Wednesday, August 31, 2011

Monday, August 29, 2011

What we've been up to...

Celebrating birthdays...

Spending time with friends...


Getting thisclose to finishing "Lost"...

Raising money for the Heart Walk...

Hanging out with family...

NOT taking naps...

Learning to ride a tricycle...

Getting ready for a very special trip...

Sweeping up leaves that Irene left behind...

Posing for pictures...

Thanks to Nicole Campo for asking Ethan to be one of her "models"!

...and feeling very thankful for where God has us, at this moment, and for the people He's placed along the way.

Hope y'all have an awesome week!

Thursday, August 25, 2011

All of Me

This song, "All of Me" by Matt Hammitt, has been buzzing around the CHD world for quite some time now.  I was a blubbering mess the first time I heard it and, since then, I've found it impossible to listen to it without tears in my eyes or down my face.  Once I saw the video above, of Matt speaking about writing the song, I knew it was time to share my thoughts here.

It's kind of crazy, but songs by Sanctus Real/Matt Hammitt have had quite an impact on my life for about five years now.

I first became aware of the band, Sanctus Real, in 2005 when I heard their song "The Face of Love" on K-Love.  At that time, Jeramie and I were preparing to be part of a local church plant and our leadership team was struggling to find a name for our new church.  I heard "Face of Love" that day and immediately e-mailed our pastors, telling them that I heard this great song and felt like it touched on what we, as a church, value.  The conversation continued and, at some point, Visio Dei (Latin for "face of God") was put on the table as an option.  It stuck, and we became Visio Dei - a group of people seeking, and showing, the face of God in our community and our world.

You are the face that changed the whole world
No one too lost for you to love
No one too low for you to serve

So give us the grace to change the world
No one too lost for me to love
No one too low for me to serve

Then, fast-forward three years.  It was the summer of 2008 and I had just found out I was pregnant.  My body seemed to want to reject the life growing inside of it, and there was a period of time when I wasn't sure what would happen.  Enter: "Whatever You're Doing".  I was teaching summer school and remember driving to work one morning when it came through my speakers.

Whatever you're doing inside of me
It feels like chaos but I believe
You're up to something bigger than me
Larger than life something heavenly

It was so surreal, and talk about crying! Little did I know, then, exactly what God was up to.  And just how big and heavenly it would be.

So, then, Ethan entered our world on March 8th 2009.  You all know what happened from there and I quickly found myself in the company of families I had never met.  I used this blog as my outlet and found other parents who did the same.  I navigated my way through this new community, and connected really well with a handful of mamas.  It was (and is) commonplace to share Care Pages, CaringBridge sites, and blogs of newly diagnosed families and, a year ago now, I found my way to Bowen's Heart.  I couldn't believe it when I realized I was reading about Matt Hammitt's (the lead singer of Sanctus Real) son.  This musician, who God had used so strongly to speak to me, had now found himself in the same world of breathing tubes, IV drips, and tiny wide-open chests.

Once again, I found myself connecting so deeply with his words, but this time they were in written form.  I couldn't stop reading about, or stop praying for, this sweet baby boy and this man who had now become so "human" to me.

When his wife, Sarah, posted the lyrics to "All of Me", worlds collided.  While Ethan's and Bowen's stories are very different, the emotions that song conveys is so on target for anyone who has walked this journey.  Fortunately (or, unfortunately; however you look at it) Jeramie and I didn't have months to prepare for Ethan's condition.  I experienced excitement all 39 weeks of my pregnancy (not to say there wasn't fear at times).  Ethan was placed on my chest the second he left my body.  I held him, nursed him, and loved on him for eight entire hours.

But then, once he was taken from me, it came.  Despair.  Fear.  Anger.  The thoughts and emotions that some parents have weeks to work through came to me in a matter of minutes.  When I was finally allowed to be with him, I found myself fearful of touching my own baby.  Grieving over the cry I couldn't hear.  Beyond angry that any of this was happening in the first place.

It was all there.  Every word of "All of Me" was stirring around in my own soul.  The loss of control.  The pain.  Just wishing I could be enough.  But, even amidst the nastiness of emotions comes the love.  And the love you feel for your child in a moment like that is indescribable.

Praise God for bringing something so beautiful out of something so broken!

Ethan - I'm all yours, and you are so worth it.

Afraid to love something that could break
Could I move on if you were torn away?
I’m so close to what I can’t control
Can’t give you half my heart and pray He makes you whole

You’re gonna have all of me
You’re gonna have all of me
You’re worth every falling tear
You’re worth facing any fear

You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start

I won’t let sadness steal you from my arms
I won’t let pain keep you from my heart
I’ll trade the fear of all that I could lose
For every moment I’ll share with you

You’re gonna have all of me
You’re gonna have all of me
You’re worth every falling tear
You’re worth facing any fear

You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start

Heaven brought you to this moment
It’s too wonderful to speak
You’re worth all of me
You’re worth all of me

Let me recklessly love you
Even if I bleed
You’re worth all of me
You’re worth all of me

-"All of Me", Matt Hammitt 

Saturday, August 20, 2011

Haircuts with Heart - For the locals

I'm super excited to tell y'all about an awesome fundraiser my sister, Jessi, has planned for the 2011 Heart Walk! For those who don't know, she's a pretty incredible hair stylist.  She's been cutting my hair for a long time now, minus her brief stay out west, and I've always loved what she does.  I'm actually going to see her this afternoon to let her work her magic on this mess of hair.

What can I say? Mama needs some pampering.

She works for a great company, Aveda, and they're all about botanically-based products, which are great for your hair/skin AND the environment.  They (at least her salon) are also very involved in raising money for community events.  Just recently, they held a hair-cutting event for our local SPCA and, on September 11th, they will be at it again, but this time raising money for the 2011 Triangle Heart Walk!

Jessi will be located at the Aveda store (not salon) in Crabtree Valley Mall on Sunday, September 11 from 12:00 p.m - 7:00 p.m.  The store is located on the 1st floor, near Sears.  For a suggested donation of $30, you will receive a dry haircut, with styling tips and Aveda product suggestions.  Every single penny raised from this cut-a-thon will go directly to Team Ethan.  100%, y'all!

How's that for a win-win?

(Tips are much appreciated and will stay with Jessi.)

If you live locally, and you would like to participate, you can see all the nitty-gritty details on the Facebook invitation page.  Even if you accept the Facebook invitation, be sure to call the Aveda store to set up your actual appointment.  The phone number is listed on the invitation, as well as Jessi's e-mail address should you have any questions.

*For those of you who may not use Facebook (congrats!) use the "Contact Us" link on the left-hand side of the blog to shoot me an e-mail.  I'll reply with all the info you'll need!

The event is open to anyone and everyone, so feel free to pass along the information if you know someone who may be interested.  I would encourage you to set up an appointment, though, as the mall tends to be pretty busy on Sunday afternoons!

I'm so proud of Jessi for using her talents to benefit her community, and specifically to raise money for an organization that is so dear to all of our hearts.  Hope to see y'all there!

Thursday, August 18, 2011

An interesting discovery

Recently, we (Jeramie, me, Ethan's therapists) have discovered something particularly fascinating about our Wonder Boy.  Ever since Ethan was little, we've joked that he likes to keep everyone on their toes.  Whether it's medical drama, or peeing in a dresser drawer, there's always something! Not only that, but he never ceases to amaze those he comes in contact with.

This situation is no exception, and I think it's going to blow your mind.

Are you ready for this?

We are pretty convinced that Ethan is a lefty.  My child - who has an entire bone missing in his left arm, only four fingers (none of which can bend) on his left hand, and no thumb - is a freakin' southpaw.

Of course, we'll never know for sure.  The anatomy of Ethan's left hand will force him to become right-hand dominant, but all signs point to a strong tendency to use the left side of his body...
1 - He is left-footed, which is something I noticed a while back but didn't think it meant anything.  Jeramie instantly knew it was a sign that Ethan could be left-handed, and I confirmed it with his OT yesterday morning.  She watched him kick a ball for about 5-10 minutes and it is so obvious that he prefers his left foot.  In fact, only once during that entire time did he even try to kick with his right foot, and it was completely awkward. 

2 - For a while now, Ethan has struggled with age-appropriate grasps with his right hand.  We're always having to correct the way he holds markers, crayons, etc, and he has yet to master the pincher grasp.  (As with crawling, he has a modified technique that gets the job done, but it's not technically correct.)  A light bulb went off in his OT's head once we made this realization and now we know he'll need a little extra help to make that feel natural.

3 - I vividly remember the day I took the brace off of Ethan's left arm, after months of it being casted, operated on, and splinted.  He was sitting in his high chair and I was distracting him with veggie chips while I removed the brace and the protective cloth.  The second I freed his hand, he picked up a chip between two of his fingers and brought his hand to his mouth to feed himself.  I cried real big proud tears, posted something on Facebook about it (I'm sure), and silently thanked his OT at the time for all the work she had done to encourage such behavior.  Little did I know his mind was screaming, "it's about time!"
I feel like we just unlocked a treasure box in regards to Ethan's development.  Knowledge is power and wealth when you're dealing with a child with special needs and, with this discovery, you can just call us Bill Gates, et al.  Just as I would have to work harder to use my left hand if I were to lose function of my right one, Ethan will need lots of encouragement to become right-handed.  Is it impossible? Not at all.  And, not even for a second, do I dismiss the thought of Ethan figuring out a way use his left just as easily and freely as his right.

Kid, you're going to move mountains.
What a blessing that, as God was knitting all of Ethan's special characteristics together in my womb, He wired his mind to prefer the hand that so many people had doubts he would ever use.  God's just oh so good like that.

And funny, too.

Monday, August 15, 2011


Today, my friend Stef is hosting a blog linking event on her personal blog.  It's called "Every Heart has a Story" and, if you've been around here a while, you may remember the post I wrote for it last year.

(It's right here if you've never read it, or if you just want to read it again.  It's the best place to start for those of you who may be new to our blog! You can also find the link for it on the left-hand right-hand side of the blog by clicking on "About Us" in the "Learn More" section.)

It's kind of crazy reading back through all of that and remembering what a hellacious time we experienced during Ethan's first few months of life.  Some of it still seems like a really bad dream, but the literal and figurative scars on all of our hearts proves that's just not so.

It did happen.  My three-day old baby did undergo an eight hour open heart surgery.  He did require eleven minutes of CPR to keep him here with us.  He was G-tube dependent for eighteen months of his life, never eating more than a few bites of food a day.

The boy he is today makes it easy to forget the fragile baby he was two years ago.  Today (literally, today) he is a three foot tall, 28 pound toddler who still has every ounce of that fighting spirit in him (just ask the guy who had to take his blood).

Today he charmed the staff in the PCICU, and provided hope to a family in the waiting room.

Today he threw a perfectly-formed two-year old temper tantrum when I told him he couldn't go play in the construction zone.

Today I was able to dismantle all of our geneticist's concerns with my answers to his developmental questions.

The story I told last year is still our story today, but that sick little baby is transforming into the boy I prayed I would get the opportunity to know.

It's happening right before my eyes and, today, I don't take a single second of that for granted.


So, about that geneticist, blood draw thing.  I took Ethan to Duke this morning for a yearly follow-up visit with Dr. J, the geneticist who was assigned to Ethan's case at birth.  At this point, all genetic testing has come back negative.  Dr. J is still leaning towards a diagnosis of Holt-Oram, but there just isn't enough present-day research to confirm it.  In the meantime, he is going to test for one other genetic disorder (enter: screaming, sweaty, had-to-call-for-back-up blood draw), and we should have those results in four-to-six weeks.

As usual, if this test is also negative, we will stop there and know that Ethan has been tested for every possible genetic disorder that could be linked to his conditions.  He will continue with yearly follow-ups and will only be tested when new developments are made in the genetic world (additional Holt-Oram types emerge, discoveries of additional disorders, etc).  If positive, Jeramie and I will be tested and we'll go from there.

The probability of this test coming back positive is pretty low, but Dr. J feels like it's worth looking into.  So, look into it we will.


And, with that, that is where we are today.  

There are two ways to live: you can live as if nothing is a miracle, or you can live as if everything is a miracle.
-Albert Einstein

A miracle, indeed.

Wednesday, August 10, 2011

Tuesday, August 9, 2011

I can't make this stuff up...

OK, so I promise I'm not going to write about our nap time adventures forever, but this one is too good not to share.

I put Ethan down today the same way I have put him down the past few days.  Change his diaper.  Read a story.  Say our prayers.  Turn on sleepy music.  Cover him with the blanket.  Walk out of the room.  He was so quiet for the first few minutes, that I almost believed he was asleep.

He wasn't; but, as I mentioned yesterday, I could definitely tell he was resting.  A little while later, I heard him get up and walk around his room, then I heard him crawl back into his bed.  He was actually saying to himself, "lay down big boy bed .. take a nap" and I thought it might actually happen!

He was quiet again, but still moving around quite a bit in his bed.  It wasn't until I heard him playing with the CD player that I got suspicious.  We had already moved the changing table out of his room, remember? So, at that point, the only way for him to get to the top of the dresser was to use the dresser itself.

I ran up the stairs, opened his door, and expected to see him, somehow, sitting on top of the dresser.  That wasn't quite the scenario, but what I did see sent me back downstairs to grab the camera.

Naked as can be, having a grand ol' time with the contents of the drawers.
I instantly called Jeramie, as if my description could do the real thing any justice.  We were both laughing hysterically, which did nothing to discourage Ethan from said behavior, I'm sure.

The conversation that followed was the icing on the cake, though:
Me: "Ethan, where is your diaper?! And where are your pants?"
Ethan: [looking around the room, under the bed, etc.] "Umm..."
Jeramie: "Did he pee on anything?!"
Me: "I haven't even thought about that! Ethan, did you pee pee anywhere?"
Ethan: [looks in the bottom dresser drawer] ... "Yeah"
Me: "Yep.  There it is.  Ethan, did you pee pee anywhere else?"
Ethan: "Nope."
Well, at least he was honest.

At that point, there was nothing else I could possibly do to redeem "nap" time.  A few minutes later, the pee-filled drawer was cleaned out, clothes were put away, and a toddler booty was re-diapered.  We hopped in the car and set off for the safety aisle of our local Babies R Us where drawer latches quickly found their way into our possession.

I'm scared to imagine what he could possibly think of next.

Monday, August 8, 2011

Nap time - Revisited

Thank you for all of the advice and encouragement you've offered over the past couple of days.  Y'all offered some great ideas, and even better support; so, thank you! I joked with someone that "this too shall pass..." is on repeat in my thoughts these days, and I have to believe that it's true.

After lots of reading (your comments, parenting articles, etc.) and many discussions, Jeramie and I have decided that we are going to go with the "his room is his crib" viewpoint.  Just as I had to give up the power struggle of forcing Ethan to eat, I also have to realize that I cannot force him to sleep.

What I can do, though, is make his room a safe place that invites rest.  For us, this has meant removing all the things that could easily distract him from resting (large floor toys, fully accessible book shelf), and could put him in danger (the changing table).  At first I felt bad about taking away his fun stuff, but this morning I realized we did it for the same reason Jeramie and I don't allow a TV or computer in our bedroom.  Ethan has all morning, and an entire room of our house, dedicated to playing.

We are going to rearrange some things in his room and also create another acceptable space for him to rest.  My good friend Jen calls it the "cozy corner" and I'm pretty fond of that name, as well.  Ever since Ethan has been old enough to understand choices, we've allowed him to make them.  For him, we've found that it helps to eliminate these power struggles and gives him a sense of control.  We've decided to make nap/rest time no different.  It really does not matter to me if he wants to sleep in a beanbag on the floor, or in his bed.  Both are perfectly acceptable, and we'll all be less frustrated for realizing that.

I'm also not fully convinced that Ethan is in need of a nap anymore.  In a week's time (half of which he was still in the crib) he has taken, maybe, two full naps.  We went through this a couple of months back, but I knew he was still in desperate need of sleep.  Back then, when he didn't nap in the afternoon, if affected his mood and he would sleep horribly that night.  This week, he's had no trouble sleeping at night (even in the twin bed).  We've been putting him down around 8:00 and he's asleep by 8:15, sleeping beautifully all night long, and his demeanor is unchanged on those no-nap afternoons.

If that's the case - if he really is trying to give up his nap - then I surely can't impose sleep on him, but I can still require that he has a period of quiet rest time in his room.  We were already offering him book choices before we moved him out of the crib, and we continue to do so now.  If he chooses not to sleep, then at least he has acceptable, alternative options.

So far (yesterday and today) this has worked really well.  I can hear him over the monitor moving around his room, but it's often interrupted by 15-20 minute spurts of inactivity.  I imagine that he's looking at a book, or maybe even nodding off, so I know he's resting and he's safe.

As long as I can guarantee those two things, I'll take it!

Saturday, August 6, 2011

Nap time blues

There is so much happening in my head right now; so much I want to get in writing before the words start to escape me.  But, to take it back to my Stephen Covey roots, first things first.

Mama needs help.

If you've been following our Facebook family page, you know that Ethan spent the first night in his new bed this past Thursday. (And did very well, might I add.)

You also know that nap-time yesterday, however, was a total disaster.  At the very least, it made me question everything I thought I knew about parenting Ethan.  At worst, it sent me into a frustrated puddle of tears with a helpless Jeramie on the other end of the phone.

Actually, frustrated doesn't even describe it.

I spent an hour and fifteen minutes standing outside of Ethan's door, listening for him to get out of bed, then firmly yet gently putting him back in bed when he did.  An hour and sixteen minutes in, I lost it.  My patience was gone and I found myself growing more angry with Ethan by the second.  That's when I took a breather to call Jeramie, and all I could do at that point was to cry.

I left Ethan in his room, roaming as free as a Corolla wild horse, then waved the white flag shortly after hanging up with Jeramie.  It was awful.

I spent the better portion of last night still worked up about the whole situation and managed to convince myself that Ethan would never sleep again.  Of course, due to the lack of the afternoon nap, he slept beautifully last night, which gave me false hope that nap-time today would be a breeze.

Yeah, not so much.

Thanks to a child-proof doorknob, he actually stayed in his room today.  But, when Jeramie found him on top of the changing table, playing with the CD player on the nearby dresser, it confirmed that this isn't going to be easy.  The changing table is now in the hallway, the closet doors are locked, and all that remains in his room is the dresser (the drawers of which may be locked soon) and the bed itself.

So, back to my original request.  I need help.  Lots and lots of help.  Advice.  Stories.  Straight-up help.  I would love to wake up in the morning to many, many comments from those of you who have gone before me in this.  While I know that different things work for different children, I would not be disappointed to have an arsenal of ideas at the ready.

Given that Ethan always took a while to fall asleep at nap time in his crib, do we allow him to view his room as one big crib, assuming he'll crawl in bed when he's ready to sleep? Or do we require that he actually stays in his bed? Could it be that this transition is coming alongside him giving up his nap altogether?

I just don't know.

What I do know is, after a day like yesterday, I'm thankful that God's mercies are new every morning.  And that I wasn't responsible for nap time today.

Good night, friends. And, please.  Help a mama out.

Wednesday, August 3, 2011

Tuesday, August 2, 2011

Here and there

Hey friends; happy Tuesday!

First of all, I want to throw out a big ol', "way to go, Team Ethan!" [insert virtual high five, here].  We are now 13 team members strong, and together we have raised over $500 for the 2011 Heart Walk!

I was about to type, "y'all don't know how much this means to me", but I know you do.  You know how important this is for our family, and you know why.

But, the thing is, you all probably have other reasons why it's important to you.  Sure, Ethan's story has rocked all of our worlds in some way or another, but with the prevalence of heart disease, strokes, and heart defects, he can't be the only reason for you to lace up your walking shoes.

In my case, it's about my Daddy, too.  Maybe the same is true for you; or maybe it's a mom, an uncle, or a grandmother that motivates you.  Maybe, just maybe, it's another child.

In fact, it's likely that our team will have not one, not two, but three children with special hearts walking with us on September 25th.  One in one hundred, remember? How great will it be to remind and inform those hundreds of walkers at the RBC Center that heart problems does not equal adult?!

While Ethan is the main inspiration for our family participating in this event the past two years, he is not the only inspiration.  I doubt we'll have t-shirts this year, but I would like to think of some way for us to honor those we are walking for.   We are "Team Ethan" but we walk for many more ... Austin, Kenny, Jay, and Gary, to name a few.

If you plan to walk with us but haven't signed up yet, please do so. Oh, and Ethan now has his own donation page, if you want to show him some love!


In other blog news, I copied a great idea from my good friend, Jenn, and have set up a "Signs of Life" page on Facebook.  I have been slowly losing interest in Facebook over the past month or so, but I know that is where many of you come to read blog updates and check in our family.  That support is so important to me, so I'm hoping that y'all will join me over there as I start to use my personal Facebook page less and less.  

I've even installed a "Like Box" on the right-hand side of the blog to make it easy for you! If you have a Facebook account and you would like to keep up with our family through that particular outlet, just click "Like" and you're good to go!


We are enjoying a lazy start to our week, after going non-stop this past weekend.  Ethan seems like he's trying to catch a stomach virus of sorts, but he doesn't have consistent symptoms.  He's getting some good rest now, though, and for that I am thankful.

Speaking of rest, we are mostly likely going to transition him to a twin bed in a few days! We have everything we need, except the mattress, but that should be in our possession real soon.  I think he's going to do great, based on our experience at my parents' house, so I'm excited for him to enter this new phase of big-boy-hood.  I'll be sure to post pictures of his new room once it's all set-up!


Thanks for checking in, and many thanks for loving our family so deeply.  The feeling is most definitely mutual.

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