Who is in charge?

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.

books

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.

energizer bunny

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! :-))

Me and my girl!
Me and my girl!

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….

run-clock

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.

test prep

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.

Isagenix

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.

calendar

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.

blood-testing

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.

God's got this

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

 

GOOD people bring out the GOOD in other people

Being a Mom is challenging, but rewarding.

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

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

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

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

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

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

good people

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

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

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

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

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

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

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

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

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

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

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

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

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

boston-police

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

All kinds of tests

So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.

I have absolutely no idea if her assessment is accurate.  I am only grateful that for one afternoon, her anxiety was lower.

questions

Last night before she went to bed, we spoke a lot about testing, and my expectations for her.

As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.

So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.

Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.”  This followed by a cheery, “Chill out – You got this!”

As she lay her head down, last night, and tonight, she repeated those words to me.

There really are so many teachers who “get it.”  The kids are so much more than any number on a piece of paper.

It is such a challenge being on the parent end of things.

test prep

But, at the end of the day, these aren’t the tests that matter to me.   Not really.

On Monday the 1st of April there were 13 vials of blood.  On Saturday the 6th there were 15 more.

This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.

These are the tests that keep me up at night.

These are the tests she has no control over.

These are the tests whose scores really do matter.

Hormones, Thyroid, neurotransmitters, immune function…etc… etc…

The results for the school tests won’t be in until August.

Some time in the next week I will have to deal with this latest lab panel, and determine if we have any new answers, or just more questions.

Perspective is a definite reality check sometimes.

She will go to school and do her best, and I know regardless – she is already successful.

I only wish I could hold onto that same confidence, as I await these lab tests.

blood-testing

The Circle of Three

circle of three

My heart and soul.  My circle of strength.

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

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

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

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

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

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

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

watch me

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

He makes us laugh.  He holds our hands.

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

We are three but we are one.

Now, near or far we remain connected.

There are no “superpowers” in these denim ribbons…

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

Grateful for my circle of three!
Grateful for my circle of three!

Our Digital Footprint

Tomorrow Felix and I will be married 13 years.  While in some ways 13 years seems like a long time – in other ways I sparsely remember that there was life before I married my best friend.

And as compatible as we are, anyone who knows us is aware that we are as different as day and night in so many ways.  One of those ways is the internet.

I facebook.  I blog.  I Email.  I communicate with people I know well, and people I have never met.  He doesn’t.  He communicates live and in person (and sometimes on the phone) with the small circle of people he loves.

In the world of digital footprints, I have to imagine that mine and Meghan’s are substantially larger than that of my husband.  And with that knowledge comes the need to sometimes remind myself of what I already know – there is no privacy on the internet.

digital footprint 3

We live in a suburb of a big city – unique in the fact that 6 degrees of separation can easily be played – and usually can serve to connect “natives” in far less than 6 tries.

That means, that every post, every writing, every thought, every sentiment that I choose to make public will be read by people who know me, people don’t, people who like me, and people who don’t.

I have begun to “clean up” and clean out my private facebook account.  Life is about balance.  My husband wonders why I want to stay connected to people I don’t see or even know.  Well, many of them hold a special place in my heart – whatever the reason. Many are very dear to me.  But, some I really wouldn’t know if I passed them on the street.  Do they care when my girl is at swim practice? Or that my anniversary is tomorrow? Or that we have a new church?  Or a new school?  The answer truly is – probably not.

So how does all this connect to Beating Cowden’s?

Well, here’s how I see it.  I started this blog to raise awareness of a Rare Disease. – one that has changed my life and that of my daughter, and my whole family.  I wanted to get the word out that this 1 in 200,000 disorder was wreaking havoc on our lives, and we are working to control it.

Then, as I became more educated, I wanted to expose people to the world of Rare Diseases.  The reality that we are among the lucky ones has been a potent lesson.

I want people to know that Rare Diseases are not always visible.  That even though we don’t “look sick,” the suffering is part of daily life.

These realities have made some people uncomfortable, and have brought some others closer to us.  Lessons learned.  Life changes.

digital footprint 2

So when I blog, I try to focus on my own experiences, but without fail they are intertwined with Meghan’s.  What can I do to protect her?  Not too much.

She wants this blog to continue.  She is proud to be part of an awareness raising effort.  So, I have given her editing privileges  and the constant reminder that once I hit “publish” I can not take it back.

I think in some ways this level of awareness will help her – when she takes more control of her own digital footprint.

“Beating Cowden’s” is about our daily struggles – sometimes with doctors, our bodies, medical tests, surgeries, and just people in general.

I have thought so much about privacy, and how it is almost a work of fiction these days. I have worried about hurting people’s feelings on my private page – but I am starting to get over it.

If you make a conscious choice to put yourself out there – there has to be a purpose.  And, you have to be willing to stand behind every word you type.

There is no privacy on the internet.

digital footprint

Beating Cowden’s will continue as a means to raise awareness of a virtually unheard of Rare Disease.

My own personal Facebook page will take a bit of an overhaul in the next few weeks.

Don’t take offense.

I am just getting our feet ready for spring!

Maybe…

leap of faith

And that is what we took.

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

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

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

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

I am eternally grateful.

forrest-gump-320x180

But there is a time for moving on.

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

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

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

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

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

stress pain tension circle

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

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

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

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

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

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

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

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

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

Maybe…

1337577_wine_swirl

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

 

No more “Toxic” environments

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

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

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

The information below is from the Isagenix website.

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

Nutritional Cleansing unlocks the miracle of the human body


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

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

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

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

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

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

Father Daughter Dance November 2011
Father Daughter Dance November 2011
Father Daughter Dance January 2013
Father Daughter Dance January 2013

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

Here’s how I see it.

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

Essential to the program is the release of toxins.

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

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

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

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

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

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

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

ichoose

This week we changed churches and schools.

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

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

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

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

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