Thankful for Twenty-Twelve

When January 1, 2012 rolled around, I did not make it my New Year's resolution to be more grateful - the desire to do so slipped in quietly and unobserved. It all started when I began reading this book with a group of girls and, although it currently lays unfinished on my bookshelf, its over-arching theme of thankfulness has left a lasting impression on my heart.

The last few months of this year have been full of such peace and straight-up goodness, that I felt it was only fitting to close out another year of blogging with a collage.

97.  dancing in the rain

98. meeting Johnny

99.  Jesus rays

100.  adapting

101.  pushing for pulse ox

102.  handprints

103.  Team Ethan

104.  the magic of Disney

105.  Saturday morning fun

106.  life flight

107.  Uncle Moo Moo

108.  my daddy

109.  marriage

110.  sweet glimpses

111.  Christmas

112.  bonded by hearts

You can see the first six collages (photos 1-96) by clicking here.

Thank y'all for joining us on this journey.  I pray that you and yours will find an abundance of health and happiness in twenty-thirteen.

Christmas Happenings

There are very few things in life that refresh my soul like time spent with family.  When I first moved to Raleigh, it was hard for me to make friends because I would head to Mama and Daddy's house every chance I got! While I've found some balance with that, I am still very fond of pointing my car east and filling my belly with my mama's cooking.

Christmas is no exception.

Jeramie and I have now spent eight Christmases together and, until this year, have never celebrated in our own house.  We each love going home, and I feel so blessed that we love our respective in-laws' homes just as much!

With Ethan being almost four (FOUR!), though, we felt like it was time to start some traditions of our own.  For the first time in seven years, I slept in my own bed Christmas Eve! It was such a sweet time for the three of us, and I look forward to the Christmas mornings to come.

Christmas morning, 2012

For an entire month, Ethan only asked for one thing.  He got it, and this reaction brought tears to my eyes.

We spent Saturday through Monday at my parents' house, where we had our annual oyster roast.  That specific tradition always makes me think of Michael, but this year it elicited smiles instead of tears.  It was also fun celebrating with my sister and her husband (I say it every chance I get).  Good times all around!

Relaxing between gifts

Ethan was sick most of the weekend, but you'd never know it based on his smile and overall level of excitement!

A riveting game of Hungry Hungry Hippos

On Tuesday afternoon, we headed to Jeramie's parents' house and celebrated with his mom, dad, grandma, brother, sister-in-law, and nephew - whew! I loved getting the chance to snuggle with sweet baby Johnny, and Ethan expressed his new-found love for "stashews" (pistachios).  The guys played their annual poker game and I'm happy sad to say the trophy won't be living on our mantle for 2013.

Being a mama AND an auntie is kind of like having your cake and eating it too.

"I don't know what it could be..." - we must have heard that 20 times!

They're not called stockings for nothin'.

This year, I particularly loved how involved Ethan became with the story of Jesus' birth.  I tried to get a video of him telling it - because hearing him talk about how the angel "disappeared" to the shepherds is about the cutest thing I've heard - but he wasn't crazy about the idea.  Just take my word for it - it was precious.

We are blessed, indeed, and I hope your days were just as merry!

Merry Christmas to all...

...and to all a good night!

Pushing for Pulse Ox

If you've read this blog for any prolonged amount of time, you're probably well aware of what I mean when I say (or write) "pulse ox".  For those of you who may be new to our story, or just need a refresher, let me explain...

Pulse oximetry screening ("pulse ox") is a test that determines the amount of oxygen in your blood.  If you've ever been in the hospital, you've most likely had a clip on your finger (a pulse oximeter) which transmitted your oxygen level to a monitor above your bed.  For the majority of us, that number will read as 98% or higher - meaning, our blood is at least 98% saturated with oxygen.  When you hear someone talking about "oxygen saturations", or "sats", they are referring to how saturated your blood is with oxygen - the higher, the better.

When Ethan was born, we had no idea that something was wrong with his heart.  Zip. Zero. None.  However, it didn't take long - eight hours, to be exact - to learn that it was failing him terribly.  This terrifying discovery came about as our postpartum nurse was bringing Ethan back to our room from the nursery and noticed that "he just didn't look right".  She quickly took him back to the nursery, where she hooked him up to a pulse oximeter, and found him "satting" in the mid-60s - meaning, his blood was only 65% saturated with oxygen.  Not good.

As you can imagine, the result of that screening began a flurry of activity which eventually culminated in someone coming to our room (without our son) to say, "We have reason to believe there is something wrong with your baby's heart."

After working through some of the shock and devastation that came along with that news, there was an intense feeling of gratitude.  We were - and still are - immensely thankful for the nurse and her keen perception, for her quick reaction time, and for a hospital that was willing and able to screen Ethan with pulse oximetry at the first sign of distress.

Believe it or not, some families - some babies - are not that fortunate.  In many hospitals across this great state, babies' oxygen levels are not screened before being sent home.  Some of those babies pass away days, weeks, or even months later from undetected heart defects, and others are rushed - urgently and critically - to a medical center capable of handling their broken heart.

Take a minute and read that last paragraph again.

Now, tell me - when a simple, inexpensive, non-invasive test exists, that has the ability to detect critical congenital heart defects, why is that paragraph above a reality for so many babies and families?! Think about it this way: if Ethan's heart defect hadn't presented so quickly (which often doesn't show up as soon as his did), and our birthing center hadn't routinely checked his oxygen levels before sending him home (which they wouldn't have), it is very likely that he would have died - DIED! - from a heart defect that could have been detected with pulse ox (which it was), and surgically repaired (which it was), allowing him to live a near-normal life (which he does).

Why is such a simple, potentially life-saving screening not the norm for babies born in our state? Why do we check their hearing before sending them home from the hospital, but not their hearts?

Thankfully, I am not alone in my frustration and disbelief.  Here in North Carolina, a stakeholder group has been formed and is actively pursuing legislation that would require our hospitals to screen every newborn with pulse oximetry before sending them home.  As with most issues, there are opponents, but we are fiercely determined to make this happen for our state.

If you live in North Carolina and would like to help us in our pursuit of this law, please take action!  If your family has a personal story to tell about pulse ox screening, you can contact me and I'll help you get your voice heard.  You can also sign up at You're the Cure to advocate for this screening by sending letters to your lawmakers, telling them how important this is.  It's an easy process and takes very little of your time!

[As of May 2013, screening for CCHDs using pulse oximetry is now LAW in North Carolina!]

It's no secret - early detection saves lives.  How many times have you heard that in regards to other issues? Heart defects are no different, and it's time North Carolina gives our broken-hearted babies the best chance possible to fight this country's number one birth defect.

Will you stand with us?

Dapper Dan

Last week, Ethan got all spiffed up for my sister's wedding! She and my now-brother-in-law were among the oodles of couples to get married on December 12th, 2012.  It was precious and I am thrilled for the two of them!

In other news, Ethan and I head to Duke this afternoon for a follow-up with his geneticist.  It has been a little more than a year since we've seen him, and I don't imagine we'll learn anything new today, but your prayers are still greatly appreciated.

And, as with the rest of you, my thoughts and prayers are also with the families in Newtown, Connecticut.  My sentiments echo the thoughts of many of you, and all I can think is ... Jesus, hold them close.

Have a safe and happy Monday, y'all.

The Sweet Spot

It's been a while since I've written something of substance here on the blog.  My fingers itch to dance across the keyboard - my heart desperately wanting to remember this phase of our lives.  For some reason, the words haven't come easy and my thoughts aren't well-formed, but I'm ready to write.

Some time after we returned from our Disney trip (maybe that was the start?) we've been in, what I'm calling, the sweet spot.  It occurred to me sometime in November that life was feeling particularly good.  Peaceful, even.  I brought this up to Jeramie during our Thanksgiving travels and he was feeling it as well.

It was a noticeable difference, mostly because life had been stressful and chaotic earlier in the fall.  I was feeling stretched thin, terribly impatient, and less than graceful.  Jeramie and I were in a constant state of frustration with each other, and Ethan often experienced the effects of my emotional instability.  I can't pinpoint the exact source of our family's imbalance, but one day I was heavily convicted about our "social" calendar.  It had been a particularly busy week and I was just over it.  Over commitments.  Over busy-ness.  Over the frustration.

So, I prayed.

I asked God to slow us down and re-focus our hearts.  I asked Him to give me a new kind of love for Jeramie, more patience for Ethan, and an endless amount of grace for all three of us.  That week, days that had been scheduled to the max suddenly became void of commitments.  Meetings were canceled, outings with friends were rescheduled, and something changed in our family.  This all happened simultaneously with our church's sermon series in Proverbs, and I just knew God was speaking His wisdom and peace straight into our hearts.

It has been pretty incredible to sit back and watch Him work in our lives.  In addition to this re-focusing we've experienced lately - which has been more internal in nature - God is also working out some big things, externally, for our family. 

Many of you know that we've been desiring two specific things in the past few months: a new job for Jeramie and a sibling for Ethan.  While I'm not yet pregnant, but very much wanting to be, I have personally experienced a sense of emotional protection and peace about it all.  God has placed a pretty amazing friendship in our lives, which has given us a glimpse into how our family could look in the next few years, and it has calmed my heart in so many ways.  And on the job front? Jeramie starts in a new position at his company on Monday.  Praise God!

I love that this sweet spot has come in the midst of Advent, this season of expectant waiting.  It's so abundantly clear to me that God has been preparing our family - our hearts - for this time, and I pray that our words and actions are honoring and glorifying Him.  I don't know if it's because of the Advent activities we're doing with Ethan, or my own personal journey to this place - or maybe a mixture of both - but the story of our Savior's birth hasn't been this real to me in a long time ... maybe ever.

So, today, I'm praising God for this place of peace, savoring this sweet life with my boys, and waiting patiently and expectantly for the joy that's coming.

Happy December, friends! May you and your family be blessed this Christmas season.

From the Mouth of My Babe - Volume 9

Recently, we've been having two recurring conversations with Ethan.  The first involves Ethan asking us - fifty-eleven times, mind you - where we're going and where we're going after that and after that and after that.  The second is more on mine and Jeramie's end as we're constantly reminding him to stay in his bed each night.  These two conversations alone happen multiple times a day 'round here.

Last week, on our way back home from home group, Ethan started up:

"Where are we going?"
"Home."
"Where are we going after that?"
"To bed."
"And where are we going after we go to bed and wake up?"

You get the idea.

I took the opportunity to remind him, once more, that he needed to sleep in his bed, and Jeramie launched into all the reasons for why that's so.  After a minute or so of "discussing" this with Ethan I said,

 "So, you're not gonna come get in mommy and daddy's bed tonight, are you?"

And, as if that was the craziest thing he had ever heard, Ethan replied...

"But ... yeah ... I am."

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One of Ethan's favorite things right now is "helping" in the kitchen.  He wants to do whatever Jeramie and I are doing, and he wants to do it completely on his own.  With this independence came about the self-realization that he can now peel a clementine, and his desire to do so has bordered on obsession!

One day, I walked into the kitchen to find him sitting on the counter with a butter knife and randomly stabbed pieces of fruit.  I got closer and noticed that all the stickers with the item codes had been pulled off of each clementine and stuck to the counter top.

When I asked him why he took off all the stickers he said, 

"I did that because this house is not a store."

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I posted this one over on our Facebook page, but it's too good not to share here, too!

Ethan has been getting himself in trouble lately with using toys, crayons, markers - you name it - inappropriately.  You know - ink pens to create an original masterpiece on the arm of the couch, crayons to draw life-size pictures on the walls, straws to sling spit.

I had just taken yet another item away from him when I heard, in his most exasperated voice to-date,

"I can't blow bubbles.  I can't do crafts.  I can't do NOTHING!"

It's a hard knock life, but somebody's gotta live it.

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To read more of Ethan's funnies, click on the "From the Mouth of my Babe" sidebar button!

Just some photos...

Happy Wednesday!

Happy Thanksgiving!

We are thankful for...

...cups, jobs, our cars, food, toys, ice cream, my wife, heat, Ethan, my tools, plates, ketchup, electricity, clean water, books, the Bible, our house, doctors, my mom and dad, Daddy, Ms. Theresa, my church, shirts, coffee, and friends...

...to name a few.

Happy Thanksgiving to you and yours!

Photo Book Winner!

Thank y'all for the sweet comments about your favorite blog posts.  I'm not gonna lie - I was moved to tears by most of them, and each of them brought a smile to my face! This boy of mine has come so stinkin' far and I appreciate you remembering and celebrating with me.

So, onto the winner...

Comment #3, by Haleigh and Noah's Mom:  

I have been reading this blog for years and I can't pick just one memorable story.  Ethan's story has been such a huge testimony of how wonderful our Savior is.  Love reading the updates and yall are always in my prayers!

Amen.

Thank you, Kristen, and congratulations! Send me an e-mail at joyemullis{at}gmail{dot}com and I'll send you the promo codes for your free book!

Y'all have a great day!

The Feast

Last week, Ethan took part in his first ever holiday "program" - an adorable Thanksgiving feast put on by the three-year-old classes at his preschool.

He had spent the couple of weeks leading up to Thursday's event singing the songs and explaining to Jeramie and me how to bow after a performance.  Precious, I tell ya! Of course, on the day of, not a word escaped his little lips.  He went from excited about seeing us in the crowd, to shy, to even covering his face during part of one of the songs.  He was so proud just to be up there with his new buddies, though, and so were we!

Love that face!

Future outfielder?

Running to Mama after the performance

Ethan was especially excited that Jeramie was able to come, and I am so thankful for their sweet relationship.  These faces say it all...

In other feast news, we learned how to cook a turkey, according to Ethan... 

"My mommy puts the turkey in the oven for five hours.  Then she takes it out and puts salt on it."

Not bad, considering I can barely cook chicken tenders - let alone turkey.  He must be learning from those grandmas of his!

We hope y'all are having a great week and gearing up for a wonderful Thanksgiving!

So proud of our boy!

A Video Thank-You and a Giveaway!

*E-mail subscribers and Google Reader users - you may need to click through to the blog to view the video!

So, reminisce with me.  What has been your most memorable Signs of Life moment over the past four years and five-hundred posts?

One lucky commenter will win a free 8x8, 20-page, hardcover photo book from Shutterfly, with free shipping, to document your own favorite photos and memories!

Thanks again for loving us well, and good luck!

(Comments will close at 11:59 p.m. EST on Tuesday, November 20, 2012.  One entry per person.  One winner will be picked, using Random.org, and announced on the blog on Wednesday, November 21st. Promo codes for one free photo book and free shipping expire on December 9th, 2012.  Taxes may apply.)

Our Thankful Tree

So, I've been reeeeally slack about my one thousand gifts project.  I can think of multiple things on a daily basis that I'm thankful for, but - one - to have the camera ready, and - two - for it to be something I can actually take a photo of, is proving to be difficult.  I think I'll make one last collage with four photos to make an even one-hundred, then simply write the rest.  We'll see.

The whole point of starting the project, though, was to pull myself into a deeper level of gratitude.  Saying "thank you" has always been important in our family, but I want to move past the obligatory "thanks for passing the popcorn" and into a constant state of thanksgiving.  I think I'm getting there, and I'm seeing genuine appreciation begin to emerge from Ethan as well.  It's pretty awesome, and I thank God for it!

So, between it being the month of thanks, and reading everyone's blog posts and Facebook updates about what they're thankful for, I had an idea.  Not an original idea, I'm sure, but an idea nonetheless.  For about an hour this afternoon, Ethan and I cut-out construction paper pieces for our family's thankful tree.  The idea is that every night at dinner, leading up to Thanksgiving, the three of us will say one thing we're thankful for.  I'll write each answer on a leaf, and we'll watch our tree of thanks grow!

It's incredibly simple, and it has made me smile multiple times today already.  I'll post a photo of the finished product and let y'all decide who said what, and who cut-out which pieces!

Shutterfly: Thank the Troops

I don't know about y'all, but when it comes to holidays, I can focus more on the time Jeramie gets off of work than the holiday itself.

This flaw of mine came up just last night at dinner when I asked him, for the umpteenth time, "Are you sure you don't have Monday off of work?!"

He doesn't, but that doesn't mean today isn't worthy to be celebrated.  I won't claim to know the sacrifice military families have to make on a day-to-day basis.  I've never known this first-hand, but I've witnessed it in a handful of other families.

These men and women deserve extraordinary amounts of thanks, and the folks over at Shutterfly are giving us an opportunity to give them just that.

With a few clicks of your mouse, you can choose, personalize, and send a thank-you card to a troop - Shutterfly will print and mail it, at no cost to you.  I just did it myself and it took less than two minutes! It's a simple act of gratitude that will speak volumes to our troops.

I hope you'll take a couple minutes out of your day to participate: Thank the Troops

Happy Veteran's Day!

The Ethan Update

Aside from our vacation, we've had a lot going on in the past month or so! How 'bout an update on this mischievous little boy...

Yeah ... and?

For starters, our first nephew (and Ethan's first cousin) - Johnny - was born on October 1st.  We are smitten with him and, personally, I'm really excited about being an aunt for the first time!

Ethan has big plans in store for the two of them, and it melts my heart to hear him talk about Johnny in such an adoring way.

Also, in the vein of "big family news", my sister is engaged! I am beyond thrilled for the two of them and I'm still digesting the fact that my "little" sister is getting married.  Welcome to the family, Uncle Moo! (For the record, this has been twelve years in the making.  Morgan is my best friend's brother, so Brandi and I are officially sisters.  Or something like that.)

Now, before I go any further, let me say this.  Sometimes I struggle with recognizing the difference between pride and bragging, and celebrating how far Ethan has come.  I'm learning that when I think it's all about me and what a great mom I am, that's a problem.  (Because, let's be honest - even on a good day, I still raise my voice and lose my patience!) But when I sit back and marvel at how present God has been in the life of my son, and give Him the glory for that, it makes me want to throw a big 'ol party.

So, with that said, let's celebrate!

Preschool is going exceptionally well for Ethan now that he understands what's expected of him.  There was a rough adjustment period in the beginning, but all of that is now a thing of the past.  When I pick him up each afternoon and hear about the types of things he said and did throughout the day, it gives me hope that some of what Jeramie and I are trying to teach him is actually sticking.  Some days, y'all, I'm not so sure.  Needless to say, preschool has been a huge confidence booster for him and me!

Along those same lines, he is doing great from a developmental standpoint.  We've had no reason to think that he is in need of any services at this time, and he actually received an evaluation at preschool that noted his speech and language skills are within normal limits for his age.  Praise God!

A mama and her boy

Ethan's left hand has been the topic of conversation lately, as we had a one-year follow-up with his orthopedic surgeon a couple of weeks ago.  The x-ray looks unchanged, except for a slight inward turn.  We're not sure if that is due to a change in the actual anatomy of his arm, or if it's simply a matter of x-ray positioning.  Dr. F. didn't seem too concerned about it and doesn't feel the need to see him for another year.  There's still no need to brace Ethan's arm, which I am more than fine with, but it may be needed further down the road.  Based on what we learned two weeks ago, we still have a long way to go before we need to make any more decisions about future surgeries or interventions - if any at all.

The same day of the orthopedic follow-up, we met with a genetic counselor.  Given that various genes in Ethan's body have been tested, with no genetic diagnosis, we have enrolled him in a study at Duke.  Through this study, Ethan's entire exome will be sequenced to determine if any genetic diagnosis can be made from what they find. While this is more for their research purposes, there is a chance that we may learn exactly what has caused his various birth defects.  The earliest we could hear something would be April of next year, and if nothing is found we'll hear nothing.

I'd be lying if I said I'm not a little anxious to see what will come of this.  There's a very small chance that something they find would change Ethan's course of treatment, but a diagnosis would go a long way towards answering questions about additional children we may have, and even Ethan's future children.  Pray for us, please!

We've also been having some family fun this fall! Three years ago I felt completely isolated and thought we'd never be able to show Ethan the light of day.  If you would have told me then that he'd be in preschool now, and would become such a social kid after a year of very little social interaction, I wouldn't have believed you.  And, I really would have laughed if you told me he would do all those things without catching every single germ that came his way!

Truth is, Ethan thrives on social interaction and he's the healthiest I've ever seen him.  And you know what? My worrying didn't get him to this point.  That's all God - and He is so good.

Fall fun highlights...

Sometimes you just have to go outside and dance in the rain.

Carving a pumpkin with Daddy.  I love the concentrated looks on their faces!

Getting ready to trick-or-treat with Emma and Jackson, aka Hermione and Super Why

Birthday party fun

Rubbin' is racin'!

And just because it's precious...

Y'all have a great weekend!

Disney in Review - The Magic

If this hasn't been clearly stated in the other posts, let me say it now...

Disney is freakin' magical.

I don't care if you're three, or thirty, that place is simply amazing.  The only other time I've been there paled in comparison to this trip. Yes, our senior trip was fun and exciting, and we got to watch Destiny's Child perform in front of the castle, and it holds fond memories of sweet Michael - but, man.

To see it through Ethan's eyes - and to experience it for myself in such a different way - was incredible! There were things, from an excellence standpoint, that thirty-year old me could appreciate far more than eighteen-year old me.

Like this, for instance...

I mean, really.  Who takes such pride in their work that they go above and beyond just cleaning the messy spill off the concrete?!

Then, there were things that I think I could only see through Ethan's eyes.  Standing in front of a gigantic aquarium and watching the manatees swim?

Not sure I would have done that if it wasn't for my animal-loving three-year old - or Christy, actually!

A few other favorite magical moments from the trip:

1.  Standing at the bottom of the castle, just before the fireworks began.

2.  Watching "The Festival of the Lion King" with Ethan, and being just as enthralled as he was.

3.  Ethan snuggling Nemo with his own "special fin" during "Finding Nemo: The Musical".

4.  The smile that I captured right after Ethan met Mickey for the first time, and that I continued to see throughout the week.

5.  And this?

Top magical moment, by far.  I promised you the story back in one of my earlier posts, and I aim to deliver - and remember!

It was our second day at Disney and we were in Hollywood Studios.  We had just finished riding Toy Story Mania for the first time and the seven of us congregated in a spot just outside the ride.  Emma, being the avid pin trader that she is, spotted a Disney cast member with a large assortment of pins on his lanyard.  She walked over to him to make a trade and we all followed.

Jeramie and Jonathan had started a pin collection for Ethan the day before so we asked Ethan if he, too, wanted to make a trade.  He did, and the cast member bent down in front of the stroller to show him the goods.  What happened from there, I'm not exactly sure.

This is what I know.

As the cast member was talking to Ethan about pins, we noticed that we just happened to be standing in front of the meeting spot for Buzz and Woody.  Ethan quickly noticed this, as well, and Christy went to check on the wait-time.  When she came back, we briefly concluded that we wouldn't have time to wait due to our lunch reservations.

During all of this, I was standing with Ethan and the cast member, halfway in the Buzz and Woody conversation, halfway helping Ethan make a trade.  The cast member was seemingly oblivious to the adult conversation happening above him and had moved onto noticing Ethan's "1st Visit" button ... and maybe his hand, and maybe his "stroller = wheelchair" sticker? ... He made a huge deal about it being Ethan's first trip, started to talk to him about what he had seen so far, and then asked if he'd like to meet Buzz and Woody.

Of course, Ethan excitedly yelled, "YES!" and I'm thinking to myself - "of course he does, but we just determined the line is too long..."

The cast member stood up, smiled and winked at me, then held up a finger as to suggest "give me a minute".  He stepped inside the meeting room - he was, after all, the cast member assigned to the exit - and came out a few seconds later.

"Give me two minutes," he said with a smile.

Before I could wrap my mind around what he had just done, our entire party of seven was being personally escorted into the meeting room by this man, and Ethan was staring up at Buzz and Woody with wonder and awe in his eyes.

I held it together for the photo, then ugly-cried my way out of the room.

Some of the tears were out of pure joy for Ethan, and the others came from a place of deep appreciation for what this man had done.  For noticing the details.  For making a memory that will last our family a lifetime.

As we were walking out of the room, he held the door open for us and grinned.  Through my tears, I asked if I could give him a hug.  He allowed me to do so and, as I pulled away, he kept a hand on my shoulder and said,

"It's all a part of the magic."

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You can read all posts related to our trip here.