One Incredible Weekend!

This past weekend just might go down in the books as one of the best I've had in a long time! There was much to be anticipated, and I was surely not disappointed.

It all started on Friday when one of my college roommates, Tara, came into town. I've said it before, and I'll say it again; I am truly blessed to have had such an awesome roommate experience. Those three girls are still some of my best friends, even ten years later. Tara spent the entire weekend with us and we had a great time catching up and playing with Ethan!

We all went to the mall on Friday night for some dinner and a few food court rides. Ethan wasn't so sure about a couple of them, but finally settled into the Superman one!

On Saturday, Tara and I headed out to lunch with Brandi (one of our other roommates) and her new baby, Karter. That little boy is seriously the most laid-back, quietest infant I've ever seen! He slept through lunch, but I was able to get some adorable pictures of him snoozing away. All we needed was Michelle, and our quartet would have been complete.

Saturday night was just ... special. I really can't think of a better word to describe it. About a month and a half ago, I posted about a little boy named Jay. He's a fellow Duke heart buddy of Ethan's, and had a rough time recovering from a recent heart surgery he had up at CHOP. Things were very touch and go for a while there, and we were all praying for healing so that he and his family could come back home! Well, Jay made quite the miraculous recovery and the Foster family is now sleeping soundly in the comfort of their own beds! They threw a welcome home party for Jay on Saturday night, and we were honored to attend.

Jay looks absolutely FANTASTIC! Watching him run and play around the yard, one would never know what his body had endured over the past six weeks. Simply amazing. Of course, I loved catching up with his mama and being able to talk to someone who understands certain feelings first hand. We are so thankful for their friendship, and we're looking forward to more play dates in the future!

Jay showing Ethan how it's done!

Then, the long-awaited American Heart Association Triangle Heart Walk was on Sunday, and it was a HUGE success! When I first found out about this event a few months ago, I envisioned Ethan surrounded by those who have prayed him through the past 18 months. I think it's safe to say that dream most definitely came true...

We had 35 family members and friends join "Team Ethan" and walk with us on Sunday. When the walk started, and I saw our sea of blue shirts move throughout the crowd, I couldn't help but get emotional. At that moment, I felt so loved, and I can't wait for the day when Ethan truly understands how much people care about him.

Before the walk started, I had the chance to talk to a team from Duke LifeFlight. Just walking through the front gates and seeing that beast of an ambulance sitting there brought instant tears to my eyes. That is what transported Ethan from Rex Hospital to Duke on the night he was born, and I hadn't been up close and personal with it ever. I was able to thank the team for everything they do, and to share a little bit of Ethan's story with them.

The LifeFlight team gave Ethan a pin that we eventually put on his red survivor's hat ... seems appropriate, don't you think?

All in all, it was a great afternoon! I am so incredibly thankful for our friends and family who have supported us, loved us, and prayed for us during Ethan's journey. We love you ALL!!

Here are a few more pictures from the walk:

Oh... what's that, you say? You want to know how much money we were able to raise as a team? My bad.

Our team goal was to "recruit" 20 members who would raise $2,000. Well, I am ECSTATIC to report that our 35 family members and friends, though checks, cash, online donations, and recurring donations, raised a combined total of...

$2,263 $2,338

...and the donations are still coming in! I'd say that's pretty dang good for our first walk, wouldn't you? I am looking forward to the walks to come, and can't wait to see what "Team Ethan" can pull together and do for the American Heart Association in the future!

Thank you, again, for supporting a cause that is so important to our family. We appreciate every ounce of love we feel from our closest friends, and even perfect strangers!

It was one incredible weekend, indeed.

Surgery Canceled!

Just a quick note to let everyone know that Ethan will not be having surgery tomorrow. I took him to Duke today after calling the surgeon's office to tell them about his recent cold. We all decided it would be better for everyone to know the plan for surgery this afternoon, rather than at 6:00 tomorrow morning.

Everyone (surgeon, anesthesiologist, pre-op nurse, me) agreed that Ethan looks fine and sounds good, as far as his lungs are concerned. However, his nasal passages are still very congested and there's a lot of phlegm hanging out in the back of his throat. The (very high) risk of some of that congestion getting pushed into his lungs during intubation does not outweigh the benefit of having surgery tomorrow. So, it's a no-go for now.

We were able to reschedule for November 2nd, which means the Tri Mulli will be going into hibernation for the next 5 weeks. We have a few things going on the next couple of weekends but, after that, don't expect to see our faces all together until we emerge from Duke, surgery completed.

Please continue to pray that Ethan can shake this cold for good, and that he'll remain healthy until surgery day (and beyond).

Here's to not even having to think about potty training for five more weeks!!

Thoughts on Dr. Jones' Letter

Disclaimer: This post is going to be completely out of the ordinary for me. Some of you may not like what I have to say, some of you may applaud me for saying it. I really hope I don't offend anyone in the process of typing out my thoughts, but I guess that's always possible. If you feel the urge to comment after reading (whether here or on Facebook), please be respectful to me and to anyone else who may have shared their thoughts. Open, respectful dialogue is encouraged, but I will not tolerate ugliness.

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Many of you have probably seen the letter that's circulating around Facebook right now. You know, the one from Dr. Roger Starner Jones, the ER physician from Jackson, Mississippi. The one that was originally written to the editor of a Jackson, MS newspaper, not the President of the United States.

While at one point in my life, I probably would have re-posted this letter, it saddens me now that so many people are doing so. However, the way I think and feel about various topics has drastically changed in the past 18 months and I don't, or can't, expect anyone else to necessarily feel the exact way I do.

For the sake of beating around the bush, I'm just going to go ahead and put it out there. Ethan has received, and is currently receiving, Medicaid and SSI benefits. When he first qualified, right after his birth, I kept it fairly hush-hush for fear that the exact type of judgments passed along in Dr. Jones' letter would be passed onto me and my family.

When Ethan no longer qualified a year later, due to our income, we struggled to pay his medical bills and we became a little more vocal about getting the help we needed. Thankfully, the fund that you all helped to establish for us made it so that we didn't have to go into debt, but we're the lucky ones in situations like this. Not everyone (heck, not most people) who experience a medical crisis have a community like ours to surround them and keep them from drowning.

But, now that I'm no longer working, Ethan qualifies for medical assistance again. How many of you would point your finger at me for abusing the system? How many of you would point that same judgmental finger at someone in the grocery store, swiping their EBT card, who could very well be in the exact situation we're in? Unless I'm painfully unaware of how y'all feel about our current arrangements, I'd guess that no one would ever question why I'm not working and why Ethan is receiving Medicaid. But, you've spent time with us. You know our story and our hearts. You know that we're in this for the right reasons.

The person in the grocery store, though? Maybe she's a stay-at-home-mama of a sick child, too. Maybe that bag of Cheetos in her cart is the cheapest thing she can buy to make her child happy. Maybe that bottle of wine she's buying with a $20 bill is her moment of sanity in an otherwise crazy day. Unless you stop her in the parking lot and ask her to share her story, you'll never know. But not knowing doesn't give you, me, or anyone the right to judge.

Let's be honest here. Other than the fact that Ethan's not smoking a pack of cigarettes a day or drinking beer, what's the difference between him (and Jeramie and me as his parents) and the ER patient in Dr. Jones' letter? Should the fact that Ethan is wearing a pair of Stride Rite shoes and that his Mama and Daddy are passing the time on their iTouch give a physician room to judge?

Since when did someone being on Medicaid take away their right to be happy? Not indulgent. Happy. Since when did it mean that someone doesn't already purchase their own private insurance, even though it's not enough, and since when does it label one as "irresponsible" or "dependent"?

I hope we never find ourselves in Jackson, Mississippi, needing ER assistance from Dr. Jones. I pray that this type of judgment has not been passed over my family from within Duke University Medical Center, or from the hearts of any of you. I pray that the next time we find ourselves criticizing another we'll remember Zechariah 7: 8-10...

"And the word of the Lord came again to Zechariah: 'This is what the Lord Almighty says: 'Administer true justice; show mercy and compassion to one another. Do not oppress the widow or the fatherless, the alien or the poor. In your hearts, do not think evil of each other.'"

Here and there

Thank you all for your kind words and prayers during such an excruciating week. Going home for Michael's services was even more difficult than I thought it would be, and that's saying a lot. I knew it would feel like someone had sucked the air out of my lungs or given me a swift punch to the gut, but the intensity of those feelings was unreal.

To my girls who stood by me, held my hand, and allowed me to experience those emotions without shame ... thank you. I couldn't have kissed his forehead and said my good-byes without you there by my side.

(...minus Christie & Ashley!)

I can't even fathom the pain that Michael's family, especially his mom, is feeling right now. The mourning cry of a mother is unlike any other human sound. It has escaped my lips once and I pray it stays deep down in my soul for a long, long time. Please continue to be in prayer for Michael's parents, sister, and all of his family and friends who have been so deeply affected by his death.

(Spring 2004 -- My sister's high school graduation)

I guess you could say I'm doing OK. It hits me at random times throughout the day that he's really gone, and it hurts. I came across his name in my phone earlier today and did everything I could to hold back the tears. I've had some really good talks in the past few days, and that has helped tremendously. I am fully aware that this isn't going to get easier overnight, or maybe even anytime soon, for that matter. I do look forward to the day when I can think about Michael and not cry, but smile instead.

I'm not there yet.

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We could also use some prayers here in the Mullis household. Ethan has developed a nasty cold over the past few days and isn't really acting himself. He has periods of high energy where he acts completely fine, but then turns into a whiny, clingy little boy justlikethat. He had a hard time going to sleep tonight, and I think I felt the start of some rattling in his chest.

I'm praying like mad that God would protect his lungs and dry up this gunk in his nose. Surgery is just around the corner (9 days, to be exact), and he needs to be in tip-top shape! Would you say some prayers for Ethan this week, too?

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The Triangle Heart Walk is just one week away and "Team Ethan" only needs $683 to reach our goal of $2,000! We are the top fundraising community team for the Triangle, and we're holding our own among all the company teams, as well ... way to go!!

I am personally $30 short of my goal and would love for one of you lovely readers to push me over the edge! A generous off-line donation just helped me surpass my goal; thank you!! Even still, if you haven't already made a donation, please consider doing so today.

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Thanks for checking in. I appreciate your love, prayers, and comments so, so much!

Crushed.

heart•broken: crushed with sorrow or grief

heart•ache: emotional pain or distress; sorrow; grief; anguish

On Saturday morning, I awoke full of excitement. Friends were on their way over, the carpet had been ripped up, the saws stood at the ready. We were finally getting around to replacing the floors downstairs! This project had been a long time comin' and the timing was perfect. Ethan was with my parents for the weekend and the beautiful fall weather made such a huge project much more bearable.

Minutes after our friends arrived, as I swept the dust off the concrete slab, my phone rang. Thinking it was someone calling to tell us they were on their way over, I took my time getting to the phone. When I saw the name of a high school friend pop up on the caller ID I thought, "that's odd", and answered. Laughing, I explained all the loud noises in the background and went outside where I could hear her a little better.

"Joye, have you talked to anyone this morning?" she asked, nervously. I hadn't, and I never like when I'm asked that question. It usually means really bad news is to follow.

I was right.

I screamed and collapsed on the grass when she told me that one of my best friends had been killed in a car accident early that morning. I sobbed and yelled for Jeramie, leaving her on the phone to hear all those raw emotions come spilling out. I apologized. "Honey," she said, "I knew you would want to know, and I knew you would react this way. It's OK." I cried harder.

I eventually hung up with her and gasped for breaths while Jeramie held me tight, not knowing what was happening. When I finally gained enough composure to speak, I looked up at him and squeaked out, "Michael's dead."


Michael was the guy that everyone loved. He was a laid-back, all around good guy. He seemed to know everyone, and everyone knew him. He came from a good family and respected those around him. We went to school together for as long as I can remember, but became really good friends our freshman year of high school. My parents adored him, and my sister looked to him as an older brother.

Our friendship grew, and we attended prom together our senior year of high school. Looking back on that night, I'm sure that he would've liked to have been with his typical group of friends, partying the night away. Instead, he spent the evening making me feel like the prettiest girl in the ballroom. I'll never forget that night.

I went away to college after graduation and Michael and I remained great friends. I had just gone through a break-up with another guy when Michael asked me out on our first date. What followed was a series of dates, a first kiss, and him spending part of every holiday at my parents' house with my family. We never established ourselves as a couple, but there was no denying that we each held a special place in each others' hearts.

Fast-forward to January 2005 -- Michael and I had grown apart and I met Jeramie one beautiful winter day. Not long after Jeramie and I began dating, Michael called, asking to go out again. Of course, I turned him down ... not exactly the answer Michael was expecting. It was not an easy conversation to have, and that was the last time I heard from him.

For five and a half years, I struggled with what Michael thought of me. It didn't consume my thoughts, but there were times I couldn't not think about it. Every time I went back home, I scanned the streets for his truck, wondering if that would be the day that we reconciled our feelings. I missed his friendship, but I was in the midst of experiencing a love greater than anything I had ever known. Jeramie understood; everyone has "that person" in their past.

At one point, I wrote Michael a letter. I told him that I was sorry and that I missed him. I told him I was happily married, and hoped the same for him. I included every piece of contact information for me that I could think of. Months went by as I waited for a response. Nothing.

Then, just this past spring, the time came to plan our 10-year high school reunion (which never happened, by the way). It was my job to make contact with different groups of people to let them know about the reunion. Michael fell into one of those groups, but I had no idea where to start. I ended up sending his sister a Facebook message, asking her for his contact information. When she responded with a phone number, my heart pounded at the thought of talking to him again. I knew it wouldn't just be a simple conversation about a party.

I was right.

We talked for hours that night. We cried. I told him about Ethan, and he shared some details of his life with me. Although I was nervous at first, talking to him became just as easy as it had always been. We kept in touch in the following weeks and decided to have breakfast together one morning while I was in town.

(PS - Jeramie is aware of every minute of our conversations, and encouraged me to meet with Michael in person. I have an excellent, graceful, compassionate husband. Just sayin'.)

We had such great conversation that morning. He met Ethan and was interested in everything about him. If only I had taken that picture of Michael holding him... He expressed interest in meeting Jeramie. He caught me up on day-to-day life, and let me in on some personal parts of his life as well; I heard parts of his soul that I hadn't had access to in a long time. He asked about my family, and we talked about typical small-town drama. It was perfect.

We managed to stay in touch through the month of July and were supposed to meet up during my sister's last weekend in Wilmington. He was going to meet Jeramie and have a chance to say bye to Jessi. For reasons I will never know, he didn't show up. He never responded to my text asking where he was, and I never heard from him again.

But, this time, I never will.

My heart has literally ached ever since I found out about Michael's death. I looked up "broken heart syndrome" and I'm pretty sure I'm self-diagnosing myself. I've walked around with red, puffy eyes since Saturday morning, and I burst into tears at random times. I hate, hate, hate that I didn't get to see him one last time, but I'm extremely thankful for that perfect morning we spent sharing our lives over breakfast. I am thankful for reconciliation, for forgiveness, for love, for peace.

I am in deep prayer for Michael's parents and his younger sister. He, along with two others, died in that tragic car accident, affecting more people than I can even fathom. I am praying for those families as well, that they will be afforded the opportunity to experience that same level of reconciliation, forgiveness, love, and peace.

I will be going home tomorrow for Michael's services. In a tragic, sick way, it looks as though we'll have our class reunion after all. I will see people I haven't seen in years, and I will say my final good-bye to Michael.

And then, when his body is placed in the ground on Wednesday morning, I will be burying a little piece of my heart with him.

18 Months Later

Sweet Ethan Kendrick,

Today, you are 18 months old. A year and a half. Something about you hitting this milestone is making me a little sad. You're definitely not a baby anymore; in fact, you are quite the opposite. You proved to me just how big of a boy you are at the park this past weekend when you rode rides (all by yourself, mind you) with enthusiasm, and weren't scared a bit.

In fact, you threw a fit when you thought Daddy wasn't going to let you get on one ride in particular. You are opinionated, knowing what you want, when you want it, and how you want it. Ever since that day at the park, you have given me even more glimpses into your new world as a full-fledged toddler.

You are starting to run, you try your hardest to jump, and you really like to climb. You love to climb up and down the stairs, although you're no longer content to crawl up them, or scoot down. You insist on holding the rail and going up and down on your two feet, just like us big people do.

Recently, you have started to carry on pretend conversations with your play phone. It is so incredibly cute to see you raise and lower your eyebrows, and change the pitch of your voice. It sure does seem like whoever you're talking to has some interesting things to say! I definitely feel like you're interacting with others more and more (real and pretend!). You love to be read to, and can even be found looking through your books on your own. Melts my heart.

Your language is still very intentional. You label so many things in your environment, and have periods of some intense babbling every now and then; if only I knew what you were trying to tell me during those times! I often find myself trying to figure out how many words you say, but I tend to lose count. By far, the cutest things you say right now are "haar" (heart), as you point to your chest, and "frowr" (flower). I'm pretty sure you're going to have the southern twang, thanks to repeating everything after me.

You're also very interested in learning sign language, and that has been extremely helpful! Now, instead of fussing when you can't do something on your own, you sign "help". You ask us to open things for you, and you're very polite, signing "please" and "thank you".

Despite being a round, chubby baby, you are becoming tall and thin. Actually, a little too thin. Just today, we went to your 18-month check-up and everyone seems to be a little concerned about your weight. It's my mission to fatten you up in the next month so that you'll pass your next weight check with flying colors. You've done so well with eating and drinking lately, and I'm thankful that you've been free from your g-tube ... even if it is just for this short while.

I really do stand amazed when I look back over the past 18 months. I've had a front row seat to one of the greatest stories that has ever found its way into my life. I am so thankful that you've had a much deserved break from the poking and prodding, the surgeries, the scares. I hate that I'll be handing you over to a surgeon, yet again, at the end of this month. I hate that you'll be old enough to know that I'm not with you at every second, and that you'll sort of understand what's going on. I see it as a huge blessing that God has given you a friendly, social personality. Doctors and nurses don't scare or intimidate you. In fact, just yesterday, you took off down the halls of your cardiologist's office with one of the nurses. Your Daddy and I could have left and you wouldn't have thought twice about it. One thing's for sure, I'll have to keep a closer eye on you, but I'm so thankful that God has protected you from being afraid of strangers.

Lord knows you have every reason to be.

My favorite thing about you right now is how funny you are. I think it's apparent that you get that from your Daddy. You will do anything to make us laugh and, once you get that reaction, you go on and on and on. You crack yourself up at times, too, and what an awesome laugh you have!

I hope you'll read this one day, maybe when you're 18 years old, and know without a doubt just how proud I am of you. I hope you'll feel the love that radiates from your Daddy and me. I hope, by that point, technology will allow us to put an end to all the surgeries and pain. But, until that day comes, I'll be by your side, cheering you along, protecting you, and loving you with every fiber of my being.

Happy 18 months, Ethan. I love you.

"Let him live."

Ethan's visit with the cardiologist went exceptionally well!

We were only there for an hour, and I'm pretty sure that must have set some sort of record. Dr. I. was so pleased with Ethan's overall appearance and "vigorous nature" that he decided an Echo was the only test he would need today.

After looking at Ethan's growth charts and realizing that he has fallen off of his curve a little, there was a period of time, while waiting for the Echo results, that we all wondered if his heart was doing something (even more) funky to be eating up all the calories he's taking in.

However, it was nothing but good news when Dr. I. came in to share the results with us! In short, Ethan's heart function is great and his ventricles have a strong squeeze to them. The narrowing of his conduit, where it is sewn into the pulmonary artery, hasn't gotten any worse, either.

The technician and Dr. I. are looking at something called the gradient, which measures the pressure of the blood that's pushing through the narrowing in the conduit. Before Ethan's 2nd heart surgery, that number had gotten into the 100-120 mmHg (severe) range. After the surgery last September, it went down to 20-25 mmHg (normal/acceptable), and now it's hanging out around 55-60 mmHg (moderate-to-severe). This has remained unchanged since his last Echo in March, and even the one before that at the beginning of 2010. Given that it spiked so quickly between his 1st and 2nd heart surgeries (6 months to go from 20ish-100ish), we're looking at a good, long time before his heart should need any surgical interventions (cath or conduit replacement). This, my friends, is very good news!

Dr. I. will continue to monitor the narrowing via echo, and will also be checking to make sure his right ventricle isn't showing signs of being over-worked. (The right ventricle is the part of his heart that is pushing the blood through the conduit. The tighter the conduit gets, the harder the right ventricle will have to work to get blood out of the heart.)

Right before we left the office, we had a talk about the upcoming cold and flu season. Dr. I. reminded us to get our flu shots, which then brought up the question of how secluded we should keep Ethan this winter. Obviously we won't be taking him around anyone with the flu, or severe cold symptoms, but Dr. I. said six little words that shook my core and reminded me that I'm not protecting a fragile, sick baby anymore.

"You've got to let him live."

Play groups, church nursery, Target ... there are no restrictions for Ethan this winter! Even more than being able to take him out and about, this means that our once sick child is thriving in every area. He's holding his own and making it known that he's going to fight this nasty beast called Congenital Heart Defects. I really don't think I could be more proud to be his mama.

Dr. I. changed Ethan's next appointment from three months to four and, as long as all goes well, he'll be moved to every six months after that!

Thank you for the prayers you've lifted up over the past few days; I didn't feel all that anxious and Ethan cooperated beautifully. What a mighty, mighty God we serve.

What's going on?

Hey friends.

I apologize for being quite the blog-slacker lately. There has been so much going on in the world of mended hearts recently, that I've taken a step back and focused on praying for and encouraging families who are either just starting out on this journey, or who have hit some hard bumps along the way. Everyday, I am incredibly thankful for Ethan's current health. So many of these families remind me of my own, and I remember how important it was for me to feel encouraged and lifted up during those critical times. I hope and pray that Ethan's story can continue to offer hope, even in the midst of the darkest times.

I would love it if y'all would join me in praying for Baby Ewan who will be entering this world in just a few weeks. Also, continue to remember Ella and Joshua as they are recovering from their first heart surgeries, and Jay who is being quite the rock star over at CHOP!

But, to answer my question, there is, and has been, a whole lot going on with the Tri Mulli...

• Ethan and I are still working on finding our groove with the whole stay-at-home-mama thing. Don't get me wrong, I absolutely love it, but I find that my days are either completely busy or completely boring. I'm hoping to nail down some sort of "schedule" that will keep me productive, and make sure we're both entertained.

• There is one thing I'll be able to remove from Ethan's weekly schedule, however, and that is feeding therapy!

Yes. You read that correctly.

As of today, Ethan will see his feeding therapist once a month, on a "check-in" basis. She is thrilled with the progress he has made in the past two weeks and says that his feeding and eating skills are age-appropriate. When I asked if she ever thought those words would come out of her mouth, she smiled and said, "I knew they would."

Our goal now is to fatten Ethan up a bit. Since we've completely stopped using the g-tube, he hasn't gained any weight at all; in fact, he's even lost a few ounces. Obviously, we'd like the scales to be going in the other direction, so our homework for the next month is to create a high calorie/high fat diet for him. I have some great resources and I'm pretty excited about experimenting with some new foods!

I'm not gonna lie, though. Ethan's weight loss has created a bit of anxiety in me. He has check-ups with the cardiologist and the pediatrician next week, and I'm getting all worked up about what they'll have to say. I always have knots in my stomach leading up to his cardio visits, but now they feel extra twisted. I keep reminding myself of this post by a dear friend, and fellow heart mom. Jenn's thoughts have really stuck with me, and I plan to read them over and over and over. Y'all can say some prayers for me as I remind myself to be anxious for nothing in the coming days.

• We will close on our refinance next week, and I will be so happy when this is over with! I am thrilled that we got a great interest rate, won't have to pay a mortgage payment for two months, and will be getting our escrow balance refunded to us, but man oh man. It was such a headache waiting for all of that to happen. I really don't think buying our house originally was this stressful. I guess that's what increased knowledge and lack of money will do to you, though. God's blessings and provisions have been crystal clear through this whole process, and I am thankful for the way He watches over me and my family.

• Jeramie just celebrated his 30th birthday, and we had a great time hanging out with family and friends for his birthday festivities!

• And, last but certainly not least, Jeramie, Ethan, and I will be having dinner with my angel on Friday night! I can't wait to introduce him to Ethan (and Jeramie, too), but to especially see if Ethan has any reaction to Troy's similar anatomy. Just yesterday, I noticed Ethan noticing the scar on his left arm. The time is coming when we're going to have to start explaining this stuff to him. I already pray that God will give us the words when that time comes, and I thank Him for placing people in our path who may make those words a little easier to explain.

If you made it this far, way to go and thanks for checking in! I'll be sure to update again after Ethan's appointments next week ... you can be praying for calmed nerves and a cooperative patient!

Hope y'all have a safe and fun Labor Day weekend!