With another fall season upon us, life is in full blown crazy mode. And, to be honest, we wouldn’t have it any other way.
Yesterday, my 12 year old FINALLY throughly enjoyed a Halloween. It was such a thrill to watch. FINALLY, she was able to trick or treat, EAT a few treats, AND keep up with some serious walking with friends.
Of course, she slept until almost 1 pm, even with the time change, and woke up unable to move her AVM knee. These are the repurcussions we expect. She is not “normal,” but when she can pretend for a while when it really counts… well that is a great success. And even as she lay still most of the day, she smiled. She sang. Joy.
Fall is full of things, and so far she’s managing nicely. With a marking period to end Friday, Pupil Path tells me grades are at an all time high. Practice 4 times a week has her swim times at an all time low. And, drama twice a week is leaving hopeful anticipation as “The Wizard of Oz” is soon to be cast.
She is working with me to plan our second fund raiser in February. We chose a date close to World Rare Disease Day, with the continued desire, and intention to bring awareness to our rare disease, and over 7,000 rare diseases worldwide that affect 10% of the world’s population. We are acutely aware that to be heard, we need to join collective voices. Individually we matter little to most of the healthcare system, overwhelmed, uneqipped to diagnose and treat us. Together is the only way we have a chance.
Last year we raised over $12,000 and donated it to the PTEN Foundation (www.PTENfoundation.org) and the Global Genes Project (www.GlobalGenes.org). This year we hope to exceed $20,000 in donations.
We have brought in Bob Jackson, a performer from Walt Disney World. He will be flying up to entertain our guests. Our whole family LOVES Bob, but Meghan especially will not hear of celebrating a birthday until Bob sings to her. We’ve spent her last 8 birthdays at Disney.
Here is a youtube video that is a great indicator of the FUN time Bob brings!
We have lined up sound with Partners in Sound, and we have Balloon Charlie returning to also help entertain the children.
We have established a children’s menu in hopes that families can enjoy the afternoon out together.
There will be raffles and lots of laughing.
There will be comfortable JEANS and good friends.
We are setting up a facebook group called Jeans for Rare Genes 2016 Staten Island, and we encourage you to join.
Meghan is living life as a 12 year old who just happens to have had 15 surgeries. She is a 12 year old who just happens to have a Rare Disease. She is a 12 year old who realizes that as challenging as life is, so many others suffer worse. She is my hero. She is MY role model.
Together we will make Jeans for Rare Genes a thrilling success. Hope to see you there!
So, four years ago they diagnosed this girl with a rare genetic disorder called “Cowden’s Syndrome.” Soon after they diagnosed her, they diagnosed her mom too.
And the mom and the girl read everything they could find, which really wasn’t very much.
And they asked a lot of questions. Some from the doctors, but mostly from people on the internet who had this Rare Disease too.
They learned a lot. They also learned there was a lot to learn.
They learned about cancer risks, and how very high they are.
They learned about screening tests.
They met lots of new doctors. Some were super awesome, and others were super awful.
They fired the awful ones, and kept the awesome ones.
The doctors sent them for tests, and screenings, and blood draws, and all sorts of poking and prodding.
At the beginning it was pretty much all they had time for.
The girl had lots of surgeries, and lost her thyroid, and then they called her a “previvor” because they said she got it out just in time before it was cancer.
The mom, she had a bunch of surgeries too. In one they found cancer. But she was called a “survivor” because it was all gone. (Thanks to the girl who got diagnosed first and saved her life.)
The girl and her mom ran from doctor to doctor. They sat in traffic for forever. They stayed in hospitals and had surgeries, and tests. Everyone treated them kind of strange. Like they were aliens or something. Their condition was so rare that hardly any doctors even understood what they were supposed to do.
Over time the girl and her mom got a better idea of what really mattered and what didn’t. They started to be more assertive about doctors, and schedules and planning. They started to say, “not right now,” sometimes, knowing that a few weeks wouldn’t matter, but a few months might.
The girl and her mom talked a lot about Cowden’s Syndrome. They talked a lot about Rare Diseases. Sometimes they were really angry. Sometimes they were sad, and other times they were grateful. They saw what some other people with Rare Diseases went through.
The girl and her mom had LOTS of long talks, real talks about tumors, and tests, and cancer, and life.
They worked on some things separately and some things together. But they agreed to get busy living.
That didn’t mean they could ignore the seemingly endless doctors appointments. They all had to be done. It meant they could schedule smarter. It meant they would talk about what symptoms had to be addressed right now and which ones could wait. It meant they had to get really good at communicating.
This isn’t always so easy since the girl is almost a teenager, but they are getting pretty good at it.
The girl had 4 surgeries this year, some more major than others, but she spent lots of time recovering. And she learned that she liked to be busy. She likes to sleep too, but she likes to be busy. With kids. Often. She also likes to be active. A lot.
The girl and her mom still have this Cowden’s Syndrome, and sometimes for reasons no one understands, they hurt a lot. Sometimes the pain makes it hard for one of them to push on. Sometimes the tired almost feels like they can’t go on.
But the girl and her mom, they push each other. They push each other to press on because laying down and giving up is not an option.
Their days are long. The mom works full-time. The girl goes to 7th grade and makes high honor roll.
Their afternoons are full of drama club, the girl’s love of theatre, and lots of swim practice. The days are often 13 hours or more of constant motion.
The girl and her mom, they decided that they might have a Rare Disease, but it definitely wasn’t going to “have” them.
So they decided that whatever comes their way, they are going to be active, healthy, strong, fueled with nutritious food, and built of muscle. This way if Cowden’s punches, they will punch back harder.
Sometimes the mom wonders if life would have been different without the girl. The mom wonders if alone she would have been able to push on.
But she doesn’t have to wonder. Because they have each other. And, because this weekend they spent 3 days at a swim meet. And the girl knocked major time off her events.
And, when they came home, the daddy, who is the glue that holds them together, had warm chicken, and rice and vegetables, the healthy fuel – all ready.
And the mom and the girl were so grateful. For each other. For the desire to fight. For the strength from good food, and faith, and the love of a dad who backs them up every step of the way.
And as the mom drove the girl to youth group at their church, they talked, about the swimming. And about the fundraiser they are planning. So that Rare Diseases scarier than theirs get some attention. “For the Babies,” and so that there can be research for this Cowden’s Syndrome. So that maybe it can get stopped in its tracks.
And as the mom walked home enjoying the fresh crisp air of Fall she was filled with gratitude.
For this story of BEATINGCOWDENS has only just begun. And each chapter holds more promise than the next…
I once read a story where a special needs mom described her daughter’s seemingly “over the top” fear of needles to a phlebotomist who had no frame of reference, compassion, or desire to understand. The phlebotomist had written the child off as poorly behaved, and the mom as one with no control. This mom said plainly to the phlebotomist, “It’s not you. It’s not even the needle any more, at least I don’t think so. You are AN ACCUMULATION of botched blood draws and rolled IV attempts. You are an ACCUMULATION of her being stripped of her control, and of all the pain that has come from those needles.”
That story stuck with me in the deepest way. And I have told doctors, nurses, and phlebotomists alike, whose egos are sometimes easily bruised by an incredibly anxious 12-year-old, not to take it personally. That is if course unless they get it wrong and add to the problem…
Tomorrow morning Meghan will head to the oral surgeon for general anesthesia and surgery 15.
The surgery itself this time is not that unusual. The wisdom teeth are impacted and the bottom two will come out tomorrow. Years of orthodontics are complete, not to be damaged by over-anxious wisdom teeth making an unwelcome early appearance.
I say it’s not unusual. Except that she’s 12.
If you think about when you had your own out, my guess is you were somewhere between 17 and 21. And, at the time you had them done you knew at least a few people your age who already did it. And you were in turn “there” for your friends that followed.
Except once again she’s braving unchartered territory alone.
For those that have challenged her on calling this “surgery,” I will remind you that is probably how you referred to yours. At the oral SURGEON, under anesthesia.
There have been countless well-meaning adults, telling her about their wisdom teeth, and how it’s no big deal.
And while their intentions are good, I bet there aren’t going to be too many people absent from her junior high this year to get their wisdom teeth pulled.
As “normal” as things are, they just aren’t.
By the time her friends get theirs done they will not remember, and I’ll likely have to vouch for her story that hers came out at 12.
The oral surgeon’s office called to remind me she shouldn’t eat or drink after midnight. They shouldn’t worry. I stopped any use of NSAIDs, and fish oil, and unneccessary multivitamins a few days ago.
We’ve got this.
She just shouldn’t have to.
It’s a recurring theme. But, we will endure. Because we have no other option.
I have been walking around all day with that nagging feeling in my stomach.
I have packed my bag, and Meghan’s too.
I have filed, organized, and made lots of lists.
There is a new schedule on the wall – color coded and everything.
The calendar says it’s time, but my heart, and my stomach beg to differ.
Summer was to be about beaches, and barbeques. It was to be about road trips and freedom. It was designed for friends, and fun, and get-togethers.
Except that most of that never came to be.
There was that knee surgery in May, that derailed any hope of walking long distances for a while, and thrust us into 2x a week PT. Which, even though we LOVE Dr. Jill, can be daunting in the schedule. And, it eliminated most day trips that could easily be taken for granted, if you don’t have to factor in that a walk more than about 3/4 mile is out of the question.
And while that was going on Daddy was rebuilding the deck. Alone. For three months. Every spare minute of April, May and June. It looks so beautiful. Maybe next year we will get some people over to relax and enjoy the deck, and the grass. The new grass, artificial, durable, and a drastic improvement over the old side yard. Yes, maybe next year.
We got the pool open the first week in July. And July had drama “camp,” and I use the term VERY loosely. And July had swim practice. And July had doctors, some regular, like PT, others on the 6 month schedule. And some blood tests, and some ultrasounds, and a bone density test for mom. I think I stopped counting at 30 appointments.
But, thankfully August had Disney. And there are few other things that can bring me such joy as a vacation with my family to the “Happiest Place on Earth.”
And August had it’s own set of appointments, including hand surgery to remove a vascular lesion from her palm. And setting up the whole wisdom teeth thing for September.
So it’s easy for me to be sad. And down on things. Because I want a do-over. But, I guess that’s normal. Because most people probably do.
I sat down tonight to get my head clear. To “flip it,” and get my head and my heart in the right place for tomorrow. I sat down to acknowledge the many things I have to be grateful for, and the things that went WELL this summer.
So, in no particular order…
The new deck. No splinters. No maintenance. Pretty. And finished.
The new grass.
Walking barefoot in my backyard.
Road trip to West Virginia, that I took alone, on a very rainy June weekend to meet some Marines. Healing help.
My road trip to West Virginia
Listening to my girl sing. In pain. In joy. In the shower. In the living room. In the car. Anywhere.
Healing progress. From both recent surgeries. And the resilience to continue to endure.
Laughter. Mine. His. Hers. Friends of hers. Strong laughter.
Disney. I’d go back three times a year if I could.
Graduation party, bridal shower, and a wedding. Mom being 18 years cancer free. Meghan turned 12, and Felix had a birthday too! We celebrated Pop’s 96th birthday. Celebrations.
Board games.
Green tea – together.
Trips to Ralph’s.
Watching my all time favorite movie, “Dead Poet’s Society” with my girl.
Nutrition packed shakes, EVERY day. Even in Disney. Fueling my body.
Reading a book my friend in Australia wrote about Cowden’s – for all the world to see.
Antibiotics that heal recurrent infections.
Walking. 5 miles a day, most days. and at least 10,000 steps every day since July 8th. Goal met.
Last, and DEFINITELY not least, were my walks with Mom. My healing walks with Mom. There were so many mornings when she and I walked together, 2 miles, with 2 dogs. We talked this summer more consistently, and for longer, than we have in a long time. I think this was one of the best things that happened all summer. She is a strong lady. Lyme Disease took a stab at her this summer. Apparently for the second time. And she has told it where to go. So often she is a grounding force for me in this never-ending battle to remain BEATING COWDENS. I will miss those walks. They were not just for the FitBit, but so much for the heart and the mind.
My Mom. My first hero. My friend. We need an updated picture.
And that is just what my compulsive, reflective, organized self needed.
Because now, I feel a little better. It wasn’t what I had hoped. There was sadness, and worry. for my own girl, and for so many others. For adults I love, and for a former student fighting a formidable battle.
But, I woke up every day. And lots of days the sun shined. And fun doesn’t have to stop just because school starts.
So as I lay my head down tonight I will do my best to do it with gratitude. For new days. For new seasons. For a job with a kind boss, helpful colleagues, and wonderful children. For a job that begins new every year. For the knowledge that every day, every season, will hold blessings and challenges, for us and for everyone.
I wish you all a wonderful fall, but I’m not closing the pool just yet….
Sometimes we need to pause. We pause only briefly, with hope of it lasting the whole week, and the reality that there will be interruptions along the way. We pause, knowing that pain is ever-present, acknowledging with gratitude any breaks we are granted. We pause knowing surgeries will always be forthcoming, but for right now they can wait. We pause because with the pace of this life it is easy to miss the little things, the important things. We pause to enjoy noise that is not NYC traffic, or the sound of a doctor’s office. We pause to quiet the phone calls that need answering. We pause so we are better prepared to battle this Cowden’s Syndrome. We pause to remind ourselves of the beauty, within our family, and around us in the world.
Breathtaking sunsetHanging around the hotelFriendly EPCOT duckAnimal Kingdom SafariAnimal Kingdom Safari
Last week we were in Walt Disney World, in Florida. It is our favorite, actually the ONLY vacation spot we have ever had as a family. We are fortunate to have celebrated Meghan’s birthday there for the last 8 years. Disney is crowded, and hot, and pricey, and all the things the haters of the big Mouse want to say. But, to the rest of us, there is a magic – a magic that endures regardless of age. It’s hard to describe it, unless you feel it, but we do. There is magic in avoiding doctors. There is magic in eating safe food from restaurants, and having a bakery that even makes cookies, and cupcakes for your gluten, dairy, soy free girl. So much of what we can’t do during the year is because of scheduling, and food. It seems silly, but with those obstacles gone, it is a recipe for success.
Even the negativity that tries to get at us, ultimately fails – https://beatingcowdens.com/2015/08/09/theres-nothing-wrong-with-that-girl/
The trip was one of the smoothest we have ever had. (Aside from me unpacking late the first night to realize I forgot the enzymes Meghan needs to eat! Fortunately I ALWAYS have extra, and Mom got them overnighted so they arrived in the nick of time Saturday. Tragedy averted. Magical.)
And I was only on the phone with one doctor. Once. The WHOLE WEEK!
I sometimes look at others vacation photos and think it would be nice, and perhaps a lot less costly, to change things up. It might be interesting to see a few new things. I would love to travel the country one day. But, there will be time for all of that – later. For now it’s about magic, and the treasure of having a preteen who still feels the magic in her heart.
Some Mom time…Some Dad time…And some time to just be 12, all by herself…
There was plenty of time for me to walk. And think about whatever I wanted, or nothing at all. And we three started each day with our Isagenix… (fool me once – but never twice… for those of you who remember last year’s debacle!)
There were days I felt like I could go on forever…
And days to just be a little silly…
And as is the case every year when we pull away from our “home” for the week, I find my heart beating a bit faster. My mind begins to race back on track. And I don’t really like it.
This has been a wild summer. One too many doctor’s appointments, too few days of simple relaxation. And even as I am ALWAYS so conscious it could be much worse, I feel a bit of longing to do it all again, or maybe tack a few weeks on the back-end…
But, time does as it pleases, and eight days from now my girl will be recovering from another hand surgery.
We’ve begun to prepare for fall activities, and we are looking to sure up a date for our PTEN Foundation/ Global Genes Project fundraiser in February.
You should know that I heard you. I heard what you said as you glared at my daughter. I saw you shake your heads in disgust and say, “There’s nothing wrong with that girl, I saw her walking at the hotel last night.” You seemed proud of yourselves, like you had “found us out.” Maybe that’s why you weren’t so quiet. Maybe you wanted the others to hear, and to look at us in disgust as well, while the bus took 4 extra minutes to load my daughter on the wheelchair ramp.
I thought about what you said on and off through the day, and that alone made me mad. The fact that I even gave you a second thought was so much more than you deserved.
Then we caught the same bus home, and I really struggled to hold my tongue as you went at it again.
But, on the way home, I was less interested in you, and much more concerned for my daughter. She wasn’t well, again. And in some ways we are used to it, but it’s never any easier to see. As magical as it is here, it doesn’t change our reality.
Our reality, the reality of daily struggle with an invisible illness, is with us all the time. And even though my daughter CAN walk, she is not physically capable of the walking required to navigate the parks. Maybe its the 6 knee surgeries. Maybe its the after effects of the thyroidectomy. Maybe its the low immune subclasses, or the severe GI issues. She tires easily. And today, because it’s day three, she is already worn out. And even with the help of a wheelchair, she needed us to cancel our dinner reservation and get her back to the hotel to rest.
So, yes. At the advice of her doctors, and the agreement of her parents, because she NEEDS a break from her life, and EVERY protection to help her feel well, she uses a wheelchair through most of the day. And every day before we leave the hotel room we say a prayer for all those who HAVE to be in a wheelchair all the time. We take a moment to pray for their strength and health.
You aren’t the only ones. There are plenty of others who look at my beautiful girl, and think that this is some type of ploy. Which would make us pretty sick people. Because if you really want to feel queasy, push your child around in a wheelchair. Go ahead. Try it for a week. We’d rather she walk. She’d rather walk. So sometimes we let her try. With advil, and about 3/4 mile round trip. There is ice for the knee, and a shoulder to rub. The body behaves like one 40 years older. But, she pushes. To keep her independence. To feel normal.
The next time you wait the extra 4 minutes for the bus to load, don’t judge. Don’t figure you know the who, or what or why, about the person in that wheelchair. Don’t pity them. Don’t feel badly for them. Just be respectful, and assume they fight a battle you know nothing about.
If you want to know more about them, ask. And if you don’t – just walk right on by. And cherish your mobility.
And in the middle of the summer that wasn’t, Meghan’s drama teacher was out doing her thing, inspiring my daughter to step out of her comfort zone and reach new heights. I LOVE the drama teacher. And I LOVE that my girl has no fear.
Summer play. Broadway scenes.
She is SO NOT defined by Cowden’s Syndrome… Not today, not ever.
Kudos to my Mary Poppins, and the whole cast. (Even on their crackly public school microphones!)
I LOVE that she has an outlet that she enjoys so much. I LOVE that she smiles on the stage. I really LOVE everything about the peace it brings to her.
This passion, this will help her as she works at BEATINGCOWDENS!
To the Midle School Girls who doubt my daughter’s medical conditons:
I want to start by telling you, I know it’s not your fault. You are generally healthy. You were raised by people who are generally healthy. You get sick. It gets better. You want your share of attention. You resent that sometimes my daughter needs a little extra help in the halls. It’s not fair that sometimes she needs to sit out of Physical Education. You are tired too, right? It doesn’t seem fair that she needs to leave early from the class right before lunch. You’d like to stretch your legs too. Why does she “get” to being her own food everywhere? And is she really “allergic” to all those foods? Because she doesn’t seem “allergic,” and why does her food wrapper say “milk” when she’s “allergic to milk? She must be lying, right? Looking for attention again? Why does she get to leave early so often? You’d like to get out of last period too. I get it. I understand. You look at people who look sick, and you are probably really compassionate. Except now that you’re older, it’s time for me to let you in on a well kept secret.
Not everyone who IS sick, LOOKS sick.
Take a moment and process that.
Now I’d like to tell you a little about my daughter. The real Meghan. Not the one you always see, but the one I see. The one who I have kissed before 13 surgeries, as she left me for the operating room. The one I have slept beside for nights on end as she gets poked and prodded in hospital after hospital. The one who has shed tears of pure frustration and anger over the things that have been restricted from her life. The one who longs for you to understand, but will not talk about it in depth, for fear that she will isolate you, or worse, that you really won’t care at all.
Let me tell you about the Meghan who knows your problems. The one who genuinely hopes you, and your head cold, stomach virus, sick grandmother, and hurt ankle are all ok. The one who understands deeply your anxiety about getting a blood test. The one who “gets it” on levels you’ll never understand.
Let’s talk about the paraprofessional. While she has been blessed with the classiest, most professional women through the years, do you think for a moment she WANTS to need help? Do you think she WANTS an adult escorting her through the halls? Think about that for a minute. She doesn’t WANT to be different. Six knee surgeries, and a Rare Disease diagnosis have taken that option from her.
And about the trips to the nurse. Any idea how annoying it must be to have to detour to a nurse to hand you medication before you can eat anything at all? Any idea what it is like to never be spontaneous about just grabbing a bite of something? Because your body simply doesn’t make the enzymes it needs to digest food without help.
Please don’t even get me started on the cafeteria. In our house her Dad is a masterful cook, who makes eating gluten, dairy and soy free taste fabulous. But, out of the house? Not so easy. You want to know about her allergies? About how she can be “allergic” to milk and eat a product that contains milk? I get your confusion. But, here’s a tip; when you are confused, ASK, don’t assume. She’ll probably willingly share the reasons with you if you are actually interested.
She spent a large part of her very young years vomiting a lot. Sometimes so much that she ended up in the hospital. Her stomach hurt all the time, and she even had to have her gall bladder taken out when she was 3. She had ear infections all the time and her head was full of fluid. She didn’t talk much, (I know – hard to believe) because her head was clogged up. She cried because she hurt so badly. She was allergy tested for lots of things. Nothing came up. Nothing at all. Then I used my brain. And my instincts. And we targeted some foods.
And do you know what we learned? We learned that without milk, she doesn’t get ear infections. And she learned how to talk right away. And her head stopped being so full all the time. And she could rest.
Then I kept looking. And I learned that soy, in its purest form, caused a rash all over her body.
And when I took out gluten, slowly her joints began to ache less and less, and I was able to decrease the medication she needed just to walk up the steps onto the school bus.
Are they “allergies” in a technical sense? No, I guess not. But, they are just as important. I am forever grateful that she doesn’t carry the danger of anaphylactic shock, but she does have the ability to end up in the hospital from dehydration after vomiting for days when she eats certain foods. Even strawberries. Or anything with seeds. Or anything too greasy. Or cross contaminated. (Like last year in DISNEYWORLD when we needed a doctor after a FULL day in the hotel vomiting.)
So the meal bars she eats at lunch, yes they say, “conatins milk.” But, you know what? They agree with her. She doesn’t love them, but she eats them for NUTRITION, so she can function through the day. The “milk” in there is primarily undenatured WHEY protein from NEW ZEALAND where the cows are GRASS FED and roam free.
Why would she be anything less than honest about not being allowed to have regular milk products? Do you know she has never had ice cream from the ice cream man? I have to send her own pizza and chips and cake to parties. Do you think she doesn’t want the donuts and cookies, and hot pretzels in the cafeteria or at fairs? Does that really make any sense? Ask yourself of all the things to be less than truthful about, does that even enter into logic?
And about physical education. Let’s talk about my daughter trapped in a body that likes to betray the athlete inside of her. Let’s talk about the young lady who can run like the wind, but might trigger a bleed of the vascular malformation in her knee, and at the very least will pay in excrutiating pain. The girl who wants to play longer and harder than any of you, but can’t. The child who craves the idea of just coming in in a gym uniform and competing, for better or for worse, all the time. But, she can’t. Because the surgeon said not yet. And even when she’s able to join in, it will likely be on a restricted basis. Let’s talk about the girl who won’t run Main Street in Disney because she will have to navigate the parks confined to a wheelchair. Walking more than about 1/2 mile consecutively is too stressful on the knee.
Oh, and the tired. Yep, you are tired too. I get it. You were up late last night. Probably watching a movie, or doing something fun. So you are tired. But, she went to bed at a decent hour. Hers is a different tired. Hers is the tired that comes from a body that refuses to accept the synthetic thyroid hormones as normal. Hers is from a body that makes a hobby out of defying her. You’re both tired. But, it’s not the same. Trust me.
This is the girl who stays on stage during drama even if it kills her. Even if the pain is at its greatest intesity, because no one has restricted her there, yet.
This is a girl who gets to swim practice as consistently as she can, so that she can feel, “normal,” while she pushes through the water. This girl has to go to PT 2x a week just to get into the pool. This is the girl who overcame emergency surgery in November of last year for a bleed in her knee to qualify for Silver Championships 2 months later on raw nerve. This is the girl who took less than 2 weeks off from swimming after her knee surgery in May. Because she WANTS to play.
And all those times I pick her up early. It’s not for a manicure/pedicure. Turst me. See, Meghan has a rare disease called Cowden’s Syndrome. She’d be happy to tell you more about it. She got it from me. It causes non-cancerous, and cancerous growths to grow all over the body. She’s been lucky so far, and even though it was a close call when they removed her whole thyroid last February, she is to date a “previvor,” (one who has surgery to remove genetic cancer risks.) But, there is a doctor, and often a surgeon, for just about every body part. There are MRIs and scans, and hours travleing to Manhattan. No, not to museums, but to NYU, Sloan Kettering, Lenox Hill, and St. Luke’s Roosevelt. We do the hospital tour. The average round trip is 4 hours, usually after a long day of school.
This is a girl who has watched her mother undergo surgeries she shouldn’t have to think about yet. This girl has had her mother diagnosed with cancer when she was in 3rd grade. This girl has the same genetic condition as her mother, and the same cancer risks. Some days she has a lot on her mind.
Meghan is not perfect. I know this, and so does she. And if you have a problem, talk it out. Sometimes you’ll be right, and sometimes she will be.
Just don’t assume things. There’s a saying about that… and it’s all true.
You see invisible illnesses, like Cowden’s Syndrome are very, very real.
Meghan is only one of MANY people you will meet in your life who “don’t LOOK sick.” They would ALL benefit from your compassion.
Constant doctors appointments, scans, and blood tests, are not where we want to spend such a giant chunk of our lives.
Food allergies is a term we use to protect her from ignorant or uneducated people who think sensitivities and intolerances are not serious. Forgive me the word adjustment. It’s necessary to ensure her safety.
You see the hardest part about all this for me, is not being able to give you this speech in person. For the last 12 years I have been her voice, her mouth, her protector. Now, on top of everything else she has to handle, she has to find her own way of speaking about all of this. She has to find her own comfort zone.
And I have to watch.
My confidence in with my daughter. She will pick the right friends. She will speak up at the right times. She will learn all about herself. She will become her own best advocate, to you and to the world.
And once she has figured all that out, you’ll realize she’s a pretty fun kid to have around.
The awareness that one day we’re not going to walk this earth anymore.
Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.
We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)
In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.
For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.
Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.
As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.
I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.
And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?
I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.
Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…
My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.
We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.
Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.
This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.
I will protect their privacy here, and tell their story as generically as I can.
I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.
Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.
My Dad, the “Irish Marine”
I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.
I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”
Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.
Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.
We lost the Purple Heart but gained so much more.
I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.
And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.
So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.
Mortality.
They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.
And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”
I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.
And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.
A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”
Once you have looked your own mortality square in the eye, you can not walk away the same person.
But, it is up to you what you do with the rest of your life.
As for me, I choose bonding with people who “get it,” be they old friends or new.
I choose focusing on what we can do, not what we can’t.
I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.
Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.
As for us, in this house, we choose to remain focused on
It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks.
And if they’ve been held in there a long time, it’s really, really hard to make them stop.
I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home. As I approached the room my heart sank and a tear fell. It was empty. That’s never a good sign.
Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.” Which I had figured out all by myself. But, I checked the schedule on my phone to be sure I was right, and I was. 2:30 June 25th. I left work early. Rushed to let the dogs out. Got Meghan. Braved the Belt Parkway. And, made it in just on time.
“Look,” I showed her the schedule on my phone.
She was grossly unimpressed and contacted the doctors direct secretary. She said she called my cell phone on May 18th and left a message. Clearly the message never got to me, likely the result of a simple dialing error. I even flashed the less than sensitive one, my voicemail log on my phone. “See, no call on the 18th.” She was still unimpressed, and now annoyed as well.
Meghan told me this morning her knee hurt. I haven’t heard that with regularity in a few weeks. She told me on the way to the appointment that she was glad to see the doctor today. She said she feels like her kneecap is shifting again. This was a primary cause of her preoperative pain. I could see the swelling. I just wanted some reassurance.
But, it was not to be. Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.
And the tears just started to fall. At first I worked to wipe them away. Then I just let them go.
I was offered a PA, and initially said no. Then I asked Meghan. She said she’d try one.
“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.
YES! I wanted to scream. YES! The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE. Her age is irrelevant. Her experience wins.
So we waited for the PA.
He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.” REALLY? I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,) and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon. We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT. (Summer vacation? Anyone?)
He saw my tears, and saw a weak, unstable woman. I know he did. And for the first time ever I stopped myself from justifying my tears. I simply told him there were many things involved in my frustration that he did not comprehend. The end.
I am done apologizing for my feelings. And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.
And as we got 2 cups of green tea to go, I cried some more.
I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.
I cried because no one really cares. Not really.
I cried as I watched the teen bald from chemo get out of the car. I shed tears of gratitude that it could always be worse.
I shed tears of sadness, for my girl, growing up too fast. Advocating for herself. Standing her ground with doctors. Because she just shouldn’t have to. And I cried for the doctors, who are missing out on a valuable opportunity. They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot. Then I cried in desperation at the reality that they don’t want to.
I cried angry tears for the ones who have no regard for Cowden’s Syndrome. Those who don’t understand it, so they ignore it. They skip over it like a child trying to read a story above grade level. Because they have never seen it, they deem it irrelevant, or unnecessary. They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.
I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments. Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school. I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT. And the following week, appointments for me Monday and Tuesday, 5 in 2 days. Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.
I cried about HOURS of our lives we will never get back. Ridiculous trips that take 5 times as long as they should.
I cried because I am wasting her childhood with necessary evils. And I hate it. I hate it a lot.
I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.
I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.
Eventually the tears dried into a scream or two. My girl had no idea I have those lungs.
And, as we arrived LATE for PT, I breathed a sigh of relief. Behind the doors of Leaps and Bounds PT, they “get it.” So Meghan works on getting better, physically and emotionally in a place she feels safe.
I booked PT through the summer. I had hoped we wouldn’t need to. Not for any other reason than it adds to a schedule we’d rather not have. So that “doctorless month” we’ve been trying to plan for three years isn’t happening this summer.
“I’m over it Meghan.” I told her as we were driving. “I’m over the whole Cowden’s Syndrome thing.”
And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am. I’ve learned a lot…”
And the teacher is the student again.
Tomorrow I will have the tears back in their proper place. Tomorrow. But this is today’s reality, and sometimes that’s OK too. Because regardless – we are
