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Thinking outside the box

Published on March 22, 2013 by beatingcowdens4 Comments

And so began the week that was.

A “simple” annual review – not so much. But that’s OK. Mamma Bear remained calm. I am most strategic that way.

I am however exhausted, and facing another battle.

It was a bit of a struggle to keep the chin up this week, as I often felt like her:

But, I didn’t act like her. Not even once. (Well once I cried – but I got yanked past it.) And that’s about all of that story I can share here, for now.

But these last few ~~weeks~~ months, have left me with a lot of questions.

See, there is this constant battle to do what is right, or what I perceive to be right, as I advocate for Meghan, and for my family. But inevitably, because I am so introspective – I am left with a ton of questions at every fork in the road.

Last week when we took her to 4 doctors and an ER about her shoulder, I ended up being told I went to the wrong ER – that we didn’t belong there. But it is a cancer center, she is already a thyroid patient there, and my child grows things. While we are blessed that none have been cancer yet – I am not of the “wait and see mentality.” But, still I paused and wondered if I had done something wrong.

In the end, the rheumatologist gave her a muscle relaxant. We began rehabilitative PT and I am seeing progress. The shoulder and neck remain wickedly sensitive – but she has back almost full range of motion.

Still we watch the lump behind her shoulder blade, in hopes it continues to decrease in size and doesn’t turn out to be the “soft tissue tumor” we were advised to look out for.

Really – no one has even a bit of a clue. And it is often just downright exhausting.

Physical Therapy this week was refreshing. At least I deal with professionals who have made themselves aware of Meghan’s needs and focus with a goal of eliminating, or severely managing, her pain. Thank God we found them.

Because of them, Meghan will swim in her meet tomorrow. No freestyle – it hurts the neck. But that was OK with her.

Backstroke seems by far to be her favorite. I love watching her swim. She seems so at peace.

It gives me a time to break from all the questions. The wondering. The worry.

It is easy to doubt yourself sometimes when so many things are changing at once. Whether you are precipitating the change, or reacting to it out of necessity, when there is so much at once I think it is normal to wonder.

We are not super difficult to get along with. Yet we go through doctors like a toddler goes through shoes. We have very few close friends – confidants to be trusted. Those who will be honest and open minded. We spend a lot of time alone. We get along really well – thank goodness.

I think what we look for is doctors, friends, associates, people who can practice:

I just wish there were more. No one really fits in a box. And that’s not just us, and our “rare disease.” Everyone is unique, and special. Everyone needs to be looked at with a fresh pair of eyes. Everyone needs to be viewed through the perspective of the other person. Only when we start to look at things through someone else’s point of view do we solve anything.

It is the outside the box thinkers that solve IEP problems, medical problems, friendship concerns, desires to make the world better…

Daring to think outside the box is risky. It is hard. It is necessary.

Especially in this season of “test prep” where I have seen this scenario one too many times…

Mine, yours, all of them – they are individuals. They have specific needs. We should never be discouraged when advocating for them and their needs.

In many cases – we are their only voice. We MUST think outside the box for them.

Anxiety and the Morning Rush Hour

Published on January 24, 2013 by beatingcowdens5 Comments

And that is how the day began.

Anxiety in full swing before 7 AM. Never a good sign. Especially when the panic attack is coming from your 9 year old.

See, I have a problem with this. And maybe it is where some of my anger comes from. I don’t have a problem with Meghan. I am not upset with her, or her anxiety. I am really just PISSED OFF at the cause of her ceaseless worry. It is against the balance of nature that a nine year old should have to have this much to be concerned about. It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie. She is too smart. And her memory is way too good.

Sometimes, on mornings like this one. I have precious little to say. So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.

And while she is crying about the huge overgrowth that on her gums where she lost her last tooth. I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away. (“LIAR” I hear my inner voice scream..)

Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were. He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth. However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.

Yep. He is a nice man. But, he obviously doesn’t know my daughter doesn’t miss a beat. She was all over that comment for weeks on end. We already had her gums cut once in 2008 for an odd thing that grew over her front tooth. She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.

So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage? I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.

At least she laughed. It’s nice to have a smart kid. One who can respect that there just isn’t anything else for me to say. Some days we have to push on. Even when we are worried and scared. Even when we don’t want to. Even when it’s not fair.

Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.

So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.

They are nice to her there. Really they are. But I cried on the way to my school, just a few minutes away. I am in a rut. I have to get past this anger… for both of our sakes. But lately I just feel mad.

Of course that’s not who you see when you meet us. You don’t see worried, and mad. You see our smiles. See we get life. Both of us do. On different levels of course, but we get it. We know there are so many people who suffer. We know how blessed we are. Our prayer list is endless. But some days we just “keep swimming…” and…(we)

I got the message at about 12:45. Meghan’s school nurse had called. I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.” She was complaining of lights in her eyes. She was “off.” After 5 years in that school, I have received limited phone calls. When they call – I answer. So, with permission I headed out early.

I got my girl home. We sat in the dark room. I rubbed her eyes. She had a bit to eat. Eventually she tarted to perk up…the anxiety had gotten the best of her. All the makings of a migrane at 9. DAMN this syndrome. Leave her ALONE!

And as we wrapped up for the day. Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy. With a kiss and a smile she headed to bed. God, I love that little girl.

I got in the car to check in on my grandparents. The phone was off the hook. This is an ongoing event, and one we share lots of laughs about. I arrived to find them in their recliners, watching TV. The phone was in Pop‘s pocket – on.

I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”

“How old are you?” I asked.

He winked and smiled, and told me he forgot.

I guess it didn’t matter because everything was working just fine. But some days I feel like I might as well be 93 and he, 39.

As I drove home I thought about genetics, and environment and all those biology classes I hated in high school. I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment. I grew up in a climate of a “can do” attitude. We did… because that is what needed to be done.

Still, at 92 and 93 my grandparents do what needs to be done.

I decided while I did not gain all their good genes, I gained their drive and determination. Their faith,stamina, and hopefully some of their wisdom.

I will get out of this rut. Cowden’s Syndrome will not own us. It will not win. We can do it, and we will.

My Little Ambassador

Published on January 17, 2013January 17, 2013 by beatingcowdens15 Comments

Meghan is really into raising awareness of Cowden’s Syndrome and other Rare and Genetic Diseases. She is extremely excited about “World Rare Disease Day” on February 28th.

We are in the process of making MANY denim ribbons that look like this. She plans to ask her principal tomorrow if she can give one to every staff member and student in the school. She wants to do this purely to raise awareness. Her ideas for fundraisers are developing separately.

She has also researched statistics on Rare Diseases, and came up with this sheet to attach to the ribbons.

February 28^th is World Rare Disease Day

My name is Meghan… and I have a Rare Disease called Cowden’s Syndrome. It is a genetic disease that affects only about 1 in 200,000 people. (That is only about 1,500 in the whole USA!) One of my genes called PTEN is broken. It causes tumors and vascular growths in my body. I have lots of surgeries. My Mom has Cowden’s too. We are luckier than a lot of other people with rare diseases.

I learned some information about other rare and genetic diseases;

1. There are about 7,000 types of rare diseases.

2. Some of the rare diseases affect less than 100 people.

3. 50% of all rare diseases affect children, and are responsible for 35% of the deaths in the first year of life.

4. 1 in 10 Americans are living with a rare disease.

5 About 350 million people in the world are affected by rare diseases.

6. If all the people with rare diseases lived in one country, it would have the 3^rd biggest population in the world.

7. 80% of rare diseases are genetic. They can present at any time in a person’s life. My mom was much older than me when she was diagnosed. I was diagnosed first!

8. There are no cures for any rare disease, and only 5% of them have any treatment.

9. Over 50% of all rare diseases have no foundations, support groups, or anyone looking for a cure.

10. Cowden’s Syndrome isn’t fun, but when it comes to rare diseases, we are some of the lucky ones.

We support, and get our information from www.globalgenes.org. Their slogan is “Hope it’s in our Genes.”

That “play on words” is why we wear denim, and denim ribbons today.

In addition, because maybe there was a chance I couldn’t get any more proud, she received a book assignment from school. She had to write a story where the main characters were two dogs named “Casey and Bella.” She decided to write about what meant something to her.

I have no idea who will win, but you know who gets my vote.

Everywhere she goes, she seems to take an opportunity to tell someone about Cowden’s Syndrome. She says people need to know. She uses our necklaces to start all sorts of conversations.

She dreams that one day they will be as common as the “pink ribbon,” or the “puzzle piece.”

I think she is just the girl to make it happen.

Someone in one of my online groups asked if we knew anyone famous with Cowden’s Syndrome.

Does… I know someone trying to make Cowden’s Syndrome famous count?

I love my little girl!

One step at a time

Published on January 9, 2013 by beatingcowdens14 Comments

Tonight, we celebrate the small victories because we are fully aware how important the little things are.

I get to keep my spleen for 6 more months. (And maybe even longer!)

The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.

Makes me wonder when keeping our organs became cause for celebration.

That is definitely in the “Post Cowden’s Syndrome” world.

You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.

We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.

See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.

So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.

So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.

When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.

This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.

Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.

I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.

I try not to think too far ahead. You know what Mom says about planning anyway.

And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.

So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.

Reflections

Published on December 16, 2012 by beatingcowdens3 Comments

I can remember as if it were yesterday, walking the halls of the elementary school where I am a teacher, in the hours after I had heard of the horrors of 9/11. I attended the same school as a child. I knew that the lives of the young second graders I now taught would never be as happy and carefree as mine; some 20 years prior to that day when everything changed. It was an eerie feeling. One that I knew would be realized gradually. It was a moment I have reflected on countless times through the years.

Friday was a busy day. I never stopped for lunch, and it was 6th period before a colleague mentioned the shooting in Newton, Connecticut. At that point the details were still extremely sketchy, and while I was troubled, I was not nearly as disturbed as I would come to be over the next few hours.

As the details of what had transpired at Sandy Hook Elementary school began to unfold this weekend, I was, like any other compassionate human, horrified and appalled.

I send my child, my heart and soul, to a school a few minutes from where I work. The staff is dedicated, and caring. Honestly, I never gave her safety a second thought. But, after visualizing the entrance to her school – so close to the cafeteria, often full of children. Well, my mind when left unattended can do some awful things.

And then there is my own school. The school I attended as I child. The school I have taught at for 16 years. The children who are the siblings of others I have taught. The families I have known for years. I think about these children often. I talk about them at home as if they are part of my family. I live each day with the knowledge that I am entrusted to educate, and keep safe, someone’s “heart and soul.” This is not a responsibility taken lightly.

I know the exuberance of a room full of 6 and 7 year olds. I know the electricity in the air in the weeks before Christmas. I know the love in a teacher’s heart when she hides her students in closets, or tells them she loves them.

What I do not know, what I can not imagine or comprehend, is the heart of a man who walks into a school building and kills – 20 children and 6 adults. I can not know. Nor do I want to.

It is not my place to judge him. It is not my place to publicly state his wrongdoing. I have a strong faith, and I leave the sorting out of all that to God.

I know with confidence that those who died, as young innocent children, or their protectors, were welcomed warmly though Heaven‘s gates. They are not the ones I worry about anymore.

As a parent of an ill child, especially one that suffers with a ruthless rare disease like Cowden’s Syndrome, I do not know a day of peace. I worry from sun up to sun down about tumors, and growths, and headaches, and hot flashes, and lingering maladies that don’t suit a 9 year old. I am always at the ready because I don’t know what we will be fighting next. But I can tell you this- there is no part of me that would trade places for a second with these families.

I have the blessing, if you will, of knowing something about our enemy. We have the ability to be proactive. We can battle. We can prepare. We get tired, but we can win.

Evil ripped these lives from their families. There is nothing they could have done better. or differently There is nothing they could have fixed or prevented. They went to school. They went to work. And they died.

So, what can you take from this whole nightmare?

I will take from it that I need to do more of what I do every day. I need to hug my daughter and my husband. I need to tell them I love them every time it crosses my mind. I need to serve ice cream for dinner sometimes, because its fun and silly. I need to look less at the clock and more at them.

I need to prepare for the holidays with a different mindset. I need to organize, but not to a fault. If the cookies don’t get baked – I need to buy them. If the cabinet’s don’t get cleaned, I need to serve extra wine so no one notices. If I can’t cook it, I will order it. And come Christmas Day we will sit as a family. We will count our blessings, and remember our lost loved ones. We will understand that we are all different – and we are all the same.

The battles we face in our house are real. The journey is not always easy, but every day that we are together is a blessing. And there is no promise of tomorrow together on this earth.

Monday will be here in a few hours. I will send my little girl on the bus to school, with an extra lump in my throat. I will head the short distance to my school where I will look at everything with an eye towards awareness. I will look at my students and remember the lumps in their parents throats. I will look at my colleagues and respect that we all have the same goals in mind.

And when my phone rings, and I get the news about my spleen – bad or good. I will take a deep breath and keep on swimming. No matter how tough things can get, it could always be worse.

May God, and all the angels above surround the families and friends of all the victims. And may they all rest in peace.

Maybe it wasn’t a “Total Loss”

Published on December 2, 2012December 3, 2012 by beatingcowdens4 Comments

The Insurance Agent called Friday night. He told me my car was a “Total Loss.” I think I knew that after I saw this picture the first time, but it was still a little hard to hear.

Even though I understand the term “Total Loss” has specific connotations in the insurance world, the terminology wasn’t sitting quite right with me. To me, a “Total Loss” means I didn’t learn anything. It was a waste. I took nothing from it. That couldn’t be farther from the truth.

I have taken something away from every experience I have had in my life, especially the very trying ones that seem to be pelting me like hail on a blustery day. Sometimes what I take away is positive, and sometimes – not so much. But I always, always learn something.

1. No matter how long you stop, and no matter how hard you look, and no matter how sure you are that it is safe to go – a speeding car may hit you anyway.

2. If there are no witnesses to an accident – there is no way to “prove” excessive speed. This is the case no mater how many times your car spun around.

3. When you ride in an ambulance its less scary when you take someone you know. And, there are people kind enough to ride in the ambulance with you even though they hardly know you at all. There are real live angels among us!

4. When you are in an Emergency Room of a local hospital – burn your socks after walking on the floor, and don’t look too closely at the walls. Don’t expect the doctors to have any idea – or to really care what Cowden’s Syndrome is, and how it affects your body.

5. There are some really really nice insurance people, and some really obnoxious ones.

6. Many doctors do not accept “no fault” insurance, so finding one to check you out may be a challenge.

7. The pain is worse before it gets better.

8. The pain of being told you are more liable than the guy speeding through the school zone simply because th stop sign is on your side of the intersection may not be physical, but it hurts your pride. Especially when you know you handled it right. It is hard to get over hurt pride, but you can find peace with a clean conscience. So glad I have one.

9. It doesn’t matter much to anyone that the guy who hit you didn’t even try to stop, swerve, honk, or perform any evasive maneuver before plowing through you. It’s all about the stop sign.

10. Whiplash, and muscle spasms are real. Muscle relaxants are useless because they can’t be taken during the day when you have to be a full-time teacher and mom, but they help you sleep a bit at night.

11. When you stop and consider your accident scene, and you realize all the things that could have gone so much worse, you are reassured that the angels really do watch over us. (Thanks Angel Meghan… and all the others)

12. When you have Cowden’s Syndrome, and hamartomas on your spleen, they will send you for an abdominal sonogram right away, and then – like everyone else around here- be totally unsure what to do with the results.

13. Fax any important test results to a doctor you trust. I am grateful the spleen didn’t rupture, but for those of you on my team, cheering for it to stay – cheer louder please. The hamartomas are growing. I will talk to my doctor at NYU this week.

14. When you are really at your lowest point, hurt, aggravated, and discouraged – make a decision to DO something positive. After realizing a child could have been easily injured in this mess, I have established a petition for our local councilman to reevaluate the speed limit on the street where the accident occurred, and to label it a school zone, as well as to consider multiple two-way stops and speed bumps. I have reached out to the local “Improvement Society” who already reached out to DOT on my behalf. I have parents in my school fully supporting me and working to gain signatures on a petition. Their children’s lives are in danger every day. I want some things to change to make the children safer.

15. It is more fun shopping for a new car when you are ready to buy one, but my husband is helping make our current search more pleasant. Always marry someone with a sense of humor.

16. Wear your seat belt! Darn it if Cowden’s Syndrome isn’t going to kill me – a car accident won’t either. So glad I was buckled up.

17. Those silicone implants can take a good hit. Thankfully – nothing popped!

18. I am not going on the teacups at Disney World ever again. I have had enough spinning for a life time!

There… not a “Total Loss” at all…

“More Birthdays”

Published on October 21, 2012 by beatingcowdens5 Comments

I get it. Sometimes it takes a bit – but I get it now.

I mean, I understood in theory what the American Cancer Society meant when they came out with this slogan, but today it really hit me.

Today was it – the “take two” for my little girl who was shut out of the Susan G. Komen Race for the Cure in September because of a fever. This was her chance to walk with Mom and Grandma. She even got the added bonus of having Dad with us this morning.

Living where we do, an event like this seems to bring out just about everyone, and it was hard to take two steps without bumping into someone we knew. It was also almost impossible to look anywhere and NOT see one of those pink survivor sashes. I saw them on women of ALL ages – from the frighteningly young, to the admirably old, and it got me thinking.

More birthdays…

Before my mom had her cancer, she could have sometimes been caught cringing at the sound of “50.” After a double mastectomy, 6 months of chemo, and in the middle of 5 years of tamoxifen – she embraced 50 with a smile, and slid gracefully past 60. “Beats the alternative,” she often says.

More birthdays…

We waited with a group from Meghan’s school for a while, and it was hard not to read some of the “team” T-shirts. A large group gathered right next to us was commemorating a young lady who apparently died of breast cancer in 1994. Her birthdate was listed as 1971. What her family probably would have done for more birthdays. I can’t even imagine…

More birthdays…

As I stood there, I thought about the “previvors” I have “met” on the internet and from this blog. They have courage of a type no other can quite get. The courage to undergo a prophylactic bilateral mastectomy is not to be understated. I am impressed at the maturity of the very young, and the wisdom of those closer to my own age. But, I was struck, somewhere in between the quick math that left me knowing the young lady on the T-shirt had been 23 when she died of breast cancer in 1994, and that my own girl will be 23 in 14 years. Suddenly it didn’t seem that long, and I was afraid.

More birthdays…

My little girl will grow to be 95 I reassured myself. With the power and knowledge we have – she will know lots more birthdays. But the reality that my mom had cancer at 48, and I had it at 38, and the current screening recommendations are to screen 10 years before your closest relative had the disease, well – it made it hard to breathe for a few minutes. Then my husband reminded me that she has ALREADY been screened – twice. We will be vigilant.

More birthdays…

And then I thought about my own. I will turn 39 next month. That is the age some people like to stay at forever. NOT ME! I want MORE BIRTHDAYS!

Meghan1990 — My beautiful cousin Meghan died of Leukemia in 1991, on my 18th birthday.

More birthdays….

My cousin Meghan was a brave soul. She was diagnosed with Leukemia when she was 2. She fought for 4 years before the disease took her from us. She got her wings the day I turned 18, and every birthday since then has been bittersweet. We had a connection that I still find it difficult to describe. My love for her was deep enough, that I needed to name my daughter for our “Angel Meghan.” Meghan did not have enough birthdays. This may be the year that I look at mine a little differently. Maybe its time to use my birthday as a time to celebrate BOTH of our lives.

More birthdays…

We left the walk a little early this morning. We had to head out to Long Island. My nephew Luke was celebrating his 9th birthday today. And as the kids played, and the candles got blown out on the cake, I found myself really sure that I understood. As my sister said just an hour or so ago… It’s not about the gifts. It’s about the people you celebrate with. We celebrated Luke’s birthday with 3 GREAT grandparents, and 4 of his grandparents. It’s easy to fight for more birthdays when you are this blessed.

I get it…

Just Another Day “Off”

Published on September 26, 2012September 26, 2012 by beatingcowdens4 Comments

We had a day off today, so if you play this game often, you can guess that we spent it – at a doctor! Because, that my friends, is how we roll. Except today wasn’t a high-tech specialist or a visit to Manhattan for testing. Today was kind of ordinary. Today we were at the orthodontist.

Now, I have made no move to hide my concerns about Meghan‘s accelerated development, but since I have come to the conclusion that I am the only one at all concerned, I am trying to just move along with it as it comes.

We have been with the orthodontist since she was 7. At the urging of our kindhearted dentist, I was nudged, gently at first, and then… well, it was time to take her to be evaluated. At 7 she had a rake put in her mouth. A fixed appliance, similar in concept to a palate expander, but different. A rake is there to break the tongue thrusting habit. She wore that fixed appliance for a year, and a removable nighttime retainer for another year. All the while the progress her teeth and her smile made were remarkable.

So, last month when we were at a routine check up the orthodontist told me to schedule an appointment to have her braces put in. I asked when, and was told, “soon.” It was shown to me all the progress that had been made, visible in the computer Xrays, and explained that if we put them on now her wear time SHOULD be 18-24 months.

Quickly doing the math I asked, “She could have them off before Junior High?” Thinking in my head how fabulous it would be to have one less worry during the three most awkward years of your life.

He looked at me a bit stunned and asked, “How old is she?”

“She just turned 9.”

He looked at the XRays again. I asked him if she was too young. He told me her chronological age really had nothing to do with things. Her dental age makes the decisions. Her mouth is ready he told me.

So, we made the appointment and then sat in the car for a long time. She asked me question after question. She was curious about my braces, and her Dad’s experience as well. She wanted to know why I thought it was so good to have them off before 6th grade. She told me she was scared, which I said was normal. She asked me why everything was happening at once. Why was her body growing so much, why is she ready for braces, why can’t she just take a rest? She understands really, she always does. But sometimes she needs the pep talk that we have to press on. She came around and I turned the car back on, prepared to enjoy one last afternoon in August before school began.

“One more thing Mom.”

I stopped and turned around to look at her.

“Don’t tell anyone at all. Don’t blog about it. Don’t tell your friends. Don’t tell anyone. I want it to be a surprise.”

She might have just as easily broken my fingers, and barbed wired my mouth shut. But she was clear. This was HER secret – not to be released without her permission. And while I may have flubbed once or twice along the way, on the whole I did a darned good job.

She taught me (another) lesson that day. When I share my life here, I am also sharing hers. And she wants, and deserves a say. We have talked a lot since then about whet I can and can not write about. She puts very few restrictions on me, and I appreciate that – but I respect each one. This life is hers too. And, in the middle of teaching her about the permanence of the internet, I have to respect that on some things she will want privacy.

So, I write about Cowden’s Syndrome, about thyroid nodules, and AVMS. I write about breast cancer and my mastectomy and hysterectomy. I write about her worries about cancer. I write about her desire to fit in, to have fewer appointments, and to feel a bit more normal. I write about the countless hours we spend waiting, and the doctors who often don’t help much anyway.

I write about her desire to change the world – her fundraising ideas, and what a generally awesome mature, and compassionate kid she is.

And then, I let her read. If it bothers her. It comes out. Its only fair.

But, I tell her, there are sacrifices, some small sacrifices of privacy that have to come when you want to raise awareness. She gets it. She always does.

So today, after the braces were on, and literally not less than 25 minutes later – before a drink of water – one of the brackets was off. (The cement must not have adhered.) There were some tears then. Some frustration about wasting the WHOLE day at the doctor AGAIN… even if it is for “normal” stuff – none of her friends have to have braces this young….

And there was the life lesson for today. For both of us. We stayed calm. We had another long talk about how “everyone has something” even though it seems she has an awful lot. We talked about her friend’s older sister, and the new back brace that she is wearing, the apparent culmination of a long list of medical issues that have plagued her. That young lady never seems to complain either. Maybe that’s why Meghan respects her, and is drawn to her. Kindred spirits? We know quite a few.

We got the bracket fixed. We headed to Party City. We got a bargain on matching Halloween costumes. We went to Kohl’s and she got a stunning dress for the Father Daughter Dance in November. Slowly, the smile crept out.

We brushed the teeth for a long time tonight, getting used to the awkward new additions in her mouth. Soon they will become natural, like all the other bridges she has come to and crossed in these nine years.

Maybe the Cowden’s has nothing to do with the braces, or the need for having them so early, but I think it has helped make us even stronger, tougher, more durable.

She is sleeping peacefully, all content pre approved. 🙂

Another day off, another mission accomplished. One day I would just like the mission to be a day in our PJs!

before braces 92612 — Award winning smile – even before the braces!

Fighting My Way Out of the Cage

Published on September 18, 2012 by beatingcowdens4 Comments

A few days ago I wrote about my dog Lucky – biting through the cage. Well she got her wish, and she is a free dog now. Free to roam around my house, lay where she wants, and drink when she wants. She is much calmer and happier now. It doesn’t take much to make her happy.

Why then can I not take her lead? Why am I living in the cage of my own thoughts?

My husband, he has the right idea. He worries only when it is absolutely necessary. I worry about making sure the stove is turned off. He worries when the house catches fire. Maybe it’s a male/ female thing. Maybe it’s my controlling OCD. Who knows? What I do know is he is MUCH healthier than I am mentally.

I am still quite sane, but admittedly neurotic. Some say it was inevitable after the year we have had. I think it stretched back much farther. I could say parenting a not so healthy child has done it, but if I am honest, I think I have always been this way.

I just read a Facebook friend’s post. She talked about her brain continuing 24/7 even when she asks it not to. That’s EXACTLY how I feel.

I am sure the Cowden’s Syndrome, the mastectomy, the breast cancer, the hysterectomy, the tumors on the spleen, the cyst on the kidney, and the constant screening tests aren’t helping. And those are just mine – not Meghan‘s! We average 3 doctors a week, usually at least 2 on the schedule and a pop up. Each one seems to look, poke and prod and not offer a single answer. Then the tests lead to more tests. It’s a bad cycle we are in here. So then I spend my spare time researching – thinking maybe I can find the answers they don’t know. I end up just as clueless and thoroughly exhausted. Sometimes you have to stop biting at the cage, realize the answers aren’t there yet, and realize you have the power to let yourself out. I am “luckier” than my dog Lucky – no pun intended. I have the benefit of being able to free myself. I just never seem to get it quite right.

I am going to try that one day at a time thing again. I am going to try to concentrate on all the many things that have gone right. I will TRY to worry less when my daughter’s WBC is frighteningly low, while I wait for the retest. I will worry less about West Nile Virus, and just try to treat the 8 mosquito bites on the leg of my immune compromised kid. I swear I will try. It’s not going to be easy though.

When you see me in a fit of worry, feel free to give me a “cyber” smack into reality. ONE DAY AT A TIME!

TODAY – good things happened. I got through the baseline screening colonoscopy and endoscopy. The colonoscopy was completely CLEAN! I do not have to go back for another 3 YEARS! Beats the heck out of the every 6 months they were recommending for Cowden’s patients. Also, my CLEAN scope frees up my little girl for a while. As long as mine stay clean they won’t start screening her until she is at least 18. Breathe. Some minor biopsies on the endoscopy but the doctor is expecting a CLEAN pathology.

For me, for my daughter, for my husband, and for ALL of us who are fighting our way out of the cage. We can do it – one day at a time!

Race for the Cure (minus 1)

Published on September 8, 2012 by beatingcowdens6 Comments

survicor — It won’t be nearly as much fun without my biggest fan!

Tomorrow morning I will gather in Central Park with some 25,000 other runners and walkers, survivors, and friends and family to support the Susan G. Komen Race for the Cure. This will be my first race in a pink “survivor” T shirt, insisted upon by Meghan, my biggest fan.

This was our year. I registered Meghan as a “real” walker. She got an official race day T shirt, and a number too. She was so proud to be walking with her Mom, and Grandma – two “survivors.” She was thrilled to be registered, and wear a number. She was looking forward to waking up super early.

Except, she won’t be coming.

At 6:30 tomorrow morning my Mom will pick me up. We will each wear a special banner designed by Meghan. We will pick up our friend, another survivor, and we will head to Central Park. The car will hold one less this year, and if I might say so myself,

I thought it all day. I thought it to myself. I even hid in my room and cried a little, ok a lot. I had quite the pity party going for my girl. Asking over and over WHEN she is going to get a break, and WHEN is something going to go her way, and WHY can’t she seem to just have some fun when her HEART and SOUL are ALWAYS looking out for other people. And, not to be surprised, she never said once all day that it wasn’t fair.

She encouraged me to go, even without her. She said she was sad, and disappointed, but we made a date for the American Cancer Society walk on Staten Island in October.

She is asleep on the couch right now with 102 fever. She woke up great this morning. By noon she was developing a fever. She was complaining of a headache. By 2 PM she had cleared 102 and we headed out to the urgi center. After an OBNOXIOUS 3 hour wait, we left with the diagnosis of (“It’s probably”) strep, and (maybe) and ear infection. I sometimes wonder if they train to be meteorologists, and end up as doctors – probably…maybe… UGH!

He second dose of Clindamycin will be at 11PM. By noon tomorrow we will know if it was bacterial or viral because she should feel much better, and the headache – that always scares the CRAP out of me, should be gone.

By noon tomorrow I will be home. Back from my race. Full of conflicted emotions. I have been to this race almost every year since 1998, but Meghan kept calling it my “first” race. I will be glad to be with my mom and my friend, but really, what good is any race or celebration without your biggest fan?