Signs of Life

Mr. Destructive

2012-01-26T12:57:00.001-05:00

It's a good thing I have a hair color expert as a sister...

Needless to say, the closet doors will be locked during today's "rest" time.

Pre-gamin'

2012-01-24T22:41:00.001-05:00

Hey friends ... happy Tuesday!

We are exactly two weeks out from the start of CHD Awareness Week, and plans all over the blog-o-sphere are starting to come together (even Pinterest is joining in on the fun). I'm particularly excited about what's being planned here - I'll be guest blogging for a local mommy blog AND holding my very first giveaway! Not to mention that this post marks my 400th here at Signs of Life - that's like some sort of blogging trifecta, and a whole lot of awareness being raised for congenital heart defects!

For my North Carolina readers - have you sent a proclamation request to Gov. Perdue yet? It's incredibly simple and only takes a couple minutes of your time. The Congenital Heart Information Network has a sample proclamation request, as well as contact information for Gov. Perdue here.

Y'all have a great week!

His banner over me is LOVE...

2012-01-22T21:07:00.001-05:00

Supplies:

-cardstock
-scissors
-glue stick (or double-sided tape)
-needle
-twine or ribbon

The how-to:
We started by cutting hearts of varying sizes and colors out of the cardstock. (We used the always simple fold and cut method.) Then, I traced and cut-out the hands. At first, I was only going to use Ethan's, but I decided to make it a family affair. Given my background in Deaf education, and our experience with congenital heart defects, we love some hearts and "ILY" hands around here! (To make the "I love you" hand, simply fold down the middle two fingers of each hand outline and glue them to the palm.) Next, I used a needle to thread twine through each of the hearts and hands. The cardstock moved freely across the twine, so I just played with it until I got everything spaced the way I wanted. I added a couple of pink pushpins to the mantle and ... VIOLA!

Pretty cute, huh? We're getting in the mood for American Heart Month, gearing up for Congenital Heart Defect Awareness Week, and showing some love in the process!

Stay tuned for more awareness week info ... and happy crafting!

On Carpe-ing the Diem

2012-01-20T12:18:00.000-05:00

Aside from the posts I wrote during Ethan's first few months of life, this might be the toughest collection of words I've ever tried to put together. Even now my heart is pounding in that God's-speaking-and-I-need-to-respond kind of way. I'm not nervous, per say, to publish these thoughts but, rather, I feel a strong burden to get these words out and (hopefully) delight the Lord in the process.

I'm fairly certain that if you're reading here, you've read this. I've read it multiple times since it began circulating Facebook a couple of weeks ago and have purposefully not shared it. Many of you have, though, and please know up front that I am not judging you for doing so.

My initial reaction the very first time I read it was, "I will not speak that as truth in my life." While the frazzled mom in me agreed whole-heartedly, the child of God - the core of who I am - wasn't quite as convinced. I knew, deep down, that God himself wants better for my days than to live in a constant state of stressful chronos.

However.

The more people shared it, and the more I read it, I began to go against my initial rejection of it. I found myself being comforted by her words and giving over to the emotions that often dictate my day-to-day. Parenting is hard, and some days do just flat-out stink. But, even still, something just didn't feel right.

Then.

I was on Facebook yesterday when I read this, posted by a friend:

"Call me crazy -- but I really do believe God has granted to me everything needed to bring order to my home and to raise respectful children who have ears to hear Him."

"YES!" - I felt my spirit scream. It was a quote, with a link to another person's wall, so I clicked through to read it in context. What I found was one woman's commentary on the very article that's been stirring my soul over the past couple of weeks! I was blown away by how closely my thoughts had mirrored her words, and I just knew God was speaking straight to my heart.

She says:

"There is an article going around the web about parenting called "Don't Carpe Diem." I have seen it a few times this morning. I cannot NOT comment. So here are a few things that stood out to me.

When I read this article, my emotions were stirred and wanted to voice their agreement, but my spirit was NOT shouting "amen."

The way she has written her article implies we are subject and slave to Chronos time and *may* - if we are fortunate -- be blessed with a few Kairos "glimpses" along the way. My spirit grieves this perspective. The Word says He orders my days. That does not sound like I am to be swept away or frazzled.

To read her take, God has set us out on a difficult, grueling, frazzling, nail-biting, Mt. Everest climb. Again, if this is indeed her perspective, I grieve for her.

I'm not saying parenting is easy -- far from it, but the God I know "leads those with young gently," takes our burdens and carries our load, yet balances these blessings with instructions for us to sow with diligence both day and evening, and commands for our hands not to be idle. My difficulty, in a nutshell, is that she has chosen to take her perspective, I perceive to be rooted in emotion, as truth, instead of what God's Word says on the matter.

Call me crazy -- but I really do believe God has granted to me everything needed to bring order to my home and to raise respectful children who have ears to hear Him.

Another friend of mine posted a blog entry this morning -- ironically titled "Carpe Diem." He puts it this way: "... where I have thrown my hands into the sky, thrown my head back, and with a smile a mile wide on my face, said to the One I trust the most - I TRUST YOU! BRING IT ON! 'I came so they can have real and eternal life, more and better life than they ever dreamed of. John 10:10' "

While we don't control diddly in life (except our decision to follow Christ!), those of us who do belong to Christ, belong to the One who controls everything. In that I find tremendous ease and enjoyment to this thing called life.

It's easy to give into our emotions - after all, they run on a downhill grade - but GOD calls us to step into the current and command it to go in a different direction through His power and presence." -Deborah Kirby, Joy in the Morning Ministries

THAT, my friends, is truth. I've been so convicted lately of not spending enough time in God's word. The result, of course, is not keeping His truths and promises close to my heart, and allowing myself to be influenced more by the words of others. And, as I said to my friend, this is just one more ~~nudge~~ smack in the face from The Man himself.

Now, just to be clear. Just as I am not judging any of you for agreeing with her words (I believe God spoke straight to my heart, using this particular post, for a specific reason), I am also not attacking the author of said post. Since reading "Don't Carpe Diem", I've read a few more posts of hers and find myself enjoying her humor and style of writing. Chances are, I'll continue to read - maybe even follow - her blog.

But.

I'll be significantly more aware of what I'm allowing myself to accept as truth, and prayerfully finding myself drawing closer to God's truths in the process.

AND.

It's very likely I'll be carpe-ing the diem along the way. He tells me I can, after all.

She is clothed with strength and dignity;
   she can laugh at the days to come.
She speaks with wisdom,
   and faithful instruction is on her tongue.
She watches over the affairs of her household
   and does not eat the bread of idleness.
Her children arise and call her blessed;
   her husband also, and he praises her:
“Many women do noble things,
   but you surpass them all.”
Charm is deceptive, and beauty is fleeting;
   but a woman who fears the LORD is to be praised.

-Proverbs 31: 25-31

Toddler Dizzy Bat

2012-01-19T14:55:00.001-05:00

If anyone ever doubts that Ethan is Jeramie's mini-me, feel free to direct them to this post.

Always the comedian. Always the center of attention.

Now, go ahead and laugh 'till your stomach hurts.

Cardio Update

2012-01-17T23:21:00.000-05:00

Hey friends! So, do y'all want to hear about Ethan's cardiology appointment?

"What cardiology appointment?", you may ask. Tell me about it. Six months between appointments and this mama put no more thought to it than waking up to pee in the morning!

(Actually, I did get a little nervous Sunday night when it seemed that Ethan was developing croup, but all is well! Thanks for the prayers you lifted up over on our Facebook page.)

As we were getting ready this morning, I actually thought about how different this appointment already was from some of our earlier ones. I specifically remember Jeramie and I waking up hours before those first few appointments, preparing stuff and ourselves, and arriving mega-early to the office. This morning, I'm pouring coffee at 8:45 for a 9:15 appointment 20 minutes away, and Jeramie's finger-combing Ethan's hair on the way out of the parking deck.

Times are a-changin'.

The appointment went so well, and we couldn't have asked for a better behaved patient! Like, for real. Over the past few visits, Ethan has become less and less upset, but tests had always been met with some resistance. Today?

"Just laid back - gettin' my EKG on."

I was chatting with our beloved echo technician while Ethan got all set-up and before I knew it, the test was almost over! No need for Mama's hand, or mine and Jeramie's song-and-dance routine. Just a perfectly still little boy.

That same brave boy walked himself into the echo room, climbed up on the bed, and let the technician get EVERY angle she needed. This has not happened since Ethan was about a year old, and to say I was proud (and shocked) is an understatement.

The results from those tests were just as great. Ethan's pacemaker is doing it's thang, his heart is squeezing beautifully, and the gradient pressure has only increased slightly. The pacemaker has about 2 years of battery life left so, if all continues to go as it is right now, we're looking at a surgery around that time to replace the pacemaker battery and the conduit.

How does the saying go - two birds with one stone?

As usual, Dr. I was pleased with Ethan's outward appearance and development, and he was very happy with the inner workings of his beautifully broken heart. (Still no thrill - whoop whoop!) He'll see Ethan back in six months, and I assume we'll continue in that pattern until "go time".

The only downer of the appointment - there's always something, isn't there? - was the extensive conversation we had about what activities Ethan should and shouldn't participate in. Admittedly, Jeramie and I have been a little lax about the whole pacemaker thing and we were nicely reminded to put a little more thought into that titanium box in Ethan's belly.

We've always known full contact sports are out of the question, but I was fully expecting to enroll Ethan in gymnastics this spring. Evidently, though, for a child who is 100% pacemaker dependent, any activity that puts extra pressure on those leads is a no-go. I'm thinking three weeks of jumping in a foam pit is going to be just fine, but Ethan won't be flipping over the uneven bars anytime soon.

As someone who is not athletic - at all - the lack of sports isn't as unsettling for me as the fact that, as much as I try to fight against it, Ethan is different from other kids his age. Yes, he can run and jump and play with the best of them, but much more caution needs to be put towards protecting his pacemaker than what we're doing now. Admitting that doesn't feel good, but one of those leads breaking and something awful happening will feel even worse.

And, besides ... Mandy and I have already decided that our boys will pay their way through college with golf scholarships! Or swimming. Michael Phelps, anyone?

To reward Ethan for his stellar behavior, we stopped by our local fire station on the way home. We've been talking about going ever since a truck showed up on our street over the summer, and we finally made it happen toady! Ethan was in.awe. If he could have gotten his hands on everything at the same time, he would have. The firemen who gave us the "tour" were super nice and invited us back anytime we want to come. Who of my Raleigh friends are thinking "play date!" right now? A big thanks goes out to Station 20 for filling Ethan's special heart with indescribable joy!

God is so, so good. Y'all have a great week!

7 Years Later

2012-01-16T11:01:00.000-05:00

On this day, in 2005, I met the man who would become my husband. It's kind of crazy that it has only been seven years! Before January 16th, 2005 I had no idea Jeramie even existed. And now, on January 16th 2012 we're five and a half years married, with an almost 3 year old. We've known each other for less than a decade, but what we've experienced together makes it seem like a lifetime.

We're fortunate in that what we went through with Ethan has strengthened our relationship. There are, of course, stressful times and the past seven years haven't always been a walk in the park. It's easy to focus on Ethan (special needs, or not) - or anyone else, for that matter - and put each other on the back burner. But, when we take a step back to focus on our marriage, it's obvious that everyone benefits.

In an effort to help with this, I created something I found on Pinterest. "I love you" can turn into a common, everyday phrase - which isn't necessarily a bad thing - but sometimes it's nice to know why. It's fun to sneak into the bathroom and leave a message for him to find later, and I thoroughly enjoy reading his notes to me.

It's the little things - and this sweet little project has made a difference in our day-to-day, I think. I'm sure there will come a day when the cute reasons will fade and it will simply state, "because God tells me to" - but, I guess it doesn't get much more truer than that, does it? Now, to be intentional about those date nights!

I love you, Jeramie! Here's to seven more - and seven more after that, and after that...

Mr. Emotions

2012-01-12T15:07:00.001-05:00

(PS - Thanks for all the quiet-time activity suggestions. Y'all are great!)

Input appreciated!

2012-01-10T14:46:00.000-05:00

Hey y'all - just a quick post to get some advice from all you parents, grandparents, and babysitters out there.

As you all know, Ethan is almost 3 (less than two months away, in fact) and, sadly enough, is phasing out of his afternoon nap. In the last nine days, he has taken three - and two of them were car-ride induced! I know I can't force him to sleep, and we are reaping the benefits of an easier bedtime when he doesn't nap, so I'm OK with this transition. (Well, maybe not totally OK, but I'm getting there!)

I have tried to instill an appreciation for "rest time" (read: Mama gets a break) but it's actually doing more harm than good. With only a bed and a dresser in his room, Ethan still manages to cause all sorts of trouble when he's alone up there, which turns "rest time" into "stress time" for both of us.

So, here's where you come in. I'd love to get your input on your favorite afternoon activities for these little, high-strung people. (Neysa - I know you've got some good ones!) Preferably they would be mostly independent, indoor activities that would hold his attention for more than 5 minutes.

Got a great idea (or two .. or seven)? Leave it in the comments below! Many thanks in advance...

Top Eleven of Twenty-Eleven

2012-01-04T21:33:00.002-05:00

It never fails that the last couple of weeks in December and the first couple of weeks in January lends themselves to a time of reflection. I catch myself doing it as if it's second nature; I'll find myself reading back through old blog posts, comparing our then and now, and thinking about where we'll be this time next year.

I've enjoyed reading back through 2011, so much so, that I thought I would compile the top 11 posts from the year. I read through each of these last night and couldn't believe how much has changed. Two thousand eleven was a year of healing for me. I was very inward-focused, stressed, worried, and full of anxiety and sadness. It took good therapy, good friends, and God's grace to get me over the humps, and I look forward to 2012 being a year of giving it all back - getting more involved in my community and being more intentional in my relationships.

Twenty-twelve is going to be a good, good year - I can feel it.

So, without further ado...

Signs of Life's Top Eleven of Twenty-Eleven:

#11: Vowing to Remember - Mar. 31, 2011
#10: In the Trenches - Feb. 10, 2011
#9: One More Week - Mar. 1, 2011
#8: The Plan - May 2, 2011
#7: Breathe in, breathe out. - Jan. 20, 2011
#6: I Just Need to Vent - Jan. 25, 2011
#5: It's All About Your Heart - May 11, 2011
#4: Ethan's 2nd birthday party - March 23, 2011
#3: Every Heart Has a Story, Part II - Feb. 15, 2011
#2: Today - Aug. 15, 2011
#1: Good genes, bad genes - Feb. 27, 2011

(P.S. - I realize I may be the only one who really gets anything out of reading these old posts. However, if you've been following along for any extended period of time, and want to have a great big "Yeah, God!" moment, read away.)

Happy new year, y'all! Two thousand twelve, we welcome you.

From the Mouth of my Babe - Volume 2

2011-12-30T13:25:00.001-05:00

A couple of weeks ago, Jeramie was putting Ethan in the car. Jeramie accidentally bumped Ethan's head on the door and apologized for "bumping his noggin'" Ethan responded with: "Daddy bump my noggin' everyday! At home...at work...at school..."

Evidently, we need a bigger car.

*******

For the longest time, Ethan has pronounced "tomorrow" as "tum-ah-yo" and I adore it. While at my parents' house for Christmas, he began talking about something that would happen the next day, but stopped himself mid-sentence and said, "No, not tum-ah-yo. Tomorrow."

Like, duh.

*******

And, finally, straight from Jeramie's Facebook status:

"Earlier tonight [Tuesday] Ethan accidentally kicked me in the coconuts (hard). After about five minutes of me writhing in pain and him asking a handful of times if I was okay he finally said, 'Daddy? You dead?'"

*******

What will he come up with next?

Christmas Re-Cap

2011-12-29T19:09:00.002-05:00

Following in the footsteps of the past two years, I'll leave you with many pictures (and few words) to summarize our Christmas. It was a whirlwind of traveling, as usual, but quality time with family makes it more than worth it!

Food

Jesus

Surprises

Tradition

Pajamas

Fun

Magic

Dreams

Naps

Joy

Family

Love

Merry Christmas!

2011-12-25T08:00:00.000-05:00

Christmas Interview - 2011

2011-12-22T16:41:00.004-05:00

Ethan's been saying and doing some cute things lately, so I thought I'd try to get them on camera. It's a bit lengthy, but pretty cute - if I do say so myself.

School Days

2011-12-15T23:17:00.000-05:00

So, I guess it's about time I update the blog on Ethan's preschool situation. Yes?

We met with a preschool IEP team - and, by meet, I mean I talked and Ethan played - a couple of weeks ago. An hour and a half later, I walked out of the building with a proud smile spread wide across my face. Within that period of time, the team - consisting of an occupational therapist, a speech therapist, a special education preschool teacher, a case manager, and myself - decided that Ethan will NOT be eligible for special education services through our public school system.

Between my assessment of Ethan's early learning skills, and the team observing him, we all agreed that he is developmentally on track - and then some, in some areas. The case manager described him as a "true early intervention success story", meaning all of the therapy he has received since he was born has closed those developmental gaps and eliminated the need for future intervention.

[insert praise for our local CDSA and all of our therapists/friends here]

But, I'm not gonna lie. While that is news every mother wants to hear about their child, I felt my stomach churn as I thought about being on my own for the next two years. Since the day Ethan was born, we've had someone by his hospital bed, or in our home, coaching us on how to help him. While I like to think that Ethan would be where he is today without the help of those people, I just don't know. Yes, I was in the special education field for 6 years, but there's a mental block when it comes to applying that knowledge to my own son. It's strange, I know.

I'm going to have some huge shoes to fill come March, and I'm already asking God for the parental confidence and wisdom I'll need to get us to kindergarten.

Until then, the IEP team did suggest that we give Ethan extra opportunities to socialize with groups of kids his age. Given that, and my new job situation, we've enrolled him in the preschool program at Jeramie's work. It's a back-up only program, and Ethan is able to go twice a month. He'll be in a class with two-to-five year olds and I think it's going to do wonders for his social language and behavior!

And, I know for a fact that he loves it.

He had his first day of "school" this past Thursday and it exceeded all of my expectations. I held it together through the whole drop-off process, but lost.it once I got in the car. Y'all, I'm not even kidding. I cried for 15 minutes straight just thinking about my sweet boy with that bookbag on his back. Then, when I imagined him looking around the room not knowing anyone, it broke my heart all over again.

Thankfully, I was headed to a meeting for work and had no choice but to stop the tears and focus on the task at hand. And, when the meeting was over and I read the report from his teachers?

Victory. Sweet victory. Now, somebody pass me the tissues.

Christmas Craftin'

2011-12-12T15:09:00.002-05:00

Last year, Jeramie and I decided to ditch the idea of going out and spending tons of money on Christmas gifts. Our decision was fueled by multiple reasons, one of which was our need to save said money. I was a little nervous about how our handmade gifts would turn out, and if they would be well-received, but Christmas Day affirmed that we had made the right decision.

We've continued with this style of gift-giving throughout the year and, thanks to Pinterest, I've found some great ideas for Christmas gifts again this year. Of course, I can't share those on the blog just yet, but I did want to share some other crafts we've made this holiday season.

Courtesy of Pinterest:

Hand print Christmas tree

Mop & Glo + glitter ... who knew?!

Courtesy of Amy @ Eat. Sleep. Decorate:

Paper-pinned & fabric-wrapped trees

Cute little snow globe

Other than the hand print tree, I made each of these items at craft parties over the weekend. It was so much fun to get together with friends and create such cute stuff!

Now, to ~~finish~~ start on the gifts...

So, I have a job.

2011-12-06T15:56:00.000-05:00

This has been a common sentence lately, interjected in conversations during play dates and dinner dates, and it feels almost question-like as I state it. "Soooo, I have a job?" - as if my mind still hasn't fully comprehended this fact. Or maybe it's that I'm questioning whether I can actually call it a job, given that it seems entirely too good to be true.

But yes, it's true. Mama's got a j-o-b.

I guess it was sometime in late October when I got an e-mail from a friend & former co-worker, informing me of a need for some consultative work with a local charter school. After exchanging a few e-mails with the director of said school, I went in (entirely over-prepared) to "interview" for the position. Little did I know that my contract would be laid out, ready for me to sign two minutes after I walked through the door!

Since then, I have been going out to the school to consult with teachers regarding the education of a hearing impaired student. I make my own schedule, based off of what works best for Ethan, all the while knowing that he's in the hands of one of my dearest friends! He gets play time with one of his best friends, and I get to take back the part of my brain that was slowly being taken over by all things toddler. It is super flexible, affords me the opportunity to keep "stay-at-home-mom" as my top priority, and all the while helps to pay a few bills.

It is quite the lovely situation, and I say all of this for two reasons.

One - at some point in the future, somebody's going to want to know where I worked during the 2011-2012 school year and, like with everything else I need to remember, I'm going to come here to figure it out.

And, two - the most important reason - at some other point in time, I'm going to need a reminder of just how good our God is. I'm going to need to remember that time in 2011 when I gave up control of our financial situation and watched Him orchestrate something I could have never put together on my own. Then, when I get all prideful about what a great job I've done, and how I'm making all this extra money for my family, I'll need a swift kick in the pants to remind me that it's all about God's provision. Modern day manna, if you will. And then, when I turn all whiny-Israelite on y'all, you can feel free to point me back to this post.

I'm not there yet, but I know me and I know it will happen. Until then, you can find me delighting in this sweet gift of financial peace, typing up IEP notes, and most likely taking a few more naps!

"He humbled you, causing you to hunger and then feeding you with manna, which neither you nor your ancestors had known, to teach you that man does not live on bread alone but on every word that comes from the mouth of the Lord."

-Deuteronomy 8:3

Promo code!

2011-12-02T20:31:00.001-05:00

Hey y'all! For those of you who still need to order your Christmas cards (I just placed my order last night!), I have a promo code to share with you.

We've used PhotoAffections for the past 3 years for all of our photo card needs, and we've always been super impressed with both the price and quality of their cards. To save $10 off your holiday photo card order, enter the following promo code at checkout:

HRC02OY

Happy shopping!

For the Locals - Part II

2011-12-01T14:35:00.001-05:00

I don't know about y'all, but when I think about the holiday season a few things come to mind. If you're of the Christian faith, the celebration of Jesus' birth is first and foremost - but, aside from the reason for the season I think about things like family, and giving, and an overall spirit of cheer.

I am delighted with the cheerful giving I've seen take place after this post and, because I'm all about spreading said cheer, I'd like to inform you of another great way to give back!

Do y'all remember this post? I wrote it for Ethan, who had just turned two and a half, but it was full of incredible pictures taken by Nicole Campo. Nicole is one of my sister's co-workers and, not only is she fabulous with hair, but she takes some pretty amazing photographs.

Nicole just set-up her brand-spakin' new photography website and is ready to start booking sessions. But not only that, she has generously offered to donate $50 to the Children's Heart Foundation for every session booked just by mentioning this blog or my name.

Now's the time to get those family pictures taken, and feel good knowing a portion of that is going towards "saving children's lives .. one heart at at time".

Check out some of Nicole's work by visiting her website OR her Facebook page. You won't be disappointed!

Wordless [captioned] Wednesday

2011-11-30T08:00:00.000-05:00

Thanksgiving Day:

Nothing quite like a Daddy and his girls.

Ethan looking way too grown.

Somebody's ready for dinner!

Ethan and Betsy - BFFs

Kinston Vikings vs. Reidsville Rams:

The Lord's Prayer after a 20-16 victory over the Rams. See the empty stands? That's because everyone's out on the field!

A regional champ coach and his team.

Carter Finley - here we come!

A beautiful wife + a regional championship plaque = one happy man! So proud of you, Nick.

Family Reunion - Ladies' Night:

My lovely Mama with cousin Gwen.

The cousins - this is only a fourth of my 1st cousins! I'm one out of 32.

The aunts - Four beautiful sisters (plus two sisters-in-law)

Love these girls - you can't tell we're related, can you?!

Fall fun in Mebane:

Ethan finally got to play in some leaves!

Having fun with Grandma.

Where's Ethan?


Exploring with PawPaw.

The End.

A Cozy Little Christmas

2011-11-28T14:53:00.001-05:00

Hi all! I hope each of you had a wonderful Thanksgiving; we sure did! And, for the first time in years, I braved the Black Friday crowds. Jessi, Jeramie, and myself found ourselves at Wal-Mart at 10:00 on Thanksgiving evening, standing in awe with mouths agape - watching women tear through bath towels like they were pairs of Jon Bon Jovi's underwear. We had no idea what we were getting ourselves into, and had only two items in mind: pajamas and slippers.

Most of you know that I am a part of a family advisory council for the pediatric intensive care units (general and cardiac) at Duke Children's. Our mission is to support those families who find themselves in either of the units, and we've done everything from providing meals to creating crisis admit bags for them.

Recently, we learned of a need for things like kid-friendly, comfortable shirts and pants, underwear, and slip-resistant footwear for the children in those units. During the first critical hours/days in the ICU, most children are either wearing only a diaper/underwear (at least), or are covered up by hospital blankets (at most). Very rarely do clothes come into the picture. However, during that period of time between "critical" and "stable", when children may stay in the ICU for monitoring before being moved out to the floor, clothes still aren't always readily available, but are needed. The fortunate ones - whose parents live close by, or who have friends bringing things to the hospital - may find themselves in a clean pair of underwear or a favorite t-shirt. But, many nurses end up scrounging around for a decent-sized hospital gown for their patient just so the child can take a walk around the unit.

Our council decided to do something about this and, without further ado, I present to you...

Christmas Flyer
One of the mothers on our council has volunteered to cut the t-shirts up the back and attach a piece of Velcro at the neck so that they are easy to put on and take off amidst wires and tubes. And what child in the ICU wouldn't love a pair of comfy, fun pants?! The side-snap onesies will come in handy for the wee little ones (I speak from experience), and our family chose to go the slipper route instead of socks (either are completely fine).

I know many of you reading this have spent lots and lots of time at your local children's hospital and may already have something planned for them this Christmas season. But, we will greatly appreciate any item(s) you wish to donate! If you're reading this from Canada and can't physically deliver items to me, I will gladly accept monetary donations and purchase something for you!

I would love nothing more than to deliver bags and bags of clothing to the units, knowing that no child will have to sit half-naked in a hospital bed on Christmas day (and the day after that, and the day after that, and the day after that), and I would love for you to help make that possible!

Thanks for considering this as part of your holiday giving this year!

Happy Thanksgiving!

2011-11-24T08:00:00.000-05:00

"Shout for joy to the Lord, all the Earth.

Worship the Lord with gladness;

come before him with joyful songs.

Know that the Lord is God.

It is he who made us, and we are his;

we are his people, the sheep of his pasture.

Enter his gates with thanksgiving

and his courts with praise;

give thanks to him and praise his name.

For the Lord is good and his love endures forever;

his faithfulness continues through all generations."

-Psalm 100

What are you most thankful for today? I'll start ...

Today, I am most thankful for my own little turkey - for the laughs, the challenges, and the love he provides each and every day!

Happy Thanksgiving from the Tri Mulli!

A Good Day

2011-11-21T15:35:00.001-05:00

I realize there are still quite a few hours left in the day but, as far as "Duke time" is concerned, it has been a good one!

Ethan had his renal ultrasound first thing this morning, followed by an appointment with his urologist, Dr. W. It took some convincing, and Nick Jr., to get him to cooperate for the ultrasound, but the technician was eventually able to get all the images she needed. I have to admit that fear and worry began to creep into my thoughts as she hung around the backside of Ethan's left kidney, but they were smashed as soon as the word "normal" escaped Dr. W's lips.

Ethan's kidneys look absolutely, positively, 100% normal and won't need any further monitoring.

Amen?!

Dr. W. also wanted to see how things were going from a post-op standpoint. It has been just over one year since Ethan's final hypospadias repair, and I'm pleased to report that all is well! We've been given the green light for potty training, and we don't have to return for TWO years!

Oh, and would anyone like to guess who hit the 30 pound mark?

Yup. This guy.

And, as always, it was nice to see those staff members who have played such important roles in our lives over the past two and a half years. From social workers, to nurses, to fellows - many of them have become like family, and we so appreciate who they are to us and the genuine interest they take in Ethan and his story.

For a day at the hospital, it doesn't get much better than that.

Today / Tomorrow

2011-11-20T19:58:00.001-05:00

Today: Slept-in until 8:30.

Tomorrow: Up with the sun.

Today: Went to church, as a family, for the first time in 3 weeks.

Tomorrow: Back to work.

Today: Ethan's 1st movie!

Tomorrow: Ethan's 3rd (and hopefully, last) kidney ultrasound - be gone, hydronephrosis!

Yesterday: Fall decorations.

Today: Christmas tree and stockings.

It's been a lovely weekend here. Hope the same has been true for you and yours!

From the Mouth of My Babe

2011-11-17T14:20:00.001-05:00

Two posts in one week?! Wow; Mama (or, Mom, if you ask Ethan) must have some time on her hands!

Truth is, I should probably be taking a nap. Tonight, I'll be joining Edward-lovers all over Garner for the midnight showing of "Breaking Dawn" (don't judge me!), and I'm sure I'll be feeling quite sleep deprived come tomorrow morning. The things we do for a little bit of entertainment!

Anyway ... moving on.

If you follow our Facebook page you've read some of the cute things that have come out of Ethan's mouth lately. His language is really starting to pick up {insert sigh of relief here} and he's always surprising me with the things he says!

Exhibit A:

I walked downstairs a few days ago to see this on one of our walls.

"Look, mom! It's a A!"

Thankfully, it was written in chalk and when I mentioned that I needed to clean it off the wall Ethan said, "I do it!", and he did. But not before I could snap a picture of it, of course.

Exhibit B:

"Look my monkey face, mom!"

And other random musings:

{Ethan, riding his tricycle around the kitchen}

Me: Where are you going now?

E: I go get groceries. OK, mom?

*****

Anytime we go anywhere these days, Ethan wants to bring a toy car along. One day, I asked him to pick just one and he said, "I want take both-uh-dem with us!". In his world, "both" = any amount more than one!

*****

{talking about Christmas at the dinner table}

Me: And Santa may even bring you some toys!

Ethan, who is currently afraid of Santa: Don't be scared. Jesus is with you!

*****

I sure do love my funny, talkative little boy!

The Other Side of the Table

2011-11-14T12:12:00.000-05:00

In schools, and special education classrooms, and filing cabinets all over Wake County sit green folders. Thousands of them are locked away for safe-keeping, marked with names of students, and filled with IEPs documenting needs and growth and goals. Teachers, principals, and parents join together to create these individualized files, pouring uncanny amounts of time and information into them.

Of the nineteen-thousand green folders belonging to Wake County Public Schools (WCPSS), my signature can be found in a handful of them. From the students I've taught, to the meetings I've sat in on, I've spent my fair share of time devoted to these sacred green beings. I've cried over a few of them, stressed over most of them, and celebrated the strengths in all of them. While a few will always stand out as the "special ones", none will hold a candle to the newest green folder in Wake County's collection.

Ethan's.

As he currently receives therapies through our local Children's Developmental Services Agency (CDSA), and those services will end when he turns three (in just four months!), WCPSS is stepping in. He has already been referred to the school system, and evaluations will begin at the end of this month to see if he will be eligible for services through them.

It's an odd thing, being on the other side of the table - to step out of the role of "case manager" and into the role of "parent" - but it's happening. Although I gave up my days of managing green folders when I left my special education job a year and a half ago, it seems as though those emerald beauties aren't quite finished with me yet.

I've been spending nap-times and night-times filling out personal information, explaining medical conditions, and answering awkwardly asked questions. While I did my best to sympathize with my students' parents during my teaching days, only now can I really empathize with them. Only now can I wonder what my answer will say to a group of strangers about my child - can I feel anxiety about them not seeing what I see (or vice versa). While I may understand the system more than my students' parents, our hearts are the same. Whether I'm a former special education teacher, or an immigrant hoping to gain U.S. citizenship, I want exactly what they wanted.

Only the best for my child.

It's going to be an interesting process, for sure - learning to switch hats - and I'm sure I'll need a few deep breaths along the way. But, it's also an exciting time. I enjoyed reading my students' evaluations because it was an official celebration of their growth, and a map for where to go next. I am a "results" person, no doubt, and this evaluation will give Jeramie and myself the facts we need to continue to do all we can for our son.

Only time (and a few evaluations) will tell if Ethan's green folder will follow him for the years to come, or if it will find its way to the inactive pile. Pray for us (um, me) over the weeks and months to come - that I'll suppress the need to control the situation, that I won't get hung up on numbers and percentiles, and especially for my emotional state if it's determined that Ethan will start preschool in March.

Lord knows there will be some ugly cries happening that day.

Happy Halloween!

2011-10-31T21:34:00.001-04:00

Halloween expectations: Thomas the Tank Engine, blowing his train whistle and collecting candy throughout our neighborhood.

Enter: cold rain and a certain two-year old refusing to wear his costume.

Halloween reality: Chris Cooley making his way through our local mall, snagging extra candy from adoring fans amidst Christmas decorations.

Getting started

Uncle Nick - this one's for you. A football player AND a black eye. You're welcome.

I wasn't kidding about the Christmas decorations.

The rain stopped just in time to visit some of our neighbors, and meet up with some friends, on the way home.

Ethan hit the jackpot on our street, and I'd be lying if I said I hadn't already gotten into the Almond Joys!

All-in-all it was a fun night, and my little all-star was asleep within minutes! I guess it's hard work being famous.

Hope y'all had a fun and safe Halloween! What did you and/or your kids dress-up as this year?

All Things Ethan

2011-10-27T16:00:00.000-04:00

October has been a big month for Ethan, medically speaking. So far, he has met his 4th occupational therapist in two and a half years, contracted hand, foot, and mouth disease, sat patiently through hearing and vision checks, gotten his flu shot, and had his yearly check-up with his orthopedic surgeon. Not to mention our normal routine of development and speech therapies!

All of the above, however chaotic it has made my life feel, has proved that Ethan is growing and developing at an amazing rate. In fact, a nutritionist (who has no prior history with Ethan's case) actually told me that he had gained TOO much weight in the past three months. Thankfully, she followed it up with "but since he's below the 50th percentile, it's OK". I was about two seconds away from going all Mama Bear on her before hearing that. That reasoning may not work for much longer, though; Ethan is climbing the growth chart and, as of that weight check with the crazy nutritionist, had gone from the 25th percentile to the 40th!

Grow, baby, grow.

*******

Aside from the stupid virus, Ethan has been incredibly healthy. That one did a number on him, though. He's had hand, foot, and mouth one other time before, but this time it was a doozy. When Ethan turns down Taco Bell (don't judge me), you know something's wrong! It took about a week for him to fully recover, and all is well now. He was so sick last winter, as a result of the "let him live" mindset, and I'm hoping he'll benefit from a strengthened immune system this cold and flu season.

Getting some love from his Bubbie after a particularly rough night.

*******

Believe it or not, Ethan is only about 5 weeks away from starting the referral/evaluation process for our public preschool program. He has been served by the Children's Developmental Services Agency (CDSA) here in Raleigh since he was 10 weeks old, but those services stop at 3 years of age. If needed (as determined by an IEP team), our public school system will step in and start serving him where CDSA leaves off. The process for that begins around three months before the third birthday, and we're almost there! He has already been assigned a case manager, and our first meeting is scheduled for November 30th. As a former special education teacher, I have so many thoughts and feelings about this whole thing, which will be making their way to the blog soon. For now, let's just leave it at, when in the world did this happen?!

*******

Tuesday morning brought about a visit with Dr. F., Ethan's orthopedic surgeon, and it went exceedingly well. For starters, I typically loathe going to this particular clinic because it always seems to be running behind schedule. However, we were in and out within an hour and a half, including x-rays of his left arm, so that alone made me a happy mama. Add to that the fact that Ethan's x-ray has remained unchanged from a year ago (even without wearing a brace) and I could have skipped out of there! The content smile that spread across Dr. F.'s face, as he watched Ethan play in the exam room, wasn't too shabby either. We got another 1-year pass, and Dr. F.'s permission to forego splinting his arm for now.

I'll take it.

*******

Life is good. God is great. And all His people said...

For MY Baby Book

2011-10-24T21:38:00.000-04:00

This is one "first" I am certain Mama doesn't have documented in my baby book...

My first black eye

It's a complicated story, really. But let's just suffice it to say that Ethan inherited my hardheadedness, in the literal sense of the word, and my eye was the unfortunate target of a wayward goodnight kiss.

That picture was taken not long after it happened, and I could feel it swelling by the second. It gave me an insane headache, but thankfully the pain was eventually relieved by a couple of Advil.

After some ice pack therapy - holy goose-egg, Batman!

I knew it looked rough last night, but I was pretty sure it would look even more interesting today. Of course this would be the week that I have umpteen places to be, starting first thing this morning!

Nope. That's not a bad make-up job.

The swelling is down, at least, but I have a feeling ROY G. BIV and I will be good friends by the end of the week.

As for Ethan? He complained of a headache right before falling asleep last night, but woke up this morning with no evidence of our collision.

And, lesson learned. I will be tucking in Ethan with the light on from now on.

Wordless [captioned] Wednesday

2011-10-19T08:30:00.000-04:00

Me and "Hannah" - 25 weeks - Thanksgiving 2008

Me and Ethan - almost 3 years later

The Pinterest Post & Help Wanted

2011-10-18T16:21:00.000-04:00

As with many internet trends, I tend to be a little late to the game. MySpace was outdated by the time I learned about it, I finally gave into Twitter (and since departed from it) after using Jeramie's account for the longest time, and I doubt I'll ever actually own a smart phone. The same holds true with Pinterest. I've heard friends talking about it for months, but had little desire to sign up for it - a: Lord knows I don't need one more thing to check, or keep up with and, b: I'm not exactly the craftiest person in the world.

OK - so I'm not crafty at all, but whatever.

But, after hearing Ethan's developmental therapist mention all these awesome ideas during our sessions, then following it up with, "I saw it on Pinterest!" I thought it might be about time to try it out. And I am so glad I did! I quickly learned that I didn't need to be Martha Stewart to implement most of the ideas on there, and I could only let it suck me in as much as I let it. (I succumbed to the "Everything" tab once. Never again.)

The one thing I told myself when I finally started using my account was to actually DO all the things I pinned. Maybe not immediately, but the last thing I wanted was some other outlet for me to show off how cool I think I am. I wanted it to be a place for me to keep legitimate ideas, and a place to reference in order to carry them out. What I've learned is that I may not ever be my Mama when it comes to creating things, but I want to be. I want our home to be full of things our family has created, and I want Ethan to feel the pride that comes from creating something out of nothing.

So far, I've tried out a couple different recipes, a few crafts, and I have some big ideas for Christmas gifts this year! If you follow my boards, I can tell you that the Mexican stuffed shells are delicious, and the homemade dryer sheet really works. I think Ethan appreciates a change-up in activities from time-to-time, and has helped with one craft so far.

Jeramie thinks this one looks a little creepy. I'm personally a fan of his multi-eyed friend to the right.

This next little number was a girls' night project and, honestly, I think I would have gone crazy if I didn't have someone to talk to while doing it!

The wreath didn't work on our door, and this space above our mantle was begging for some love!

Felt flowers - the possibilities are endless.

I'm having fun, for sure, and even surprising myself a little! So much so, that I'm ready to tackle another area of our downstairs - the sliding glass door. The only problem is that I'm at a loss for ideas, and Pinterest (nor Google) has been much help. Here's what it looks like now:

I have an extreme dislike for the vertical blinds, and I want them gone. However, we live in a townhome community and need privacy from our backyard neighbors. Curtains are my first thought, but how does that play into what we've already hung? If we do go with curtains, do we hang them the height of the back door, or level with the windows, and will that be too much fabric in one area? Do we get rid of the window curtains altogether and opt for some other type of window treatment? Any and all suggestions are welcome, and appreciated!

And, if you haven't checked out Pinterest yet, you should! I'm pretty sure you won't be sorry.

"New fends"

2011-10-16T17:14:00.001-04:00

When Ethan was born, and we found out about his heart, Jeramie and I were at a loss - to put it simply. We had no idea how to navigate the pediatric ICU world, and definitely didn't know what to do about a baby with a severely broken heart. I had started this blog when I first found out I was pregnant, and used it off-and-on throughout my pregnancy. After Ethan's birth, It quickly became a way to disseminate information to family and friends who were desperate to know what was going on with our sweet baby boy; little did I know, an entire world of blogs about babies with broken hearts awaited me.

Sometime after we brought Ethan home from the hospital, I began to read story after story of these children and found myself connecting so deeply with the words of their mamas. My Google reader exploded with subscriptions and, some nights, I would read into the wee hours of the morning. I can't tell you where I started first, but one blog led to another and I eventually found my way to the Carter Family. I loved reading about Derrick and felt I had a lot in common with his mama, Shannon. Ethan and Derrick are about a month apart, so we were traveling similar journeys together, and sharing cute pictures along the way!

A few months ago, Shannon and I started talking about the possibility of getting our families together and it only took two tries to make it happen! Just this past Wednesday, we met up with the Carters for a few hours of fun and I can't tell y'all how wonderful it was. (I'll try, but I'll also show you lots of pictures to prove it!)

See?

Shannon and I talked as if we had just hung out last week, and our boys (big and little) got along great, too! We started out at Monkey Joe's and watched our babies, with their beautifully broken hearts, jump and bounce with the best of them. About the time Jeramie commando-rolled out of one of the bounce houses, after Justin (Derrick's daddy) had flipped down a slide, Shannon and I looked at each other and said something along the lines of, "we really need to live closer together!".

I love Derrick's feet in this one!

Wheeeee!

Jump around

They are a wonderful family and, I'm here to tell you, Derrick is even cuter in person than he is in pictures. And Jenny Kate?! Lord, have mercy ... those are some beautiful children!

The boys would have bounced right through lunch, but we stopped them in order to head out for some Chick-fil-A, where we spent some more time talking over nuggets and waffle fries.

Mesmerized by Jeramie's disappearing ring trick

Then, we moved the party out to the playground where we finally convinced Ethan and Derrick to sit still long enough for some pictures!

Such handsome boys!

As I hugged Shannon good-bye, I commented on how awkward it felt to say "nice to meet you". It's as if we've known them for years now, and I couldn't be more thankful.

*******

Of course, we couldn't be as close as we were to Ikea without making a stop. (Shannon - thanks for convincing me!) It was Jeramie's first time going and I thought he was going to burst with excitement between all the organizational items AND the shopping carts. As you can see, he and Ethan had lots of fun with those.

I think we made it through the store in record time - upstairs and downstairs in half an hour - and left just in time to visit with family before heading back to Raleigh.

Ethan & MawMaw

Ethan & Auntie Terry the Great (or, "Auntie Terry Grape")

*******

It was an awesome day, spent with some amazing people, and I'm already looking forward to the next time. As Ethan would say, we most definitely have found some great "new fends"!

October Fun

2011-10-11T09:58:00.002-04:00

October might be my favorite month of the entire year. If we could devote one day to Thanksgiving, one to Christmas, and then celebrate a few birthdays with the other 29 days, I would be set. October brings fall perfection to North Carolina in the form of immaculate weather - I actually enjoy being outside in October, sandwiched between September's humidity and November's frost - and who doesn't love hayrides and pumpkin-decorating and fall-scented candles? It makes me all giddy inside!

We got off to a good start with our trip home last weekend, and continued the fun with a trip to the pumpkin patch this past weekend. Since the events of October 1st left us without a camera, some friends of ours took some great ones for us! (And now I officially have DSLR envy.)

This was our second year going to this particular farm, and we were there with other CHD families from Duke. Between the generosity of Farmer Ganyard, and the pediatric cardiology department, it was a day of free fun! And, while the farm itself is great, a price can't be put on having the opportunity to spend the afternoon with people who "get it". Whose child's chest looks just like Ethan's, and who brings out the hand sanitizer just as quickly as I do.

Ethan was into it so much more than last year and, before we knew it, three hours had passed! We had such a great time and I would be lying if I said I haven't thought about going back again before this blessed month is over. A huge "thank you" goes out to Duke Children's and Ganyard Hill Farm for giving us the opportunity to create such cherished memories, and to our newest friends for capturing them for us!

Ready for our hayride

Handsome boy!

Checking out the corn maze

"Hey Dad - I've got this"

New friends!

Wordy Wednesday

2011-10-05T21:47:00.000-04:00

Happy hump day, folks! I know y'all are reading this from all across the U.S., but we are having some fabulous weather here in North Carolina! I had a feeling today was going to be a happy day, and I was not disappointed by sitting in a friend's living room, chatting with windows up and sweatshirts on, snuggling with sweet babies and watching our ~~little~~ big boys play. A very happy day, indeed!

I was uploading photos from this past weekend, and came across a few that I wanted to share. We started it off right with a trip to the park on Friday, then followed it up with some party-in-your-mouth homemade pizza for lunch. (Seriously, it was so good.)

Ethan absolutely adores his buddy Jay (and I think his mom is pretty fantastic, too) and it's evidenced by this video I took of them.

When it comes to Jay, Ethan's motto is "anything you can do ... I want to do, too!" Sing a silly song, swing to the top of the trees, share toys - you name it and, if Jay does it, so will Ethan. It kind of makes me melt a little inside.

On Friday night, we headed east on I-40 to visit my parents. We got caught in a few storms on the drive there, but the pre-storm sky made up for having to drive two hours in the rain.

Then came the lightning. I was mesmerized by it and spent more time than I would like to admit trying to catch the flashes with my dinky little point-and-shoot. It was unbelievable!

On Saturday night, my parents watched Ethan so that Jeramie and I could go out on a double date! Jesse and David have been friends of mine for years and years, and I actually introduced the two of them. They are now married with the most adorable almost-three-year-old, and it was so nice to spend some quality time with them, sans hyper toddlers.

After an incredibly delicious dinner, we took it back to our high school days and went out for some go-karting and putt-putting. I felt fifteen again and it seemed like the evening was one big laugh-fest - especially come Hole #4 of Jungle Golf.

It was a particularly treacherous hole. Picture this, if you can:

You had to hit the ball just right to cross a stream, that led into a larger pond (so we thought), in order to get to the hole. I was up first and, of course, my ball went right into the stream. We all scrambled to catch it before it was gone forever (because, you know, we couldn't have just gone to get a replacement) and pure hysteria broke out. Jeramie stabbed himself in the throat with his golf club as he vigorously leaned down to catch the ball. With the rescued ball in hand, he literally fell to the ground in pain and then we realized our camera had taken the ball's place in the stream. I watched it sink and saw bubbles rise to the surface of the water, and Jesse was able to grab it within seconds. Once Jeramie recovered, we finished the hole and - with a sore neck, ridiculous putting scores, and a drowned camera - we moved on. But, not before realizing a small gate protected wandering golf balls from forever disappearing into the murky pond ... all that for nothing!

Lesson learned. (And, no. Not even a bag of rice was able to save our camera from its late night swim.)

Famous last words: "I'm going to take some action shots!" - Pre Hole 4 Hysteria

Overall it was a great weekend, and Groupon Goods could not have been released at a better time. I will absolutely take that $68 digital camera, thankyouverymuch.

Here's to more happy days ahead, however wordless or wordy they may be.

Busted.

2011-10-03T23:07:00.000-04:00

Tonight, I found a quick and easy Halloween craft on Pinterest. Thinking I had all the supplies on hand, I got the family psyched up aboutcraft night.

While Jeramie cleaned up from dinner, Ethan and I went upstairs to gather cotton balls and dental floss. It was then I realized we only had about 4 of the 28 needed cotton balls. Bummer.

I put a shirt on Ethan (don't all of your children run around half naked?!) and went out for a quick Wal-Mart run (is there even such a thing?!). We got what we needed and headed back home "super fast" as I knew I was working against the bedtime countdown clock.

Although the project turned out really cute (sorry - no pictures ... that's a different story for a different post), it was what happened in our neighborhood that I wanted to preserve here on the bloggy blog.

There are two stop signs between the entrance of our neighborhood and our house. Admittedly, I practice more of the "rolling stop" for the first, but always make a point to completely stop at the second. As we were headed home tonight, I rolled through the first stop sign (maybe more quickly than usual) and then I heard "uh oh" from the backseat.

I questioned Ethan about what might have happened to induce the "uh oh" - a dropped toy? ...a spilled drink? - and after contemplating my question for a few seconds he stated, ever so bluntly, "Red means stop".

Whoops.

I guess all that pretend play is going to have a positive impact on more than Ethan's language. My neighbors can send their thanks to Ethan's developmental therapist!

It is finished.

2011-09-30T15:20:00.001-04:00

It only took us 5 months, but we finally completed our gallery wall...

Phase I

Phase II

The finished product!

...just in time to update the photos!

My next project? Another picture frame dry erase board. Watch out, y'all; I'm getting crazy over here!

Heart Walk 2011

2011-09-28T20:30:00.000-04:00

Well, the Heart Walk has come and gone and I can't help but feel like I do after any big event. There is so much preparation and excitement leading up to it and then it's over, justlikethat. In the moment, however, there was much to be experienced and celebrated!

Friends

Family

Life

This was our family's second year participating in the Heart Walk and it was even bigger and better than the first! There were exactly 50 of us who walked together as "Team Ethan" and, just like last year, I was overcome with emotion to see us weaving our way through the crowd - strollers, dogs, and all. My sister was also able to walk with us this year and that, in and of itself, made me want to cry!

Love that girl.

Team Ethan - 2011

And we're off!

So much love.

About 30 minutes before the walk started, I was approached by a reporter with one of our local news stations. I don't know what led her to our group, but I answered with a resounding "YES!" when she asked if she could interview me and Jeramie. As I expected, she was completely shocked that we were there in honor of our two-year old son, and I even saw tears in her eyes as I told her a bit of Ethan's story. I was nervous as all-get-out to see the finished product - humidity-infused hair, the ugly cry, and my nervous voice had potential to be disastrous - but I was pleasantly surprised with the story. I think she did a great job highlighting Congenital Heart Defects in the midst of an adult-centered event, and I couldn't be more thankful for the opportunity to share our story and raise awareness for CHDs. Check it out!

"I'm two!"- three fingers is the new two, in case y'all didn't know

Last year, Team Ethan was able to raise a little over $2,300 for the AHA. I set a lofty goal for this year and, while we didn't meet it, we did beat last year's total by more than $400! I am so proud of our fundraising efforts and I want to sincerely thank all of you who donated to our team. Your money will go towards helping hearts all over the Triangle, and we are most appreciative that this guy will also benefit from your generosity.

My heart is so very full.

I'll leave you with a few more pictures from the day, and many, many thanks. We love y'all!

Me and my survivor.

Trying out the hula hoop.

Our newest heart friend, Michaela and her mom, Ashley. Their family drove all the way from Wilmington to walk with us!

Getting some help from Mr. Randy - an adult CHD survivor and the hubby of Ethan's developmental therapist!

My sweet boy.

We did it!

Rainy day fun

2011-09-24T21:46:00.000-04:00

Somebody has gotten a lot of practice over the past couple of weeks!

(Also, we're loving the new editing options offered by YouTube ... YEAH for fancied-up videos!)

Bedtime Sweet Talk

2011-09-23T22:59:00.005-04:00

Ethan and I braved the pouring down rain today and took ourselves to the library this morning. It was a fun little outing, despite all the wet stuff, and we even took a second to splash in the biggest puddle we could find. Of course, that ended our adventure as Ethan's pants were soaked up to his thighs, and his beloved stuffed worm managed to take a swim in said puddle.

(I rescued it only after Ethan calmed down long enough to tell me, through tears, that Slimey was "over 'dere in the wad-er".)

Puddle splashing fail.

The library itself was a good time, though. Ethan walked swiftly between shelves of books, picking one up long enough to judge it by its cover, then moved on to the next. He ended up with two books in his bag - one from the Curious George series, and one about diggers and dump trucks - and Mama walked out with The Happiest Toddler on the Block. I'm only a few pages into it, but I've already found something I've connected with - Bedtime Sweet Talk. The idea behind it is that, each night, you remind yourself of a few happy moments or successes from the day.

According to Dr. Harvey Karp,

"The amazing thing about bedtime sweet talk is that pretty soon you'll start noticing how much more is going right in your life than you thought." - The Happiest Toddler on the Block, revised edition

I like it so much that I think I'll try to incorporate it here on the bloggy blog. However, while I hope to make this a personal nightly routine, let's not even pretend that I'll actually post about it here every night. This is the same blogger who can't even keep up with "Wordless Wednesday", for goodness sake - and, plus, some things are just sacred.

So, without further ado - Bedtime Sweet Talk, Volume 1...

*******

Sweet Moment #1

It's no secret that I'm a fan of the blog world. I read a lot (a lot) of blogs and, more often than not, I come away blessed. What I'm about to share isn't about some wildly successful day of parenting, but my soul is refreshed because of two women, and that is very sweet indeed.

Today I read two particular posts that really spoke to my heart. Becca wrote about a deeply personal moment of time that happens for many would-give-anything-to-be-breastfeeding-my-baby mothers. I had so easily forgotten about the things I learned about myself, and the conversations I had with God, in that teeny tiny breast-pumping room. Her post today was a reminder that God is still faithful to hold my hand through the rough days, whether that's sitting by a crib in the ICU or keeping my two-year old from destroying everything in his path.

Then, I moved on to Kirsten's blog where she wrote about how Ewan's broken heart has taught her how to love. This touched my core and if I've read it once, I've read it a thousand times today. "My prayers had gone from, 'God, please heal my baby,' to 'God, please help me to love him exactly as he needs.'" Amen, Mama Ewan. Amen.

Sweet Moment #2

Even though this technically happened yesterday, I need to put it in writing today. Yesterday evening, I went to check the mail and found an anonymous gift in our mailbox. "Blessed" doesn't even do my feelings justice. One day, I'll need to be able to come back here and remind myself of God's goodness and His grace. Someday, I'll need a reminder of the ways in which we've been blessed, and I'll need it to be a catalyst to bless others. I'll need a reminder to praise God for all that we have, and I'll need to remember to hold everything we do have with an open hand.

I have no idea who you are, but I want you to know that your gift to our family has kept my eyes moist since yesterday evening. It not only helped us in a time of great need, but it reminded me of all the ways God has taken care of us since this journey began. I want you to know that just hearing that someone is still praying for our family did wonders for my soul.

I praise God for His provision, and for you, and I pray that you will find yourself surrounded by the Lord's favor. Thank you.

Sweet Moment #3

OK - so, switching gears to a very successful moment from today...

Ethan peed AND pooped in the potty tonight!

I know y'all must be thinking, "How is she gonna go from talking about the Lord's favor to toddler poop?!" but I just had to. And the look on my sweet boy's face once he realized what he had just accomplished? Pure joy.

Even after the fact, as I was getting him dressed for bed, I reiterated how proud I ~~was~~ am of him. He looked up at me with those big, brown eyes, smiled, and said, "Ethan make Mama happy."

I pray one day he understands just how right he is.

*******

Good night, friends. May your dreams be sweet tonight, and may tomorrow be filled with many sweet moments of your own.

Oh, boy.

2011-09-21T15:25:00.000-04:00

Just when I thought (and said) there was nothing else Ethan could do in his room besides sleep...

Tell me, please, how a two and a half year old manages to pull off his mattress, and get into a doubly locked closet?!

At least the diaper stayed on this time.

Wordless Wednesday - Friday Night Lights

2011-09-14T13:52:00.001-04:00

September 14th - Then and Now

2011-09-14T07:30:00.001-04:00

My mind has been filled with dates these days, and today is no exception. (Birthday shout-out to my college roomie, Chelle - welcome to the "almost 30" club!) But what tugs at my deepest heartstrings today is the fact that Ethan is now two years out from his most recent open-heart surgery.

It blows my mind that he's gone from this...

Post-Op: September 14, 2009

...to this...

September 10, 2011 - his tallest block tower to date!

...in a matter of two years.

I don't really know how to explain my feelings, but when you're talking about the heart (and a sick heart, at that) there is so much that can happen in two years. I think I'm just in awe that Ethan has made it this far, with only needing one intervention.

Thank you, Versed. Your presence was much appreciated.

Somewhere in the dark, ugly, pessimistic places of my mind I think I gave the surgeon a great, big (silent) "yeah right" when he told us how long Ethan's conduit should last. It is such a temperamental thing, and can go from well-behaved to acting-up in a matter of months. I am thankful that we have been on the (mostly) well-behaved side of that, and that the stent seems to be keeping things nice and open in there.

Now, we wait.

The surgeon's estimate was four-to-eight years, so we are halfway to the low-end of that estimation. You just may find me dancing in the streets if we seriously make it to that four year mark! Based on what we were told back in May, it's likely - praise God!

On Sunday, I heard a story of a young man with a heart defect similar to Ethan's. He, too, had problems with his pulmonary artery and had his last open heart surgery when he was three and a half. Today, he's 21 and is just now approaching "go time" for his next one. Seventeen years! Heart Mamas - can you imagine?! How wonderful would it be to give our children a seventeen year break from all of this mess?? I pray that for all of us, and especially for him...

Dream big, kiddo.

To El Roi - the God who sees - praise and thanks for watching over his broken heart, which has absolutely captivated mine.

Here's to the next two years, sweet boy. I will forever be on your side.

Many thanks!

2011-09-13T14:35:00.000-04:00

Just a quick note of thanks to everyone who helped me reach my personal goal for this year's Heart Walk! I set my sights high at $500, and y'all were generous enough to allow me to surpass that - THANK YOU!

As a team, we are about halfway to our goal of $3,500 and we still have two weeks to go. If you haven't yet donated, and would like to, there is still time! Every little bit helps.

Did you know that just $30 provides one pediatrician, nurse, or emergency health care provider with the specialized training they need to recognize and treat cardiovascular diseases in infants and children? If you have an extra $30 to spare, I would challenge you to donate it to the American Heart Association in honor of the nurse who recognized something "just wasn't right" with Ethan. You can make your donation under Ethan's name by clicking here.

Also, a major shout-out to the best sister and aunt ever. Jessi took hours out of her day on Sunday to hold a cut-a-thon at our local Aveda store and raised over $150 for Team Ethan! Jess - I am so proud of you for using your time and talents in such a positive, beneficial way; the Tri Mulli loves you!

*******

I'll be back tomorrow with some thoughts and photos I want to share with y'all. Does September 14, 2009 ring a bell to anyone?

Nine Years

2011-09-11T07:31:00.000-04:00

Nine years separates the greatest American tragedy I've known in my lifetime from the greatest personal tragedy I've ever endured.

Ten years ago today, I was in my sophomore year of college at UNC-Greensboro and was walking to my early morning statistics class. I loathed that class and often thought of every reason possible for why I shouldn't go. Much to my pleasure, I walked towards the classroom that morning to find a simple note taped to the door, "Class canceled". I turned around, with some pep in my step, and got halfway through campus before I realized something was terribly wrong.

People in front of the Caf crying. Yelling. On cell phones. Frantically running back to dorms.

From there, my memory gets fuzzy. Unlike most of you, I don't know exactly where I was when I learned what was happening to our country. I do remember being in front of a TV when the second plane hit, but I can't tell you who I was with, or where I was watching it. I remember calling my family and feeling very afraid, yet incredibly thankful that I had no personal connections to lives lost that day. Many of my friends could not say the same.

I remember watching President Bush address our nation later that evening. I can tell you exactly where I was at that moment, exactly who was in the room with me, and even specifically where everyone was sitting. Isn't it funny how memory works? I imagine if I had been blogging back then (or had been better about journaling), I would have the exact details of that day filed away in archived memories. I would be able to re-read my words and recall the devastation, the anger, the sadness.

Kind of like a year ago.

One year ago today, I was at home in Raleigh with my husband and friends. Ethan was away for the weekend and us adults were getting ready to tackle our biggest home improvement project to date. Then, I got the call. I can't re-read my words without a knot forming in my stomach and tears flowing from my eyes. I've spent quite a bit of time talking with someone who's paid to help people through stuff like this and, while I've found a lot of healing in the past 6 months, the sadness is still so real.

I miss him.

So on today, the tenth and first anniversaries of such tragic days, I remember. I grieve. I pray that we will one day be reunited with those that we love so dearly and miss so deeply. I hold on to the hope that Michael is in the presence of our Creator as I type this. I pray for those who Michael, Jenn, Aimee - and the thousands who died on September 11, 2001 - left behind. The ones who woke up this morning with tear-stained cheeks and lumps in our throats.

May our grief impact the way we relate with those around us. May we feel comforted by His love and move forward in hope.

Two and a Half Years Later

2011-09-08T18:08:00.000-04:00

Today, I am the parent of a two and a half year old. TWO AND A HALF, people!

Nicole Campo Photography

It just so happened that I signed up for a free Chick-Fil-A breakfast this morning, so we started our day off right with some chicken minis. All I've got to say about that is: Ethan is surely his Mama's child. I've never in my life seen him eat breakfast with such enthusiasm!

Well, maybe on cinnamon roll day, but that's another story for another time.

*******

I'm not really in the letter writing mood today (I still love you, Ethan) but I did want to jot down some things here for the baby book. Ethan doesn't necessarily seem older to me but, once we hit these half-way marks, I know it's all downhill from here. First comes fall, then comes Thanksgiving and Christmas; then we celebrate the new year and, before we know it, Ethan will be three! It just doesn't seem possible.

Nicole Campo Photography

At two and a half, Ethan stands over 3 feet tall and is hovering around 28 pounds. He has a vocabulary the size of Texas, and we continue to work with him on his language development. Some of the funniest things he has said lately are:

-When making a choice between two activities, foods, etc. he will purse his lips together, smack them, and say, "Ummm ... let's see".

-A couple of weeks ago, there was a strange sound outside. Ethan looked at me, surprised, and said, "What's that?!" I told him I wasn't sure and asked what he thought it was. He looked out the window, began scratching his head with his index finger and said, "Um, prooooooobably .... a cat!"

-He has practically memorized various stories from "One Fish Two Fish" and, while in Ohio, he picked up a toy phone and said, "Hello? Hear me Joe? Oh no! Mouse cut wire. Goodbye!" and hung up.

He keeps us laughing, that's for sure!

Nicole Campo Photography

I am always amazed at the things he picks up on. From memorizing parts of books, to remembering past events, he is taking it all in. I have to remind myself that he is always watching, always listening. A good friend of mine shared a quote the other day that said, "Don't worry that children never listen to you; worry that they are always watching you." This was so good for me to read, especially on a day when my bad attitude was rubbing off on him. My number one prayer as a parent is that I would be so full of love, joy, peace, patience, et. al., that it would spill out onto Ethan. I want to show him appropriate ways to behave, not just tell him. Let's just say I have a lot of work to do on my end!

In many ways, I think Ethan is going to be a lot like me. He has his Daddy's humor, no doubt, but I see so much of myself in him. He's a bit socially awkward right now and is learning how to interact with his friends. For those that only know the 21st century Joye, you may be surprised that I would describe myself as socially awkward. Or, maybe not! If that description doesn't seem right to you, just ask my friends from back home; I'm sure they will put your mind right to ease!

But, Ethan is smart as a whip. The things he knows, and the words he can say, is truly unbelievable. Just yesterday he asked to read "The Very Hungry Caterpillar". He got the book out of the basket, looked at the cover and said, "Caterpillar! Caterpillar. kuh-kuh. Caterpillar starts {with} k!"

Nicole Campo Photography

He gets so frustrated when his body isn't able to do what his mind is telling him he can. At two years old, I would sit in the middle of the floor and bang my head against it (or a wall, whichever was closest). It made my mama a worried mess, of course, but the doctor told her it was a sign of intelligence (ha!) and that I would stop before I hurt myself. He was right. Granted, Ethan isn't hitting his head on concrete, but I see that level of frustration rise up in him when he can't figure something out.

Nicole Campo Photography

God bless my mama. Parenting the two-year old me is no easy task! I can only pray that I show Ethan half the grace and patience she showed me.

Everything else seems to be falling right into place with Ethan. After a brief period of resistance involving his big boy bed, he is sleeping in it beautifully these days. Next up will be potty-training, but I don't even plan to touch that one with a ten-foot pole until sometime this winter.

Nicole Campo Photography

I can't say that this is my favorite age; just being honest. (I still love you, Ethan.) While I'm thankful for the lessons this stage is teaching me, I very much look forward to incorporating some reasoning and logic into our days! I've kind of labeled this time as "the age of extremes"; there just doesn't seem to be much middle ground, whether we're talking about eating or behavior.

However, on those hard days when I feel as though I'm ruining my child, I think back to the time when I never thought he would be here. And not just figuratively. When I think about parenting through the lens of possibly not getting to parent at all, it changes things.

Nicole Campo Photography

He changes things.

O-H-I-O!

2011-09-06T17:32:00.004-04:00

Yesterday, I was in Ohio. As I'm back in Raleigh today, doing laundry and reflecting on our trip, I'm simply amazed at modern day travel. We didn't even fly and, yet, I still find myself in awe that we can be three states away from home at breakfast time, and be back in North Carolina for dinner.

Obviously, I don't get out much.

In fact, Cleveland is the second-most Northern city I've been to. It follows behind Portland, Oregon and just beats Philadelphia, Pennsylvania for that #2 spot. Those three cities form the extent of my Northern-knowing ways, and except for wanting to visit a few other cities up there (and more return trips to Ohio), I think I'm OK with staying below the Mason-Dixon!

Jeramie, Ethan, and myself headed out of North Carolina around 6:00 on Thursday evening. Our destination was the home of some very good friends of ours who moved back to Ohio almost a year ago. We hadn't seen Mike and Amanda since April and, since then, they've moved into an awesome home and added a sweet baby boy to their family. A drive up north to celebrate this new time in their lives has been a long time coming.

The trip up there was much easier than I anticipated. (Coming back was a different story, though, thanks to four states worth of rain and fog too thick to see through.) I had no idea what to expect from a two year old in the wee hours of the morning, but I prayed and God was faithful. Ethan behaved beautifully, slept 5 of the 9 hours, and was easily entertained with DVDs, snacks, and new games. Jeramie and I remained awake and alert (even well after arriving in Cleveland), and our little-car-that-could chugged up the West Virginia mountains with the best of them. We encountered toll booths (a first), tunnels (Ethan's favorite), and turnpikes (what's up with those roads being so bad?!). Jeramie and I passed the time with conversation starters, spotted 24 out of the 50 state license plates, and only had to make one call to AAA. It was such a fun adventure!

Beautiful sky somewhere in northern North Carolina/southwest Virginia

Rolling clouds as we were leaving Ohio

Play-Doh, a muffin pan, and golf tees = endless possibilities!

Napping in North Carolina

Of course, the best part of the trip was spending time with our precious friends. Just to be face-to-face with them again, having the opportunity to talk about the highs and the lows, and to live life together - even for a moment, was what I needed. I'm glad that drive is pretty easy; I see us making it multiple times over the years.

Love her.

And him.

And them.

Family Zoo trip!

Silly boys.

Melts my heart.

Ethan had a blast with Uncle Mike.

Aside from all the baby-snuggling, meal-sharing, game-playing, smore-making, conversation-having fun, we got to do a little sight-seeing, too. On Friday, we found our way to Lake Erie/Huntington Beach, Saturday carried us to the Cleveland Zoo, and we were blessed by attending Mike and Amanda's local church with them on Sunday.

Family fun at the beach.

He did this a lot.

And this.

Anderson wasn't quite as impressed.

Going to take a dip in Lake Erie.

Ready for the zoo!

Feeding Travis the giraffe.

Checking out the sea lions.

This goat was all about some human interaction.

Y'all, I can't even tell you what a long weekend away from the routine of home, and in the presence of such great friends, did for this Mama's soul. I'm sure you get the idea.

Twins!

Ohio, we will be back. Take care of our friends in the meantime, and work on cooler temperatures for the next go 'round, would ya?

Love you guys!!

Wordless Wednesday - The Comparison Edition

2011-08-31T10:21:00.000-04:00

What we've been up to...

2011-08-29T21:10:00.002-04:00

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!

All of Me

2011-08-25T16:55:00.002-04:00

"All of Me" from Ryan Lynch on Vimeo.

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

Haircuts with Heart - For the locals

2011-08-20T10:25:00.000-04:00

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!

An interesting discovery

2011-08-18T18:51:00.000-04:00

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.

Today.

2011-08-15T16:26:00.003-04:00

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 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.

Wordless Wednesday - Gymnastics Edition

2011-08-10T10:22:00.003-04:00

I can't make this stuff up...

2011-08-09T22:39:00.000-04:00

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.

Nap time - Revisited

2011-08-08T14:14:00.000-04:00

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!

Nap time blues

2011-08-06T22:28:00.000-04:00

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.

Wordless Wednesday - Jump Around!

2011-08-03T12:51:00.001-04:00

Here and there

2011-08-02T16:38:00.000-04:00

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.

Our weekend, in numbers

2011-07-31T22:13:00.010-04:00

Friends who work(ed) with deaf children, dressed in black: 3


Hanging out at the super fun, bouncy house birthday party

Meals shared with friends: 5

All that bouncing worked up an appetite!

Shirtless Musicians: 2

I'm thinking this was the 3rd of 4th round of "Little Bunny Foo Foo"

Lives celebrated: 3


Anna - the most fabulous five year old I know

An answer to years of prayer. A friend's dream come true.

Andrew James: a 9-pound bundle of perfection. Born this morning to our very dear friends, Billy and Becky.

Dollars raised for the AHA: 200
(added to the $155 raised throughout last week equals a current total of $355! - Donate here)

Miles driven: 369

Cities visited: 3

Happy, exhausted two-year old: 1

Hope y'all had an equally blessed weekend!

Is this thing on?

2011-07-22T14:25:00.004-04:00

Update: As of July 29th, Team Ethan has raised $155. THANK YOU!

*******

Tap, tap. Um, hello?? Is anyone out there?

A few weeks ago, I published this post. Now, maybe I'm just an over-achiever, but I was pretty sure it would have warranted some participation by now. (Not to diminish my hubby signing up but, I mean, he kind of has to.) In fact, I went back to the archives to see where we were this time last year, and I knew I wasn't crazy! By July 29, 2010, Team Ethan had already raised $100 through 7 team members.

Today is July 22. That means, in seven days, I would like to see us meet (and exceed) our numbers from last July! We are currently two members, and $10 strong. Seven days to raise $90 through seven people seems more than do-able; right?!

Signing up is incredibly easy (especially if you walked with us last year) AND if you would pledge $10 when you sign-up, then ask a friend to match just half of that, we would meet our goal for next week in no time!

Here are the links you'll need...

My personal donation page - for those who would like to help me reach my goal of $500
Our team page - to join our team, or to make a general team donation (our goal: 35 team members raising $3,500)

Remember - the minimum online donation amount is $25. Cash and checks are accepted for donations less than $25 (or for those who aren't comfortable donating online) and a written receipt will be given to you for tax purposes.

So, for real this time ... who's with us?

Tardy, Thoughtless Thursday

2011-07-21T15:25:00.002-04:00

Good News!

2011-07-19T16:17:00.004-04:00

Thank you for the prayers you sent up on behalf of Ethan today. I am pleased to report that we had a most EXCELLENT morning at Dr. I's office!

Since January, I have seen a significant increase in the way Ethan comprehends what we're saying to him. On the way to his appointment this morning, I talked about all the things Dr. I would want to do. I was honest about the things that might not feel so great (EKG stickers, the squeeze of the blood pressure cuff), and I reassured him about the things that wouldn't hurt (Echo gel, checking his pacemaker). After I talked for a couple of minutes, I paused to let it soak in.

"Okay", I heard him say from the backseat. And that was it.

My son, who usually fights us tooth and nail just to see how tall he is, held out his arm for the blood pressure cuff and sat perfectly still through the duration of the reading. In fact, when I asked if he wanted to sit in the chair by himself, or if he wanted me to hold him, he responded so confidently with, "Sit by self." And he did. He cooperated through blood pressure (105/59), temperature (97.5), and oxygen saturation (97%) readings, an echo with EKG, and a pacemaker check ... all on his own with no tears, no fighting, no fear.

I praise God that He is in the midst of answering one of my original prayers; to protect Ethan's mind from anxiety and worry, and to equip him with the patience and tolerance he'll need for his lifetime of special needs. I am humbled, and so very thankful.

So, onto today's report. For starters, Dr. I was super impressed with Ethan's growth! He weighed 27.8 pounds (30th percentile ... 30th percentile, y'all!) and stood 35.5 inches tall (45th percentile). Needless to say, we're all thrilled with those numbers!

The echo results remained unchanged from the post-cath images back in May. This means the stent is doing its job, and doing it very well! The pressure gradient is still in the low 50s and, while not perfect, is just right for Ethan right now. On top of all that, his heart function looks great ... we'll take it!

The only concern resulting from today's appointment is that Ethan's top chambers seem to be entering into some sort of arrhythmia. Dr. I has seen this twice now, both times during the pacemaker interrogation. We're not sure if his atria are speeding up as a result of that process, or if he's experiencing this irregular rhythm on a regular basis. The last Holter report came back fine, and nothing of note is showing up on the pacemaker call-ins, so we're just going to keep an eye on it for now. If any Mamas of pacemaker-dependent kiddos have experience with this, I'd love to hear it!

So, with all that said, what exactly does a cardiologist do with an extraordinarily active two-year old with stellar weight gain and "normal" heart function?

He smiles and says, "See you in 6 months."

"If you believe, you will receive whatever you ask for in prayer."

-Matthew 21:22

In other news...

2011-07-18T21:38:00.000-04:00

Ethan has an appointment with his cardiologist tomorrow morning. This will be the first time, since his cath back in May, that anyone has laid eyes on him and his heart.

I feel good about it but, as always, I would appreciate you praying along with us. We're hoping for cooperation from Ethan, an excellent report from Dr. I, and orders for a 6-month return visit.

Thanks, y'all!

And, just because he cracks me up...

Goin' to the Chapel

2011-07-18T17:23:00.000-04:00

This past weekend was a big weekend for our family!

A little over a year ago, Jeramie's brother, Nick, proposed to his super sweet girlfriend, Lori Ann. While we were all on our family vacation last June, they asked the three of us to be in their wedding; me as a bridesmaid, Jeramie as a groomsman, and Ethan as one of two ring bearers. We were thrilled, and have spent the past few months preparing for their big day!

I was a worried mess leading up to the wedding, though. Partly because I just get like that with any big event, but also because my calm 15-month old from last summer has turned into quite the opinionated, active two-year old; I had no idea what to expect from him. I found myself showing him YouTube videos of ring bearers and bribing him with fruit snacks and a wooden train.

I feared the worst as we practiced at home and I watched him throw down his pretend pillow, throw himself on the floor, and yell "NO!" I imagined my mama carrying him out of the sanctuary, kicking and screaming.

I made a plan for every chunk of time over the weekend ... an early nap, videos for any down-time, and a "bribe bag" for the ceremony. Mama was there for back-up since Jeramie and I would be focused on our bridal party duties, and I really don't think we could have done it without her!

We talked a lot about "quiet feet" and "inside voices", especially at the church. It occurred to me, as I comforted Ethan after being startled by the organ, that he has never stepped foot inside a traditional, Baptist church. To him, it was a whole new world to explore. And reverently explore, he did.

Even with all that preparation, I was still a ball of nerves. It wasn't until we lined up to begin our walk down the aisle, and I saw him take the flower girl's hand, that I breathed a sigh of relief. He was going to do it!

I beamed as I got to my spot at the altar and proudly watched him walk (quietly and slowly!) to me. Keeping him quiet was a different story, however, and I sent him to sit with my mama and sister shortly after the ceremony began. Aside from a few "Mama!"s coming from the pews, he did great! In fact, the whole day went exceedingly better than my imagination led me to believe it would. He made me one proud Mama, for sure, and had a blast in the process!

Congratulations Nick and Lori Ann! We were honored to be a part of your day and we pray blessings over the days to come. We love you!

i hope that never happens again.

2011-07-14T14:38:00.001-04:00

If it was possible to upload mental images to computers, I know just what picture would accompany this post. Then, if I could somehow let you feel what I felt in the moment that mental snapshot was taken, I would certainly add it, too.

(It probably would have made a nice Wordless Wednesday post, seeing as how I've not been able to keep up with the simple act of uploading a few pictures once a week...)

Some friends of ours invited us to go swimming yesterday, and Ethan and I happily accepted their offer. He's learning to love the water a little more each time, and I don't really pass on the chance to sit in the sun! This particular pool is really nice, with a good sized kid-friendly area. Usually, Ethan is content with playing there but was extra distracted yesterday; he wanted to do anything but what I asked him to do.

After umpteen times of him walking around the perimeter of the pool and ignoring my requests to play in the kiddie area, I decided we would take a break for a snack. (I'm starting to see a strong correlation between his attitude and the length of time since food last entered his belly.) He sat on the concrete, kicking his feet in the water while eating his pineapple, and stayed right where I asked him to.

Until he got up.

Thinking back now, it's like I was watching him in slow-motion, but it all happened so quickly at the time. He stood up, started to walk away from us, and I asked him to come back. He kept walking, simultaneously eating his snack, and got closer and closer to the edge of the pool. (Can you see where this is going?)

"Surely he'll stop", I thought to myself.

I called his name louder, stood up from where I was sitting, and in mid-bite he walked right off into the water.

My eyes were locked on his body the entire time. I took two huge steps through the wading pool. My mind was racing.

"Swim, Ethan, swim! ... but he doesn't know how!"

Two more steps into the deeper end.

"Hold your breath. Please hold your breath."

One last leap got me to him.

By the time I wrapped my arms around his body, he had already managed to get his head above water. To feel pride in the midst of that much fear felt a little strange, but I showered him with praise. He was terrified and clung to me as we walked out of the water.

"You're OK", I kept telling him, as I kissed his forehead and listened for any rattled breathing. He coughed up small amounts of water and recovered physically well before he calmed down emotionally.

As I sat with him on the lounge chair, I felt a surge of adrenaline run through my body as I started to think about what could have happened. What if I had been 10 steps away, instead of 5? My legs started to shake at the thought and I silently thanked God for the instincts with which He has equipped us; a child's to doggy-paddle, and a mom's to act quickly.

I pulled Ethan closer, all the while checking his breathing and heart rate. I considered packing up and leaving, right then and there, but knew that would be projecting my fear onto Ethan. He was ready to get back in, after all.

So we stayed, and I reinforced our rules for being at the pool. He became much more compliant after the fall (and his snack), and we were able to enjoy the rest of our time in the water. I watched him closely, held him closely, and remained so very thankful that he truly was OK.

But ... I'd be lying if I said I didn't come home and look-up "dry drowning symptoms".

And swim lessons.

through the eyes of a child - volume two

2011-07-07T14:56:00.003-04:00

Last summer, I posted this. I still find myself thinking back to that sweet story and praying that Ethan will be protected from the harshness that can come along with being "different". To be honest, I forget that his arm isn't, what you would call, normal. In the same way that I think a scar-less chest looks a little strange, I've come to see his special arm as a part of who he is.

It doesn't keep him from doing anything and, for the most part, I don't notice other people noticing it as much. Or, maybe I'm just less sensitive to it? The moms at the pool used to be the worst ... peering over their large, designer sunglasses while their "perfect" children frolicked around the splash pad. Last summer, I found myself wanting to respond with the most snarky comment I could muster. This summer, it's a non-issue.

I say all that to say that I am so not hyper-focused on his arm these days. To the point where, if a sweet little girl comes up to ask me about it, I have to stop for a second and figure out how to answer. Do I take the anatomy route and explain, in child friendly terms, that he was born that way? Do I compare Ethan to the beloved Nemo and go down the "everybody's different" road? I'm still tweaking my answer, but I was given the opportunity to practice it this past weekend.

*****

We were at a cookout with some friends on Saturday night and we knew about half of the people there. At some point during the evening, one little girl (who I didn't know) asked a friend of mine about Ethan's arm. I had no idea the conversation had even taken place, until I heard her explaining it to her little sister later on. The younger sister's curiosity got the best of her and she, along with the big sister, came up to me while I was holding Ethan on my hip.

Ethan was crying at that moment and they were doing everything in their power to console him. Hand-feed him bites of a brownie? You know it. Kiss his leg and tell him, in the most precious baby voice ever, not to cry? Definitely. The little sister touched his left hand, stroked it ever-so-softly and asked, "Is his arm OK?" The tender way she said it melted my heart. While Ethan was in the throes of a two-year old meltdown, she had nothing but complete concern for his potentially hurt arm. I explained that his arm was fine, and found myself driving down Anatomy Lane. Before it was over, I had them feeling arm bones, wiggling their thumbs, and bending their fingers. They were SO into it and accepted my basic explanation that he was just born that way, but that he is OK.

Then, as if their acceptance wasn't enough, the older sister looks at me with awe in her eyes and says, "Wow! I wish I had a hand like that."

*****

Later in the evening, I watched as the younger sister took Ethan's hand in her own and stood with him in the yard as the fireworks shot into the sky. At that moment, I couldn't help but believe my earlier words...

Yep. He's OK.

Heart Walk 2011

2011-07-02T14:35:00.002-04:00

Hey friends!

You've probably noticed a couple of changes to the blog this afternoon. Unless, of course, you're reading this through your Google Reader; in which case, hop on over to the actual blog and check out what I'm about to describe.

Every year, the American Heart Association hosts a Heart Walk and 2011 will mark our second year of participation! Last year, we managed to raise right around $3,000 and had a team of 30 people walk with us ... that was HUGE!! I recently met with an AHA representative and she had nothing but great things to say about our fund-raising efforts as a Community Team, and challenged us to top it this year.

I totally think we can do it!

If you look at the top of the blog, right under the "Signs of Life" header, you'll see an AHA/Team Ethan image. If you click anywhere on that picture, it will take you to the team page for "Team Ethan". You'll be able to see how much money we've raised, and how many people have joined our team. FYI: our goal for 2011 is to raise $3,500 through 35 team members.

From the team page, you can also click on "Join Our Team" to walk with us. This year, the walk will take place on September 25th and it will be held, again, at the RBC Center. If you're local, I'd love for you to walk with us and help us reach our goals! If you're not in the Raleigh area, would you consider being a "virtual walker"? You can still join our team and help with our fund-raising efforts. I bet Jeramie could even Photoshop you into the team photo!

If you're not in the walking mood, but you would still like to donate, that's just fine! If you go back to our team page (via the AHA/Team Ethan image at the top of the blog) you'll see a box on the right-hand side that shows everyone who has registered as a team member. You can click on one of those names to donate specifically to them, or you can choose "General Team Donation". Either way, your donation will be added to our total team amount.

I have made it my personal goal to raise $500 for our team. If you would like to donate to me, I've installed a widget on the right side of the blog. It will show you how close I am to reaching my goal, and you can click on that image to take you straight to my personal page, where you'll be able to make a donation.

Your donations are tax-deductible and you'll receive a receipt for tax purposes when you complete your online donation. If you're not comfortable donating online, send me an e-mail at joyemullis(at)gmail(dot)com and I'll give you a mailing address where checks can be sent. (I have paper receipts for those who choose to donate through cash or checks.)

Also, only donations of $25 or greater can be made online. Cash and checks are the best options for those who would like to donate less than $25.

Thirty-five team members. Thirty-five hundred dollars. I know we can do it!

He needs us to do it...

I pledge $10, now, who wants to go next?

wordless wednesday - the anniversary edition

2011-06-29T10:07:00.001-04:00

just for fun

2011-06-28T11:57:00.001-04:00

(P.S. - I don't take any credit for this boy's knowledge of letter sounds ... Leap Frog laptop, all the way!)

wordless wednesday - the old school edition

2011-06-22T13:38:00.000-04:00

what a weekend!

2011-06-20T15:28:00.000-04:00

"Father's Day Weekend - 2011" will be going down in the books. Not in the baby book, necessarily, but definitely in the record book for the state of Virginia and possibly even in the Guinness Book. You know, the one that's full of world records and such.

Every year, for as long as I've known Jeramie, he, his brother, and his dad have gone fishing in Kerr Lake over Father's Day weekend. They would always come back from their trip bragging about who caught "the big one" and playfully arguing over who was the best fisherman that particular year. A few years back, they decided to make it a little more "official" and bought the most hideous looking trophy I've ever seen.

Jeramie "won" the trophy in 2009, his first Father's day. He wasn't able to actually go to the lake, due to Ethan's health, but the guys put out a line for him and it just so happened to be the one that the most fish nibbled on!

Jeramie's trophies for 2009 - fishing and poker

(Okay, okay. So, it's not that bad, but it has sat on my mantle for a little longer than my decorating tastes prefer.)

Once the trophy came to be, it would go home with whoever caught the most pounds of fish during their weekend trip. It has been shared between the three of them over the years but this year, without a doubt, it went to my brother-in-law, Nick.

At 57 inches long, 43.5 inches around, and weighing in at ONE HUNDRED and FORTY-THREE pounds, I introduce to you "Big Willy" ...

It took Nick about 45 minutes to reel it in, and then it took the three of them to actually get it in the boat. It beats the current state of Virgina record by 34 pounds and, from what the guys have been able to find, it is 13 pounds heavier than the current world record.

Is that crazy, or what?!

Just about a month ago, my father-in-law caught a 95 pounder in the very same lake. I'll tell you what ... it sure does make me think twice about dipping my toes in that Virginia water!

Although not nearly as exciting, Ethan had a big weekend, too! We went down to my parents' house while Jeramie was away at ~~Swamp Loggers~~ the lake, and he slept in a twin-sized bed for the very first time!

He is quickly outgrowing the pack and play that they have set-up for him there, so we tried our luck at getting him to sleep in his new twin bed. I was shocked by how well he did! He successfully took one nap and slept through the night both nights we were there. I was a little worried about him coming back to Raleigh and having to go back into his crib (his twin bed here isn't quite ready yet), but he's done great in it, too!

Just one more reason to admit that he is, most certainly, growing up.

That, and this ridiculously cute haircut he received from his Aunt Bubbie! It was waaaaaaaaaay past time for one ... thank you, Bubbie!

Before

After

I hope all you Daddies out there felt, and continue to feel, loved and celebrated.

Y'all have a great week!

for the baby book

2011-06-16T13:35:00.008-04:00

I've been so bad about putting true "Ethan updates" here on the blog. I can't tell you how many times I've wondered when he did this or that, and looked back at old posts to figure it out.

Lately? Not so much. I recently read a Facebook post from a friend of mine, stating she was updating the baby book for her four-year old son. That motivated me to find the perfect book, and start using it! Has it happened yet? Nope.

So, in an effort to do better and not allow three months worth of progress to slip out of my memory, here I go...

***************************

Growth: At two years and three months, Ethan stands 35.5 inches tall and weighs a little over 27 pounds. This puts him around the 30th percentile for weight, and a little over the 50th for height. This is just about perfection for a cardiac kid with weight gain issues. And, can we say, "proportionate"?!

Development: Ethan is excelling in all of this therapies right now! His OT (occupational therapist) has brought up the idea of going to once monthly sessions, and his DT (developmental therapist) is wondering if she'll be allowed to stick around for much longer!

(For the record, RM, I sure do hope so!!)

He started SLT (speech & language therapy) in mid-March and has already come such a long way. He has eliminated nearly all of the nasal, air-trapping sounds he had acquired and is currently working on "sn-" and "sm-" blends (snake, smile, snail, etc.) His speech therapist is also doing some language development activities with him. Ethan has gotten away with being a "lazy talker" because we've always been so impressed with his massive vocabulary. This created somewhat of a gap, though, as he just throws around a variety of big words, but doesn't really do anything structurally sound with them. We're working on that, though, and in just a week's time he has started putting together 4 and 5 word sentences!

Urology: We met with Ethan's urologist a few weeks ago, and everything checked out nicely. I'll take him back in six months for another check-up, and for a final ultrasound of his kidneys.

(He had a mild-to-moderate case of hydronephrosis when he was born, which has been monitored and has gone away on its own. As long as this next ultrasound is clear, we'll have one less diagnosis to think about.)

We are free to start potty training, but Dr. W warned us about starting too early. According to urologists (and whoever else may share this opinion) the average age for boys is two and 3/4 years, so I don't even plan to go there until our next appointment.

Orthopedics: Ethan is so proficient at using his left arm and we don't see his orthopedic surgeon again until December! He should be wearing a brace during periods of sleep, but we've had no luck having one made that he'll actually keep on. Thankfully, my naked eye can't see signs of any loss of correction, so I hope the x-ray in 6 months says the same.

He does still have a really dark scar from his first arm surgery (January 2010), and I'd love for y'all to tell me if you've had luck with specific creams or ointments.

Cardiology: Since the cath back in May, Ethan has been doing FANtastic! His heart sounds great, to us, and there is still no sign of a thrill when we feel his chest. We haven't seen anyone from cardiology since the cath, so I am definitely looking forward to Dr. I laying eyes on him in a few weeks!

Miscellaneous: Ethan is obsessed with popcorn, dumped his Tommee Tippee straw cups for Gerber sippy ones, and continues his love for "tummus" (hummus). He cut the last of his teeth a few weeks after turning two and still despises having them brushed. He loves the water, but is very timid when it comes to jumping in or being taken out in the deep end. He runs and plays with the best of them, can jump with both feet off the ground, and just recently learned to jump off of a raised surface. His favorite thing to draw is a circle and he thinks that Mama can draw whatever he asks of her (so sorry, buddy). His letter and number recognition skills are impressive and he's learning to count to 10 in sign language.

(Side note: does God know what He's doing, or what? Thanks to only having 9 fingers total, 4 of which don't bend, how would Ethan learn the traditional finger/number system? Enter sign language, and a Mama who can teach it to him.)

His favorite park is the Observation Park at Raleigh-Durham International Airport and he yells out "Welcome (to) Raleigh!" when we see a plane land. Precious, I tell ya.

He is adventurous, curious, and fiercely independent. He is a source of joy, a test of patience, and fills me with more love than I ever thought possible.

How's that for a baby book entry?

wordless wednesday - the superhero edition

2011-06-15T20:46:00.003-04:00

(a huge thanks to these guys for providing Ethan with this awesome cape!)

my silly boys

2011-06-13T12:31:00.002-04:00

Last Thursday night, I went out to dinner with some friends and left Ethan and Jeramie at home to do whatever it is they do when I'm not there.

Evidently, hilarity ensues...

I'm not sure what's more funny ... the videos themselves, or the fact that Jeramie is cracking up all by his lonesome. Although, when I was uploading the videos just now, Ethan was in TEARS from laughing so hard and kept asking to watch them again.

Laughter is the best medicine, right?!

wordless wednesday - the garden hose edition

2011-06-08T22:50:00.005-04:00

playing catch-up

2011-06-08T16:42:00.007-04:00

My life is so incredibly busy right now. Ethan and I are back in Raleigh after a 48-hour trip to my parents' house near Wilmington. I've put 500 miles on a brand new set of tires in a matter of four days. In the past week, we've gone to five appointments, two birthday parties, and three play dates. Jeramie was out of town two of those days, so combine that with my trip to Wilmington, and I really haven't had much of a face-to-face conversation with him since Friday night.

It is a stark comparison to a few months ago when I was elated about Ethan's light appointment schedule, but a little sad about his lack of interaction with other children. Not anymore! Appointments and therapies and play dates abound! Don't get me wrong, though. Aside from putting him to bed at night and wondering where the day went, I enjoy it. I love seeing him play with his friends, and I find myself craving the mom-to-mom time I get in the process. His therapists are fantastic, and I especially like the sanity booster that is his Thursday morning therapist!

But. (Isn't there always a "but"?) It's exhausting.

Out of seven days in a week, there is only one day that doesn't typically involve some sort of commitment, and that's Saturday. We also get a break every other Friday afternoon, but that's it. Six out of seven days are reserved for everything from therapies to church activities to Zumba. (Oh, how I've come to love my Monday night booty-shaking sessions!)

I'm surprised I'm even putting together complete sentences at this point. For you parents out there who are juggling crazy busy schedules, I would LOVE to hear some advice! Tell me how you manage the day-to-day of being a parent, but still manage to be a spouse. Tell me how you decide to back down on certain activities. Tell me how you find the motivation to keep your house clean. Tell me anything!

It would also be nice to know that I'm not the only one who stays in my pajamas all day on those coveted, random days when we don't have anything to do.

In the midst of all of the above, and even through my lack of blogging, I managed to receive a bloggy award!

Jen sent it my way, and she's someone who is very near and dear to my heart. She also douses me with a dose of sanity on those Fridays that Ethan and I find ourselves free and ready to play! Her son, Jay, has quickly become one of Ethan's most talked about friends, and I think she's equally fantastic.

And, since it is a "Pay it Forward" award after all, I'm passing it along to a fellow Teaching Fellow, and college friend, Tori. Last fall, she was challenged to think of something to be thankful for for thirty days. She carried the challenge through the month of November, and has since started a blog entitled "A Year of Gratitude". I love reading about all the things she is thankful for, and it encourages me to find the positive in the day-to-day craziness ... thanks, Tori!

That's all I really have for now. I guess it is Wednesday, so I'll be sure to post a few cute pictures to make up for all of my mom-plaining.

You're welcome.

wordless wednesday - the lake edition

2011-06-01T09:19:00.005-04:00

random.

2011-05-31T17:20:00.008-04:00

I'm in a bit of a blogging stand-still right now. When I sit down to write something, I feel like it needs to be all profound-like, or it should document some huge medical drama. Since I haven't been feeling very Thoreau-ish lately, and all's quiet on the Ethan front, I thought I would insert a little bit of randomness here on the bloggy blog.

I found this when I was cleaning out some things on Facebook this afternoon. It was one of those "25 Random Things About You" surveys that I filled out sometime during my pregnancy (about 2 1/2 years ago). I'll leave numbers 8, 16, and 21 as is, but let's be clear; there is NOT another Mullis baby on the horizon!

... yet.

***********************

1. In 1st grade, my teacher refused to call me by any name other than my first (Kristina).

2. Kristina is no longer my first name; I dropped it after I got married. I am legally "Joye Davis Mullis".

3. I am fluent in sign language.

4. Sometimes, when I'm walking, I'll fingerspell random words that pop into my head.

5. I get nervous when I sign with deaf adults.

6. When I was 7, I put my wrist through a glass window and sliced it open. Now, when people see my scar, they want to know if I tried to kill myself.

7. I only have 1 sibling, a sister, and she is the BEST!

8. My husband and I are expecting a little girl in 6 weeks, but also preparing for a boy! ...it's a long story.

9. I have a weakness for anything chocolate.

10. I was the salutatorian of my high school senior class.

11. I don't like seeing misspelled words in print, so I just Googled "salutatorian" to make sure I spelled it correctly.

12. I lost the spelling bee in 5th grade because I spelled "radio" wrong.

13. I love dogs, but I don't think I'm made to own one.

14. I've never traveled out of the country.

15. I am a beach girl at heart, but being around any body of water will do!

16. The whole pregnancy process has been a HUGE faith-builder for me.

17. The 4 (um, 4 1/2) years I spent in college were some of the most fun years of my life.

18. My college roommates are still my best friends.

19. I had surgery in high school to remove an extra bone from my foot.

20. I would love to be an audiologist or speech therapist one day, but I don't think I'm motivated enough to do it.

21. Sometimes I laugh out loud when I watch my baby move around inside my belly.

22. When I was little, I had to have my back scratched every night before bed ... and I still do even now.

23. I do not like to cook. Thankfully, I have a husband who doesn't mind it!

24. I had my tonsils removed 10 days before my college graduation.

25. I've lived in North Carolina my entire life.

***********************

What's one random fact I may not know about you??

the good stuff

2011-05-23T15:45:00.004-04:00

Have you ever had one of those weekends that felt like a whirlwind while you were in it, but once you took a second to rest from the chaos you realized just how awesome it was?

That was this past weekend for me. For my shy, introverted self, it was a stretch. Spending time with various people all day, every day, for three nights and two days straight? That used to be enough to hurl me into the fetal position, with covers over my head. We introverts like our "alone time" and our batteries are charged by that. Too much time around too many people tends to put us over the edge, and I was a little afraid of that going into the weekend.

However, and this is a huge however, I found myself pleasantly satisfied with how it all turned out. In a matter of 48 hours we spent some time with current friends, had another great evening getting to know new ones, and attended church as a family. In between that, I got to celebrate an upcoming wedding and a baby (not during the same shower!), giggle my way through Zumba, and have a much needed "date night" with my best girl from college.

It was fantastic! All of it. I was a little surprised by how well I handled all of the activity but, before you go and think I'm becoming some crazy extrovert, let me tell you that I was in bed by 10:00 last night and haven't moved from the couch for much of the afternoon!

At church yesterday, our pastor talked about what it is that we want people to know about us, and why we want them to know it. In my experience, the more we know about someone, the harder it can be to love them. As our pastor suggested, this is probably why you don't see Facebook posts stating that someone just yelled at their wife or kicked their dog. We want people to know the good, but none of us have stories that are just good. There's bad and ugly, too.

This afternoon, amidst my need for some "me time", I am giving thanks for those who know all the crap in my life, but still choose to invest in it. I am thankful that new friends have come along, whose stories we can learn, and with whom we can share ours. But, most of all, I am thankful for the reminder that all of the glory, honor, and power for what has happened in my life goes to the One who gave me life in the first place.

I pray I can come to boldly proclaim this...

"Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel."
-Philippians 1:12

wordless wednesday - the wordy edition

2011-05-18T16:12:00.012-04:00

Hey y'all; happy Hump Day. I hope everyone's having a great week and surviving allergy season. I have never been one to be affected by allergies, but something is giving my ears a fit the past couple of days!

We've had some periods of rain lately, too, and that has been nice. Of course, I say that as someone who enjoys cozy, rainy afternoons and not as someone who is having repairs done on their house as a result of our recent tornado. There is still so much evidence of damage around the city, and there are so many people who have lost absolutely everything. It's heartbreaking. I've been wanting to clean out some of Ethan's toys for a while now, but didn't have any motivation for where to take them. Then, I got an e-mail from a friend who knows of a family in need of EVERYthing. Toys they've asked for (among other things), so toys they will receive! It feels good to purge, but to purge knowing it's going to a family in need feels even better.

One recent, rainy afternoon Jeramie and I decided to take a family trip to the mall. It started to downpour right before we left the house and I snapped a picture of Ethan looking out at the rain.

Of course, I had to take another one of him in his spiffy new raincoat once we were outside.

Last night, Jeramie was looking at the pictures I took and said, "Wow. Remember that picture we took of him standing at the window last year? Remember how little he looked?"

I knew exactly which picture he was talking about and directed him to the correct folder. A few minutes later he said, "Check this out" ...

So much has changed in just 13 months. Our carpet has been ripped up, the walls are a different color, and we finally hung curtains! But, forget about the house. My baby is not a baby anymore, and that picture most certainly proves it!

There is so much more strength in the way he's standing, his hair has grown in like a little boy's, and he's a good 3 inches taller. It's hard to believe all the energy I wasted on worrying if the Ethan from one year ago would become the Ethan of today.

I read a quote on Facebook a while back that said something along the lines of: we spend so much time wondering what our child will become tomorrow, that we forget they are a person today. That has stuck with me ever since and has really helped me to see Ethan for who he is right now, in all of his rambunctious two-year old glory.

I am thankful for photos like those that help me to refocus my Mommy brain! Now, for a little more of what you really came here to see...

Enjoy the rest of your week!

wordless wednesday - the miracle edition

2011-05-11T19:00:00.004-04:00

it's all about your heart

2011-05-11T11:07:00.006-04:00

Ever since I watched a video put together by Sisters by Heart, I've not been able to get this song out of my head...

(Isn't that little girl dancing to it just precious?!)

I find myself singing it to Ethan throughout the day and, at times, I feel tears well up in my eyes as the words come out of my mouth. I don't know the reason behind the song, but I think Mindy should be prepared for it to become the Heart Mama's Anthem.

This song laid heavily on my heart as we took Ethan in for his cath last week. Not knowing what the outcome would be, I reminded myself of the words I had been singing and the truth behind them; I've loved my son since day one. And, as he has faced surgery upon surgery, it has been my prayer that we would let Ethan be Ethan, and not let his battle wounds define him. It doesn't matter that his scars aren't yet faded, or that surgeons will eventually add fresh ones. It's about loving his figurative heart; fostering the adventurous spirit I can already see, and teaching him respect for himself and those around him.

But I can't ignore the fact that his literal heart is special in its own way, right? It is ridden with scars and has been stitched up like an old, loved teddy bear. It is scary, and painful, and not something anyone would wish for their child. But, through all of that, we've experienced life and friendship on a whole different level. He's able to grow-up with other children who are just like him, in a lot of ways, and I get the deep, unspoken understanding that comes from a Mama who's been through it, too. In that case, it's about teaching him (and me!) it's OK to have a special heart, and helping him to love all the things that make him who he is.

Just think about the stories he can tell on the playground one day...

As all of this had been swirling around in my head late last week, we came home on Sunday afternoon and Jeramie and Ethan gave me my mother's day gifts. The song lyrics came to me again as Jeramie showed me this...

...and explained, "It's called Joye's Heart. I made a few mistakes on it, but I think it's still beautiful."

That's powerful stuff! It got me to thinking about the figurative scars that are on my own heart, and how we're all walking around with broken ones. Some require surgery, some require therapy, but we're all in need of someone to say, "it's not about the ugly scars".

I pray you'll listen to the words of this song and imagine someone singing it over you. Whether it's a spouse, a friend, a family member, or your Creator himself, hear the words...

It's not about your scars; it's all about your heart.

HOME!

2011-05-06T14:53:00.002-04:00

Man. Is God good, or what?

We are home and, other than being a little tired and cranky, we're doing well! I think it's safe to say all three of us are looking forward to some uninterrupted rest tonight.

Dr. R (yep, Kelly ... that Dr. R!) came in after the echo to share the results with us. The grin that was spread wide across his face was all I needed. Although, it didn't hurt to hear that the pressure gradient now measures around FORTY. 40! Forty, forty, forty!!!

Forty never sounded so good!

Before the echo, he came by to take a listen to Ethan's heart. Jeramie and I had noticed throughout the evening last night that the thrill (vibration in his chest wall) was gone, and we shared that observation with Dr. R. He agreed and said that Ethan's heart sounded even better than it did when he left the cath lab yesterday afternoon.

Y'all, that can't be explained by anything other than a God who is mighty to save even the tiniest of hearts. I praise Him for putting people, like Dr. R, in our path to be His hands here on Earth. To witness that level of intervention and healing is mind-blowing.

I struggle to find the right words to express my thanks; whether that's to Dr. R and his team, or to y'all for praying so fervently for our sweet boy. In any case, the glory is God's, and I hope He appreciates the simplest of thank-yous.