Counting… Our 400th Post!

“Count your many blessings, name them one by one…”  Grandma used to sing years ago when we would complain about nonsense.  She was a little tough sometimes my Grandma, and maybe that’s where I got it from.  But, many times she was right, whether we listened or not.  (Maybe that’s where I got that from too? ;-))

Count your Blessings 1-03

I like numbers.  They are logical.  They are what they are.  In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog.  While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been.  It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis.  Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out.  Slowly.


I might have wanted to celebrate this post.  I might have wanted to make it really special.  But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter.  Today, I listened as I always do, reciting the directions in my mind before she spoke.  Really my only interest was the time.  The rest is routine.  I want to stop counting.  I want to just go with it.  I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important.  And you become less important.  And that is a gift, denied to many, cherished and appreciated.


Somehow though,  if I stop counting for her, it makes her struggle feel less valid.  The numbers give her strength.  A badge of courage.  Something concrete in this world of abstract.

My post last night was about “Patience”

And as I poked around the blog this morning I was taken back years, through so many similar posts.

Their similarities are uncanny.  I guess the story doesn’t change much.  Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable.  Nothing has changed.  Nothing will change.  And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17.  9:15 arrival.  As usual, prayers always appreciated.

#beatingcowdens 400th post!


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

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.

no sleep

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…


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
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

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

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
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
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…
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!
music no pain

“Count Your Many Blessings…”

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.

rare supermoms


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.

Mom and Ken anniversary


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!



Disney World 2011

Meghan and I have a lot of “deep” conversations.  More than you might expect an 8 (almost 9) year old to be capable of.

Today she was wondering why we have to have Cowden’s Syndrome.  Why is our PTEN gene broken?

Well, I said to her, everyone has something to deal with – and this is what we’ve got.

She thought for a minute, trying to figure it out herself, and then said, “What do you mean?”

“No matter where you go in the world, in every city and town, in every street, in every country, on every continent – EVERYONE is dealing with SOMETHING.”

I told her there is a saying that goes around “If everyone could toss all their troubles into a circle, and choose which ones we wanted, we would likely take our own back.”

Almost indignant she said,, “Why would I take back Cowden’s Syndrome? It stinks.”

Yep, but would you trade it for the family that doesn’t have enough money to buy food, the family that lost their house to a fire, the family where the parents have lost their jobs, the family where the parents aren’t in love, or are divorced, the child who can’t have any pets because her sisters are allergic, the family whose Mom or Dad died, fighting for the freedoms we celebrate today?”

It doesn’t take much for her to “get it.”  That’s why I love her so much.

Christmas 2011

“There are kids without dogs,” she said.  “Lots of them.  And I really love Allie and Lucky.

There are kids without their own room, or even their own house.

There are kids whose Moms and Dads don’t love each other.

Some kids have other diseases where they have to go to the hospital even more than me.

Ist Holy Communion 2011, with GiGi and Pop

Some kids don’t get to know their grandparents or their great- grandparents, like I do.

I get it Mom, I think I do.  But, still it seems like some people have no worries, no problems at all.”

“Those are the people I worry most about Meghan.  Those are usually the people whose hearts hurt.  They are often alone, or insecure, or feeling unloved.  Trust me, EVERYONE has something.”


“I guess you were right Mom.  I don’t like having Cowden’s Syndrome… but I wouldn’t trade our life for anyone’s.”

I am glad – me either.  Our “thing” to handle is medical, and we will get through it – together. Tonight we celebrate our country, and the freedoms it was founded on.  We celebrate the soldiers who fought for our freedoms, and the ones that continue to fight. It is those freedoms that allow us the ability to battle whatever “thing” plagues our own life. 

 We are all struggling, and we are all lucky.”