sit in his chair, and I look up at the path of snow in central park, or the Washington mountain top, or the waterfall, or the rainbow and I think. I talk the conversation through as if he were here. Because I know he is. I just have to listen really carefully.
Dad told me once that I understood PTSD because Meghan’s medical battles had left me some ways in a similar state to him. When she was younger, and so sick, that perpetual fear of losing her, the hospitalizations, the surgeries, left me with a need to he “hyper” aware all the time. While I could never profess to connect this to the horrors of war, he did. And I think it allowed him to open up with some of his own stories.
Through those years I heard tales from his mouth I had never known. I heard of battles, and losses and names of people, and places. I listened so attentively. Quietly. As he had done for me. Sometimes I even took pen and paper to write down his story. Because I wanted to hang on every word. Because you just never know.
I found out Dad was sick when I made that Friday night phone call in October 2013. His voice sounded a little off and he told me he was in the ICU at the VA Hospital in Brooklyn. When I asked him if anyone knew he said he wasn’t too sure. But, he said, “now you do.” And he laughed, as only he would at that moment.
I got to the hospital the next morning and we went through the details. At that point no one knew anything. Confused doctors was a topic we had spoken about at length.
The 10 weeks that followed were just a long blur. There were about 4 weeks of me forcing his hand to allow me to take him back and forth to his appointments. Sometime after that he admitted he couldn’t drive himself. That was a tough day. I had already called in my sister, and it was time to reach out to my brother in Texas. Family meeting. The “team” assembled.
And through the some of the toughest weeks, I bonded in ways that can never be broken, with a sister I have always had, and a brother who I was getting to know better than I ever had.
Dad was admitted to the VA on Thanksgiving of 2013, and one week later, on December 4th, we were by his side when the angels came to free him. No more suffering. No more PTSD. Pancreatic cancer at age 65.
I dialed his number for months after. I still know it in my heart.
I spent the months after he died cleaning out his apartment. Dad was not a man of many “things.” His iPhone held no Email, and only one photo. “Never want to put too much information in one place,” said the man who in his soul operated always with the mentality of a 19-year-old combat Marine.
As I cleaned I took every single scrap of paper he had ever written on and clipped them together. I laminated them. It was to be the only way we would ever “talk” again. It is Dad’s quotes scattered through this piece.
He loved light. And I guess for a man who had spent so much time fighting the darkness, his love for light made sense.
Dad was, to our family, and friends, a photographer. “Tom” would have a camera around his neck at all times. He took joy out of capturing happiness. He took pleasure at photographing family events, and sharing his photos with everyone. As we sorted through the pictures, in the months and year or so following his death, we saw some incredible images. We sorted out the family shots from the scenery ones. We put up a sharing site for all those family images in case anyone had never seen them. And we protectively shielded his “scenery” images, and carefully watermarked them, and kept great pains to keep them off the internet.
At some point we will organize an art show in his memory. We will print, and sell his treasures. We will find a place to donate any profits that will honor his memory. We will let the world see what he saw. Dad used that camera lens to showcase the light. To view the beauty in the world. Consistently, when I look around I see “Light Through the Lens…” and in doing so I keep his memory alive.
Dad did not leave us rich with money, or objects. He left us rich with visions and memories. The former keeps you satiated for a little while. The latter can keep you fueled forever.
The last gift Dad left for me, was one I did not see coming. In the weeks preceding his death it had become apparent to me that there was a specific incident in Vietnam that clearly should have warranted him a Purple Heart. I gathered data for him, presented the case, and even after denials came in, and he had passed, I kept fighting.
Holly, a treasure in Dad’s life and ours, had held onto a list of names and addresses from a Marine Corps Reunion they had attended many years prior. I reached out to every Marine in that list, and if they were still alive, they reached back. Over 20 of them. 45 years later. I grew up knowing Dad had 7 brothers and a sister. I had no idea of the Marine brothers scattered around the country.
I have had the pleasure of meeting many of them. And this past summer I brought Meghan to meet a few too.
Alan was the first to answer my letter. From West Virginia he called to tell me he remembered crossing time with Dad. He researched the story I told him about the incident. He found it totally credible, and helped me exhaust every option and every appeal to the Department of the Navy. Ultimately that battle was lost on what I call a technicality, but by that time I had a friend and a confidant in Alan, previously a stranger.
My Dad, although not loyal to a particular church, by the time he died had a solid faith in God, forgiveness, and an afterlife.
I do not know the book this came from, but I found this among his clippings…
My Dad in his passing, solidified my relationship with my sister, essentially “gave” me my brother who I had never really “known” but will NEVER let go of, AND, secured for me a confidant in Alan, and gave me the gift of loyalty that Marines save for their own and their families.
He left thousands of photos. Snipits of his own words, and memories of times that we got it right.
I sometimes always wish that he would answer when I called him on the phone. But, I know. I know that he is flying free. And I know, that while he needn’t be saddled with the cares of this world, that he checks in. That he is nearby when I need him the most.
So when we are driving in the car and Meghan snaps a shot of a sunrise, or the light coming through the clouds in the sky. When she sees the beauty of the world around her. When she looks for the good. When she keeps her friends list short and neat, I see my Dad. I feel him. I know he’s right there for that moment.
Courtesy of Meghan on a road trip to WV to meet the Marines. Always being guided by the light…
Only when you love deeply do you feel great loss. They all hurt. The oldest to the newest. I can not change the way I love. When I love it is with my whole self. Otherwise, why?
This one hurts differently because it took so long to get it right. But, I rest with the gratitude that we did get it right. And once you get it right, if it’s truly right, nothing before that matters anymore.
You may never know the strength you gave to help us remain
21 years ago I was 22. I was single, and a new teacher. I was just out of college, finding my way. I had a sister who was 25 and had just gotten married, and a sister who was 6.
I knew nothing of what life would have in store for me. I knew only of a few wacky surgeries I had had.
I also knew of some scary times surrounding that 6 year old I loved a whole lot.
Sometime around my sister’s wedding, the little one starting complaining of pain. When she volunteered to go to the doctor we were all stunned.
What followed was a blur, and a nightmare, and a million blessings all rolled into one.
There was this tumor, inside her spinal cord. Inside. By all rights, as my parents were shuffled from doctor to doctor, they were told the little one should not be walking.
Miracles followed miracles, and egos evaporated. The system worked the way it should and she was placed in the hands of Dr. Fred Epstein, arguably THE top pediatric neurosurgeon.
Dr. Epstein cared for Kathi in the operating room, and he cared for her out of the OR as well.
I can remember visiting one day when he came in the room with these remarkable cowboy boots. And he sat down next to her, and spoke to her before even addressing the adults hovered around. He was a gifted surgeon, and a true gentleman. He smiled, he laughed, and clearly loved what he did.
I knew that he had changed my sister’s life, well all of our lives, by being talented, and daring enough to get that tumor out.
I learned later he struggled in school and likely had a learning disability. He had been told he wouldn’t be successful. Someone forgot to tell his patients.
A well healed badge of honor.
My sister swam for years, all through college, runs regularly, and has even finished the NYC Marathon.
I hope Dr. Epstein knew of his ripple effects. I hope all of the really great ones know. Because when it’s done right, medicine, surgery, compassion for others, it changes lives.
Kathi doesn’t have Cowden’s Syndrome. And I couldn’t be happier about that. She also no longer has a spinal cord tumor. And that, well, that is pretty cool too.
My sister’s surgery is one of the many things that helps us keep perspective here. Everyone suffers. Everyone rejoices. A diagnosis doesn’t really change that. Everyone has something.
21 years ago, this doctor, and his cowboy boots, and his smile, saved my little sister’s life.
She has this tatoo on her, as a constant reminder of the wise words of this gentle, superhuman.
“We may know too much about the unpredictable ways of the world to expect a happy ending, but we can’t help but hope for one all the same.” – Dr. Fred Epstein
Dr. Epstein suffered an unfortunate accident in 2001 that rendered him unable to operate. He died in 2006. The ripple effects of his work will live on forever, in my family and across the world.
Dates. Memories. Celebrations. Gratitude.
Today we think of Dr. Epstein with thankful hearts. Thankful for the memories he has allowed us to have, and for the ones we will continue to make.
September 22, 1995 – 2 months before her surgeryApril 14, 2000April 15, 2016
Meghan loves to swim. I mean, athletically it wasn’t where she started, but the knees. Six surgeries on the right knee, and there was to be no more soccer, and no more dance. After the 6th one, there was to be even no more breaststroke. There is no gym class in school. There is limited walking. There is one foot, a size bigger than the other. The “off sides” that that creates in her body can be quite painful. But, the pool…
Oh, how my girl loves the pool. She is an athlete. She is a competitor. And the pool allows her to be both of those things to the best of her ability.
For the 3rd time in the 4th year since joining swimming, this September brought a new coach for her, and a new group of teammates. There was anxiety about the switch on so many levels. But, as we always say, life has a funny way of working out.
This coach is a perfect fit for her. They practice hard, and often. He is structured, and firm. But he is compassionate, and constructive. He watches. There are sometimes 50 or more swimmers in the pool when he coaches, and I swear he does his best to make some comment to each of them every practice. And, after they compete, his feedback always connects to practice.
And practice, for Meghan, has not been a problem. While maintaining a “Pupil Path” account that no one could ever critique, and planning a major fundraiser, and looking for high schools, and managing doctors appointments, and a mom who doesn’t feel quite herself, this girl has, most weeks, attended practice, Monday, Thursday and Friday afternoon, as well as Tuesday, Friday, and Sunday morning. Quite literally, swimming is good for her health.
Swimming can be a very solitary sport. It takes a good deal of mental toughness to stare at a black line for hours. Interactions with teammates on deck or during dryland (out of water training) are cherished.
Even then, as the “new kid” in the group, you can sometimes wonder about the relationships. Meghan has been very careful not to share too much of her Cowden’s story with these swimmers. She wants to be viewed as one of them, and she is doing a good job holding her own, all by herself.
And then there was today. We were at a meet and she was scheduled to swim the 200 yard butterfly. If you swim, no explanation is needed. If you don’t let me give you a frame of reference. For the group she swam with today, 72 girls swam the 100 yard freestyle. 10 signed up to swim the 200 yard butterfly. It is not an event for the faint of heart.
Meghan feared disappointing, herself, her coach. me. She was scared out of her mind. So scared that it was out of character. Out of character for a child that has had 17 surgeries, and countless tests. ER visits, and hospitalizations. She was that scared.
And as the race approached I watched helplessly from the stands as she began to unravel. And I watched with a grateful heart as teammates picked her up and put her back together again.
The one who I can only say was acting as my angel, talked her right onto the block. It only took a second of my attempt to video the race to see that something was terribly wrong. There sat her goggles, first mid face, then in her mouth occluding her breathing. In butterfly you can not break stroke. At the end of the first 50 she stopped. She was done.
My heart sank, and ached for her. I wanted to pick her up and hug her, and take her back to the rocking chair I used to use when she was a baby. But she’s 13 now – so I could only watch.
The official came to her and asked if she wanted to try again in the next heat. There were 2 lanes open. She said yes. And as they placed her in one heat, her friend, my angel, came to the official and asked if Meghan could swim, “in the lane next to me.” She said yes, and as Meghan barely got settled on the block, another teammate flagged the official to wait a moment. Meghan’s goggles were still not on.
The start went fine this time. The goggles stayed on. And she did it. The whole thing.
By the time she got to her last 2 laps, most of the other girls were finishing. But, then there was more magic. There was cheering, from her teammates and strangers alike. There was a push for her to get finished, to press on, and to make it. So, she did.
I think I cried the last two laps. I was struck by this child of mine, her life, the adversity, and the stubbornness. The ability to not give up. The desire to be normal, and to succeed. And as she touched the wall her team mate, that same angel, swam right into her lane and gave her the biggest, most genuine hug.
She did it.
Not too shabby for the first time. And more than one teammate whom she respects greatly told her they gave her credit for getting up and trying it again. So did her coach.
Meghan isn’t the “cool” kid. She sometimes struggles a little. But, she remains true to herself at all times.
Today, she got to see the kindness in others. It was pure. It was genuine. It was unsolicited. It was the best kind.
13-18 year olds can be a tough group. But these kids showed today that when they are left at their “default” setting, when they are alone and see soemone hurting, they will choose kindness and compassion.
She is asleep. Tomorrow is another day of swimming. But, those events won’t cause this angst.
Gratitude fills my heart, that once again even at the toughest moment, good shines through.
And as she said goodnight, she told me, “Next month, when I swim the 200 fly…”
Resting your voice is not like resting your knee, or your shoulder. Resting your voice is more like resting your heart, or your lungs.
Something is kicking my butt. And I’m not sure what it is, but I am so not in the mood anymore.
This has been one chaotic stretch.
FInally recovered, mostly from my way too soon implant exchange in August, and my broken toe 2 weeks after, I am battling with trouble in a place I least expected to find it.
This summer I heard, “vocal cord nodules” for the first time, after feeling somewhat hoarse since April. I was quickly reassured by tons of people that these are “normal” and would resolve if I was careful. The doctor didn’t say too much, besides directing me to begin vocal therapy and return in three months.
I knew enough to listen when I was told to start therapy, and I did. Begrudgingly, and convinced it was bogus, I made my way to the recommended therapist. We got in a few visits before school, and then had to switch to weekly as my schedule just wouldn’t allow more.
For about four sessions I felt utterly ridiculous. Then I started to “get it.”
I struggled when I started work, and was told to purchase a “tour guide” microphone. I did, and the small 20 amp speaker with its wireless microphone have been an incredible help. Despite looking like a frustrated pop singer, I am able to talk longer, and with less strain. I am learning to speak differently, and in ways that are often unnatural to me, all with the desired end result being to reduce the stress, impact, and inflammation on my vocal cords.
I saw the doctor for a follow-up on October 11, and I got a very “Cowden’s-like” mixed report. I was told that the vocal therapy had decreased the inflammation. (YAY!) However, the reduction of inflammation makes me a better surgical candidate. (I had really hoped I could just make it go away.) AND, there was now a new, or newly visible “striking zone lesion” on the other side. Both of the lesions were not “typical,” and would not resolve alone. Both lesions appeared to have vascularity to them. And, the “striking zone lesion” was irregular in shape.
Despite his 99% comfort that the lesions were benign, I left with instructions to continue therapy, and to plan on having surgery close to the summer to remove the lesions. I was told for the first time ever, that I would need to practice COMPLETE VOCAL REST for 7 days post operatively, AND for the next 7 days, I would speak approximately 1 minute for every hour. The next several weeks would entail a slow progression back to my full voice use. The thought of it completely freaked me out.
At voice therapy, there were conversations about Cowden’s Syndrome, and our tendency towards over-scarring. The very real possibilities of what excessive scarring would do were discussed in a casual conversation. By this time I am comfortable, and confident in the therapist. She is smart, witty, and honest. She’s real without being painful. She also cares – about me, as a human, a teacher, a mom and a wife.
So, I had really hard conversations with my husband about the future, and I strengthened my resolve. I charged my microphone, and I found the voice that exists out of my throat. I have started to shorten my sentences. I’m learning.
About 3 weeks ago it started to get worse. Slowly and steadily worse. Every day I would do my exercises, and I just couldn’t get the sounds. My air was becoming a battle. The inhaler became a part of many days. I slept as much as I could. I stayed hydrated and took extra vitamin C. I ran no fever, but my chest felt full. My head was pounding.
I stopped using the phone for anything but texting. That was NOT the turn of events I needed, as I was struggling to keep up with people anyway.
Finally, I went to the urgi-center. I was told I had “a lot of fluid” in my head. I changed the allergy medicine. I took a nasal spray. I got a short course of antibiotics because it was lingering, even though I had no fever. I upped the saline, and the steam.
I barely, and I do mean barely, got through the day Friday.
Saturday I sat at therapy, so frustrated. She was so patient. So wonderful. She told me she had been researching Cowden’s Syndrome, and there wasn’t a lot out there on its connection to the vocal cords. We had kind of established that even if the Cowden’s didn’t cause the lesions, we still have to proceed knowing my body has Cowden’s and it affects everything. We can NOT scar the vocal cords.
She had looked at my exams from July and October. Side by side. Frame by frame. And very clearly stating, “I’m not a doctor, but…” I hung on every word. I processed them with respect. Some of our best help through the years has come with the premise of “I’m not a doctor, but…”
Vocal rest. That’s where we’re at right now. I am supposed to rest my voice when I am not teaching.
This is NOT an easy task. I’ve been at it for 4 hours now and I may lose my mind.
This is isolation at its worst.
The lesions won’t heal themselves. I can just get ready for when I need to heal. I can prepare for a lifetime of speaking in a way that babies my voice. I can practice being silent when it is so much the antithesis of my nature.
This time beating cowdens will require patience, strength of mind, and stamina.
It’s messing with me. But I’ve got this. I’ve got this.
If you don’t hear from me… try my email. Or texting. My typing skills will be improving greatly….
September is a marathon of sorts. Although all the training in the world can never quite prepare you for the twists and turns needed to navigate it through to completion.
September is establishing new routines, in my own classroom, and in our lives. September is learning new students, and new teachers.
Each year, it is about pushing our bodies farther than we have ever been able to. It is not just about surgical recoveries, or broken toes, it is about swim. So much swim. It’s about swim before sun-up, and afternoons too. It is about drama and singing and doctors in between. It’s about finding the inner strength to press on.
It’s about balancing it all. Work, school, after school, meetings, and the like. It’s about stopping to find the beauty, and the sunrise, and the simple pleasures along the way.
This life, this chronically ill life is lonely. I’m not going to lie, or even try to sugar coat it. It is lonely. But, we three in this house embrace and press on. Because, really, there is no alternative.
There is no fault, no anger, no resentment. Reality is that every moment is spent using all the “spoons” we have to get through. At this moment there are no extras. Family and friends who comprehend will still be there with open arms when there is a “spoon” or two to spare. The rest will have found their own way, and that is a loss we will have to take in stride.
Everyone has something. All lives are busy. All lives have joy, and angst. All we can do is take what is in front of us and do the best we can with what we have where we are.
The worry in my heart runs deep. There is reason for it, yet I battle it all the time. It can not, nor will it, define me, or our lives. Regardless, it lingers always, lurking in the shadows.
My girl continues to amaze and impress with wisdom beyond her years.
For her birthday Meghan had a very specific request this year. One of her gifts was, “The Unabridged Poetry of Robert Frost.” I was familiar only with one of his most famous poems. Meghan read this book fervently for most of August. I think I understand why now.
Lab work tomorrow to keep those thyroid hormones in check. We need our strength to remain
Calm down. Relax. It’ll get done. Take a breath. Why do you get so worked up?
These words could be spoken in several alternate languages for all the good they do for me. They make no sense. I mean, on a cognitive level I understand the words. And even the context. But, they hold little practical application for my life.
I am Type A. Yep. For it’s highs and lows, positives and negatives, I am a Type A personality. Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.
I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me. She has 4 boys. (She used to be full on Type A. Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)
I am high-strung. I am focused. I am task oriented. I am all about getting it done and getting it done well. I get pissed when other people fall behind on their jobs. I want order, structure, and routine. I make lists on top of my lists, while putting alerts in my phone to avoid missing anything. I have a hard time forgiving myself when I do.
I am a work in progress.
But to some extent, regardless of your personality type, I guess that’s true of all of us.
September is chaos. True, unequivocable chaos. Here, in this house. Here, in my mind. September is the toughest month of the year.
And apparently I’m not alone, because this article really cracked me up. September Is The Worst
If I could jump from August to October, it would be smoother. And I’m not a big fan of wishing my life away. But, transitions are especially tough on the Type A among us.
And, when you’re a teacher – well. That’s just a whole other story. But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly. With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can. Figuring out who has allergies, and who has an IEP is another struggle. Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing. Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock. There’s no way they even remember my name, let alone where they should sit in my room. Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October. Copies of the schedule, printed, Emailed, and hung everywhere. Supplies, traffic patterns, expectations, all need establishing and reminding. That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.
The agenda that is busting at the seams. Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok. Setting up the school and after school schedule for the child(ren) is a full-time job on its own. August looks so nice. The calendar lulls you into a false sense of security, as one by one the activities start-up again. And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop. Never mind hair cuts! There’s the one time deals, like back to school night, and “returning parents swim meeting,” Every minute of every day seems to hold something. I know I have only one kid, but that doesn’t mean she can take herself to swim practice. Or pick herself up. Or that most of the time I can even leave her there, as lingering fears about her health are always present. And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school. And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release. I think there’s a few minutes on Wednesday between 3 and 4 for sunshine. Oh, wait… groceries…
And to the left of me sits the Open House Schedule for High School. Still shaking my head as to how THAT happened, I am trying to figure out their days of the week. Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October. There is the TACHS test, and the Specialized High School Test. Although I’m not really sure when there would be time to prepare. Unless, maybe there’s and app for that?
I haven’t even mentioned our health. Isn’t that just funny? It hasn’t rested one bit. And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A. Chances are good they like to excel at EVERYTHING. And in my case, I am willing to throw it at them. Hard.
Some time towards the end of August I had surgery to replace my implants. Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time. That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds. Her levels were off again. Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling. More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks. So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask. I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning. My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it. But mail order takes 2 weeks. And there was no telling whether she’d be on the dose for more than 6 weeks. But, whatever. I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.
And then the real battle ensued. I tried to get it from one doctor. They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order. I called the office of the endocrinologist. Twice that Monday. And again on Tuesday. I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility. The ‘ office said they’d send them. The MyChart people said they’d look into it. I waited.
Exactly a week. There were no labs in my mailbox. I called the endocrinology office again. I got someone who promised to send them and did. I called the MyChart people again. No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.
REALLY???????????????????
Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records. But, this, this is THYROID blood work. She doesn’t want it. TRUST ME. She just wants me to give her what she needs to feel well. That’s it.
I processed all I could about this at the same time that I got ANOTHER bill from this hospital. The date of service looked familiar. I keep copious records. (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit. And NOW, they were asking me for 2 additional Co-Pays. Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits. I called the primary carrier. They reversed the charges, but told me the billing practice was not illegal. Ok, then its immoral. And it preys on people who are sick, or who have sick kids. The insurance company also told me it was ON ME to call them when this happens. ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.
Good, cause I needed something else to do.
By the first Friday in September I had had it. I found the CEO and Head of Patient Relations. I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.
I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it. One mail even came second day express. Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.
I received a letter from Patient Relations that they were reviewing my concerns. I’m not holding my breath.
That same Friday I tripped and fell and did some number on the pinkie toe of my right foot. A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion. The 3 hours I spent visiting the last podiatrist was a waste of my time. So, I am in a post op shoe for some infinite amount of time going forward. Because there is little chance in heck the right foot is getting into a sneaker any time soon. Good thing it’s the perfect month to “take it easy on the foot.” (Insert sarcastic grin here.)
Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold. It still gets to be called “benign appearing.” I was also told I have “significant vocal fold atrophy secondary to premature aging.” Well, that sucks. Because I thought atrophy took place when you didn’t use something. And oh, I use my voice. And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move. It all comes back to Cowden’s somehow.
Over the weekend I noticed that the knots from the implant exchange were getting irritated. This doctor like all the others had been warned, I don’t dissolve stitches. But, as wonderful as he was, he also needed to be shown. I clipped one of the knots myself and there was immediate relief. Then I second guessed myself. By Monday the site I hadn’t touched was red and warm, while the other was healed. I took a photo and sent it to the PA. Come in tomorrow she said. So Tuesday afternoon, my surgical shoe and I trekked into Manhattan. She pulled the stitches, read a low-grade fever, and marked the redness. She scripted me with 5 days of antibiotics but told me to wait 12 hours. Wednesday morning I sent her a photo. “Looks better, right?” I said. “Start the antibiotics,” was the reply. So, I did.
Friday, Meghan made it to morning swim practice. 5:15-6:30AM. I dropped her off, and headed home to shower. I met her with breakfast. We stopped off to drop her bag, and were at her school by 7:22. I picked her up at 2:20 and she made afternoon practice. I was tired. She made it to youth group too. I was in bed by 10.
Friday I spoke to the endocrinologist – finally. I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication. I don’t think it will happen again. We talked it through. Wednesday the 28th we’ll head to the hospital lab to repeat. We are going there because then there is no chance for anyone to blame a variation on a different lab. But, that’s ok cause there is that free hour on Wednesday… He will call me on the 30th with the results. I believe him.
I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.
This morning Meghan woke up with a sore throat. She had to skip practice. That’s always a tough call for her, but the right one. She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.
Slow it down.
Hmmm.
I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold. We have to gather enough spoons to save for something fun. Anything. But there are no spares. Especially not in September. (If that last paragraph confuses you – you can Google The Spoon Theory)
Sometimes, when I have a minute, I think about calling some of the friends I miss a lot. But, I don’t. They have crazy wild lives of their own. My fears and anxieties and worries exist, and so do theirs. But for some reason right now, they largely exist separately. I miss them. And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.
I am super-blessed with a husband who not only tolerates my Type A, but works with me. He cleans, and cooks, and remembers to make me laugh. A lot. Often at myself.
I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life. One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world. Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.
Friday, I tripped over something in my hallway. I wasn’t looking. I ended up against the wall, screaming all sorts of words that I am sure were inappropriate for my daughter to hear. But, for about 60 seconds I let them go. I screamed while the pain was too intense for me to breathe. I screamed about my stupidity. I screamed with certainty that the foot, or at least the little toe, was broken. Because it was that kind of pain. The kind that makes you sure.
Friday 9/2
After some ice, I tried my best to jam it into a sneaker. Less than 2 weeks post op from the implant repair, I was not interested in losing my ability to walk to relieve stress. However, my efforts were in vain. That toe wasn’t even close to making it into my sneaker. No way. No how.
I took Meghan to swim practice, and called my husband to meet me. I figured when he tagged in I could go for an x-ray. Just on the off-chance it was more than the toe. Because every memory I had was of “you can’t do anything for a broken toe,” I was hoping…
I kept busy in the hall above the pool. I had my laptop and all I needed to continue to pepper NYU with what I really feel are immoral and unethical billing practices. Along with 2 weeks worth of a records retrieval nightmare, where I could not gain access to Meghan’s lab work from earlier in the month while her doctors were on vacation, and the online system was a classic, epic failure.
Definitely feeling the adventure!
I propped the foot to the side, and used the hotspot on my phone to send the 14 page document I had compiled off to the CEO of NYU and the head of Patient Relations. Then I copied one of her doctors, a lovely woman who I doubt has any clue how these things are done.
When I finished that I called on a bill I had just received. Same doctor for Meghan. Two dates of service. No evidence of my secondary carrier billed. My $30 copay times 2 requested as payment. I asked, innocently why the secondary isn’t mentioned. I was told they didn’t pay. Didn’t acknowledge the claim.
I made my notes, to follow-up. I did. Amazing what technology will do me. This facility was paid THREE times for the January visit alone. A visit totalling about 20 minutes generously. They COLLECTED over $1,000 from the three separate claims. And they were STILL hitting me for money. My older, weaker self would have paid. Just to shut them up. I’m not that person anymore. I am strong. I am tough. I am morally and ethically strong-minded. I will pay what I owe. The rest I can do with as I decide, not them.
They are sneaky. They prey on those who can not figure this out. I am developing a spread sheet I will have to enter all data into to stay on top. But, I will. And when I have enough I will expose them. I will do it for the people who can’t. Because some things are just flat out wrong.
I thought of all this as I found my way in the x-Ray machine Friday evening. The tech was sweet. She was kind. We laughed. Without saying anything, she said it all. “I think you might want this CD. Why don’t you just wait for it?” Sure…
An elevator ride up I was informed of a displaced fracture of my right small toe. They can’t be sure if it’ll need to be properly set. I need to wait about a week. Until oh, I don’t know, the FIRST DAY OF SCHOOL?
Saturday 9/3 – I did manage a polish change!
I spent Saturday morning in vocal therapy. Apparently she’s waiting for confirmation that I don’t actualy have nodules, but rather some type of vascular lesion on the left vocal cord. Tiny. Benign. Therapy the same. Prognosis not quite as good in terms of self-resolution.
Stitches sticking through the streri strips on my newest boobs, a boot on my right foot while I track down a doctor. A voice that may work, or not…
School starts for teachers tomorrow. A hot mess of me headed in to meet my schedule.
I am bent, bruised and strained. My toe may even be broken. But, not me. I won’t be broken. Ever.
It’s mind over matter in so many ways. And this mind. Well, it matters. I’m all over it. #beatingcowdens is not for the faint of heart, but we’ve got this.
For right now, with a little help from the Captain… 🙂
As I sit to write this some time in the middle of the night, I am reminded of the early years, when so many of the middle of the night hours belonged to the two of us. Yes, Meg, I said YEARS.
You struggled my girl, but your determination was evident early, like the day the NICU nurse called you feisty. She was right. And it has proven to be one of your finest and most valuable attributes.
When I look back on pictures of those early years, it doesn’t seem all that bad. I guess I never had time or desire to photograph some of those tear-stained days. And maybe. if it wasn’t for the colicky cry seared into my brain, I might have even come to forget that you considered sleep optional, crying and screaming mandatory, and that carrier pouch a requirement for all things. At one point we had even taken to calling you a kangaroo baby…
You and your tired Mommy!
But, I look at the babies in those pouches, And I think to those mother’s “enjoy it.” You might find this hard to believe my dear, but there is not a single minute I would change or do over. Every step along this journey with you has BEEN the journey. And I have the deepest gratitude that God selected me to be your mother.
The path hasn’t been easy. Sometimes it’s been rocky, and a little unsettled. Other times its been like traveling through fire. On a bicycle. With no handlebars. Backwards. But, I think we’ve all found pieces of ourselves we never knew existed, and there is a family bond between you, and me and Daddy that so many envy. Not for what we’ve done or where we’ve been, but rather the fact that we have done, and continue to do it all together.
At eight years old, you were tossed a diagnosis of a Rare Disorder, a 1 in 200,000 PTEN Mutation called Cowden’s Syndrome, that has leveled many grown adults. But, by eight years old, you were already seasoned at doctors, OT, PT, and speech. You’d been there, and were still doing dome of that. At 8 you were intimately aware of what it meant to spend hours waiting for doctors, and you had a clearer visual of an operating room than anyone should ever have. So really, in reality, that diagnosis just pushed us in the right direction to continue to help you become who you were meant to be.
It’s rotten to be the “unusual one” the one with all the risks and the need for that “hyper-vigilant” surveillance. But, I’m thankful.
See without Dr. Jill to push us to your diagnosis, without all those things falling into place, it’s likely I wouldn’t be here to write this. Your diagnosis led to mine, and while I am intimately connected with the reality there is no guarantee of tomorrow on this earth for any of us, my heart is sure that you, my angel, my gift, you my dear saved my life.
I watch you with each passing year, and the challenges pile on top of themselves. And we both sometimes want to stop the presses and scream, “IT’S NOT FAIR” and the top of our lungs. but then we laugh. “Fair” is just a silly word anyway. It’s not the perspective we use. It’s not worth our time.
You approach this birthday with 17 operating room trips under your belt, and too may ER visits and, tests, and hospitalizations to count. You have had to make decisions, and think thoughts that are beyond the scope of what you should contend with. But with grace and dignity you proceed, because none of that is what defines who you are.
Grace. Poise. Strength under pressure.
Despite unimaginable pain, you press on. Your body would not allow for dancing school or soccer. But the competitor in you was not to be silenced. Running was out of the question, so now you “fly,” in the water, 11 months a year 4-5 days a week for hours. You pull energy out of the crevices of your toes to push through when most would curl up and give up.
First season swimming, a few weeks in. Spring 2013 2016 Working on your “fly”
You press on in the community, focused to raise the necessary founds the PTEN foundation will need to create our patient database. But, you will not turn your back on the charity where you began, Global Genes, “for the babies who can’t speak for themselves,” you tell me. You make flyers, select venues, advertise and collect raffles. You speak at schools and organizations across the Island who will have you, to raise awareness that rare diseases are everywhere. For the last 2 Februaries we have celebrated Rare Disease Day with almost 200 people, gathered because you have a mission.
Youngest “Woman of Distinction” recognized in Albany by Senator Lanza in May. Proudest parents.
I watch you talk to people and I swell with pride. When you’re intermittently stuck in that wheelchair you hate, you decided to help the doubters, the starers and those passing judgment. A simple business card with a phrase you helped create “Cowden’s Syndrome – Rare. Invisible. Real.” It starts a conversation, or it ends the behavior. Either way you manage with grace to rise above.
You take the high road so many times a day. I know it’s not easy. And I know there are people in your path every minute determined not to make it easy. But, truth be told, as we are learning, there are others out there. There are real people, at swimming, at youth group, at SICTA. There are real people who are finally recognizing that you are pretty spectacular. And I don’t mean that in a ‘who is better than who’ way. I mean it in it’s best sense. Everyone is spectacular in some way. You just learned it a little early.
As you turn 13 this week, I wish you so many things, from the depths of my heart and soul;
*Never lose the magic. Ever.
ALWAYS remember THAT feeling.
*Never compromise yourself for anyone. Remember that doesn’t mean to be brick wall stubborn. It means to keep those morals. Rise above.
*Always remember no matter how wild and crazy the world gets, you’ve got two parents who will love you regardless… and that is a PROMISE.
*Smile, sing, laugh, act, dance, be sarcastic, and sensitive, and guarded and silly, with a healthy touch of humor thrown in. Do it all always with respect.
*Continue to constantly take every obstacle tossed at you, and it toss it back, or walk past it and move on. When they tell you you can’t, find a way to show them you can.
*Never let anyone make you feel less than. You, you are enough. You are always enough. God said so, and He is smarter. Trust.
*”Be the change you wish to see in the word.” – Ghandi
Your teenage years will be a giant path of self-discovery. It won’t always be smooth. But nothing is.
Be you, and it will fall into place. And in the off chance that none of that works, I’m not going anywhere.
I love you from the bottom of my heart. You truly are the child I was meant to have, and there is NO ONE I’d rather be #beatingcowdens with, than YOU!
Happy 13th Birthday! You will always remain, “My Most Thankful Thing!”
I love you ALWAYS,
Mom
Thanks for bringing out the best in me. I love you more than you know.
beatingcowdens 