This is already all over for my local friends, but for anyone else who is interested, this article was written for our local newspaper. It will publish in print Monday, but is in the online paper today. Click the link below.
http://blog.silive.com/gracelyns_chronicles/2016/01/post_23.html#incart_river_mobile_home
Today I dropped my daughter’s iPad. Down a flight of stairs. With no case. I’ve never seen quite so many pieces on a screen. But, it still turns on. And somehow we all managed to remain calm. My husband set the appointment at Apple for Weds. night. Yes, we have “Apple Protect.” Yes, I know there may be a deductible. And, while I called myself several names, I was most impressed that all three of us remained very calm.
Maybe we are learning.
NOTHING is under control really, except how you handle the things that are out of control.
Yesterday I had the dog to the vet. In a little under a year since we rescued her, she has ballooned from 42 pounds to 65. I guess she feels content in my house. We must be doing something right. There was this rash on her belly. And $300 later, with a shot of antibiotics, some antihistamines, and this cone on her head – it’ll be ok.
Except in the middle of the night. Then she needs her Mom to love her cause she can’t get comfortable. But, hey, really sleep is overrated.
On Thursday we went to see the ENT. He checks Meghan periodically since the hospitalization 18 months ago to gauge how her reflux is affecting her throat. It was a bit redder than usual this time. So, we juggled a few medicines and left with directions to find a GI. Easier said than done. Our last one was fantastic, but she took a break from practicing, and our local options are less than fantastic. So we will seek, and hopefully find…
On Wednesday we had the 2 week follow-up from the biopsy. We left with a script for progesterone which is apparently our only option. It’s necessary to slow the growth of those precancerous cells, and hopefully get them to go away. Verified with the head PTEN researcher in Cleveland, through my local geneticist. I hate hormones. Hopefully she tolerates it. Hopefully the cells behave themselves. Three month follow-up, then we schedule the next biopsy. She needs another biopsy so we can have a “clean” one. That’ll be in June. Something to look forward to.
On Wednesday after the doctor, Meghan and I took the train from downtown to Times Square to see Daddy at work. This is truly one of the highlights of her year and there was no way we were missing it!
On Tuesday we stayed home. She missed play practice. She was recovering.
Monday had started out full of energy – with a huge nail in my new tire. Thankfully the car has warning lights to tell me when the pressure is low, and thankfully I got up early, because soon after I got home from getting it fixed, she woke up. In pain. We ended up spending Monday in the Emergency room at NYU. All told about 8 hours, a CT scan, a chest X-ray and blood tests, they found an elevated WBC, and free-floating abdominal fluid. The doctor said it’s likely a cyst burst. She was vomiting so badly that morning I never knew WHAT had hit her. Just something hard. The fluid, in my very sensitive to her body, girl, was likely causing the severe pain – just being there.
Maybe it was triggered by Sunday’s Swim Practice at the Long Course (50M) pool on Long Island. Maybe not. We’ll never know.
Christmas seems like only a blur. Mom had it this year, a kind respite for me. Some time spent with the family. Some time to just be together. It was perfect. And I am so grateful.
The week has been wild, and I guess that’s why I’ve been quiet. But, I am proud to say we have laughed despite the chaos. I can’t think of a day this week I haven’t laughed so hard I cried.
NOTHING is under control. At least not under MY control. And I am going to TRY really hard to be more OK with that.
The schedule for 2016 will not lighten up even a bit. I have an ultrasound Saturday, Meghan has an MRI on the 14th and the knee doctor on the 25th. It will not slow down. I must stay organized, and healthy, and focused. I must continue to eat well and exercise.
Most importantly I must laugh. Often. With my family. With my friends. The adventures will continue. But
Happy New Year to all!
I just ended a 30 minute conversation with Meghan’s adolescent gynecologist. The fact that she spends 30 minutes on the phone with me speaks to a rare spark of passion for her field, and a genuine desire to help. These are things we clutch because they are uncommon, and, when they come at all, they are fleeting.
The long and the short of the pathology, which arrived earlier than planned, was that there was no malignant finding. Yes, you read that right. No malignant finding. (Insert Happy Dance here…)
And the gratitude for the prayers and positive energy was lifted up. We truly are always aware of the potential alternatives, regardless of our situation.
But, as is always the case with Meghan, I encourage you to keep reading. Nothing is ever really simple. And, as the years go by it seems to get progressively more complicated.
While in fact there was no malignant finding, there was not a purely benign pathology either. She had “the best type of hyperplasia you’d want to find.”
Except when pressed, the gynecologist admitted that there is no type of hyperplasia that you’d ever want to find in a 12-year-old, and that there should be nothing but normal cells there.
Hmmm. Hyperplasia. Medicine.net says…. “Hyperplasia: An increase in the number of normal cells in a tissue or an organ. Hyperplasia can represent a precancerous condition.” And various other sites say the same. The doctor agreed. The pathology finding was not “normal,” and therefore it must be treated.
See, hyperplasia, specifically endometrial hyperplasia might be detected in women 3-4 times her age. It might even be expected in women 5 or 6 times her age. But, her age is 12. And none of this is ok.
I pushed her about thinking outside the box, and she reminded me that the entire biopsy WAS thinking outside the box. Any other teen would have been treated for months or more on hormones. That could have had epic consequences.
In the short-haul, she gets to heal from an invasive procedure. In the next week more hormones will be introduced to her body in an attempt to keep the hyperplasia at bay, and most importantly to keep it from progressing. But, hormones, although commonly used to regulate bleeding, require special care in the case of a young lady with no thyroid, a difficult time balancing the endocrine hormones, an extremely elevated risk of uterine and breast cancer, thanks to the PTEN mutation, AND TWO first degree relatives, with estrogen fed breast cancer.
For now, she keeps her uterus. And we hold our breath. We hope that over the next few months things will start to calm down. And some time in the next 6 months the invasive biopsy will be repeated over again to make sure the hyperplasia is gone or behaving itself.
To Meghan this mimics the process that took place at the beginning of the end of thyroid removal. We had about 3 years of progressive biopsies before they decided to pull the plug and take it out. She knows, and agrees, that we will all fight longer and harder for her uterus. For so many reasons. But the similarities can’t be overlooked. Nor can the distressing notion that another body part is misbehaving.
When we were diagnosed in 2011 we were told there would be screenings and monitoring. We even figured on a few doctors every 6 months. At one point we dreamed of getting them all into a week in August and a week in February and living a somewhat normal life the rest of the year.
Instead, in Meghan’s life alone there have been 5 surgical procedures in the last 13 months. Digest that for a minute, because it’s hard to keep track of.
Currently we are monitoring her thyroid levels through blood every 6-8 weeks, visits twice a year, and annual ultrasound to monitor potential regrowth.
We are monitoring her knee where the AVM resides, through twice a year visits to the interventional radiologist and twice a year visits to the orthopedist. There is an annual MRI. And two of those procedures in the last 13 months have been for the knee. Add in surgical follow-up visits, and Physical Therapy.
The dermatologist needs to see her twice a year. Not because anything has been found on her, but because in addition to me passing the PTEN gene to her, apparently her father and I BOTH have Dysplastic Nevus, a “precancerous” condition where moles have a tendency to become malignant. Couple that with the almost 10 % melanoma risk Cowden’s patients carry, and in addition to the sunscreen, there are necessary scannings.
There is the gastroenterologist, who became necessary almost two years ago when the use of Celebrex to control the knee AVM started to rot out the GI tract.
And the ENT who was added so he could monitor the larynx to avoid unnecessary endoscopy but gauge improvement from the scary state she was in in May of 2014.
Oh, and the doctor who prescribes the digestive enzymes because they work, and no one else will.
And the pediatrician who doesn’t like to go more than 3 weeks without examining Meghan, who also keeps her on Acyclovir, prophylactically for chronic HSV that recurs on her face.
And, don’t forget the hand surgeon, who we love, (who doesn’t have a hand surgeon on the team?) who has twice in 3 years removed vascular lesions, one from each palm. And those surgical follow ups.
Nothing is neat and clean. Nothing is contained. Nothing ever fit into those 2 weeks we once dreamed about. This disease has projectile vomited all over our lives. And it’s everywhere. And it’s messy and gross, and we just want to take a hot shower and move on.
Because we haven’t even discussed fitting in MY appointments…
And a full-time job….
And an honor student….
Who is a swimmer….
And a theater buff….
And a community activist in the making…
All after work, and school, into the city, in traffic, and expensive parking lots, in hopes of getting back local in time for practice.
Last week I told Meghan over the Christmas Vacation we would need to see her gyn, and do her knee MRI, and my abdominal sonogram. She was less than impressed. The general sentiment is that we don’t get vacations, we get days off from school to go to the doctor. I can’t argue.
The physical, mental, and social ramifications of this under-funded, “orphan disease” are having a profound effect on the life of my girl, and her mom and dad too.
That is one of the main reasons we work so hard to raise funds and awareness. Maybe one day…
So tonight, we are grateful. We are on our knees in gratitude, for the prayers that were lifted on her behalf. We are thrilled to hear the words, “It’s not malignant,” but we are painfully aware the journey of monitoring another body part has just begun.
So if we are not shouting from the rooftops, please don’t think us ungrateful. We are not. We are relieved. We took our first deep breath in weeks. But, we did ask Santa for some new body armor, polished and ready for the new challenges PTEN Hamartoma Tumor Syndrome, (Cowden’s Syndrome) are actively placing in our way.
We ask that you continue your prayers, and continue to educate yourself about genetic cancers, orphan diseases and people like us, left to be our own advocates, in a world that isn’t overly concerned with how our story shakes out.
While we are in transit, to and from a lot of places we’d rather not be, we talk a lot. Most of it is complicated. But some of it, is quite simply about how a 12-year-old with a vision is going to change the world.
Come join us on FEBRUARY 21st as we try to draw attention to Rare and Genetic Diseases! Beating Cowden’s Fundraiser LINK – PLEASE HELP US SPREAD THE WORD!
Someone tried to steal my credit card today. Online purchase of almost $1000. We are pros at this. Text alert. Call to Chase. Charge suspended. Crisis averted. We are pros at being hacked. One day I’ll figure out why. Right now I don’t have time. I’ll be busy calling E-Zpass, and all the other automatic charges on our only real credit card. Whatever. I have to laugh. Cause if I don’t I might cry. And that would cause a headache and be counter-productive.
I have serious attention issues. Probably because everything I touch seems to morph into a few more things to address. More phone calls, more emails, more papers, more appointments.
My life is not that bad. Truly. I know I’m in good company. Chaos abounds and if you don’t appreciate some of it, you’ll regret missing it. But, the thought that someone would want to BE me makes me laugh a bit. Or maybe they just think I’d be too busy to notice…
Yesterday Meghan was scheduled for a biopsy at 3:30 PM. That is a rotten time for any surgical procedure. It involves a full day of fasting, anxiety and the like. We arrived at 2:30 and got checked in. Then we waited. And at 6PM when I finally walked with her to the OR she was dizzy and light headed from nerves and a day of not eating. Hours delayed. Cause, why not?
It sucks that my 12-year-old knows what a biopsy is. It really, super sucks that she has had so many. It’s helpful that they’ve all been negative so far, but the notion that “luck” will run out at some point looms. She knows all about pathology and wonders if it will be back before Christmas. I am often struck by the notion that all of this is unfair. But, I have always hated the people, young and old, that whine about things that are “not fair.” The struggle not to become THAT person is real.
I write to bring back my focus. I write to get the thoughts swirling around in my head back into good order. I write because it makes it less awkward for the people who actually want to hear about our lives, but don’t know what to say. Some days the task of organizing these thoughts is much easier than others.
We are at a point that our lives are overwhelming. I don’t just mean busy, like in a typical, school, activities, homework, sports, etc. kind of overwhelming. I mean they are overwhelming in the medical sense. We are past the point where we can even really talk to most people about what’s going on. I get to kid around a little when I talk about needing my spleen tumors scanned again, or my implant lifted, but it’s hard to share the true tears of frustration I feel that I will have to do that with a new surgeon because mine sold her practice and is now out of network. I keep the tears I cried about that tucked away.
In fairness, what do you say when you are discussing the umpteenth medical procedure of your 12-year-old, when most adults you know have only had one or two surgeries or procedures in their lives?
How could I expect someone to even respond?
How do you explain that we have “operating room routines?”
What can you say to soothe the lonely pain of recovery. Again?
Nothing silences a conversation faster than a discussion about the uterine biopsy of your 12-year-old daughter.
Nothing silences her cell phone faster than trying to just share a little of that enormity.
Truth is, we know. We know we are loved. We know we are thought of, and virtually hugged, and prayed for. We know.
But, when so much of your life is swallowed up in medical procedures that you really can’t talk about – it gets lonely.
She’ll need another day on the couch. To recover fully. Her Dad will stay home tomorrow. They will watch some TV, and talk without speaking. They are good at it.
And Monday, she’ll head back to school, awkwardly searching for the fine line of politely ignoring the enormity of her life, and sharing just a little with those who are brave enough to ask.
Please don’t take any of this the wrong way. We appreciate the love, and texts, and Facebook messages, and Emails. We love all of you. And we are sure we’ve missed some key things in your lives too.
It’s just, well, the reality of this Cowden’s Syndrome, the enormity of the 5 surgeries in a bit over a year, the gut wrenching notion that it won’t quit – ever, the frustrating planning of two scans and a doctor’s appointment already eating up the next “vacation,” the waiting for the pathology report for the polyps that just don’t belong in the uterus of a 12-year-old, well, honestly… It’s just overwhelming.
I think that’s the word that describes my thoughts best. Overwhelmed.
Now that I’ve got that organized, I’ll get back to the business of
I am sure I am not the only one, especially the only parent, who struggles daily with wondering if I have made the best choices for my daughter.
Sometimes we argue, and bicker, and I find myself wondering if I am reaching her. Other times I look at all her activities and wonder if she is too busy. Still other times, I look at her and I see those tired eyes, and I wonder what I can do to make things better.
Choices. Life is about choices. And around 12 years old is that transitional time where more and more of the choices become hers, not mine. I can guide, and support, but she is beginning to make more of her own choices, and handle their consequences, be they positive, or not.
She is doing a great job, and truly despite a few hiccups, I could not be more proud. But I will always worry.
The one area though, where the decisions are mine and her father’s to make, are the complex medical decisions. And with Meghan there are many. I have to wrestle with my roles, advocating for her best interests physically, mentally, and emotionally.
This has been a growing process for me, and there has been such a learning curve. With Meghan there is always a medical decision, always a worry, always something that has to be checked out and looked at. Many of these things have potentially serious consequences. But, she is not a medical specimen, with a fascinating genetic disorder. She is a child, a young lady, with hopes, dreams, goals, and emotions. Finding the balance between who she is and what she needs is tenuous.
Sometimes I get it wrong.
This time, I got it right.
The doctors are worried. She needs a biopsy. But, it’s not her first biopsy, and it won’t be her last. There is reason for concern, and we take that concern very seriously. The biopsy was to take place on the 9th of December, the first available. It would keep her from swimming for about 10 days.
She looked at me. I knew in my gut what to do.
No, you’ll have to book her for the 16th. (Even knowing the extra week of waiting would be agonizing for me.)
The doctor looked puzzled. But…
Listen, she has her drama concert on the 10th, and her swim meet on the 12th and 13th. She’s primed and ready to qualify for a championship meet. One week is not going to change that biopsy. You and I both know, it is already whatever it is.
She looked at me. She looked at Meghan.
My eyes locked with my girl. In those eyes she thanked me for putting her the person, before her the patient.
Thursday there was this…
Saturday, there was this…
And before the meet was over she had personal best times in 4 out of 5 events, and 2 qualifying times for Silver Championships.
We have no idea what Wednesday and the ensuing week waiting for pathology will bring.
But, there is a peace in knowing the person is always more important than the patient.
She could have ignored the tears in my eyes. She could have beeen annoyed by my lack of focus. Undoubtedly she was tired. It was Friday night, and after 8. I would never see her again. It would have been so easy to look past my face, and my shaky mannerisms, and rush my order through.
But, she made eye contact. And, she asked me if I was ok. And, she meant it.
Although every rehearsed part of me wanted to recite the appropriate line, the one that says, “Yes, I’m fine thank you…” I just couldn’t get my mouth to form the words.
A sigle tear fell down my cheek. And then another. I was in the grocery store. A ritual every third Friday, miles from home. By sheer grace alone no one was behind me.
As the words came tumbing out she made eye contact. She showed compassion. As I rambled about the doctor who had just called me, on my cell phone, after 7 on a Friday night, and the raw fear I felt for my 12 year old, she listened. At the grocery store.
A quick summary of 12 years of ill health and yet a bright, beautiful young daughter who defies all the odds. A few words about the 4 years since diagnosis with a rare, genetic mutation that causes benign and malignant tumors. A brief sentence about the constant battle to keep the malignancies at bay. The terrifying, bone crushing fear that we might be losing.
She bagged my cart. She found my shopper’s card. She reminded me where to sign for my credit card.
And then she did something that I will never forget.
She called her manager. And at first I didn’t understand. Then, she said, “I’ll walk you to your car.” It was cold. Almost raining. She didn’t flinch.
She told me about her own experiences with missed and bumbled diagnoses. She told me she hoped my daughter would be ok. And she meant it.
Somehow I got home that night. The nightmare still continues. But, this woman….
In this busy holiday season, where we sometimes forget what really matters, she cared. At the exact moment when I needed someone to care, and I was surrounded by complete strangers, she cared.
I don’t even know her name. But, she reminded me about Christmas spirit. She reminded me that people care. She showed compassion to a stranger.
She has no idea how much she did for me.
She sent me right home to hold the one who matters most.
Because truly I’m getting bored of you. I’d like try to spend some time with Serenity, or Sanity, or Relaxation, or maybe Peace.
I know I’m bad at ending relationships. I get attached even to things that are just wrong for me.
I make excuses. I have a hard time letting go.
And you, well you are relentless. You keep finding ways to get in my face.
Yesterday you played nasty. I had a simple appointment. Do I need the implant replaced or not? And somehow it turned into an insurance nightmare and a need to consult with a new plastic surgeon. The surgery will be. But at least it’s not urgent. Sheesh! I needed to fit in a consult with a NEW doctor? You know how much I LOVE new doctors right? AND EXTRA trips to the city. My complete favorite.
And as I tried to reach Meghan’s doctor to get things scheduled I hit so many roadblocks it was like you were just taunting me with your tongue out. I get it. Long weekend. Except it’s TOO long if you’re waiting on things like this. I cried. I admit it. You got to me.
But you know what Stress? You’re taking up too much energy. And once again my kid set me straight. She swam one heck of a practice tonight. She will swim her December meet. I owe it to HER to work around her passions. We even chuckled, knowing the reality of what she COULD be facing, and the super importance of her swimming, and singing, and acting. No matter if the doctor understands. God help me no matter if it delays things a few days. (Breathe in breathe out…) cause we have to prioritize.
Stress you don’t like focus. You like chaos. You like drama. You like mayhem. I doubt you’re gone for good. But we are so over you.
Excuse me while Peace, Serenity and I dig out the Christmas tree.
I will release you with my mind. I will release you with my energy. I will release you using ADAPTOGENS. I’m really not interested in you…
The song by Billy Joel…
Everybody wants to hear the secrets
That you never told a soul before
And it’s not that strange
Because it wouldn’t change
what happened anyhow…
…And you can’t talk about it
Because you’re following a code of silence
You’re never gonna to lose the anger
You just deal with it a different way
And you can’t talk about it
And isn’t that a kind of madness
To be living by a code of silence
When you’ve really got a lot to say…
Approved by the Cancer.Net Editorial Board, 11/2014
Cowden syndrome (CS) is part of the PTEN hamartoma tumor syndrome. Hamartomas are benign, meaning noncancerous, tumor-like growths. Other clinical syndromes that are part of the PTEN hamartoma tumor syndrome are Bannayan-Riley-Ruvalcaba syndrome (BRR; diagnosed in children), Proteus syndrome, and Proteus-like syndrome. CS is characterized by a high risk of both benign and cancerous tumors of the breast, thyroid, endometrium (uterus), colorectal, kidney, and skin (melanoma).
https://www.eventbrite.com/e/jeans-for-rare-genes-2-tickets-19343557100?aff=eac2
Sunday night, coming home from a swim meet, Meghan outlined her goals. Among them included, “no surgery for a whole year.” To someone who hasn’t had 4 surgeries in the last 12 months, that may not seem quite that important, but to Meghan it was at the tip-top of the list.
Over the last several years she has spent more time living in “recovery” than just living.
She dropped 16 seconds total off her event times at this month’s meet, and 17 last month. Insanity. Except to a young lady who is now growing into herself, and her abilities.
She wants to swim. Hard and often.
She wants to soar academically – no average under a 95 will do for her.
She wants to act, and sing, and be on stage.
She wants to participate in her youth group, and retreats, and live her faith.
She wants to raise community awareness of Cowden’s Syndrome and rare diseases.
She is on the move all the time. I know, because I am with her. Or helping her stay organized. Or transporting her at least.
This weekend we drove 200 miles. Today at least another 60. LOTS of time for car chat. Lots of time to get to know each other well.
Sometimes she drives me crazy. Sometimes I frustrate her so badly she wants to scream. Sometimes she does homework, reads, or works on projects. But, lots of other times we talk. About anything and everything. And as much as I hate traffic, and long distances, I’ve learned to make the most of our time in the car. I’ve learned to appreciate my captive audience, with the realization she won’t be in my back seat forever.
As a matter of fact after today’s appointment, she could easily be in the front seat. All the time. At a very trim waistline, and a height of almost 5 foot 7, she presents as YEARS older than she is. Which I sometimes have to remind myself when I am busy expecting her to have it all together. Sometimes she still needs me to help her along.
Today was the knee surgeon. Six month follow-up. He sees the shift in the patella. He feels the scar tissue, and the clicking. But, he said, she can wait. She can wait until she’s ready before he cleans it out again. With Cowden’s it’s a fine line. How much pain can you deal with? Because every surgery will lead to an overgrowth of scar tissue which carries its own issues. Drag your feet. Know when enough is enough.
Next we will have an MRI to check on the AVM. As long as that’s stable, we should have a bit of time. A bit of time to do some things besides recover. A bit of time to be a bit more like a “normal” busy 12-year-old. Well, like a “normal” 12-year-old planning a fund-raiser for more than 150 people with her favorite Disney entertainer… But, hey, she dreams big.
Tomorrow she goes to another doctor. And about this one I just pray. A lot.
In two weeks I get to remind myself I have Cowden’s with an unplanned visit to my plastic surgeon to question a poorly behaving painful prosthesis.
Plenty to preoccupy the mind. In our immediate and extended family.
One day, one event, one obstacle at a time.
I did start my Christmas shopping. After 2 years of holiday sadness, I am craving joy, and celebration. I am craving the anticipation of the birth of the baby Jesus. I am determined to remove myself from the holiday hustle and bustle. I am determined to set my mind right. Because none of us ever know. Really. And there is no promise of tomorrow. Really.
But organization makes me happy. And it’s about being happy. And making the most of it all. All the time.
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…
beatingcowdens 