Cowden syndrome – Page 28

Moving Forward

Published on May 16, 2013May 16, 2013 by beatingcowdensLeave a comment

May 16th for years has had a special place in my heart.

In 1985 my cousin Meghan was born. I was in the 6th grade and giddy to get to know her. I never could have known at the time that her life would be tragically cut short after a more than 4 year battle with leukemia.

"Angel Meghan" - 1987 — “Angel Meghan” – 1987

Her feisty nature, her smile, her spirit, and her strength have always been an inspiration to me, and it was an honor years later, to be able to name my daughter after the spirited young girl who became an angel at 6 and a half, on my 18th birthday.

My daughter carries so many of the characteristics that endeared my cousin to me. She is the same kind of spirit, who lights up a room, and makes everyone smile by being around them. She endures medical procedures sparsely batting an eye, and accepts the reality of her life with grace.

Last year on May 16th I was at NYU hospital, just 10 weeks after my bilateral mastectomy, undergoing a complete hysterectomy. I knew that day I had the prayers of my family, and the strength of my angel by my side.

I have a “thing” for dates. I remember numbers. Maybe this is how my love of math shows through. I like answers, and things that are absolute, or make some sense. Maybe my recognition of dates, and anniversaries is a way of marking time – or maybe its a way of celebrating. These anniversaries that I remember – some sad, others bittersweet, have shaped me as a person. They are all pieces of that every evolving puzzle.

I thought about the surgery this morning. I thought about it being a full year since all my “girl parts” were officially gone. I thought of the perils of the hysterectomy recovery and how in so many ways this was a tougher surgery for me. Then I thought about my relief, and how much less of a cancer risk I am than I was a year ago. And I got dressed with a smile.

I thought about Angelina Jolie. I thought about how happy I am for her – that she was able to make an empowered decision to get out in front of her breast cancer risk. I thought about how happy I am that she has brought genetic testing into light.

But a few things have really bothered me.

PTEN mutations (Cowden’s Syndrome and the sister disorders) carry with them the same imminent breast cancer risk. I myself had been tested for BRCA1 years before I ever knew of PTEN. I was negative. The genetic counselor who tested me did not even have PTEN on her radar screen. I know its rare – I do. But I have to believe this is the opportune time to at least educate the medical professionals, if not the public, on the reality that there are other genetic mutations that carry imminent cancer risks. I am sure there are more that I haven’t learned about yet. Let’s use this opportunity to raise awareness not only of the “popular” genetic mutations, but of the others as well. Had my daughter never been diagnosed, by the well educated geneticist – it is likely I would not be here to write this today.

I am also bothered by the haters. You know the haters. The “Monday morning quarterbacks.”

They have crept out in quantity and I have a few words for them too.

BUTT OUT!

If you don’t like the idea of a prophylactic mastectomy – then don’t have one. Plain and simple.

If you don’t like the idea of a complete hysterectomy at 38 because the alternative was 4x a year – yes you read that right- 4x a year SURGICAL uterine biopsies, then don’t have one.

When you live with the Sword of Damocles hanging above your head every day, when you have to go about your business, and work, and raise a child, and pay bills, and shop and function with the feeling of impending doom that is sometimes hard to shake – when you have a diagnosis of a genetic mutation that is not going away no matter what you do. Then, maybe then you and I can talk.

Until then, wish Angelina a good long healthy life. Look up “genetic mutations that cause cancer” or “The Global Genes Project” or “The National Association for Rare Disorders.” Get a feel for what we go through every single day of our lives.

You probably wouldn’t know us if you passed us on the street. We are some of the strongest and bravest and smartest people you will ever lay eyes on. We stop and smell the roses. We hug. We smile. We laugh. We get how fleeting life is.

May 16th will always be a significant day for me.

But, moving forward -so will every day. The first year is over. Now on with the rest of our lives!

************************************************************

In case you are interested…

http://idioms.thefreedictionary.com/a+sword+of+Damocles+hangs+over+head (Sword of Damocles)

http://globalgenes.org/ (Global Genes Project)

http://www.rarediseases.org/ (National Association of Rare Disorders)

https://www.facebook.com/ptenworld?fref=ts (Facebook Page for PTEN world)

Puzzle Piece

Published on May 9, 2013May 10, 2013 by beatingcowdens3 Comments

I remember being much younger and loving puzzles. We would set them out on the table at home and everyone would take some time trying to get it going. They were big and had lots of pieces and were often slow going at first. Everything looked the same, and sometimes it could take hours to fit in a few pieces.

Then, over the next few days, and sometimes weeks, with everyone taking a turn, slowly the picture would start to take shape and the puzzle would come together. It was always so exciting once you could make out the features, and so much easier to plug in the missing pieces.

I remember the feeling of satisfaction as one would be completed. There was something especially gratifying about those last few pieces. It was that feeling of satisfaction. We set out minds to this. It took a few of us, but we got it done. We figured it out – together.

By now you can probably see where I am going with this.

Today marks one year since I wrote my first blog post in 2012.

In one year the posts I have written have been read over 30,000 times. People have stopped by to read some – or all of our journey with Cowden’s Syndrome.

I have met other Cowden’s Sufferers through this blog, and on the internet. I have received messages, and corresponded with quite a few. I have learned their stories, and heard about their puzzles.

I have also “met” a few with other puzzling disorders,figuring life out and getting by one day at a time.

I am ~~sometimes~~ forever humbled, and amazed by the odd and abstract idea that people who I don’t know have gotten to know us, and used us as pieces to help complete their own puzzles.

I noticed a link on my blog today from “pinterest.” Having never been to the website, I clicked the link to find a picture of my family. http://pinterest.com/pin/290974825894950598/

I was pleased that it was used in its proper context, and was mentioned in terms of rare diseases. But, I was still amazed. Someone had read, and linked, and…

Well, the possibilities are endless. Thank goodness for the internet.

Where else would I meet people from all over the world,. and swap stories about a genetic disorder with an occurence rate of 1 in 200,000? Where else would I find organizations like

PTEN World https://www.facebook.com/ptenworld?fref=ts

The Global Genes Project https://www.facebook.com/globalgenesproject?fref=ts

This last year of blogging has been an awakening for me. It has opened my eyes to so many other people, their stories, and the world at my fingertips. Since our diagnosis in the fall of 2011 it has become so important to become aware, to gain support, to advocate for others, and for ourselves.

I remember working on puzzles as a little girl. I remember that feeling of satisfaction when the puzzle was complete and the picture was clear.

I don’t do those kind of puzzles anymore.

Now I figure out how to prepare 2,000 denim ribbons and get them distributed on time for Rare Disease Day.

Now I work on helping my girl find her place in this world – trying to be a “regular” kid, yet undergoing so many more stressors than any 9 year old should.

I work on puzzles that lead us from one doctor to another, dropping them like leaves off the trees on a fall day.

I work on puzzling questions, and I persist until I get answers.

I get overwhelmed sometimes – looking for the pieces I can’t seem to find.

Sometimes I want the puzzle to have its edges all done, the way I learned. I want it to be neat. I would like all the matching colors to go together

But, that isn’t how life is designed to be. Not with Cowden’s Syndrome.

Not for any of us really.

Maybe it’s not a puzzle – but more of a domino game… branching off in so many different directions. Occasionally stopped by a dead end – only to find another path.

Or maybe it’s just a puzzle of an “atypical” sort. Not one that actually fits in a box. One that requires patience, time, dedication and focus.

In front of me tonight are 22 pages of blood work drawn on my daughter over the last month. There are some definite issues. My phone consult with her doctor is a week away. In the mean time I am left to try to put it together the best way that I can.

I handle each piece delicately, gingerly. I don’t want to damage anything, or miss anything either.

There is no picture, no model to duplicate. There are no directions. No guide. Just instincts. Prayer. Love and support of friends far and near.

Tonight I will study until I can figure out one more piece. Then there will be tomorrow.

The journey is long. The puzzle evolves. I am not going anywhere.

Thanks for sticking around.

Collateral Damage

Published on May 4, 2013May 4, 2013 by beatingcowdens1 Comment

In regard to surgery and absences – this year has been much better for both of us… Maybe some things are looking up. (Published June 8,2012)

beatingcowdens

Collateral damageoccurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched toequate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is…

View original post 337 more words

History – Where it all began

Published on May 1, 2013 by beatingcowdensLeave a comment

Yep. That’s what it is. It’s history. The story of our lives for the past year. It started in a small blog I shared only with a few friends. It blossomed into a WordPress blog with 50 followers, and a Facebook group with over 225.

I am humbled really – that anyone is even interested in our story.

I am grateful and excited for what we are doing to raise awareness of rare diseases like our Cowden’s Syndrome.

I wrote my very first blog post on May 9th of 2012.

Very few of you were with me then – but this is where it all began.

For the next two weeks I plan to “replay” some of my favorite/most informative blogs from the early days.

Hope my nostalgia doesn’t drive anyone away!

CLICK ON THE LINK BELOW FOR A TRIP BACK TO MAY OF 2012!

https://beatingcowdens.com/2012/05/09/

Who is in charge?

Published on April 28, 2013 by beatingcowdens1 Comment

Meghan slept until 11:20 this morning. She woke only to the sound of the hammering as her father works to trim out the upstairs rooms – a project that had an intended completion date of about 2005, but hey, life gets in the way sometimes.

We had woken earlier, Felix and I – but not too much earlier. We had wanted to go to church this morning, but learned a long time ago NEVER to wake Meghan. She had gone to sleep at 8 PM last night, and if she was still sleeping soundly in her own bed at that hour – well her body was clearly telling us to back off. We have a lot of respect for her body. It gets VERY cranky if you don’t listen carefully.

My three girls... resting together. — My three girls… resting together.

But, by 11 – we had become so ingrained in what we were going to do, that it wasn’t too hard to forget that our 9 year old was still sound asleep under her covers.

When she came stumbling out of her room to the sound of the hammer she was dazed but smiling. After a good morning hug she asked what we had to do today. When I told her that we were going to stay home all day she leaped into my arms.

Can I read? Yes…of course.

Can I watch some TV? Sure.

Can I take my shower later, and stay in my PJs? Absolutely.

While part of me was tempted to lecture her about getting up and showered and dressed, I refrained. Just because I could never bring myself to spend the day in my PJs, doesn’t mean she can’t.

In so many ways Meghan and I are somewhat different, but also a good deal alike.

Our bodies eventually shut down if they are always on the go. We need our down time.

Growing up with a sister and a mother who could move like Energizer Bunnies, I always felt a bit odd that I couldn’t keep up. They still move like that. And I still need to stop sometimes.

Now, I have a mini -me. (And my sister has two! :-))

So when I looked at the April calendar earlier in the month I had had some serious reservations about whether we could pull it off. For most of the month we were on a 7 day schedule.

Meghan switched schools.

We had PT twice a week, dance class, music class, swim practice, swim meets, test prep, doctor’s appointments….

But, we did it. A small hiccup last week when she started with an ear infection, but a quick run to the pediatrician (after the orthodontist, and before it transformed into a full-blown feverish mess) and we got it under control.

State tests – 6 days of them in the last 2 weeks. Stress – all of them. But they are over too.

Yesterday I pulled out Meghan’s spring clothes. There wasn’t much we could use. The sandals from last year were a size 6. She is a 7.5. The same was true for the clothes. We put even less away for the fall. Nothing really. But we will cross that bridge then. Right now she is almost 5 feet tall and every inch of her beautiful inside and out.

No wonder she needs to rest sometimes. Her body is certainly hurrying its way through its growth.

I spent the entire day at my desk. I just finished about an hour ago when I began to write. There were bills to file, papers to sort, letters to write. There is a letter writing campaign I am working on for a stop sign by my school.

There were some Emails to answer about Isagenix – the nutritional system that is changing my husband’s life.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html (check that out here)

There were gifts to order, some lists to make, and I can now just about see the desk calendar, as it is ready to turn to May.

I probably should have gotten outside to enjoy the beautiful day too, but I guess this was my respite. I thrive on order and organization. I showered early – like I always do, but I relaxed by creating order.

You see Mom taught me a long time ago – that the more you look for order in life, the less you will find it. “You plan – God Laughs.” And I know she is right.

I really should listen to my Mom... — I really should listen to my Mom…

However, in this world where so many things are so far out of my control – I have a compulsion to control what I can. I can make sure the floor is clean, and the bills are paid, and the laundry is done. I can make sure there are always cupcakes for Meghan in the freezer in case there is a party. I can buy the cards, and order the gifts, and endeavor valiantly to balance my checkbook.

Crazy? Maybe. But I take satisfaction and solace in knowing that there are a few precious things left in my life I can control.

The last of a long series of lab tests ordered by my friend Dr. Elice was done Saturday morning. This is the week where I will find out what 37 vials of blood and 2 24 hour urine tests turned up. I will ask the 5,000 questions in my mind about endocrine function, and hormone levels, and ratios, and vitamin absorption. And, no matter how much I try to anticipate the answer, something will knock me flat on my ass.

That is how it goes. Cowden’s Syndrome keeps us hopping. And with Meghan there is an immune system deficiency, the chronic viral infections, and so many more things we are yet to figure out.

So – for tonight, the floor is clean, the list is made, the desk is organized. For tonight I can rest, and gear up for whatever this week has in store. And somehow, after dance class, and PT, and swim practice, and 2 meets… somehow it will all be OK.

I’m not in charge of this. It’s in the hands of a power far greater than any of us.

I’m only in charge of keeping the fur off the kitchen floor.

GOOD people bring out the GOOD in other people

Published on April 20, 2013 by beatingcowdens1 Comment

Being a Mom is challenging, but rewarding.

Working full-time is necessary, and carries some definite benefits, but huge time demands.

Being the Mom, and managing the bills, the groceries, and the lions share of the housework (and I have a helpful husband! :-)) is well, some days like standing at the bottom of a really tall mountain…

Having a chronically ill child is trying on the nerves. Worry and doctors appointments compete against waiting and absorb the bulk of any free minute.

Having a chronic illness, a rare genetic disorder like Cowden’s Syndrome yourself – well, it creates some challenges. And that is putting it nicely.

But, to combine all of the above… well I can tell you I wouldn’t trade any of them – but I am exhausted.

I spoke this week with a friend from work. Her son is chronically ill, but was suffering an acute episode one afternoon. This week Meghan felt fine. So, I had the opportunity to spend a short amount of time empathizing. While I was unhappy that he child was ill, I was in awe of her poise as she anxiously awaited news of her son’s condition in NJ. I think my heart was in my throat – yet my admiration for her composure under pressure could not be stated.

I am sure I am not the only one exhausted. I know I am not the only one contending with these issues. And, even if they were different – dare I say I almost felt normal – listening to others for a change?

My perspective is usually pretty good. I work hard to put myself in other people’s shoes. I talk a LOT with Meghan, about various social situations, and try to help her see that her point of view is never the only one. We have most of our best conversations in the car.

Tonight as we headed home from my in-laws I could no longer escape the conversation about the horrors of the Boston Marathon. I had shielded her for a few days because I truly just couldn’t gather my words.

So, tonight as I explained what the bad people had done, and I answered her questions, she was, as the rest of the nation was, absolutely appalled. And I spared her MOST of the details.

She wanted to know why people have to suffer. And she wasn’t talking about herself. She was talking about these victims, as well as other people – children and adults, with cancer, or other major struggles.

There was no right answer. So I gave her the best one I could. We have things in our lives to deal with – all of us. I don’t believe God picks us out to suffer. There is evil in this world. But I do believe, that we are given the strength to handle our struggles if only we ask. And, we are given the tools to use our struggles to make a difference in the world.

So she asked why people do evil things. Again – no right answer. So, I gave it my best. I explained that there are evil, awful people in this world, and she will encounter them at certain points in her life. But the beauty of it is, that for every evil person, there are probably hundreds, or thousands of good people. Those are the people we seek out in our lives. Those are the people we center our worlds around.

People are not inherently bad. Most people are downright good. And I reminded her of the stories I have told of the heroes of 9/11. And then I told her about he heroes in Boston.

I told her of the resolve of the police and all emergency personnel that REFUSED to give up until their people were safe. I explained how they put their lives on the line every time they rang a bell or even took a few steps. Yet, they would NOT stop. They shut down a city and they made it happen. They worked together, and they arrested their suspect. These are the good people.

And then there were the ones, who helped the injured at the marathon. Civilians and emergency workers alike. They ran in to give a hand because people were in need.

There are some rotten things in this world. There are diseases and illnesses and suffering. There are awful, evil people too. But we, we will live our lives focusing on the good guys. The ordinary folks that “wear the capes.”

This world is not full of evil people. It is full of good people who so often stand together intolerant of evil and focused on human decency.

God Bless the Boston PD, and all the emergency workers, and all the brave citizens.

We stand with you. We thank you. for reminding us that there are so many good people in the world.

The Circle of Three

Published on April 14, 2013 by beatingcowdens2 Comments

My heart and soul. My circle of strength.

A few weeks ago Felix mentioned he might like to have a denim ribbon pendant to wear.

They are modeled off the Global Genes Project logo, “Hope it’s in our genes!”

He wanted to be able to show his support for Meghan and I all the time.

So, we had another one made and I gave it to him for our anniversary.

I didn’t imagine the effect it would have on me.

What a magical thing to see the ones you love most joined with a symbol of support.

Symbols are just symbols I know – but what they symbolize can still be powerful.

Felix gives us the motivation, the strength, and the courage to say “I can.”

He makes us laugh. He holds our hands.

He is as much a part of this Cowden’s Syndrome journey as we are.

We are three but we are one.

Now, near or far we remain connected.

There are no “superpowers” in these denim ribbons…

Well, unless you count LOVE, GRATITUDE, COURAGE, STRENGTH, and HOPE!

Maybe…

Published on April 10, 2013 by beatingcowdens2 Comments

And that is what we took.

Stuck in a corner – a stifling corner, with anxiety, and all of its evil friends – we decided to break free.

And I can not think of a better thing we could have done.

Today was Meghan’s 3rd full day at her new school, and while she misses her friends – she is adjusting beautifully to the welcoming students and professionals that have greeted her.

She received an outstanding foundation at her old school – teachers who worked alongside her right up until we made the move last week. She received a foundation from them that will allow her to soar here.

I am eternally grateful.

But there is a time for moving on.

Sometimes it happens neatly at the end of 5th grade. And sometimes it happens before that. This was her time.

Which shouldn’t surprise anyone because nothing really seems to be wrapped up in a neat little organized package – not in life, and certainly not in Cowden’s Syndrome.

She changed schools, but the Syndrome stays. And sometimes that’s a hard reality to swallow.

See she is so excited to meet new children, and to run and play and socialize – we hoped that maybe the release of tension would eliminate the pain. It took a few days for the pain to catch up. But, it moved too. It lives with her – no matter what school. Although I am convinced it is less than it was.

Stress is evil. Tension is its nasty twin. The conbination wreaked havoc on her already struggling body.

Now, there is much less stress and tension, but there is still pain. A knot in the hip that doesn’t want to quit is pestering her still. And while I am grateful that the tolerance is higher, I am not sure if the pain is any less.

Any time an injury lingers, or a pain persists for more than 2 weeks – even if it is intermittent – we have to ask ourselves if it is time to go for imaging.

Xrays are not good for Cowden’s Syndrome. Radiation can send our sensitive cells into a tailspin. And the alternative – MRIs, are taxing – on everyone. But how long do you wait for a pain to go away when you have a syndrome that provokes tumor growth? How do you know what is the right time?

We scheduled the summer appointments. I was hoping to wait until then for all the check ups and tests.

Somehow, I suspect we will have to see someone a bit sooner.

But, I am stalling. Maybe the happiness will cure it.

Maybe swim season – her first ever competitive sport she ADORES – will straighten it out.

Maybe.. just maybe… we won’t have to add one more confused doctor to the list of clueless professionals who don’t know how to help us anyway.

Maybe… her blood results from Dr. Elice will come in this week, and maybe there will be an answer or two.

Maybe…

Maybe I will just go fill up my wine glass again.

No more “Toxic” environments

Published on April 7, 2013April 7, 2013 by beatingcowdens2 Comments

Almost a year ago – in June of 2012 – my husband was introduced to Isagenix, a nutritional program designed to help him shed some unwanted pounds and help him feel better.

You see it had only been a few months since his wife and daughter were diagnosed with Cowden’s Syndrome. Meghan had had knee surgery (her 4th) in February of 2012. I had my mastectomy, with the subsequent DCIS diagnosis, in March, and a hysterectomy in May. By June the stress eating was evident as he just didn’t feel well. We all needed his energy level to stay high. There was certainly no time for our anchor in the storm to get sick or run down.

So, with the guidance of a friend – an Isagenix consumer and “pro” herself, we got him started on a 30 day program designed to help cleanse his body of unwanted toxins. The thirty day program was a breeze for him. He is one of the most determined people I know when he puts his mind to it. It wasn’t long into those 30 days when he started finishing the extra vegetables at dinner, and choosing water over soda. He just FELT better.

The information below is from the Isagenix website.

http://www.isagenix.com/us/en/cleanse_overview.html

Nutritional Cleansing unlocks the miracle of the human body

Nutritional Cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

Accelerate the removal of impurities from the body.
Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. Many people notice an ability to reach and maintain their ideal weight.

So when the thirty days were up, he chose to continue on a maintenance program. He uses the Isagenix for one or two meals a day, and snacks. It fits in with the “on the go” lifestyle of a NYC employee.

And, as he sees fit – he opts to do a “cleanse day” where he drinks a power packed vitamin supplement and lots of water. He eats very little food. And he always feels better when he is done. He knows now that toxins build up in the body, and he knows when its time to let them go.

10 months later he is down a solid 35 pounds and countless inches. No fluctuation greater than about 3 pounds. It is gone for good. The future is wide open, because as soon as his schooling is over – the exercising will begin again, and the remaining 15 pounds he looks to lose I am confident will melt away.

So how does all this have anything to do with “Beating Cowden’s?”

Here’s how I see it.

I haven’t used the Isagenix program, because I have not had a need to lose weight. But, I have learned so much from reading and watching.

Essential to the program is the release of toxins.

This, I know a lot about from being Meghan’s mom. From a young age it was evident toxins were difficult for her body to process. She seemed to hold onto things, food dyes, additives, “extras” in everything she ate. Nothing seemed to agree with her. An almost exclusively organic diet became essential.

We used Epsom Salt baths in the younger years to help clean out what her body couldn’t get rid of.

I learned about biochemisty, and methylation. I learned about Vitamin B12 and its ability to help her get rid of toxins.

So, over the last few weeks and months, when Meghan’s pain level has gotten progressively higher again, it was time for me to reevaluate.

Looking closely at her diet, there wasn’t much to clean up.

I have Dr. Elice looking closely at her blood. 28 vials this week!

But, it occurred to me that stress – life experiences – could be equally toxic. So I started to wonder if the stressful situations in our life were causing a decline in Meghan’s overall health.

This week we changed churches and schools.

I haven’t heard her laugh like this in months.

There is a spark to her smile, and a hope in her eyes.

Her hip still hurts. There is a knot in the side. There are aches and pains – but somehow… she seems just a little less toxic.

Felix is taking the Isagenix – but we have all benefited.

http://meghanleigh8903.isagenix.com/us/en/landing_toxic.html# (Message me if you want to know more!)

SHE Who Never Gives Up!

Published on April 4, 2013April 4, 2013 by beatingcowdensLeave a comment

There is a card on my desk from a dear old friend.

It says, “She Who Never Gives Up”

I was quite flattered to receive it, as I did, and still do – perceive it as quite the compliment.

However there are some definite dangers to being, “She Who Never Gives Up.”

SHE feels the STRESS of life very deeply, and STRESS doesn’t go well with chronic illness.

SHE fights for what is right – in a world that doesn’t always give a crap.

SHE persists until people pay attention, even when they don’t want to.

SHE advocates without ceasing for the needs of her child.

SHE finds it unacceptable when her child is placed in stressful situations unnecessarily.

SHE plays a doctor, a lawyer, a researcher, and a teacher – all in real life.

When people don’t do the right thing, SHE reminds them.

SHE doesn’t quit- ever.

Some people find that SHE is annoying – a real pest.

Some people wish SHE would just go away.

Some people would like it if SHE expected a little less from them.

Most people wish SHE didn’t expect them to do their job, and do it well.

SHE is not perfect, and never claimed to be.

SHE makes the best decisions she can- with what SHE has, where SHE is.

SHE tries to eliminate the stressors in her life, and simplify – although they keep cropping up.

SHE will continue to battle with all of her might – despite bone crushing fatigue and sometimes against all odds – until her little girl can lose some of her unnecessary stressors.

Cowden’s Syndrome, and all its battles bring enough – the rest of the STRESSFUL situations are officially uninvited into our lives.