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Rare. Invisible. Real.

Published on August 5, 2013 by beatingcowdens4 Comments

Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.

Most people, even most doctors, understandably, have never heard of it before.

With an occurrence of 1 in 200,000 that is not a surprise.

There is always hope... — There is always hope…

What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂

We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.

We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.

We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.

He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.

With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.

She almost leaped up and cheered.

August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.

That’s how you know a kid is at her wits end. When surgery is an exciting option.

He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)

He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.

All it takes is someone who “Gets it.”

We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.

She looks fine, why can’t she walk? She must be lazy.

She is complaining again? Attention seeking,

So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.

Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.

I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”

She is my heart and soul, my sunshine. She deserves nothing less.

We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.

Mother, Wife, Teacher, Advocate

Published on June 3, 2013June 4, 2013 by beatingcowdens1 Comment

First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.

Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.

By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.

In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.

In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.

I know life is not fair.

I know God is Good.

This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.

I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.

So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome — This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it. I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy. Empowering. Invigorating. Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”

I believe…

Published on May 22, 2013 by beatingcowdensLeave a comment

I believe that there are lessons to be learned from every event in life- especially the ones that don’t turn out like we plan.

I believe in looking for the positives; when plans change without warning, when people disappoint us, when we are thrust onto paths we never wanted to travel and into circles we never knew existed.

I believe that our indoctrination into the world of Rare Diseases came with an invitation to sit back or step forward. We choose to step forward. I believe we will make a difference.

I believe in prayer, and God, and miracles, and angels – and I am not ashamed or embarrassed to say so.

I believe in a God that doesn’t plan for bad things to happen, and who cries with us when they do. I believe that same God will give us the strength to get through the trials and tragedies and all our adversity – if only we ask.

I believe in angels, and speak regularly of my cousin Meghan, our guardian angel. But, I also believe there are armies of angels around us. I am thinking especially today about the father and his 4-year-old daughter that were hit by a fire truck at the same intersection I had my accident in November. Nothing short of angels pulled them both from the car – shaken and banged up, but very much alive.

I believe in miracles-large and small. I have witnessed at least one large one, when my sister’s beautiful niece pulled through a very scary life threatening virus 2 years ago. I believe that miracles happen every day – all around us. But every day I witness miracles, as the flowers bud, and the birds fly, and the children grow.

I believe that adversity can only define us if we let it. Our struggles surely shape us, as we grow each day – but how we handle them affects us, and the people around us. I believe that Cowden’s Syndrome – through my daughter’s diagnosis, saved my life. I believe that PTEN mutations, and broken tumor suppressor genes are scary – but not “hide under the bed” scary. They are more like “you can try that roller coaster you don’t like” scary.

I believe we are allowed to be frustrated and sad and angry and mad. Every single one of us – sometimes. I believe that life can be very, very, very hard. Overwhelming at times. But, I also believe in doing my best to channel that energy, and teaching my daughter to do the same.

I believe in smiling more than frowning. I tell Meghan that she will draw more people to her with a smile on her face. She listens.

I believe that good things can come from unexpected change. New friendships and old ones become more solid when tested. People you never expected can go to bat for you – and look out for you.

I believe in surrounding myself with people who are “real.” Who say what they mean, and mean what they say. I believe in surrounding myself with people who have all types of beliefs, as long as they have a kind heart and are true to themselves.

I believe in speaking out about my own life, and my own experiences; whether they are medical, allergies, emotional, physical because keeping them inside doesn’t help a soul.

I believe writing helps me channel my own energy into a productive outlet. I believe I will spend every day on this earth in some way thinking, addressing, or working through a medical issue for Meghan or I. I believe – if I stay focused it will not consume me. (Although from time to time I may need some help!)

I believe that people who are only in this life to gossip and spread lies and false information are toxic.

I have made a pact to rid my life of toxins. I believe with a lot of determination it can be done!

Changes – big small, and in between

Published on March 31, 2013 by beatingcowdensLeave a comment

All sorts of changes… and today on Easter, one of the most significant.

My Mom said to me many times when I was a teen, that I would do more changing in my 20s than I ever would in my teens. She was absolutely right.

I guess she didn’t want to overwhelm me, because she never mentioned the volume of changes to take place in your 30s.

You grow up sure. You have strong opinions. And slowly… they evolve.

I’d like to say the values I was taught as a youth are still at my core, but my expression of those values has changed over time.

And, while all that was taking place – I managed to meet the love of my life.

Sometime after we married we purchased a true “handyman special,” which we are still polishing up 13 years later.

Then there was this beautiful little girl – rocking our worlds from the very beginning. NICU, colic unceasing, OT,PT, Speech, hospitalizations, chronic viruses, tests, doctors, surgeries – and eventually Cowden’s Syndrome.

She grew into a beautiful young lady – despite the odds stacked against her. Her very existence changed my long standing beliefs on modern medicine, and strengthened my faith in God every step of the way.

My family unit is so strong. We are incredibly blessed to hold each other’s hands through the twists and turns and changes life has in store.

Today was a big one.

On this, Easter Sunday, the Celebration of the Resurrection of our Lord, my family stood in front of the Moravian church and professed our intention to become members of their community.

My history, my heritage, my core, was developed as a Lutheran. My heart is now Moravian.

And their motto, “In essentials unity, In non-essentials liberty, In all things LOVE,” speaks to my soul.

We make decisions every day – guided by the power of the Holy Spirit, with faith that we are moving in the direction intended for us.

The fact we now attend worship as a family of THREE, leads me to be sure we are on the right path.

My 30s have sure been a trip. I have only a few more months left and I wonder what else is in store. But heck, then there are the 40s to look forward to. One day my mom will get a few minutes to sit still, and I’ll grab a bottle of wine and ask her all about them.

Transitions

Published on March 28, 2013 by beatingcowdens2 Comments

Transitions.

It seems they are happening all the time, probably for everyone, but this week we are really feeling them.

When the week started and I loosely reviewed our schedule for the week Meghan was flat out disgusted at the number of appointments we had. She is tired of doctors. I can’t blame her. So am I.

Watch this. Scan that. Come back and see me about that… UGH.

Transitions.

So when she asked me to stop making every vacation full of appointments, I tried to explain to her that with two people with “Cowden’s Syndrome,” and a whole pile of “every 6 month” appointments, it is almost impossible. And then when I looked at the tears in her eyes I promised to try. “I just want a little time to be bored!” So I got a jump on our summer appointments. So far I scheduled 12 from June 27 to July 16. I have used only 6 days to do it. There is one day with 4 appointments, two days with 2, and the other 4 each have their own days. Now, as long as no one looks for any follow ups… maybe we can plan to have a somewhat normal summer. At least I can dream

Transitions.

She is also tired of homework. Even from teachers with the best of all intentions. She is tired of the stress of the upcoming State exams, even as I work to downplay it. She was so excited this week when I told her she could read whatever she wanted – whenever she wanted – without needing to write a summary. You would have thought I gave her candy. She used to love everything about school. Now the best I get from her is that she likes her teachers. What are we doing to these kids?

Transitions.

Her thumb still hurts. Injured at dance on Monday. Its been 3 days. Seems like it is going to linger. It isn’t – or doesn’t seem to be broken, but she is done dancing. She told me yesterday. She just wants to get through the recital.

Transitions. Things are ever changing.

First it was soccer – too tough on her body. Now its dance. Sometimes she can hurt herself just walking up the steps. What next?

Transitions.

No more PT in school. She doesn’t need it. Or so they say right now. We will double check just to be sure. But there is lots of PT going on. Strengthening that body. Preparing her to swim like the fish she wants to be. More testing in school when we return. Just to make sure she is getting everything she needs. Nothing more. Nothing less.

Transitions.

Holy Week services at a new church. Sunday we become members. Warmly welcomed – attending as a family. Mixed emotions that always lead to joy and confidence at the power of the Holy Spirit in our lives.

Transitions.

Our lives are full of transitions. Like the lenses on Meghan’s glasses – changing with the environment and the circumstances. We are growing together. Learning our roles. Fighting not to allow Cowden’s Syndrome to define us, but rather to find where it fits into who we are as people. We are working on our health, and our own maintenance appointments. We are learning about the effects of the syndrome, and discovering how much is not yet known.

We are finding our new roles, as people charged to raise awareness, and to spread the word.

We are figuring out where we belong. In school. In sports. In extracurricular activities. In religion. On our lives.

Big changes all around. God’s plan unfolding. Eyes and ears and heart wide open.

Transitions…

Happy Birthday to my boobs!

Published on March 4, 2013March 4, 2013 by beatingcowdens12 Comments

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…

My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.

Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.

And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.

She can keep her award... — She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.

I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.

And what a year it has been.

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!

HAPPY BIRTHDAY TO MY BOOBS!

Listening while distracted

Published on February 17, 2013February 17, 2013 by beatingcowdens2 Comments

You know the rules and the laws on driving while distracted. Hands free cell phone devices, watch the road.. etc. etc.

But, what about listening while distracted?

The sermon in church focused on this last week, and honestly, 8 days later it is still on my mind. A personal challenge to me is to stop listening while distracted.

This is not an easy task. There are precious few people brave enough to venture inside my mind. It is quite a mess. Once you sort through all the noise, its hard to find focus.

The list of thoughts on any given day could include, but are not limited to…

What appointment to we have today? How many? What will the wait time be? When is the next one?

Will we get bad news, or just a 6 month return ticket?

How is Meghan feeling, what is her pain like?

Why does she hurt so badly, and how come no one can figure it out?

Will she feel well enough to participate in her after school activity?

How do we balance school with life? How do we get all the homework and projects done amidst her chronic health issues?

What about her IEP?

Do we keep the para next year? Do I need an advocate to help me? Have any of these people got any CLUE about Cowden’s?

What about the bills? I know we CAN pay them, but there are quite a few. How many phone calls do I need to make to be sure that they are all done right? When will I make the phone calls?

How much will the heat cost this cycle?

Will we need a new roof this year?

Did I update the EZPass account fo the new car after the accident?

What groceries do we need and WHEN do I have to go?

How are Grandma and Pop? Really?

Will the article for Rare Disease Day represent us? What about the ribbons? Will they be distributed properly? Will the kids – and adults benefit from it? What if Meghan has to speak at her school? Will she know what to say?

Why is there so much homeowork all the time?

How am I going to finish this math series with her while studying for Social Studies?

Does any of that TRULY matter for 6th grade, or will they just realize I have a pretty smart kid?

When is the FUN supposed to start?

…. AND I COULD GO ON AND ON AND ON AND ON…

So, with that many thoughts running through my head (and sometimes more,) how can I ever be an active listener to ANYONE?

Meghan and I are best buddies. She is a great kid. But we do butt heads sometimes.

I have to wonder if its because inside that 75 pound 4 foot 10 body, she also is listening while distracted.

Tonight we will stop.

We will focus.

We will look at each other.

We will listen carefully.

Maybe we will actually hear each other if we eliminate some distractions.

Her father is very good at clearing his mind – eliminating distractions. Meghan and I – not so much.

But how can I hear what anyone is saying if I don’t LISTEN?

I see it all the time in this technology age. Parents on cell phones, ignoring their kids. Kids pleading for attention, and to be heard.

I am no better if I let the distractions of my mind get in the way of my conversations with my family.

When I ask God to listen, He does. When I listen carefully, He speaks. This I know.

Life is way too short to miss out on what is right in front of me.

I am working on clearing my head and avoiding “Listening while distracted.”

Anxiety- an after effect, or a symptom?

Published on February 16, 2013February 16, 2013 by beatingcowdens8 Comments

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too. I love to read for myself. The experiments are done on mice. I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.) But, among other symptoms the mice in their mazes did show marked increase in anxiety. Although. I have to imagine if I was a mouse in a maze I might get nervous too…

Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things. Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s? Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights. Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational. I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.

What I have on my side is that I was raised to keep on keeping on. Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going. So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me. And, I know the “nature vs. nurture” reasons to explan it.

But I do know that my daughter suffers too. Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety. She is a worrier, “just like her mother” they say. Yep. Maybe she is like me because of genetics, or my example. I can’t really know for sure.

So what to do?

For me, the first step is just acceptance.

I am a worrier.

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet. I am still working on this one. I am thinking I like to write – so maybe that will help some. I would like to get a few minutes to myself now and again. I used to love to walk. Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side. Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome. I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in. Parents would do anything to protect thier children. How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system. I am confident that if we are vigilant, the Cowden’s won’t “get us.”

Stay organized. Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up. It will just keep coming.

Stay ahead of the school projects. You never can tell where tomorrow is going to land us.

Laugh. Often. It is deeply good not only for the anxiety, but also for the soul.

Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can. I find that NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety? Is it hard wired into who I am as a person? Is Meghan destined to be forever wondering and worrying? Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety?

It really doen’t matter because it is here. It is part of me, and to la large extent – us. I doubt it is going anywhere. I think its just my job to control the beast the best way I can, one day at a time.

There are just no words

Published on February 8, 2013 by beatingcowdens3 Comments

Tonight it’s not about us.

No matter how hard I try. No matter how much I trust. No matter how much I pray. There will be some things I will never understand. Ever.

Today a generally healthy 11-year-old boy, a 6th grader from the neighborhood died. A few days ago he stopped breathing, and today he is gone.

The details leading to the tragedy just don’t even matter, as much as the fact that it happened at all.

When I began teaching, his mom taught with us. It wasn’t long before she would take childcare leave to build her family of three. We were not close friends, but colleagues still the same, and close enough that I am absolutely sickened by the loss she and her family are enduring.

Years later the children would come, first through my school, then another local elementary school. The two boys are in Junior High. The 8th grader, the oldest, is just two years ahead of the little brother who passed. Their sister is a 3rd grader.

The family is just like any of ours. The mom was a teacher, dad a police officer. They were the “regular” family.

This is the stuff nightmares are made from.

Even though we live in a “big city,” our borough is a small town. There is so much interconnection in this area it seems everyone knows someone.

I was not “friends” with the family. We chatted when we saw each other, but our kids didn’t play together. We weren’t “close.” Yet still I am heartsick.

I know families who have lost children. I know mothers who continue to function after burying their babies, and fathers who get up and one day go back to work. I am in awe of their strength. I can not imagine the depths to which the loss of a child changes you.

And we seem to hear of it all the time. There are tragedies, school shootings, traffic accidents, and the like. There is cancer and its far-reaching effects. There are countless rare diseases that I learn more about each day, that rob parents of their children way too soon.

Chronic illness is not fun. It can be downright difficult to bear at times. But tonight again I will thank God for Cowden’s Syndrome, because despite the headaches and trauma it can cause us, it is a blessing. We have a warning system. We have constant screenings that will likely protect us from the ominous cancers looking to attack. We are blessed.

I do not by any means think that any type of loss is easy to bear.

The loss of my cousin shaped my existence as a person, but even I never fully recovered. I still pray for her parents and her sister.

I was in the 6th grade when a friend from my church was hit by a car and killed on the school bus stop. No criminal charges. Just regular kids playing. And then they weren’t. I remember the whole experience vividly 30 years later.

A few weeks ago I stood by the side of a work associate whose 39-year-old daughter had died of cancer. No words.

One of these parents told me there is a reason there is no word to describe a parent who has lost a child. The grief can not be contained in words.

I just can not for even a moment imagine the shock and trauma when you put your healthy 11 year old child to bed, and he doesn’t get up.

Tonight my heart is with the family. The mom and dad, the brother and sister, as well as all the extended family and close friends whose lives are forever altered.

I will pray that God holds them all so tightly, and that He binds them close together, and showers them with His love.

There are just no words.

Dead Poets Society

Published on February 3, 2013 by beatingcowdens3 Comments

The church bulletin this morning had these words from Henry David Thoreau…

Poignant. Especially as I sat, in my “new” church, watching my daughter participate actively in a “Family Friendly” service. They do those about every 6 weeks, in cycles, and I really enjoy them. This one, this week, focused on growing up.

So, as Meghan stood singing, in a small, multi age group, I thought about the backdrop behind her. Initially it still felt “wrong” to me. I somehow expected her to be in front of the church I grew up in; with the same smile, and the same voice. I imagined the picture behind the altar that became ingrained in my subconscious as a youth, and the striking stained glass windows. I was looking for the familiarity of my childhood, even as I myself, and with my family, am still, at almost 40, “growing up.”

Things did not work out. After 38 years that was initially so hard to swallow. I was angry. I was sad. I was generally heartbroken. But maybe it was time. Time for me to “grow.”

For years I prayed for a place where my family could worship together. We have spent 6 months now, almost every week, as a family of three in the pew. The motto of the Moravian Church, “In essentials unity, in non-essentials liberty, in all things love,” speaks to my soul.

I looked at the cross, and the Moravian Star, and I smiled. The backdrop has changed, but not the meaning. “It’s not what you look at that matters, it’s what you see.” She was standing in a different place, but there was the same love, and acceptance I have come to equate with my faith.

When I got home I couldn’t shake the images from “Dead Poets Society.” Quotes from my all-time favorite movie from 1989, with my all time favorite actor, Robin Williams flooded my head.

Thoreau, along with other famous poets wisdom peppered this movie with all the perspective I needed as I high school student. And, now as I “grow up,” decades later, the meaning of the words changes a bit, but the movie “grows up” with me.

And the reality that…

The scene that spoke to the teacher and human in me, as Robin Williams hopped onto the desk…

The reminders that we are to always look at things from a different perspective.

These are the words that shaped my youth. These are the words that give me strength – decades later. I love words, especially straightforward ones that speak to my soul.

In 1989 I thought life was complicated. I had no idea that just shy of 25 years later I would be facing a rare genetic disease like Cowden’s Syndrome, with all its risks, and perils. I could not imagine in my worst nightmares that my beautiful girl would be facing it too. And yet, these words, that became part of me – help give me the strength to endure.

My faith is strong. My understanding of others, and the need to always look at things from a different perspective is a large part of how I define myself.

Growing up. Changing. Doesn’t mean ending, but rather new beginnings.

It may be a while before Meghan is old enough – or even interested in my favorite movie, but I will teach her – one step at a time.