There's a song in every silence...

...seeking word and melody
There's a dawn in every darkness bringing hope to you and me
From the past will come the future, what it holds a mystery
Unrevealed until its season, something God alone can see.
-Natalee Sleeth, Hymn of Promise


Hey y'all.

It's been a very long time.  So long, in fact, that I really don't know where to start.  There's no instruction manual on how to re-start a blog after many months of silence.  (Yes, I googled.)  During the initial week of outdoor swim practice, I was always the knobby-kneed scrawny kid who took 10 minutes to get all the way wet, shivering through the first half of the workout.  But there's no gentle, toe-in-first warm up here in blog-land - either you write something or you don't.  Here goes writing.

The truth is that it has been an intentional silence.  I have always poured my soul out here, and I simply haven't been willing to be quite that vulnerable in such a public space.  I could pretend that I'm doing fine and post funny stories about my messy house, our epic home improvement failures and adorable yet exasperating kids - and it would all be true.  It would be true in the way that what we post on facebook is true, but is a carefully crafted truth.  But that would not be authentic and real, and somehow that feels wrong here.  Or I could be depressingly honest, and that wouldn't be any fun to read, nor would it be much fun to write.  Instead I chose the silence.

But I've missed writing.  There is a song in every silence.



I feel compelled to write; I want to create something.  I want to find the perfect song that touches where my life is at a given moment.  I want to use the perfect picture to illustrate my story, my kids' stories.  I have more seriously considered writing a book, and maybe someday I will actually do it.  (It's tentatively titled "You Picked Your Nose With Your Painty Finger and Now You Have Paint Up Your Nose."  Think an editor will go for that?  If only it would fit on the spine...)  But until I figure out the whole agent/manuscript/editor/publisher gig, I will get back to writing here.  It's a start.

The first step is always the hardest.

But mostly, I missed y'all.

From this valley...

...They say you are going
We will miss your bright eyes and sweet smile
For I know you are taking the sunshine
That has brightened our path for a while

Come and sit by my side if you love me
Do not hasten to bid me adieu
Just remember the Red River Valley
And the girl who has loved you so true.
 -Red River Valley, traditional folk song


This post has been rolling around in my head (and my slowly-breaking heart) for a while now. Not a bit easier to write than it was to let it swirl through my jumbled mind. My mom is dying. We have all known this for a many months, but I could know it for a hundred years and not be ready.

Most of you who know me in real life know that mom was placed under Hospice care in January.  While that was an incredibly difficult step, it's just so hard watching as she continues to get weaker and weaker.  She is so tired - so tired of the fight, so tired of keeping up the positive outlook, so physically tired.  Seeing her go through this is the hardest thing I've ever done.  And honestly, I've seen a lifetime's worth of hard things in the last 5 years.  I've seen my son go through two open heart surgeries and watched as he spent a week on life support.  I've said goodbye to my home and everyone I knew to move across the country.  I've lost the grandparents who shaped my life and my faith, my understanding of what family means.  And still, preparing to lose my mom is harder for me.

I am afraid to try and explain how close my mom and I have been because words can't do justice to our amazingly special relationship.  She has taught me how to get through those hard times and has held my hand on the toughest days.  She's given me the "suck it up" speech when I needed it and been patient and understanding when I needed that.  We've shared work life and silly inside jokes.  We've shared a love for writing and a hard core shoe-shopping addiction.  I cannot imagine the future without her here with us.  With me.

This week has been full of the highest emotional highs and the lowest of lows.  Derek and I both had the biggest events of our respective careers on back to back days, and now coming back to earth is proving difficult.  I'll share the highs soon - it's good stuff! - but right now I am feeling pretty beaten down by life, worn out from the roller coaster.  I am so glad she was able to hear about Derek finishing his PhD and my successful graduation gala with some of the most influential people at the University.  She is incredibly proud of each of our successes.  I want to focus on gratitude for her being here to experience these things, but it's tempered with disappointment that she is so weary she can hardly stay awake to hear about them.

This is not how I had planned my life to be, and I am still waiting to wake up and have things the way I envisioned them.

Last summer she made me promise that I would not dwell in sadness but would be grateful for the closeness we have shared and the incredible blessing we have had in an amazing mother-daughter relationship.  I totally lied.  (Sorry, Mama!)  Tonight, I'm having a hard time with the whole grateful business because I'm too busy being brokenhearted.

I love you the best, Mom.  I am not ready to say goodbye.  I don't know when that goodbye is going to be - but even if it's a year from now, I will not be ready.

You can't judge an apple by looking at a tree...

...You can't judge honey by looking at the bee
You can't judge a daughter by looking at the mother
You can't judge a book by looking at the cover
-Bo Diddley, "You Can't Judge a Book by the Cover"

Upon retrieving the kiddos from school this afternoon, I found this in Jay's artwork folder:

They have been growing lima beans in a variety of ways - some in the old paper towel/ziploc bag taped to the window experiment, some in the sensory table in actual dirt, and then some outside near the playground.  Springtime is a good time for learning about how plants grow and where your food comes from.  Thank you, preschool, for teaching him stuff I never, ever, EVER in a million years would have thought to teach.

So upon seeing the book and his drawings inside, I enthusiastically asked, "Tell me about this book you made!"  No response.  "Hey Jay!" I tried again.  "What are these drawings inside your book?"

Get ready for it...










"Oh that's the instruction manual for Daddy's lawnmower."

"Ummmmm?????  I thought it was about the lima beans you've been growing at school?" I wondered tentatively.

"Oh yeah.  I guess it's that too.  But mostly it's telling Daddy how to use his lawnmower."

You say it's your birthday

It's my birthday too, yeah
They say it's your birthday
We're gonna have a good time
I'm glad it's your birthday 
Happy birthday to you.
-The Beatles, "Birthday"


One of the joys of having two boys with birthdays only two weeks apart is the opportunity to have a joint party.  I know that they won't love the idea for too many more years, but for now they are big fans of shared birthday celebrations.  And let me assure you, I am a BIG FAN of the shared birthday.

First up, Jay's big party with his buddy Sam from school.  Sam's mom is my new bestest friend in the whole wide world because she offered to include us in the celebration she was already doing.  With all the worry over my mom's declining health, I am just really hesitant to think about anything more than about 3 minutes in advance.  Planning a birthday bash and inviting kids to celebrate Jay turning the big oh-4 was just not on the agenda this year.  But she turned a celebration for Sam into a double birthday bash, and I am certain that Jay had ten times the fun by having a party with his best bud.  We didn't let a little rain slow us down - the kids did their best rock star impressions, played on the playground between showers, and thought that the trek through the words to meet some friendly geese was the highlight of the party. It was great times.

 Making rockstar faces

 

 Party friends and a little craftiness.

Sweet - a humongous puddle for jumping!

Oh yeah.  My knees are wet.

What's a party without some silly faces?

 Enjoying the park

Birthday Buddies

One VERY happy birthday boy!

Then we had a family celebration to honor Jay and Luke on Sunday evening.  We had been envisioning a small, informal, low-key event.  Well let me say that my family is all about informal and low-key.  But we are not small.  Not in any way, shape or form do we know the meaning of small.  We're large in number and we are loud!  While the chaos of having a multitude of grandparents, aunts and uncles sometimes wears my dear hubby out, it's just what a family gathering is to me.  We had pizza and goldfish and good company.  We inherited a ball pit and the boys (young and old!) had a blast throwing balls around the back porch.  Jay and Luke opened presents, we watched NC State finally win a basketball game, and we laughed.  A lot.  That is what family gatherings should be.

 

 

 

 

Brotherly Love

So, thanks to all those who helped make the double birthday celebrations twice as much fun.

To Luke - I just cannot believe you are already TWO years old.  You're so much fun.  That sneaky, "I'm-going-to-get-in-trouble-but-I-don't-care" grin lets you get away with more than you should.  It's awfully hard to tell you no when you're so dang cute and laughing about your silly antics.  But your enthusiastic bear hugs and sweet kisses are two of my favorite things in the world, and you know just how to use them to say you're sorry.  I miss that sweet baby face - and I might just keep rocking you to sleep until you're twelve.
Happy Birthday, wild man.

To Jay - I am really proud of the little boy you have become.  You are so caring and know just how to make those around you feel better.  Your teacher says that you "have a mind of your own and you're not afraid to use it!"  That makes me laugh, but it's such a perfect description of who you are.  I am glad that you know your own heart and that you go after what you want with such gusto.  You've taught me a great deal over the past four years, and perhaps the most important lesson is to embrace every day as a gift.  I don't want your heart defects or miraculous recovery to define you, but I don't ever want to forget how close we came to losing you. 
Happy Birthday, buddy.

and you can take these things to heart...

you can take these things to heart
when the bullets fly, i am on your side
yeah you can take these things to heart

no one's ever gonna love you like i do
doesn't matter about the mess you're going through
no one's ever gonna love you like i do, like i do, like i do

you can take these things to heart

-Kyler England, "Take These Things to Heart"

So I think this is a blogging first - a song by a musician that I really know in real life!  (Okay, we're not counting Jay's musical debut of "I Got a Tomato," though I do know him well, and his performance was certainly as entertaining as any professional musician.)  Kyler England is a great singer-songwriter that I first encountered at CoffeeSHAC at NC State, and she's really making a go of it as a professional musician.  I love her songs, and of course these particular lyrics really spoke to me as a Heart Mama.  Take a listen - I think you'll like her too!

So, Happy Valentine's Day, my friends.  And let me take a moment today to celebrate the end of Congenital Heart Disease Awareness Week.  I follow scads of heart mama blogs and they have been filled with stories of folks who have traveled the heart highway.  Maybe not always the same path, but we do share each other's hurts in a very real way.  Feel free to check out the Blogs With Heart section of this page if you're interested in hearing their stories.  Or for you Pinterest fans, you can check out the Faces of CHD board and see more than 200 sweet little ones who were born with broken hearts.  (You just might recognize a tough little Rocky imitation - Jay was #200 added to the board!)

I think that Ruth from A Trip to *Holland said it best when she says that "We read to know that we are not alone."  The CHD community has been incredibly supportive of me - in fact, Ruth took the time to email me and let me know much of what we could expect with an artificial mitral valve.  She was so encouraging and reassuring as we figured out what it would mean to care for a child on blood thinners.  She helped me to see that our life could once again be pretty normal, and I'm incredibly grateful for the support we've had from so many fellow heart moms.

But I have to admit that I struggle a great deal with the widespread notion that we must raise awareness of CHD.  So many people seem to believe that awareness = more funding = better outcomes for our wee ones.  THAT IS SIMPLY NOT THE CASE.  Awareness definitely can lead to greater financial support for a cause that's near and dear to my heart (pun intended!).  But here's the thing - money doesn't equal lives saved.  Research dollars don't necessarily turn into cures or prevention or better detection.  They can.  But they don't always.

Case in point - in the last ~25 years, there has been an enormous push to raise awareness of breast cancer.  You've all seen it - from the pink ribbons on top of your yogurt to the pink bracelet that I'm wearing right this minute.  Pink has become synonymous with breast cancer, and by sporting those pink shoelaces, you're saying proudly that you "support" breast cancer.  We're all aware - in fact, many people are so "aware" that they mistakenly believe that breast cancer is the #1 killer of women.  (It's heart disease, for the record.)

But what the heck does that widespread awareness mean in real life?  Well, for one thing it means plenty of funds lining the pockets of some prestigious nonprofits.  (I'm not picking on Komen.  Okay, yes I am. They brought in about $400 MILLION in 2010, and 34% of that went to "education." Education is nonprofit speak for raising ever more awareness.  And really, we're aware.)  But you know what else all this awareness means?  Nuthin'.  More women are fighting breast cancer than when the pink awareness campaign began.  And the outcomes for a woman diagnosed today are essentially no better than they were in the 70's.  We're aware, but it sadly has made little difference.  The Slate article "Sink Pink" from a couple years back details this issue so clearly - if this post has made you think about the purpose of awareness, take a few minutes to read it.

So, what do I want?  Well, I do want more folks to know about CHD.  Here are some facts:

•  Approximately 1 in 100 babies are born with congenital heart disease - it's the most common birth defect.  
• CHD is the leading cause of infant death in the US.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

But, as I said before, awareness is meaningless without a purpose.  So I want awareness with action, and here's the action I'm focusing my energy on right now: I want mandatory pulse oximetry screening for every newborn in the United States.  I've talked about this before, and we've come a very long way since my last comments.  Many states are making it part of the standard newborn screening panel, and that's a huge victory.  Jay was lucky - his heart defects were identified before we went home.  Many families are not so lucky.  Pulse Ox testing is simple, inexpensive, non-invasive, and uses equipment that hospitals already have.  Every newborn has a hearing screen, yet CHD is far more common than congenital hearing loss.  Let's work together to ensure that we give these 1 in 100 the best chance of a successful outcome.

(The Valentine's Day card Jay made for his awesome cardiologist.  

We love you, Dr. M!)

So, Happy Valentine's Day to you.  As you see hearts everywhere, remember the little hearts and those who are fighting right now for their lives.  And most of all, may you know that you're loved today and every day!

When the walls...

...come tumblin' down
When the walls come crumblin' crumblin'
When the walls come tumblin' tumblin' down.
-John (Cougar) Mellencamp, Crumblin' Down

It's not often that I take vacation on a random Tuesday morning.  But it's not too often that this happens next door:

And it's not too often that you get to see your tool-wielding, construction-loving 3 year old completely utterly transfixed.

 (Whoa!)

 Our neighbors are rebuilding, putting 2 houses on the lot where this sweet little 1950's ranch stood this morning.  And I took half a day off just so the little man and I could watch the demolition.  And boy did we watch!  We parked ourselves in the sunshine of our front yard and watched it come crashing down.

 (He would have sat in that spot for HOURS!)

(We even recruited LaLa to come over - set her up in a comfy chair 

in the yard so that she could join in on the fun, too!)

 (The supervisor at work.)

(When will you stop with the plants and start working on the HOUSE?!)

I know that normal people use their vacation days to go to the beach or DisneyWorld.  But after seeing how excited that little boy was about this house demolition, I am 100% certain that Disney has NOTHING on a construction site, particularly one right next door.  He was absolutely enthralled.  When it got boring (which eventually it did, even for him!), he started using sticks to "tear down" weeds in the yard.  I feel sure the kid will eventually go into construction management or civil engineering, though I'm pretty sure he'd be far more excited to be the guy driving the backhoe.  The look on his face was priceless - he was completely in his element.  It was one of the most fun days I've had in a very, very long time.

Things are crazy in my life right now - worrying about my mom, worrying about the future, worrying about what's not getting done, trying to coordinate too much.  I've tried mentally blogging about it, but I just can't quite get the words out.  Maybe that's because I just don't want the world to know my vulnerabilities. The figurative walls are crumblin' down in my life, and I'm really struggling to keep putting one foot in front of the other. 

So, today was a much needed break - to literally watch some walls tumblin' down.  More importantly, I spent the morning doing something just because I wanted to ...completely forgetting about the things I ought to do. 

Good stuff.  

So, I promise to keep you updated on the progress of the new house that gets built next door.  Because the pint-size supervisor will demand that we go by to check out the progress every evening from now until they lock the doors and hand it back over to the neighbors.

She asks me why I'm just a hairy guy...

...I'm hairy noon and night
Hair that's a fright
I'm hairy high and low
Don't ask me why
Don't know


Hair, hair, hair, hair, hair, hair, hair
Flow it, show it
Long as God can grow it
My hair
-"Hair" the Musical

Since my sweet Luke grew more hair than the infant peach fuzz he had at birth, he's had crazy hair.  It's been that funny, fuzzy, stick-y up in all directions mane that you've come to giggle about.  It's tough to describe, but it is certainly something to smile over.

 New Year's Eve, 2011
Just like Rufio from "Hook" ... perhaps we should go red and black.
Could work for our little Wolfpacker!

Now, there's plenty of stuff out here on the interwebs that isn't quite what it appears to be.  Pictures are cropped and photoshopped until they barely resemble the real life image the camera captured.  Not so with these photos, I promise.  These are original, untouched craziness. In fact, pictures rarely do justice to the insanity that is dear Luke's hairdo. And there's no static involved.  No hair products could do this on purpose.  It's 100%, all natural, crazy baby hair.

 

I think this was as long as it ever got - Thanksgiving 2010

 

Trimmed up, but crazy as ever - Feb 2011

Even when it's short, it stands straight out from his head - October 2011

Okay, so hair products were used one time to create his rock star locks for Halloween.

The front sticks up and forward, the sides go anywhere from straight out to semi-down, but on the crown of his head head, it's skyward, straight up, and sometimes curving up and then back.  And for those of you who don't know him in real life, it's touchable.  You can rub his head over and over, and it pops right back up.  In fact, even after a whole day of wearing a hat, it springs back out - like it's been begging to escape the hat for hours.

This is not nap hair.  This is just what it does.

Sometime in late summer or early fall, I decided that if it could just get enough length, it would become heavy enough to lay down.  I committed to letting it grow out until Thanksgiving.

We started getting more and more comments from random strangers at the grocery store.  "I just LOVE his hair!"  I'm not sure whether to believe them.  I think "I just LOVE his hair!" might be code for "OMG why on earth do you let him leave the house like that?!"  It definitely invites comments.  One 9ish year old kid in a restaurant came up to him, rubbed his head to be sure it really wouldn't lay down, then said "My hair was just like that when I was little!"  And I gotta admit, the boy's hair wasn't too far from that still.

The other fairly frequent comment that we get is "My (nephew/brother/son/insert-other-semi-distant-relative-here) had hair JUST like that at his age!!"  And my quick response is "So, did he grow out of it?!  Puhleaze tell me he did!"  I actually love hearing from those folks, because most are reassuring that by the time the kid was elementary age, his hair was pretty much laying down.  There's hope right?


Now, I will say, that we used some grownup shampoo (it claims to be "smoothing")  while we were visiting Derek's mom after Christmas.  It came as close to laying down that day as it ever has:

 

See!  Laying down on top, sticking out only on the sides and back.

But another wash with baby shampoo, and it's back to it's regular gig of standing on end.  We even tried a heavy duty leave in scalp moisturizer/conditioner.  If that much grease won't make it lay down, I don't know what will.

When it wasn't showing any signs of becoming more tame at Thanksgiving, I decided to let it go until Christmas. 

It's a little tough to tell in this pic because he was so squirmy, but his hair is easily 2 inches long.  And still standing on end, straight out from his head.  On New Year's Eve, I finally gave in and buzzed him again.  Short.  Sweet.  And sticking out in all directions once again.

But you know what my dear Gabby discovered (via "Wait Wait ... Don't Tell Me," no less!)?  There is an incurable genetic syndrome known as "Uncombable Hair Syndrome."  Oh yes.

Uncombable Hair Syndrome.  

The hair shaft has a groove in it that actually prevents it from laying down - the hair is triangular shaped.  To save you the effort of Googling it yourself - cause I *know* you were going to! - here are some images borrowed from the web:

Yep, looks an awful lot like my sweetheart's crazy locks, especially the one at the bottom.  Most of the kids in pics have hair that is more kinky - Luke's is actually pretty smooth.  So I'm not sure if he'd actually qualify from a diagnostic perspective, but he sure does from a description perspective.

Uncombable hair.  That's my boy.