life – Page 18 – beatingcowdens

Keeping It Together

Published on September 2, 2013September 2, 2013 by beatingcowdensLeave a comment

When it’s all about to fall apart, what is a mother to do to hold it all together?

Anything she possibly can!

Months ago I wrote a blog about how Cowden’s Syndrome changed… my phone. And its true. I could not manage the appointments and chronic craziness without Siri, my BFF.

And, when the navigation in my car quits, which it often does, Siri is the one to get me home.

So how did Cowden’s Syndrome change my entire way of eating?

After our diagnoses in the fall of 2011, my dear husband ate his way through his stress. I can’t blame him. Imminent cancer risks for your young daughter. Thyroid nodules galore. Biopsies every 6 months. Vascular problems. Pain. A wife facing a mastectomy, and subsequently a cancer diagnosis, and a hysterectomy. Tumors on her spleen… and the list goes on.

By November of 2011 he was here.

I had known him since 1997 and had seen his weight fluctuate from attempt after attempt to get the stress eating in check. Being a big attractive guy, he was able to disguise his weight very well for most of the “ups.” But I knew this level of yo-yo dieting was not good for him. I also knew we needed him, strong and by our sides.

My husband is soft-spoken, and talks to very few people by his own choosing. I had to get his permission before I hit “publish” on this one. But if you listen carefully when he does talk, he always has valuable advice and a story to tell.

Some time over the winter of 2011, into early 2012… maybe it was right after my double mastectomy in March of 2012, he had a revelation. While sitting uncomfortably on the couch one night, he tried to move a pillow out of his way. Only to realize it was his waist.

A month after that during a physical he left the doctor’s office with prescriptions for his high triglycerides, his high blood pressure and his high cholesterol. Darned if I was going to put MORE junk in his body we went to a trusted cardiologist. He told Felix there was nothing wrong with him that losing 50 pounds wouldn’t fix. He gave him a script for a prescription strength fish oil. We tossed the other scripts in the trash.

That was the moment of truth, and we went on a hunt together for what would help.

Fortune, and opportunity, and the grace of God had placed a new friend in our lives that year. She was a blessing to Meghan, but subsequently to all of us. She had begun her Isagenix journey that year and was seeing incredible success.

For years I knew that diet and nutrition were the key to so many things. Meghan never even spoke until we removed gluten, dairy and soy from her diet at the age of 2. We saw her developmental delays resolve as her stomach quieted. We moved mountains to feed this kid right, and provide her with nutritional supplementation of only the highest quality. As I listened to my new friend describe Isagenix, I heard words I already knew to be true. This company had everything I knew about nutrition – ready to help my husband.

So we started him on the “30 Day Cleansing and Fat Burning System.” Within days he reported feeling better. He was expressing clarity of mind. He had energy. He had less of a desire to eat junk. His palate was changing and he was fighting me for the rest of the vegetables at dinner.

I was amazed, grateful, and impressed. But not surprised. It all made sense. Put maple syrup in your car’s engine and you ruin it. Run it of pure gasoline, change the oil regularly, and you are golden. Why would we treat our bodies any less efficiently?

Over the next 11 months I dutifully adjusted his “autoship” so that the products would arrive at our home ever 29 days. He modified the portions of the program that work for him, and he woke up in August on his 40th birthday 50 pounds lighter than he had been over 18 months before.

For the first time, in the 17 years I have known him, the weight is GONE. RELEASED – not lost. It will NOT be found again.

He tells me this is not a “diet” but a lifestyle change. He will not start his morning without his shake and his ionix vitamin. He will not go more than 3 weeks without a “nutritional cleanse” that is the lifeblood of why this works. (Nutritional Cleansing releases toxins from the body. Without that release of toxins your body begins to hold onto the weight again.)

http://www.isagenix.com/us/en/areyoutoxic.dhtml

After all of this regulating the autoship, and paying monthly for high quality nutrition, some time in May I looked up and realized I was missing a HUGE piece of this.

First of all, I ordered myself some meal bars, a few shakes, and some E+shots. My body, stressed to the max, even though it was thin – needed nutrition badly. I was able to eliminate my diet soda habit – something I had tried to do for years with no success. I can not stomach dyes and junk foods I used to live on. My body just WANTS the real stuff.

Then they came out with a shake that would meet Meghan’s needs.

And then we were three consuming Isagenix, and feeling better each day. What an amazing thing to listen to your ten-year old TELL you when she NEEDS a shake. I am convinced the only reason she can swim the way she does is because she refuels with Isagenix.

So, what does a family benefiting from a product do?

They talk. Finally. After all that I finally got around to telling people of our success. Of the quality of these products. Of the positive life changes.

And people wanted to know more. So I learned more. And I helped them. And they are getting healthy too. What a rewarding feeling.

I have had to contend with the negative folks along the way. The ones who whisper, “That’s a multilevel marketing company..” as if that made it evil?

Yes. Isagenix is a multilevel marketing company. There is no mystery, And no one tried to hide it. There is no one breathing down your neck to sell or share the products, and you are free to purchase and use for as long as you like. We did it for 11 months. But if you share (which is what I learned to do as a small child in school – simply share) and you help others, you get rewarded for that.

Then I signed someone up. And they were happy. And I felt good. And then another, and another.

And before I knew it there was this Visa card on my desk with money on it. Money I had earned from telling our story. Money I can use to do whatever I’d like.

It got easier and easier.

You see people say to me, as I had said to my friend, “I am not a sales person.” Me either. I am sure I couldn’t sell knives, or vacuums, or other random products. What I CAN do is tell the truth. I do it well. My candid honesty ties into my “take me or leave me” philosophy. I have no time for nonsense or drama in my life.

But now I tell people, quite honestly, that I don’t pay for my Isagenix. We eat MORE products than ever, and we eat them for FREE. Now in my 8 years of buying nutritious food, THIS is a new concept.

And I like it.

Isagenix has changed all of our lives in different ways. And we have all benefited. Felix needs to be strong for Meghan and I. And my Cowden’s Syndrome buddy and I, with our tendency towards cancer, tumor growth and a whole host of other problems, need to give our bodies pure nutrition so we have the strength to stay healthy.

We are now, and forever an Isagenix family.

It’s one of the strategies we use to keep it all together.

We can help you too!

“Music, … When it hits you, you feel no pain.”

Published on August 28, 2013August 28, 2013 by beatingcowdens3 Comments

Since Meghan’s surgery last Tuesday, she and her wrapped hand, and foam “Carter’s Block,” have been sleeping in the king size bed with me, while Daddy has slept in the twin in Meghan’s room.

She usually needs a little bit of room, as she isn’t the calmest sleeper, but we knew with the new foam addition, there would be no way the three of us could fit. So, with Meghan came her pillows, and her iPad.

Her iPad has a playlist that she plays through the night when she sleeps. I always knew it was on, but this past week, as life has made sleep a bit elusive, I have gotten opportunity to listen to this 23 minute segment several times. Yesterday I looked up the lyrics, and as usual I was in awe of what she had assembled.

In our house we listen mostly to Contemporary Christian music. We are Christian, yes. But typically the type that tries to spread the love by example rather than with a Bible in your face. That being said, the move to Contemporary Christian music evolved after Meghan became old enough to hear, sing, and understand the lyrics, and the DJs on the radio.

I was, on more than one occasion, appalled at the level of exposure my then 5 or 6 year old child had to things I wanted her sheltered from a bit longer. So, I switched the station. And I kept it there.

Now, don’t misunderstand, She is not bound to listen only to Christian music. She can pretty much listen to whatever she wants. She has an Itunes account and downloads music of her choosing, with our permission. And, there are plenty of afternoons you will hear a good Classic Rock station blaring out our car windows. But, like anything else, my initial changing of the radio station led to conversations. And I like conversations.

Meghan became aware that many of her friends at school were familiar with other musical artists that she had never heard of. So, it became practice that every time she brought home the name of an artist or song, as long as it wasn’t overly offensive – we would buy it. But I loved that our conversations got her looking at lyrics, hearing what she was singing along to, and taking responsibility for her choices.

I know that music is a very personal thing. I will not be the Mom who is in denial, or tries to over regulate. It will lead to rebellion and there is no need. I will talk to my daughter regularly about valuing herself, her body, and other people. We will talk about what lyrics mean. Then, she will, as preteens do – do as she likes.

But for now- the “sleep” selection on her iPad is a powerful collection of 6 Contemporary Christian songs.

The first is “Stronger” by Mandisa that begins…

“Stronger”

Hey, heard you were up all night
Thinking about how your world ain’t right
And you wonder if things will ever get better
And you’re asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don’t hang your head
It’s gonna end
God’s right there
Even if it’s hard to see Him
I promise you that He still cares

http://www.youtube.com/watch?v=emgv-VRtMEU

Then, it moves on to Kutless, “That’s What Faith Can Do”

Anyone can feel the ache
You think it’s more than you can take
But you’re stronger
Stronger than you knowDon’t you give up now
The sun will soon be shining
You gotta face the clouds

To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason
For someone not to tryEverybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright

Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

http://www.youtube.com/watch?v=u1JBSQMkQEo

Followed by “Courageous” by Casting Crowns

Seek justice
Love mercy
Walk humbly with your GodIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handIn the war of the mind
I will make my stand
In the battle of the heart
And the battle of the handWe were made to be courageous
And we’re taking back the fight
We were made to be courageous
And it starts with us tonight

http://www.youtube.com/watch?v=pkM-gDcmJeM

Fourth up is “Blessings” by Laura Story

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we’d have faith to believe’

Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It’s not our home

http://www.youtube.com/watch?v=XQan9L3yXjc

And the last 2 are by a somewhat spunky artist called Francesa Batistelli

“Motion of Mercy”

That’s the motion of mercy
Changing the way and the why we are
That’s the motion of mercy
Moving my heartLiving for the lost
Loving ‘til it hurts
No matter what the cost
Like You loved me first
That’s the motion of mercy

God give me strength to give something for nothing
I wanna be a glimpse of the Kingdom that’s coming soon

http://www.youtube.com/watch?v=Z0N6DMUJK5o

And finally – “This is the Stuff”

I lost my keys in the great unknown
And call me please ’cause I can’t find my phone

This is the stuff that drives me crazy
This is the stuff that’s getting to me lately
In the middle of my little mess
I forget how big I’m blessed
This is the stuff that gets under my skin
But I’ve gotta trust You know exactly what You’re doing
Might not be what I would choose
But this the stuff You use…

…So break me of impatience
Conquer my frustrations
I’ve got a new appreciation
It’s not the end of the world…

http://www.youtube.com/watch?v=Xe4SckesWLE

I know everyone’s taste in music differs greatly, and I do not expect that anyone will listen to all 6 of these. But I encourage you- choose one. Any one that speaks to you.

I have been struggling to get to sleep, but I will miss the soothing repetition of some of the most powerful songs I know when the stitches come out tomorrow. One more night. Then everyone gets back to their own beds!

Raising Awareness – One Card at a Time

Published on August 16, 2013August 16, 2013 by beatingcowdens6 Comments

I am going to brag.

Brace yourself. It might be a long one.

A short time before we headed to Disney, I wrote about taking out Meghan’s push chair for an appointment in Manhattan. She was terribly bothered by the rude stares that greeted us that day.

As a result we talked, a lot. And, like she always does – she comes through those conversations blowing my mind with her introspective maturity.

Don’t misunderstand me. I sometimes worry that my 10 year old is such a deep thinker. I am acutely aware that she has way more on her plate than she should, and she handles with grace and poise a life that would leave many adults weeping under their covers. I wish she told me everything. I know she doesn’t. My heart often breaks for the burdens she carries.

Yet, she is just so amazing.

After we spoke about the rude “starers” she talked about wanting to have a way to let them know about Cowden’s Syndrome. She wanted to raise awareness.

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

So she gave her ideas to Daddy and he created this card. We used the logo from the “Global Genes Project,” an organization that has been dear to Meghan since her diagnosis. http://globalgenes.org/

Meghan wears proudly the denim ribbon created for her by a family friend when she expressed a desire to have a ribbon. something she could wear that would represent her.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!" — A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

She dreams of one day seeing another child wearing this symbol. She wants it to become as common as the “pink ribbon.” Because, there are about 7,000 rare diseases, and 1 in every 10 people is affected by one. Many of these diseases are genetic. As we learn more about other rare diseases, Meghan understands the need for the rare disease community to unite. So little research is done on so many of these diseases that they remain poorly understood and under funded.

As we packed for the trip – Meghan asked if we could print some of the business cards for her to bring to Disney. She wanted to be able to hand them out. She knew people from all over the world visit Disney, so it would be a great place to spread the word. 500 cards later, I made sure she had all the tools she needed.

What happened next was just another example of how easy it is to be proud to be her mother.

Meghan decided that instead of getting an autograph book this year, she would take pictures with the Disney characters with her cards.

She also spontaneously struck up conversations with complete strangers all over the parks. She would approach cast members, wait staff, photographers, and guests. She spoke to people from the US and well beyond.

And every time she spoke my heart smiled.

She is an incredibly articulate young lady. She explained Cowden’s Syndrome through the eyes of a ten year old to almost 200 people.

Some of the most memorable included a man and his wife and their service dog on the bus to Downtown Disney, and a helpful cast member from Puerto Rico outside the fitting room as she tried on her Merida dress, and a Disney Photopass photographer whose genuine hug was so heartwarming.

Those were just a few. She spoke to so many people over the course of our 9 day trip that I have no doubt there is a greater awareness of Cowden’s Syndrome in the world than there was just 2 weeks ago.

She will tell you she is not a public speaker.

She might even try to tell you she is shy.

I will tell you she is flat out amazing, and that she is ~~going to do~~ already doing great things.

This child will make the world more aware – one card, and one conversation at a time.

These are Just a few who learned something new this week!

lori (14)

That Voice

Published on August 11, 2013August 11, 2013 by beatingcowdens4 Comments

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?

Lemons

Published on July 23, 2013July 23, 2013 by beatingcowdens1 Comment

Generally I try to be a pretty positive person. But really I have to say this is getting a bit ridiculous. I am starting to wonder if I am doing something wrong. I mean everything feels like a project, every situation an issue.

Its no small wonder people sometimes tire of talking to me. I tire of telling tales over and over again. Really, I am not a big fan of drama at all.

And yet, as the precious weeks of summer tick by, and one obstacle after another seems to end up in our path – today I did feel like squeezing some of our lemons in a few people’s eyes.

My constant awareness that it could be worse; my attentiveness to the struggles of others is what keeps me grounded, but it may be even more exhausting. The prayers for young babies, and new mothers, the prayers for families who have lost young loved ones to tragedy, the prayers for the young children who are ill, the prayers for my grandmas – all three of them dealing with their own health issues… and the list goes on. I DO know it’s not just us. But sometimes when it seems to be one lemon after another, I get tired of ducking.

I know the saying about lemons, and an old cliche is good now and again…

But sometimes it just doesn’t cut it.

Sometimes lemons are, well – just sour.

My girl has been complaining of her wrist and hand since June 4th. I remember the date very specifically. And it has been a long 7 weeks. The last few weeks of school she could barely write. We tried braces, no brace, resting, ice, heat. Nothing. The pain gets worse. Then the MRI says normal and I want to spit. (Lemon juice in someone’s eye!) Now we wait while the MRI gets reviewed again, and its time to have a surgeon look at what appear to be soft tissue tumors (at least 2 of them) forming on her hand. One has been there since – forever. The other appears to have grown in size in the last 72 hours. I am not surprised they didn’t show up on the MRI.

This is the same child who took 7 sonograms to have her gall bladder diagnosed with “milk of calcium” and after three “negative” sonograms for the obvious mass growing out of her back years ago – the surgeon decided to trust his instincts and ended up removing a sizable lipoma.

This kid breaks all the rules.

And that’s before we even get to the ramifications of the diagnosis of Raynaud’s Syndrome and its implications made off the MRI. ( I guess that means it was … almost normal?)

So tomorrow I will call an orthopedist to check on insurance issues and to see if they will take a look at this kid. (This one comes HIGHLY reccomended! :-))She certainly can’t start 5th grade unable to write, and this can’t go on forever. So, another doctor it is.

It should be easier to get to the doctor after Enterprise picks me up at 10 tomorrow and sets me up with a rental as my relatively NEW car spends one too many days at the “car doctor” who seem unable to fix the problem either.

This is how long I waited on hold – before I hung up the phone and drove there myself…

All this as we clean out the attic to prepare for the new roof to be installed in a couple of weeks, and we wait for the people to call us back about the class action lawsuit that somehow explains the water damage and dry rot in our bay window.

So if I stay stuck on the lemons I may lose perspective, and God knows I need that to get by. Instead of wishing troubles away I pray for the stamina to continue to endure, and endure. Wouldn’t trade my life for anyone’s. But, God give me strength to find the rainbows – even in the lemons.

And as I organize my paperwork – constantly – tonight I write a check to support “Alex’s Lemonade Stand.” And I pray for all the parents faced with cancer in their children. It strikes fear in my core, so I do whatever little I can- knowing all too well we can all be tossed into places we would never venture to on purpose.

And as I reflect on today, I guess it was a success. We did get into our much underused pool for some mother/daughter time.

And when all is said and done, and I have had a few glasses of cider, and I can sit down and regain my perspective – I have a pretty cool kid. This Cowden’s Syndrome thing – it really sucks. But its such a part of us now, that I can’t imagine giving it up. We are not defined by it, but it is a part of who we have become.

So in the interim, for those of us who by bilateral mastectomy have gone from a size C to an A cup – maybe this is a more appropriate way to view those lemons.

Couldn’t hurt. Might help.

Keep laughing. Keep swimming. It’s all we’ve got.

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!”

The Grass is Green!

Published on May 29, 2013May 29, 2013 by beatingcowdens5 Comments

Sounds ridiculously cheesy I know. Sometimes the bad things are just crap. And some days just stink. But, not most of them. Really, if I think about it- just a few days now and then really stink. The rest of them seem to hold within them some lesson, some joy, some laugh, some memory – something that makes my spirit richer than it was before.

Don’t ever delude yourself into thinking things are perfect here. That would be a lie. We have our whiny, cranky, in each other’s way kind of days. But that’s not most of them.

Lots of rotten things happen to everyone. But lots of good things happen too.

Lots of rotten things happen when you have Cowden’s Syndrome. Sometimes the key lies in looking at things from a different perspective.

Every moment. Every meeting. Every diagnosis. Every doctor’s appointment. Every report read. Every bill fought for. Every new teacher. Every new friend. Every old friendship renewed. Every miracle. Every ordinary moment. They all bring us to where we are.

Maybe I have watched too much sci-fi with my husband, but to change any one thing, any event in our lives, could alter the course of our lives.

I won’t spend time wishing things away- certainly not the good, and definitely not the bad.

Sometimes the lessons hurt. Sometimes they make us cry. Sometimes, like when we say goodbye to dancing school, and all its emotional joy, coupled with insufferable physical pain, we get a little sad.

Then we say, if it wasn’t for dance, we wouldn’t have learned love of the stage. If it weren’t for dance we wouldn’t have seen a growth in confidence, and an ability to manage a growing young body. Losing dance is hard…

But if there wasn’t Cowden’s, and chronic pain, and an inability to deal with impact – would there be swimming?

Private lessons at a local college start Saturday. Regular practice begins the next month. She salivates when she gets near a pool. She just wants to get better and better.

New sport, new school, new friends, and old ones too. Same old pain. Same nasty viruses. Some things change, and some remain the same.

Sometimes I wish (quietly to myself) that life could be a little bit easier. Then I look at my daughter, and my husband, and my dogs, and my house, and I think – things are just fine right here.

We have each other – for the ups and downs- for the ins and outs.

They say if everyone had a few moments with everyone else’s problems, they would fight to grab their own back.

We are getting by. We are “beating cowden’s”

The grass is green enough right here.

“Count Your Many Blessings…”

Published on May 12, 2013 by beatingcowdensLeave a comment

“Count your many blessings, count them one by one. Count your many blessings see what God has done…”

The song has been stuck in my head all afternoon. I remember as a youth singing the song in church. I must have sung it plenty of times, because the lyrics are stuck in my subconscious. And, as things int he subconscious tend to do – they often pop out at just the right time.

A busy weekend full of blessings.

Saturday we celebrated the anniversary of my Mom and StepDad. 25 years is quite a milestone, and we were so thrilled to celebrate with family and a few dear friends.

What a blessing that among the guests we had Grandma and Pop, and Grandma Hansen. Although we missed Grandpa Hansen we were so thrilled to count our blessings together.

Mother’s Day morning I woke alongside my awesome husband. I was greeted by my beautiful daughter and lots of hugs and kisses. Some hand made cards, and a few nice gifts and we were off to church.

We traveled after church. to visit with Felix’s Mom and Dad. We endured the (It could have been worse) Belt Parkway and spent some time with his parents, sister and nephew. Felix’s Grandma passed away just a few short months ago, so this day was especially difficult for his Mom who was very close to her Mom.

On the return trip we make a quick visit to my mom and got to see the grandparents again. How many 39 year olds can kiss a few Grandmothers on Mother’s Day?

How lucky am I to hug my Mother – a feisty lovable survivor of cancer and life? How blessed am I to have her in my life -by my side?

As we headed home, absolutely exhausted. That song started in my head.

“Count your many blessings…”

I thought of the friends I have who are desperate to be mothers. The friends who had to struggle to have the children they have. The friends who have miscarried, and friends whose young children live in Heaven. I thought about friends who miss their Moms, whose hearts ache every day at the loss – whether it was last week or a decade or more ago. I thought about my friends who never got the years with their grandparents that I have had.

Shame on me for feeling tired. How lucky am I to need a list to shop for Mother’s Day Cards? How fortunate am I to have so much visiting to do that I can sparsely fit it all in?

One might think Mother’s Day is for relaxing – or spending quiet time alone. But, I am aware that those years will come all too soon. For now – let me run, and visit, and hug and chat. Let me relish the moments in a life that is fleeting.

I kissed my little girl tonight. I held her almost 5 foot frame and cuddled her as best I could.

She won’t be in school tomorrow. A rampant virus, and her rotten immune system are not a good match. She won’t plant with her science class the way she likes to. She won’t play in the yard with her friends.

Tomorrow will be yet another day in the complicated life of a little girl with a multifaceted Rare Disease. A day of differences and disappointments. A day she will handle with the same graceful smile she uses for every other aspect of her life.

My daughter is the one who reminds me to count my blessings.

And, oh do I have many!

Who is in charge?

Published on April 28, 2013 by beatingcowdens1 Comment

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

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

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

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

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

Can I read? Yes…of course.

Can I watch some TV? Sure.

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

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

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

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

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

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

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

Meghan switched schools.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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