The Arrogance Epidemic

Published on May 19, 2014May 19, 2014 by beatingcowdens2 Comments

Truly. Under diagnosed, and under treated. Spreading wildly. Seems especially prevalent among experienced medical professionals.

Not all are affected. Some are immune. Some resist with all their might.

Some embrace the arrogance. They seem to enjoy spreading it to those around them.

Others hide the arrogance, carefully and efficiently. Until the moment they are challenged. Then they unleash the beast full force.

We met again with the thyroid surgeon today. Two weeks ago we requested an appointment because Meghan felt something in her neck. I have learned from experience not to question Meghan. She has proven time and again to have an awareness if her body that defies explanation.

Two weeks ago he felt her neck and declared the lump she felt to be a salivary gland. He said some small lymph nodes surrounded it, but when we came back in two weeks it would all be gone. He said it with a good amount of authority- but not arrogance. He reminded us of her clean pathology report. He directed us not to worry.

And maybe we would have paid it no mind, except that’s not how life tends to go around here.

So, three days after the surgeon declared the “salivary gland” in her neck, we ended up inpatient at a local hospital with an attack of what ended up being severe gastritis.

While they were sorting themselves out, the pediatrician (who is as far from arrogant as they come,) remembered feeling the neck a few days prior. He had deemed it a lymph node, and figured while we were there he’d have a colleague, a hematologist/oncologist give it a feel. She deemed it a lymph node too and sent Meghan for ultrasound.

Just sitting around the hospital with tons of time as they tried to figure out the root cause of the GI pain, we were amenable to a neck ultrasound.

Now I am not taking sides- I have experienced great sonograms and horrendous ones- and witnessed them- in the best and worst locations. So I take reports as point of information, and never shun clarification. But this one clearly said lymph node- almost 2cm. Subsequent blood test ruled out the salivary gland theory as well.

So Thursday, after we were discharged I contacted the surgeon’s office. We had an appointment today, Monday the 19th. I spoke to the staff. I sent the ultrasound report. I asked them to schedule a sonogram at their facility for us to compare the one we just received. I figured we’d see the doctor and then have the sonogram.

Except as we entered the exam room he was agitated. Looking at the ultrasound report clearly for the first time, he said,”this must have been taken before the surgery.” Seeing it was Meghan’s report I interjected- “No it was taken Thursday the 8th.”

Enter arrogance. I swear his whole demeanor changed and it was like the arrogance bubbled up from his toes.

Now I will be honest- I don’t have a history of playing nice in the sandbox when I am pissed, and I don’t do arrogant well.

So, I may not have been the sweetest. But two weeks ago he was very concerned if she’d had fever, or vomiting. He made it a point to weigh her. Now- she spent 6 days in the hospital and no scale? Somehow I let that go.

What I couldn’t let go was his statement that there was nothing in her neck that was enlarged. See, you can tell me there is nothing to WORRY about. That I will take happily. But you can’t tell me nothing is there. Because 2 doctors an ultrasound my daughter and my own fingers tell me there is.

So we’ll get an ultrasound and then I’ll call you tomorrow to tell you nothing is wrong.

From your arrogant lips to God’s gentle ears…

So they had the girl, who just made her way back to school after a week in the hospital wait for three hours. We made it home around 7.

I know the treatment for arrogance when it overtakes common sense. Time to be done with it. A new consult has been established but we wait- so as not to cut off the nose to spite the face…

In the mean time I know we are not the only ones. There are so many good medical professionals. There are so many who take the time to think, and care, and treat. And then there are others.

The problem with Cowden’s Syndrome is the sheer numbers of doctors we see. The problem is hard to avoid.

Plus- as my grandfather once told me- I can be a little difficult to work with.

It’s all about my girl and whatever she needs….

The Spoon Theory

Published on May 17, 2014 by beatingcowdensLeave a comment

While we were in the hospital last week, a good friend, who is chronically ill herself, sent Meghan a very interesting article.

It was about “The Spoon Theory,” and explained chronic illness from the perspective of one who lives it every day.

Meghan being incredibly literate, and a master at figurative language, picked up the analogies quite quickly, and while the author wrote about lupus, a disorder Meghan does NOT have, she found the text and related analogies very meaningful.

Our dialogue this week has already begun to include questions about how many “spoons” she has today. As someone who lives with my own share of issues, but none as severe as my daughter, this has opened up communication in a fantastic way.

The author has copyrighted the story, so I have permission only to link you to it, but I encourage you to give it a read.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

And thank you my dear friend for sharing. Thank you.

Motherhood

Published on May 11, 2014 by beatingcowdens4 Comments

MOTHERHOOD

I’ve only been a mother for less than 11 years, but I have been shaped and molded by some of the best around.

At 40+ years old, I can still boast THREE Grandmas that have all been a huge factor in my life.

I have my Mom – my hero.

And, I am friends with some of the best Moms in the business.

Not to mention – I parent a pretty darn smart 10-year-old – who has shared many life lessons with me.

So in honor of Mother’s Day – a most unusual one for me – I thought I’d try to reflect on some things I’ve been taught, and some things I’ve learned all by myself.

1. Motherhood is messy. Despite the best laid plans, no matter how your child, or children have been brought into this world it is a messy job. Things don’t go according to plan. Ever. So stop planning and stick your fingers in the mess of it all. Heck – jump right in and play. Your kids will remember your smile more than your polished table, organized closet or streak free windows. (I’m still working on that one!)

2. Motherhood is exhausting. Just when you think you have it – something will throw you into a new stratosphere. You will be tired for the rest of your natural life. Eat as well as you can. Take care of yourself. Try to give up caffeine. Splurge on under eye concealer. Then get in the car and head to swim practice, doctor’s appointments, shopping, therapy. While you are in the car – TALK. Children in the car are a captive audience. You can have some of your most important conversations there. Plus – it’s illegal to text and drive.

3. Motherhood is different for everyone. Comparisons are just not a good idea. As a matter of fact – make a habit of NOT comparing. There is no need to justify having one child, or claim you’re more exhausted with three. Each one, however the child became yours is a gift to be cherished. They are not potato chips, and having one doesn’t make it “easy” any more than having 3 or 4 makes it “hard.” Avoid telling anyone how much tougher it is to have a boy, or a girl. Avoid generalizing and making excuses. Just love your child.

4. Motherhood involves paying attention. Stop texting. Put down your cell phone. LISTEN to them. TALK to them. You may be very impressed by what they have to say if you get to know them.

5. Children are unique. Let them learn early to embrace their individuality. Create an atmosphere of unconditional love. Build their confidence, and keep them grounded enough not to become arrogant. Develop gracious losers, and equally gracious winners.

6. Motherhood is like being on stage. All day. All the time. And they watch EVERY thing you do. If you wonder how they learned that habit – good or bad – look at yourself. They want to be just like you. And chances are good they will. BE someone you want them to be.

7. Motherhood involves worry in a way you’ve never ever thought of before. That little heart beating outside of your body – no matter how old they become – will always and forever be more important than your own. You will worry about sniffles, and scraped knees, and heartache, and doctor’s appointments, and surgery, and pain, and healing. You will worry about doing too much, and doing too little.

8. No matter what you do, and how hard you try, you’ll never have it quite right. So always do the best you can with what you have where you are. That way you can rest your head peacefully every night.

9. Teach compassion. They won’t learn it unless you do. Teach them that “everyone has something.” No matter where you go or what you do or who you meet each day – EVERYONE is struggling with something. Whether it’s physical, mental, emotional, financial, greet every person with the knowledge they are bearing a burden. Try to frame all of your interactions with everyone around that knowledge.

10. Motherhood involves NEVER GIVING UP! Tenacity like you never imagined is necessary to do it well. When they are down and out and done, look at them and reassure them. Hold them. Support them. Forgive them. Love them with all your heart. The returns you get on the best investment of your life are immeasurable.

So as we sit tonight in the hospital, waiting, wondering, and worrying – we are still thankful. We have so many blessings in our lives.

Take a look at some of the women who helped make me who I am today – and enjoy what’s left of your Mother’s Day.

GGMa - a gift we got later in life. — GGMa – a gift we got later in life.

For those "like a mom" to us! — For those “like a mom” to us!

For those whose children are our Guardian Angels.

For the one who teaches me every day how to be a better human.

And we still squeeze in some time for fun!

HAPPY MOTHER”S DAY TO ALL!!

Passing time….

Published on May 9, 2014 by beatingcowdens6 Comments

So here we sit. Again. For the second time post thyroidectomy, we are in the hospital. The girl doesn’t feel well. She just doesn’t. End of story. But, not too many people seem ready to listen until she’s in a full on physical crisis. Even then sometimes the numbers are frighteningly low. Yesterday she knew. She NEVER tells me to stay home from work. She KNEW. And my pediatrician heard it in my voice. She was admitted soon after he saw her. He wanted it to be the flu. In some ways I did too. A little Tamiflu and some rest. Buts she’s negative for flu. No real surprise. Too simple a diagnosis for my girl. Since her surgery in February, her TSH (Thyroid Stimulating Hormone) which is supposed to rest somewhere between 4. and 4.0 has been lingering well over 10, despite numerous medication adjustments. The TSH is supposed to be down regulated when the synthetic thyroid hormone takes the place of the T4 and T3. Enough thyroid hormone and the TSH decreases. Not enough and it increases causing hypo (under active) thyroid symptoms which can range from bone crushing fatigue, to generally feeling unwell and a whole host of issues in between. He medication has been adjusted upward with no effect – several times. I know it takes time. I barely remember my own battle with thyroid hormones over 20 years ago. The veterans of this surgery tell me 6 months, a year… I get it. I do. But then there is the reality of watching your kid feel crappy every day. The reality of watching her FIGHT with all her might to do the normal things others take so easily for granted. And then I get impatient. To complicate things it may not just be the thyroid hormones keeping us hopping. That “lymph node” turned “salivary gland” is now back to a lymph node in the neck. We are awaiting the ultrasound that I feel should have been done with her appointment last Monday. And there is a fever. She never gets fever. Not really. And yesterday it was 102. Today around 100. No answer why. Not even the White Blood Cell Count gave a clear indicator. And the reflux. Painful. Like fire. Lack of desire to eat much of anything leads to weakness. And the throat clearing. Reflux? or lymph node? or something totally different? So we temporarily stopped the celebrex to try to solve the GI issues. The medical equivalent of robbing Peter to pay Paul. The joint pain – managed for now – is rearing its head. And why does a 10-year-old, with no gall bladder and a week of the worst reflux of her life – with no dietary changes – begin vomiting bile? Maybe just maybe we will meet up with a decent GI. Girls can hope. So I sit. We sit. Waiting for answers to questions. Waiting for answers to more questions than we will ever get. But we are hopeful. Anxious. At least right this minute the worst part of being here is passing the time with the stupid IV.

State of Mind

Published on May 4, 2014May 4, 2014 by beatingcowdens6 Comments

Fortunately her shoulder injury has healed quite nicely.

She heals well. Good thing. She has had so much practice.

She progressed through the state math exam with extended time for writing.

She weaned herself off the muscle relaxants quickly.

She is tough.

Good thing.

Wednesday she pulled me aside in school and asked me to feel her neck.

“Mom, I think this is a lymph node”

As she gestured to her neck, not far above where the mass that had cause the suspicion that prompted the removal of her thyroid, had sat less than 3 months earlier.

Hesitantly I put my hand to her neck, not as much to check, but simply to verify.

I knew she was right. She is always right. I swear she’s like “The Princess and the Pea” sometimes. She can feel everything.

But I put my hand to her neck as she instructed and instantly knew there was in fact, one swollen lymph node easily felt.

“Mom, the surgeon said I only have to go back and see him if I have any swollen lymph nodes. But, he said that was “highly unlikely.” I guess he didn’t know who he was dealing with!”

She tried to make a joke, lighten the mood while reading me for a reaction. I giggled. I reassured. I felt a deep sinking flutter in my belly.

Not because I assumed it to be a problem, but more because I knew this would unleash a cascade of additional appointments, and really… well, quite frankly… we are NOT in the mood.

Of course, all of that was, and is irrelevant. I called the surgeon, whose office insisted I have a local clinician verify that it was in fact a lymph node.

I called first the ENT who has been dealing with the throat clearing issue, hoping to kill two birds with one stone so to speak. HA! His office released a new flock – of which we will have to contain what we can another day. Instead of inviting us in to check on her improvement on his medication, he determined, sight unseen – and relayed through a secretary, that Meghan should see a GI doctor.

Apparently his on the phone conclusion based on the fact that her symptoms had not fully resolved on the nose spray and increased reflux medication was that a GI needs to treat her for reflux. While that may be true, on some level, at some point, someone at some point has to realize the two of us are quickly becoming overwhelmed, and sending us to another doctor is not always a good idea. (Plus, when your kid is 5 foot 2, and 100 pounds at 10 – no GI takes you very seriously at all.) And in reality – I just needed someone to check the neck!

So, I waited for our trusty pediatrician, and Thursday afternoon – on a bright sunny spring day – after an hour and a half wait – we heard what we already knew. It in fact is a lymph node, and it should be looked at.

So as Meghan asked me in the car if she should be concerned, and I calmly let her feel my own set of chronically inflamed lymph nodes, I calculated our next steps.

When I called the surgeon’s office this time I was told we would be seen Monday. They called Friday to let me know that our appointment was to be 9:30 on the 5th.

I woke up Thursday morning with a most unusual swelling in my left eye. I can’t for the life of me figure out the cause. By Friday when I went to tell my (patience of a saint) boss that I would need Monday off, I was looking far less than my best. Puffy eye had turned red and was starting to resemble infection.

As I sat in the urgi care waiting room Friday evening ready to collect my prednisone, my antibiotic, and my stern warning that if things didn’t improve by Monday I needed to see an ophthalmologist, I wondered where the breaking point is.

We had some tough nights this week – the two of us. We had some nights feeling a lot like we were bearing the burden of Sisyphus.

It is an uncanny feeling to be at the bottom of the mountain without a prospect of getting to the top. This feeling that we WILL be at this forever, requires careful mind games to overcome and is not for the faint of heart. We both experience it very differently, so the trick becomes to rely on each other, but understand our vantage points are unique. We MUST rest on each other, but others as well. And we MUST teach each other to look for the sun and the flowers and the beauty around us right where we are. It is a tall order for me some days. My 10 year old, well, she is my hero. Because, despite the occasional setback she finds a way to pick up and keep on keeping on.

She sent me this in my Email this weekend. I read it a bunch of times. Then I hugged her. She is determined. She is driven. She is my reason for staying focused.

So I shared with her a poem on my mind…

If you think you are beaten, you are
If you think you dare not, you don’t,
If you like to win, but you think you can’t
It is almost certain you won’t.

If you think you’ll lose, you’re lost
For out of the world we find,
Success begins with a fellow’s will
It’s all in the state of mind.

If you think you are outclassed, you are
You’ve got to think high to rise,
You’ve got to be sure of yourself before
You can ever win a prize.

Life’s battles don’t always go
To the stronger or faster man,
But soon or late the man who wins
Is the man WHO THINKS HE CAN!

– Walter Wintle

Today, she had a swim meet. Her team lost. They usually do. But they are great kids, who have a BLAST, and cheer for each other. They generally have a great time. And somewhere in between the team being hammered, she was on two second place relay teams, and pulled this out.

Gray Cap – Lane 4 (After her goggles flipped at the start!)

Clearly the highlight of my week.

Now let’s hope tomorrow is much ado about nothing, and we can get about facing the next set of plans life has for us.

In the meantime – your prayers as always, are gratefully accepted.

Playing in Pain

Published on April 27, 2014April 27, 2014 by beatingcowdens3 Comments

We missed church again today. Not because we overslept. Nope. We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room. If I had my copays back each year, I think they would exceed my tax return. Which is no great shakes anyway, especially with the whole identity theft mess. But, I digress…

Yesterday was a CYO swim meet. It started poorly because the bungee on her prescription goggles snapped in my hand. And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right. So, she want back to her old goggles. Guaranteed functionality – sacrificing vision.

She swam. Hard and as fast as she could. She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly. She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too. But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.

When I met her in the locker room her resolve was strong. My mission was clearly to help her get out as fast as she could. But the arm made it tough to change quickly. We got into the car before it all came out. She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm. We watched as the pain seemed to get worse. It went from the arm, up into the shoulder and into the neck. We are so used to there being pain. This child lives in constant pain. Some people must think all sorts of things, because something truly always hurts. But we have learned to put them aside, and, we have to triage. Last week she walked around for 5 days with a sprained ankle. Pain is so personal. Her nerve endings seem so easily excitable. Any injury seems to trigger an attack of “hyper healing” effort by her body. Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her. So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination. She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering. Or a day or two after an athletic play date trying to work through the residual pain. I know that the other kids aren’t fighting their bodies like this, and it breaks my heart. But she is one determined young lady.

So last night we sent a text to our PT. To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services. And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years! And at 9PM last night we were in her living room – getting informal advice from a very skilled friend. If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis. She is the one who said, “something isn’t right here – too many unconnected pieces. Take her to genetics.” And I did. And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE! — She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did. We also got a note because the injury is to her right bicep and shoulder. Her dominant side. And there is no practice for her tomorrow. And no Phys. Ed. on Friday… and then there is the math test this week. And the gamble as to whether she will be able to write enough, fast enough… So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015. We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013. We talked about wanting to do something BIG for the PTEN foundation http://www.ptenfoundation.org/ and Global Genes Project. http://globalgenes.org/

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework. We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler. A 3 dog house. Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before. And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did. The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

So tonight we will get a real sense of how long the muscle relaxant helps. And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early. Just in case…

Happy Birthday Dad

Published on April 17, 2014April 17, 2014 by beatingcowdens8 Comments

** I rarely go off the topic of Cowden’s Syndrome, but this is just so necessary. Tomorrow April 18, 2014 my Dad would have been 66.**

Dear Dad,

It’s hard to imagine a year has gone by since you sat at my dining room table. We shared pizza, and red wine, and ice cream cake. And you, who had eaten in some of the most gourmet restaurants around, were so gracious, and thrilled to enjoy a simple dinner with Meghan and Felix and I in honor of your birthday.

You even tolerated coffee from my Keurig with a warm smile.

I still remember that night as if it was yesterday.

"Don't take out the knife!" — “Don’t take out the knife!”

And here I sit a year later… in awe of all that has gone on. Stunned that you aren’t here to celebrate.

Thinking back your year is proof positive that we need to live each moment with the knowledge there is no guarantee of tomorrow.

But, you knew that. You learned that lesson many years ago as a young Marine in the jungles of Vietnam. Then, you lived it. And you learned, and you grew, and you learned some more. But, you lived each day without malice in your heart, and with the never ending desire to do the best you could with what you had where you were.

We didn’t always have it quite right, Dad. There were years where you weren’t around too much, and I missed you. And I’ll admit to even spending some of those years a bit angry. But, I grew up.

And Mom, she did the right thing. I got to work through it all, and come out better and closer to you in the end. Heck. I made out like a bandit, because when Mom married Ken, I got to enjoy all the benefits of two Dads. Not a replacement – either one, but two! What a lucky girl…

When you came back to Staten Island a few years ago I was thrilled. Now, a mile away from my house, I got to see you more than I even had before. You got to see Meghan. And I watched a relationship blossom between you.

You were there for her dance recitals, and some swim meets. You watched her on days off from school. You taught her chess.

You got some time to get to know her during years when life had kept us apart. I felt so much closure. So much love.

You smiled all the time when you were with her, and that smile is what she carries with her each day even now.

Even when we didn’t see each other, we spoke. A lot. I loved bouncing ideas off of you, and even when we didn’t agree, I loved hearing your point of view. You always HEARD me. You never JUDGED me. You listened intently to mine and Meghan’s medical issues, and I valued your perspective. I looked forward to talking to you. Especially on the cell phone (hands free of course!) on my way home from Whole Foods. Your voice always gave me energy after a long night.

Except for that one night. When I called you on a Friday from the road back from Whole Foods, and you told me you were in ICU. Stunned, I told you I’d see you in the morning. You said I didn’t “have” to come.

We spent a lot of time together those days as they ran test after test. You were getting edgy. A caged bird.

I took you home after the answers stayed sketchy. But I was worried.

You who could walk miles. You who could work countless hours. You who was always busy. You were tired.

Your skin told the tale of jaundice. Your eyes were tired.

Meghan asked and asked to see you. You put her off. You wanted to feel better.

Then on Halloween we got a 5 minute visit…

And even though she was worried about you, that hug carried her for quite some time.

There were appointments. Back and forth. I was so grateful to be able to take you. And I was so thankful for the time we had – to talk about everything and anything.

We had some easy conversations, and we had some of the hardest conversations I will ever have in my life. But I am grateful for every one of them.

You see I always loved you – but not until those last months did I really get to know you.

“I always wanted to exclude you from my pain, never my love. But the two became one in the same.”

And in that moment there was peace. You spoke what I knew. In very few words you elaborated on the Marine who returned from Vietnam, forever changed. You told me about the hurt, and the heartache, and the fear. I learned later the scope of the losses you suffered through, and the horrors you experienced. No wonder. No wonder at all.

The months got all garbled up. There was Shane, in to stay for a while, at exactly the right time. There was Lisa, at the ready to drive anywhere we needed to be. your “team” converged, got our acts together, discovered our skill sets and became unstoppable.

Road Trips to Columbia Presbyterian. Gut wrenching diagnostic testing. Your strength – surreal. Your focus – laser sharp.

You were back to survival mode. A Marine in the jungle. We were in awe.

That last week at the VA was torture, and therapy all at the same time. You had made your wishes clear. We knew the mission. We just didn’t like it one bit.

And when the angels grabbed hold of you on December 4th, and we knew that you were finally able to rest, there was a painful peace among us.

The days of your funeral were surreal.

The days after it just as intense. So many people had to be notified. Somewhere in your 6,000 contacts we found the strength to reach out to those who loved you so.

Perhaps if I had one wish, one regret- it would be that you didn’t know how much you were loved. By your family, and by those whose lives you touched on a daily basis.

You changed people. Your impact was intense.

You suffered too much Dad, with the physical, and emotional traumas of a war fought as a young man. For 45 years you bore burdens too intense for the strongest to process. You were tired.

You told me once about Cowden’s Syndrome to never let it define Meghan and I. You told me to listen to my heart and my gut, just as much, if not more than I listened to the doctors. No worries Dad. I haven’t forgotten.

I am sad that the cancer reached up and snatched you away – with no warning. I am at least in that way grateful for the warning system that is Cowden’s Syndrome. But, don’t worry Dad… I will never forget.

You know in the months after you died I reached out to your Marines. The few you spoke a little about, and the ones I had never heard of before. There were photos, and then names, and then long conversations. They, each of them a gentleman, called me upon hearing of your death. With some I laughed. With some I cried. With all I felt a bond. They were also your brothers, each one. I learned the meaning of “Semper Fi” in those conversations. More than 45 years later they wanted to know what they could do. And they meant it.

You would be so proud to know. You are remembered. Not as a saint, but as a good man. A man who made mistakes, and owned up to them. A man who loved, deeply. A man who desired to make the world better. A man who taught by living. A man who saw beauty through his camera lens.

You made a difference; to your Marine Brothers, to your parents, to your children, to your grandchildren, to your siblings, to your nieces and nephews, to the friends form all walks of life who loved you so, to the people you worked for, to the people you worked with, and to the people who worked for you.

We played music the day before you died. You smiled. We laughed. That is the spirit I hold close in my heart – even through my tears.

Happy Birthday in Heaven. Give Angel Meghan a kiss for me.

Semper Fi Daddy. Always faithful. Until we meet again.

All my love,

Lori

Identity Crisis

Published on April 16, 2014April 16, 2014 by beatingcowdens5 Comments

Sorry it’s been so long. I am working through an identity crisis.

At first I thought it was a mid- life crisis, but upon closer review, it is definitely an identity crisis.

Sometime about a month ago someone thought it a good idea to get all involved in my bank account without my permission. So, countless hours and a police report later – that is ALMOST resolved.

Then, last week we went to file my taxes. Apparently someone already did that. In JANUARY!

More hours on the phone. More papers. Just what I was hoping for -really.

The whole thing seems almost too hard to believe, almost. It’s not the first time either.

And, I am pretty vigilant.

I mean I do blog – obviously. And I am not super careful about personal information here. But, with financial stuff I am guarded. I online bill pay only through my bank – which incidentally changed this week. I don’t answer phone solicitations, or fall for those Emails that try to trap you into believing they are real by urgently asking for personal information.

I don’t use my debit card for anything. I keep one credit card and monitor its online activity every 48 hours.

By all accounts I am on my game. But, apparently someone else is there too.

And I can’t figure out why, although I have a host of suspicions. Since we are married this is the 5th incident I can count where one of our identities has been compromised in some way. We fill out lots of papers, but we do so because we have to in whatever situation requires it.

What I want to know really is, does someone truly WANT to be ME?

I mean full on Cowden’s Syndrome, breast cancer, hysterectomy, thyroid removal, spleen tumors, kidney cysts, a doctor every 30 seconds, no break, ever… with a kid just passed surgery number 11 in 10 years, and who does all that and then some?

I’m not trying to say my life is THAT bad. I can count dozens of others whose predicaments are worse – but it doesn’t let up. Not for a minute. Ever.

It’s like that hamster in the wheel thing. Not for the faint of heart.

I wonder if my identity stealer(s) – cause they can’t know if it’s the same person- would like to hang out with me for a week or two. Maybe during a “fake” Spring Break?

That’s what my daughter has come to call it, after between us we have already covered 7 doctor’s appointments, with more lab tests pending.

Because I could ask them to spend some time on the phone with the credit reporting agencies, requesting 7 year freeze on all credit.

Or maybe they would like to copy the police reports, and mail them out.

Or perhaps they’s like to file the medical bills. And then call the get the errors corrected. And then call again when the bills go to collections for no reason.

Maybe they would like to drive. Through Manhattan. The place I swore many years ago I would never drive. All day. And pay repeatedly to park the car.

Because this week I could have used some back up. A 1 o’clock appointment Monday for me – genetics. A story for another day. And then yesterday to Long Island for one of the few doctors who listens to us. And today there was a 9AM at NYU for Mom, and a 10 and 11:15 (which became a 12:45) for Meghan at Sloan. Sometime as I was driving between NYU and Sloan I thought a lot about how this is not my “real life,” navigating between taxis with my heart in my throat. I thought about my identity thief (thieves?) and how maybe they had some skills I could use too – like driving through chaos.

And as we navigated our way back towards home to make a local appointment with the ENT to address the throat clearing, I could feel the tension on my shoulders and up and down my neck. We made the appointment, in time to hear his ideas, and hop back in the car.

Onward to a quick Gluten-Free pizza – no cheese, and off to CYO practice.

Then, granola in the car and off to the other practice. Where I sit. Now. Waiting.

Prior to my nutritional cleansing I would say I was exhausted. Now, I am just tired. Tired, and confused. But I have strength and stamina that I never possessed before.

WON'T be without my Ionix! — WON’T be without my Ionix!

Where exactly is my real life?

Is it on the cell phone asking the PA why the thyroid levels aren’t making a move to improve? I hope not. Because I don’t like the numbers and they don’t like my questions. Something will have to give.

Is it making the phone calls, filing reports, protecting the identity, keeping the house in some semblance of order, grocery shopping till all hours and at all costs?

Probably not.

The good thing about an identity crisis is it forces you to focus. It forces you to stop and think about who you are, and what matters to you. It forces you to decide to be deliberate in your thoughts, words and actions.

Initially I spent a good deal of time very angry about the identity thing. It took quite some time to start shaking it off. I am much better now- although not thrilled, I’ve come far.

See my ten year old recently in an interview about Cowden’s Syndrome said to the reporter, “You have a choice, you can be angry or you can DO something.”

Wise words from my preteen.

I am angry. But it won’t control who I am.

Identity theft sucks. It’s mean and it’s wrong, and it’s a time-consuming pain.

Cowden’s Syndrome is flat out horrendous. The follow up appointments are enough to drive you mad. If you let them.

Life seems to be tossing boulders.

Maybe my identity is “boulder catcher,” so I can put them gently down.

Or “magician” so I can turn them into something more gentle and flowery.

I know who I am.

And I can not, and will not be defined by the obstacles in my path.

I will not remain a ‘Victim” of identity theft – or anything.

I have “Cowden’s Syndrome” but I will not let it have me.

I am a mom.

I am a wife.

I am a sister.

I am a daughter, and a granddaughter, and an aunt, and a niece, and a cousin.

I am a friend.

I am a teacher.

I am a student of life.

I am a Christian.

I love.

I laugh.

I cry.

I hurt.

I heal.

I try my best.

I try again.

I forgive.

I am forgiven.

Identity Crisis – Over…

I think!

Honored!

Published on April 4, 2014April 4, 2014 by beatingcowdens4 Comments

The video is a little tough at points – but you get the idea.

Side by side with my girl!! LOVE THIS KID!

“A Friend in Borough Hall”

Published on March 28, 2014 by beatingcowdens7 Comments

Meghan received a special invitation a few weeks back. She kept quiet about it – even though she was bursting at the seems.

On February 27th, as we were preparing for Rare Disease Day, Meghan met and shared her story with Borough President James Oddo. They hit it off instantly, and spoke like old friends for quite some time before he broke away to introduce the “Readers are Leaders” Campaign to our school.

More about their meeting here:

https://beatingcowdens.com/2014/02/27/rare-disease-day-2014-through-meghans-eyes/

Well after their extended conversation, the Borough President gave Meghan his Email address and reminded her she had a “friend in Borough Hall.”

They exchanged Emails at least once, and Meghan was THRILLED to receive an invitation to sit with the Borough President AT Borough Hall – 4PM, March 28th.

And the make the whole thing even more exciting, her efforts on advocacy and awareness and fundraising earned her the nomination for NY1 “Staten Islander of the Week.” (More on that segment which will air next Friday to follow.)

We arrived early, a rarity for us, but this was a REALLY big deal. Meghan had carefully selected a few gifts for the Borough President which were tucked in my bag. She proudly donned her “previvor” tee, and we sat anxiously in the comfortable waiting room.

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

We were given a tour of the basement and first floors, and showered with some gifts by “AJ.” A giant help, and a generally nice guy.

Meghan and "AJ" our helpful tour guide! — Meghan and “AJ” our helpful tour guide!

Then, it was time.

Meghan and I were greeted with hugs by our warm and extremely genuine Borough President. He repeatedly introduced Meghan as his friend. He told stories of how she inspires him. His staff and constituents walked in and out, joined the conversation, and came and went, as if a 10 year old in the office was a normal occurrence. They talked about health and advocacy, about her denim ribbon necklace, and her Cowden’s Syndrome Awareness card. They talked about her surgeries and her medical struggles, but also about reading, and literature, and the healing power of dogs. They have quite a lot in common and my heart sang to watch my 10 year old in the arm chair hold her own with a well-respected politician as if they had been friends for years.

The NY1 interview was comfortable. She speaks clearly, and flashes an award winning smile.

Meghan gave Borough President a rock with the word “courage” in it, after he shared a touching story with her.

He reminded her if she needs anything, she is to contact him directly. And as the year goes on as she thinks of new ways to spread the word about Rare Diseases, he will help in any way he can.

Her eyes brightened. Her goals got larger.

“You can be angry, or you can DO something, So I decided to DO something,” she told the reporter.

And she did.

And she will.

Watch out world.