tag:blogger.com,1999:blog-7542132523684198842024-03-06T01:52:07.431-05:00Signs of Lifejoyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.comBlogger592125tag:blogger.com,1999:blog-754213252368419884.post-15115111339211428112016-05-02T21:01:00.000-04:002016-05-02T21:01:44.175-04:00Motherhood.<div style="text-align: center;">
<i>"We are moms. We are called to love well and be faithful. And there is nothing easy about doing these two things for what adds up to a lifetime. This commitment alone can cause weariness to settle deep within our hearts. In the marathon of motherhood they hand you a person, not a baton. And you don't cross a magical finish line when they graduate from high school. You run it for life--yours and theirs--and the thing Jesus will hopefully say to you when you see him face to face is, 'You ran well, mom. You ran well.'"</i></div>
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<a href="http://www.amazon.com/Hope-Weary-Mom-Meet-Mess/dp/0736960805/ref=sr_1_2?s=books&ie=UTF8&qid=1462223997&sr=1-2&keywords=hope+for+the+weary+mom" target="_blank"><b>Hope for the Weary Mom</b></a></div>
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Any other mamas tearing up right now after reading that excerpt? Anyone else looking forward to the day we <i>actually</i> see Jesus face-to-face and leave this messed up, weary world behind?<b> </b></div>
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Motherhood is draining me right now, y'all -- which seems only natural as my kids leak secrets about the cards and notes they're making this week in anticipation of Mother's Day -- but it's true. There are so many times, especially when we're all in the van, that I look back at the three sets of brown eyes staring at the back of my head and think to myself, "HOW ON EARTH did I end up with a minivan full of children? Why in the world did the Lord ask this of me? WHAT could he have possibly been thinking?!" </div>
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SO many days I don't feel up for this gig AT. ALL. It all seems so daunting, so overwhelming, so exhausting all the time. </div>
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In light of all that, I recently started back with a counselor who worked with me through some dark days a few years ago. We are just one session in and I'm already wondering why I didn't call her sooner. Why did it take a full year before I finally waved my white flag and admitted I need some help with this? I'm sure my pride has something to do with it, but the Lord is slowly and surely pushing all that out of the way.</div>
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Mamas, we're not created to do this alone. For a year now, I've allowed myself to think that being vulnerable with sharing my feelings is equal to asking others to help me with them. It's not. Vulnerability is a beautiful thing, but there's a whole other layer of it that says, "This is how I'm feeling. Now help me deal with it." Praise God that none of this is bigger than he is, and that he graciously sprinkles our path with people who will do just that!</div>
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I'm not really sure what this next year of motherhood will bring, but it's my prayer that I'll run this race well and look a little more like him in the process.</div>
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<i><span class="verse-1"><span class="verse-1">"Therefore,
since we are surrounded by such a great cloud of witnesses, let us
throw off everything that hinders and the sin that so easily entangles.
And let us run with perseverance the race marked out for us,</span></span><b> </b></i><i><span class="verse-2">fixing our eyes on Jesus, the
pioneer and perfecter of faith. For the joy set before him he endured
the cross, scorning its shame, and sat down at the right hand of the
throne of God.</span><b> </b></i><i><span class="verse-3">Consider him who endured such
opposition from sinners, so that you will not grow weary and lose heart."</span></i></div>
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<i><span class="verse-3">-Hebrews 12:1-3 </span></i></div>
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<b> </b><i> </i>joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-42390211475452096752016-04-24T21:06:00.000-04:002016-04-24T21:06:21.161-04:00One.<div style="text-align: center;">
It was a sunny Friday afternoon. I'd spent that morning at Target, nervously pacing the aisles looking for anything and everything that might ease the heartache of a certain four-year-old little girl and her two-year-old brother who would be walking through our front door in a few short hours. A friend joined me for coffee after my jumbled Target trip, which was a welcomed moment of calm in a day that felt uncontrollably chaotic. I came home and baked cookies, hoping the smell (and taste!) of warm chocolate chips would comfort a couple of scared and broken hearts, and then I put on the bravest smile I could muster when the social worker rang our doorbell.</div>
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On that sunny afternoon of April 24th, 2015, our family of three became five, and all of our lives drastically changed.</div>
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Today marks one year since that Friday, and I simply cannot believe how far we've come in such a relatively short amount of time. (And, if I can be frank, I would have never imagined I'd be saying that one year later.) You may remember from<b> <a href="http://joyemullis.blogspot.com/2015/07/growing.html" target="_blank">this post</a> </b>that those first few days (and weeks, and months) as a family of five were some of the hardest, darkest, most agonizing days I've walked through. There were so many days I wanted to give up. There were (and still are!) days I was certain I wouldn't make it to bedtime with my sanity intact. Heck, there were lots of days I wasn't sure if I could keep it together until breakfast. Parenting children from incredibly traumatic backgrounds is a grueling, exhausting, frustrating, complicated job.</div>
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But you know what? We now have Year One under our belts, and I'd say "yes" to them all over again.</div>
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Among all the heartache, all the frustrations, and all the exhaustion, the Lord has graciously grown mercy and compassion and LOVE in our hearts. It didn't happen overnight, and we have a long and winding road ahead of us still, but I can look back over the past year and see our family growing closer to the heart of Jesus, and closer to each other. How awesome is that?!</div>
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Personally, my faith grows in the tension between grief and grace, and I've solidly lived in that space for a year now. I love Jesus more now than I did on the morning of April 24, 2015, and I'm certain I'll love him even more than this on April 24, 2017. Being a foster mama has given me such an intimate perspective on just how much he loves me (us! you!), and it's that love that propels me to love these children (even when I don't want to).</div>
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This work he has called us to is so, so hard, but so, so worth it.</div>
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Those scared four-and-two-year-olds are now silly, confident, brave five-and-three-year-olds. The Lord is doing a mighty work in healing their broken hearts, but just as Ethan's heart will always have scars, theirs will too. Each day, Jeramie and I wake up with the task of pointing all three of our broken-hearted children to Jesus, who loves them and cares for them more than we ever will. Some days it seems grace is nowhere to be found in our home, and then there are days Ethan can communicate that we love our littles because God first loved us. But even on the days we make an even bigger mess of each other's hearts, there is grace and forgiveness and love. So much love.</div>
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So, today, we celebrate that love. Just as Jeramie and I celebrate becoming a family of two on our wedding anniversary, then a family of three on Ethan's birthday, April 24th is now for celebrating our "birthday" as a family of five. This love was not natural, like falling in love with Jeramie was, and it didn't grow from the depths of my womb, but it's love all the same.</div>
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Glory to God for stretching and healing our hearts, strengthening us for the battle, and showering grace and mercy on us along the way! He is so good, and we are so thankful.</div>
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-57601253547967973802016-03-08T22:12:00.001-05:002016-03-08T22:12:58.016-05:00Seven Years Later<div style="text-align: center;">
My sweet Ethan,</div>
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It's a little after 9:00 on the night of your seventh birthday. You are tucked into your bed, cuddled up with the monkey that was given to you the day of your birth. Judging by the stillness upstairs, I'd say you're already fast asleep -- worn out from the full day of celebrating you. Because celebrate YOU, we did.</div>
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You've heard this story a-thousand-and-five times already, but right around this exact time, on this day seven years ago, a very special team of people were preparing to transport you from the hospital where you were born, to Duke. You were SO sick and we were SO scared, so we did the only thing we knew to do. We gathered that team of people, and our family, and we prayed around your little ICU on wheels. I slipped my hand through the small opening, willing myself to remember how warm and soft your skin felt, given the very real chance that I might not ever feel it again.</div>
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You've heard this part, too, and your spunky spirit today is proof, but God took that fragile baby and has done an amazing work in his -- YOUR -- life. I know that you don't fully understand that yet, but one day you will. One day, you will look at these first seven years of your life and marvel at how good our God is. One day, you'll grasp the full meaning of "community" when you realize how loved and cared for you are. </div>
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In so many ways I find myself thinking, "how are you ALREADY seven?!" But then, my very next thought becomes, "you're ONLY seven!" I could write a book about these first seven years -- the good, the bad, and the ugly -- but I'm quickly reminded that your story isn't over yet. Imagine how much more we'll be in awe of what the Lord has done in your life seven years from NOW!</div>
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Some of my favorite things about you right now are: your creativity, your resilience as a foster brother, your joke-telling, your drawings, your sweet singing voice, your kindness. You are ALL IN when it comes to anything Star Wars, which makes our conversations really interesting these days because I know NOTHING of the sort. You're so patient with me, though -- even if I can't keep the characters straight.<br />
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You are such a gift, Ethan, and it is a joy to be your mama.<br />
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Happy birthday, sweet boy. You are so loved.<br />
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Love, <br />
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joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-89216820736677339952016-01-09T11:13:00.001-05:002016-01-09T11:22:40.318-05:00Joy.<div style="text-align: center;">
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It's 9:30 on a Saturday morning, and Jeramie just left with all three kids for a rainy morning trip to the gym (<i>bless him</i>). This has carved out some much needed alone time for me, for which I am incredibly grateful. I don't really "do" resolutions, but I have told myself that, for each month of 2016, I want to read at least one book and publish at least one post to this space. I figure this morning is my chance to get started on one of those, as the bulk of this has been sitting in my drafts folder for quite some time, and writing doesn't come easy with children breathing down my neck.</div>
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So, here goes...</div>
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I've been thinking a lot about joy recently -- deep, full, abundant joy -- and the lack thereof. Here we are in the first, fresh days of a new year, and Jeramie and I are now almost nine months in as foster parents. In case you haven't heard me say this once or twice (okay, <i>a hundred times</i>) already, these have been some of the hardest months of my life -- the exhausting, defeating, what-on-earth-were-we-thinking kind of hard.</div>
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A couple months ago, Jeramie and I were sitting by the fire pit and I started to cry. Tears come easy these days as I surrender to the enormous responsibility that comes with being the primary caregiver of three young children, but that particular night I was feeling like a total failure as a mom. I lamented over how hard and overwhelming our days had been, and how much of a mess I was trying to shoulder it all. Jeramie gently reminded me that obedience isn't always easy, and that hard things are worth doing, but I was quick to reply that I'm not looking for easy. I just wanted joy.</div>
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I recently read through a book with a friend called <a href="http://www.allinfamily.org/the-beauty-and-brokenness-of-foster-care/" target="_blank"><b><u>The Beauty and Brokenness of Foster Care</u></b></a>. It is a fantastic resource for foster parents -- quick and easy to read,<span style="color: #0000ee;"><span style="color: black;"></span> </span>but filled with such deep truth and application. So much of the book resonated with me, but over and over again I find myself coming back to this:</div>
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<i>"Foster care is a beautiful expression of the Gospel. It demands a selfless, costly and potentially painful love for the sake of a child gaining much, as you willingly give it all. This is exactly what Jesus has done for us. He joyfully laid down the infinite value of His own life so that we might know the immeasurable worth of being fully and unconditionally loved by Him." </i></blockquote>
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So powerful, right?!</div>
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But. I read that and find myself focused on the word "<b>joyfully</b>". In full obedience to his Father, how did Jesus do that for me with JOY? I know nothing of what it's like to be crucified, and I have a limited imagination to understand the anguish he must have felt leading up to his death. The Bible tells us he sweat out blood, for crying out loud! And he did that <i>with joy</i>? That is so difficult for me to grasp. On any given day, I can rarely get through my morning responsibilities without turning into a harsh, bitter mess. I am so selfish, and so sinful, and so NOT Jesus. I do not live up to my own name 98% of the day!</div>
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The challenge I've been faced with over the past nine months (and, really, since right after Ethan was born) is how to live a life full of joy amidst hard, exhausting days -- rather than just looking for momentary bouts of happiness. </div>
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I've spent quite a bit of time contemplating the idea of joy that exists outside of our circumstances, and I've come to this conclusion: <b>deep, full, abundant joy is not something I can manufacture on my own</b>. Scripture tells me that fullness of joy exists only in the Lord's presence {Psalm 16:11}, and that it is evidence of his spirit at work within me {Galatians 5:22}. I cannot know true joy without abiding in the Lord and allowing his spirit to work in and through me. Knowing that kind of joy demands that I imitate the one who obediently endured the agony of the cross for the joy that was set before him {Hebrews 12:2}.</div>
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When I consider what has been done for me -- how God sent his son from their Heavenly dwelling into this messed up world, only to be despised, rejected, and crucified, so that I can trade my sin for his righteousness -- I gain some perspective. Jesus joyfully sacrificed his own life for me (for you!) because he knew what it would mean for us. Understanding that, how can I not joyfully give up my own selfish desires for the children the Lord has placed in our home, knowing what it will mean for them?</div>
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I realize now, that night at the fire pit, that I was looking for joy in all the wrong places. What I really wanted was to feel<i> happy</i> -- to manufacture fleeting moments of enjoyment to carry me from one hard moment to the next -- instead of looking to Jesus for long-lasting, abundant joy. Why would I do that when the best has been made available to me?!</div>
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It makes me wonder just how often Jesus looks at us, spinning in our hamster wheels, fighting against all that he's already done and whispers to us, </div>
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<b>"I'm right here. Find your rest, your comfort, your joy, your peace, your worth, your belonging, your satisfaction in <i>me</i>. It's all right here. Just ask."</b></div>
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<i>Lord,</i></div>
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<i>Open our ears to hear your voice. Open our hearts to allow your spirit to work in us, and let the fruit of your spirit be evident in our lives. Thank you for drawing near to us and giving us the amazing, humbling opportunity to experience abundant joy in your presence. Keep our eyes fixed on you, as our hands and feet do the good work you've called us to here on Earth. All glory, honor, and praise is yours, forever and ever.</i></div>
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<i>Amen. </i><i><span class="verse-14"></span></i> </div>
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joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com2tag:blogger.com,1999:blog-754213252368419884.post-41694969868330306162015-11-09T21:52:00.000-05:002015-11-09T21:54:01.812-05:00Mercy.<div style="text-align: center;">
For a few weeks now, I've found myself begging the Lord for mercy. I'll admit that I often spend a lot of time thinking about His grace, but never really contemplate or ask for His mercy. Recently, though, I've felt like a kid on the playground, lying face-down in the dirt, crying "uncle" as she continually gets pummeled by all things big and mean. </div>
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It hasn't been pretty, and I've not been the prettiest person to be around. In fact, a few nights ago at dinner we were comparing each other to Dr. Seuss characters and, without hesitation, Ethan boldly and bravely stated that I would be The Grinch. About fifteen minutes later, Jeramie found me upstairs, sobbing on our bed. Who knew a six-year-old could give his mama such hurt feelings?! </div>
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(I had wine with a friend later that night.)</div>
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But, back to mercy.</div>
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These days are HARD, y'all. On any given day, I feel as if the walls are closing in on us and we'll never escape the madness. The noise level in our home remains at a constant nails-on-a-chalkboard level, and someone is always running, crying, needing their bottom wiped, wanting to eat, asking a question, sitting in time-out, fighting sleep, fighting over a toy, fighting for attention. Fighting, fighting, fighting! Some days, Jeramie gets home from work and finds me all but curled up in the fetal position, rocking in the corner. </div>
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One night, after a particularly difficult day, Jeramie was praying before bed and the only thing I remember him saying is, "Lord, have mercy."</div>
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<b>Have mercy. </b>Throw us a bone. Give us a break. Have compassion on us, Lord!</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
After praying that prayer for a few days, it become clear through a variety of people and ways, that we needed to take a break. I was craving space to breathe, to think, to rest. I wanted to stand on the shore of a massive ocean and be
reminded of how small I am compared to my great, big God. I wanted to be dazzled by the rising sun and reminded of His faithfulness. I needed time <i>away</i> from the kids, and time <i>with</i> my husband.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEif5lixYvuIglzj4lvz1F-jLsvtbq17wJCegTpQdKypkCviMEut5lOTh-gzx5IbH2RWS67J57C0UknfEIF4UXmwYtmfecD2MNk1sjYeOeBfftrQexyEbEY3Iht9C0jKi2sy_dgCQFK68RzM/s640/IMG_9422.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjn0zeFt-luGWNXbA5cbLlinm3JLtCtsgavO6gwhEOU-3YWrWpKEkGEPbO5OZyY1duU5j-NH71oGTdc8uLUNJ1HnKEsmQbptkL7uki7tintcSO3qJj0K7quy3B4ecpBJtfGV-6ols-1Z3Ul/s640/IMG_9433.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
So we did just that.</div>
<br />
<div style="text-align: center;">
<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSgkEFoeu-ZZWP3vRtVmkQpzujEyBxn_b9sy9Mi0iMkaZ4V4rR6tmhR8sYzVG6e2Ngg6y_AX-IUCG3XlORGE7z1_MaEAyrPMnCBRLHAR3m1i2NoNfzW-GroT7D0pwyRkmE4zmtYanyPoJP/s640/IMG_9355.JPG" width="640" /></div>
<br />
<div style="text-align: center;">
We left the kids in the care of family and friends and spent two uninterrupted, restful days on the coast of our beautiful state.</div>
<br />
<div style="text-align: center;">
<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYpaVp2OM9wyw7D5AYOHzRuGAtMXgthYrD2T3sZl3L8kIQvr4MbOgPPlYT8JSDC860qf2Y2Pd0yjd6KN520Ygwsn5Ua5kFDJQbF5dv4MqrodlZXtcyWfKg4DRusGQsvKXJu9xYr4HU2Ldi/s640/IMG_9364.JPG" width="640" /></div>
<br />
<div style="text-align: center;">
And it was amazing.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoygk3zILONOhipinT9xMjnDIDb78qjE2zAm2KdMATfE3uTP7E3SlhDVnvx94YIauCdY1ZZ6deuMVVd8SNkt1bguN1_swgC8iNecpr2uIGTRHQuz18QSg7q21RVGotH1i7yNjHjrfL5qZB/s640/IMG_9365.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVxOd9DiaaqveoAbmpBKYR8vHUg76cBlCXkRaJNsLi5EsiF0qc9wE0uSWWPozH1dPcxYqL7gBncd8TnJXYMz1cb9N6oDL8ZHZVelevudkoyCNs8y1f3Z_SVFD61b0Wpdf5KQCjtpHxbzrn/s640/IMG_9377.JPG" width="640" />
</div>
<div style="text-align: center;">
<br />
And the mercy the Lord showed us over the course of one weekend sweetened His goodness and softened our hearts.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgk7XcNXoWzcIXxi3jKjbzukSCW9RgA9hxQz4C1tfWVdlqVSpmzDCmTHbYqNdutsvGwjOCuSBvaivE5zKW065-t7M6nAcbe5MLv7ZahXcQwh45KhoYXdhckdKf7mJCnxJtCXdha-CmIe9Ky/s640/IMG_9401.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
He renewed our spirits and strengthened our bodies for this race we're running.</div>
<br />
<div style="text-align: center;">
<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOlr5Dk-pXaq5V_9VCTUYv-hUA4HGFr0TPBT6Oqco4j3p-pi_sK7dZayP30_ZXV_dIVec2F1oZyMCGO3Ye1wpDqaA-fRweiKxMT5i-KFIEMo0QGnPORjya7JyrIzaUGOrC1xfN2k8xw76Z/s640/IMG_9412.JPG" width="640" /></div>
<br />
<div style="text-align: center;">
And we didn't deserve it.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1WQj35TLICmbfEHLJnYewApBMAihB1nyS9xBZB8f_K7H6oQIe2V50vGjulb20AbnyS908ulNOjYKRNom3ws6QYvLZpuj6w4XYJlnjyh5mNry8MPnVk7Fe65MrXul-PKHS14wvYEorFlSi/s640/IMG_9449.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
But He gave it to us anyway.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiE4tyTrlg6biDlqIKnoC7X52e7emxb-tLqZML-BmGkfHOlZSW4guhnNSSEHm-yzaElxoTBLVHBqq7n-PM_SXGD2brank9mrsBoqAgbrokp0LzKyd2l-_IM37PgB4BkBTNX13ATeFYwLsr/s640/IMG_9427.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
Because He loves us and He hears the cries of His children.</div>
<br />
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_eG9TWroB6pgl1-R3ESwCeD5dAzCYvqTXe2nGW4WwJ0144fMj_GU8jKhv-YNnaUdSDwjdXkPZ12SYxP930ndO119sC9gVoH1_4A9xJZGgidBd_Awo8YIzFI_aVHnD1zSr_fGELgGHNanW/s640/IMG_9463.JPG" width="480" /></div>
<br />
<div style="text-align: center;">
</div>
<div style="text-align: center;">
And His mercies, just like the rising sun, come abundant and free every morning. </div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjROVxH-clUap6_JjSSAer2b8JpYeNwhy74wDRkUEdhDH8FvwuAIOYBdyuVl1SpyHzRdtWxjxnom2HLkvXT2RRp8N5NPLKfpG7UmAX6XjKek3m2fYYL4TR0HfgFIceVTKhuMeI2QRjI1C4d/s640/IMG_9477.JPG" width="480" /></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Yes, Lord, we are thankful.</div>
<br />
<div style="text-align: center;">
<img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqSoZhPg7pX7YtZ9L0HA8yMhsuikHZFNV2TtMRxRyKU2gY8ratarNdzA99-lnKv8jV5FL17GuTBCKihoNN95RcbUY35Rwm5FYp50yM1iJxl-R1tk4uANk0DoQMVcHTeHHnf1z4I3tOeMX-/s640/IMG_9496.JPG" width="640" /></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div style="text-align: center;">
<i>The steadfast love of the Lord never ceases; </i></div>
<div style="text-align: center;">
<i>his mercies never come to an end; they are new every morning; </i></div>
<div style="text-align: center;">
<i>great is your faithfulness.</i></div>
<div style="text-align: center;">
<i>-Lamentations 3:22-23</i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
</div>
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-31187176183094773432015-09-29T21:57:00.000-04:002016-01-08T12:57:43.803-05:00Healing.<br />
<div style="text-align: center;">
<i><b>heal: </b></i></div>
<div style="text-align: center;">
<i><b><span class="oneClick-link">to</span> <span class="oneClick-link oneClick-available">make</span> <span class="oneClick-link oneClick-available">healthy,</span> <span class="oneClick-link oneClick-available">whole,</span> <span class="oneClick-link">or</span> <span class="oneClick-link oneClick-available">sound;</span> <span class="oneClick-link oneClick-available">restore</span> <span class="oneClick-link">to</span> <span class="oneClick-link oneClick-available">health</span></b></i></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">Do you remember back in April of 2009, when <a href="http://joyemullis.blogspot.com/2009/04/update-tonight-on-ethan.html" target="_blank"><b>Ethan's heart stopped</b></a> and everyone involved with bringing him back to life thought he wouldn't make it through the night? </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">Do you remember the <a href="http://joyemullis.blogspot.com/2009/04/this-sucks.html" target="_blank"><b>desperation</b></a> Jeramie and I felt</span><span class="oneClick-link oneClick-available"> as we watched our son fight for his life yet again, without even having the chance to come home from the hospital? </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">Do you remember the <a href="http://joyemullis.blogspot.com/2009/04/heartache.html" target="_blank"><b>fear and sadness</b></a> that loomed heavy in our hearts, along with the hope in our God who sees, loves, redeems, and restores?</span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br /></span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">I want you to remember, because I want you to see how big our God is.</span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br /></span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">Ever since Ethan's cardiac arrest, my prayer has been that the Lord would see fit to restore Ethan's heart to its healthy state. By no means was his heart "normal" or "perfect" prior to that night, but it would allow him to live a very long, full life. On April 22, 2009 -- at six and a half weeks old -- that all changed. Ethan's life-expectancy went from decades to hours, and his quality of life took an unknown turn for the worst. </span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br />But God.</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">He sees the sad mama all alone in the pumping room, pleading on behalf of her child who may never live to drink the milk her body provides for him. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">He hears the cries of those who mourn for what might be. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">He comforts fearful, saddened hearts. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">He listens to the prayers of His people and He is mighty to save!</span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">This morning, Ethan had a routine check-up with his cardiologist. These visits have become increasingly more "boring" recently, especially since his surgery last summer, and any heart mama will tell you that boring visits are the very best kind! Today's was boring in the most exciting way, though...</span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br /></span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">After an echo, EKG, and pacemaker interrogation, Dr. I came in to share the news with us: Ethan's heart is doing phenomenally well! The pressure across his conduit is in the normal (NORMAL!) range, and the pressures of his branch pulmonary arteries are not of concern anymore. He even went as far to say that if it weren't for the pacemaker, Ethan would be switched to yearly (YEARLY!) visits. </span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"></span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br /></span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">The heart that struggled to beat even months after it stopped is HEALTHY. Restored. Dare I say, healed? The Lord has taken that six-and-a-half-year prayer of mine and has turned my mourning into gladness today! He is healing not only Ethan's heart, but mine as well. </span></div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available">Do you see how good He is? </span></div>
<div style="text-align: center;">
<span class="oneClick-link oneClick-available"><br /></span></div>
<div style="text-align: center;">
<div class="separator" style="clear: both;">
<img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz3xpr7mxr6t98CyvZFcjWe3-65VXn_kqrnbkIlcUxnH9K9t08sb7D3CaTHTivL5OXNXqV9OPsxEFXXfLHjJTwRZJuw4ttLhmjw3UVa2DRJggmMM1OHALeV5gCclGQZRPcpuegalf7-wHC/s400/12015120_10101940341082961_8908227990846855803_o.jpg" width="400" /></div>
<span class="oneClick-link oneClick-available"><span id="goog_1228185806"></span><span id="goog_1228185807"></span><br /></span></div>
joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-29380180152485226752015-07-23T22:29:00.000-04:002016-01-08T12:58:04.180-05:00Growing.<div style="text-align: center;">
In more ways than one, our family has experienced a tremendous amount of growth since the last time I published something to this space. Who knew that just two days after I wrote about <b><a href="http://joyemullis.blogspot.com/2015/04/remembering.html" target="_blank">the day Ethan's heart stopped</a></b>, that the Lord would teach us a little more about grief and grace and tension and trusting Him?</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
I sure didn't, but He did.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
For a long while now, I’ve attempted to put words to the
past three months of our life, but they just haven’t come -- not in written
form, at least. I still don’t feel as though I can adequately string together enough
nouns, verbs, and adjectives to express just how much our lives have been impacted over these ninety-some days, but a friend has
ever-so-gracefully challenged me to start somewhere, so here I am.
</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Most of you reading this have lived these days with us,
experiencing our stress and exhaustion first-hand, injecting truth and
encouragement into our souls whenever possible. Some of you have watched us at
a distance, most likely admiring our “strength” and simultaneously thinking you
could never do it. Then, there are a handful of you who have no idea how our
family has changed since April 24, 2015. No matter which category you identify
with, I pray the Lord will use my inadequate words to display <b>His</b> glory and
strength -- not our own -- through what I have to share. We play just a small role
in His grand redemption story; please hear me when I say this is not about us.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
In August of 2013, after three weeks of fasting and praying
about growing our family, Jeramie and I <a href="http://joyemullis.blogspot.com/2013/09/there-is-no-plan-b.html" target="_blank"><b>said “yes” to adoption</b></a>. It was very
clear that God had led us individually to that decision, and right away we began pursuing all
of our options. “Orphan care” was a very broad subject to us at the time and we
quickly became overwhelmed with where to start. Thankfully, the Lord knew where
we’d end up, and He kept our hearts open and sensitive to His promptings and
direction.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
To make a very long back-story very short, we thought we were
to pursue domestic infant adoption, but that door was closed for us rather quickly. Around the time I went to India in February 2014, Jeramie and I both
sensed the Lord was leading us to our county’s foster care program. </div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
<i>(It’s worth mentioning here that when we answered the call
to adopt that August, my response sounded something like this: “Okay, Lord.
I’ll adopt. BUT. I will NOT foster. Mmmkay?”) </i></div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Ha.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
In March of 2014, after I returned from India, we attended a
foster care information session offered by our county. By the time we pulled
out of the parking lot that night, both Jeramie and I were fully convinced and
convicted that this was the path we were to take. Our training was pushed back due to Ethan’s surgery last July,
but by November 2014 we were “graduates” of our county’s MAPP class and became
fully licensed foster parents in March of this year.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Then…</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
On Thursday, April 23rd, on my way to pick up Ethan from
school after lunch with a friend, I got “the call”. A social worker from the
county needed to find a home for a four-year-old girl and her two-year-old
brother, and we were the last option for keeping them together. With a mix of
hesitation and excitement, we said "yes". On Friday, April 24<sup>th</sup> our family grew by two children.</div>
<div class="MsoNormal" style="text-align: center;">
<br />
<div class="separator" style="clear: both;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieDpMS7_A8nS6fVw2Etl5udPl1fJXVe5UYfkhAJx_dpT51WpT4Afm1u8bxZI-TSaS7VFY-68poRXVat9mxantVY1kug6GPRAD7uyO11yCZelT9ySJPBp53mqWHWEEtj8Rd8Do-cu5l1Gxu/s1600/IMG_7861.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieDpMS7_A8nS6fVw2Etl5udPl1fJXVe5UYfkhAJx_dpT51WpT4Afm1u8bxZI-TSaS7VFY-68poRXVat9mxantVY1kug6GPRAD7uyO11yCZelT9ySJPBp53mqWHWEEtj8Rd8Do-cu5l1Gxu/s640/IMG_7861.JPG" width="640" /></a></div>
<br /></div>
<div class="MsoNormal" style="text-align: center;">
Here’s where I lose my words. It’s easy to state the facts,
to relive the dates, and to remember where I was "when". It’s a heck of a lot
harder to explain the emotions, to put words to the trauma, and to wonder what
God is doing through all of this.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
I can’t tell y’all a lie. This is one of the hardest things
I’ve ever done, second only to Ethan’s birth and nine-and-a-half week hospital
stay. There are many parallels to that time we spent with him in the hospital, and many
of those same emotions have resurfaced, but it’s so different, too.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
The second night the kids were with us, around 3:00 in the
morning, I sobbed into the hair of our two-year-old, rocking him in my arms and
pleading with him to sleep. I muttered something along the lines of “we can’t
do this” and fought with the Lord about why it seemed as if we were being
punished for being obedient. I felt abandoned by the very one who had led us into
this mess and I was deeply grieving the the loss of "family" as we knew it. The darkness outside our window seemed like daylight compared to the
darkness within my heart that night. I will never forget walking into church the following
morning as a family of five, sleep-deprived and desperate for some sense of
normalcy. I wept on the shoulder of a dear friend of mine within seconds of
walking through the front door, and the tears continued to flow well into the
worship service.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
To this day, I still can’t pinpoint exactly why I was so sad
that first weekend. There was just so much to feel --<span style="mso-spacerun: yes;"> </span>from my own grief, to the sadness I felt for
our new children, to the fear our family was somehow being “ruined” by the
whole thing. I was a mess and, to be perfectly honest, I still have those
moments three months later.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
But. </div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
While Satan attacks me with confusion and doubt and exhaustion
and fear, Jesus remains true and steady and ever-present. That first Sunday
morning at church, when I could not open my mouth to sing a single note, and I
had no words to pray other than “why, Lord?”, the voices of our church surrounded
me and I could feel Him quieting my heart and singing over me. He is so
faithful and so good, despite how badly the enemy would want me to believe
otherwise. This whole experience is giving intense perspective to how Jesus may have felt on the cross, forsaken by His own Father as He followed Him in obedience, bearing the brunt of my sin so I wouldn't have to.</div>
<div class="MsoNormal" style="text-align: center;">
<br /></div>
<div class="MsoNormal" style="text-align: center;">
It’s hard and sad and exhausting, and some mornings I
wake-up wanting to give-up. Some nights, after putting three children to
bed
and falling onto the couch in a heap of frustration, I find myself
wanting my
selfish life back. But how can I give up on these children and live in disobedience to the Lord after all Jesus has done for me? When the two-year-old has a nightmare and finds
comfort
in our “sh-sh-sh”, or the four-year-old finally learns how to form the “I
love
you” hand, or I find Ethan snuggled on the couch, reading them a story, it's as if God is gifting me with moments of tangible grace to help me remember. In those
moments
I am reminded that this is not about me. This is not about us.<br />
<br />
This is about the extravagant, redeeming love that has been
shown to us by our good and perfect Father. It’s about the sacrifice Jesus
Christ made on our behalf so that we can experience that love in its fullest
form. Every single morning, I make the choice to give-up or to take the
opportunity to share that amazingly generous love with two children who may
never share my last name. Every morning, I die to myself a little more than the
day before and ask Jesus to lead the way. </div>
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Most mornings, I try to regain control before the sun has fully risen in the sky. Most mornings, I get it wrong. But,
man. On the days when I get out of His way and watch Him work in and through
this family He has created, it is one of the most beautiful messes I’ve ever
seen.<br />
<br />
I wish I could say that our days are
filled with more "beauty" than "mess", but that wouldn’t be true. We are still very
much experiencing fierce growing pains, and I think this is where the
Lord wants us. We
are learning so much about ourselves individually, as a family, and as
believers. Obedience has a funny way of highlighting sin, and some days
it
seems like we have the world’s biggest magnifying glass over our home,
exposing the depth of our ugly hearts. <br />
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On those days, I am reminded of Paul's words in Romans -- <i>where sin increased, grace abounded all the more. </i>Y'all, it is only by the grace of God that I put one foot in front of the other and choose to be obedient to the call He has placed on our lives. I often question if we're the right family for the job -- if I'm the right mama for these kids -- but His grace is sufficient. His power is made perfect in my weaknesses. I cannot say that I abide in that truth day-to-day, but I'm getting there.</div>
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We do not know how long the children will be with us, or if they'll go
back home at all. We don't know if there will be lasting effects of the
trauma they've experienced, or what those would be. There is a lot that
we do not know, so we hold fast to what we do: that the Lord has gone
before us and is not leaving us to do this hard work on our own; that He
has created the inmost being of these children, knowing that one day
they would be in our home; that His grace is sufficient and His mercies
are new every morning.<br />
<br />
Please pray for us. The days are long and hard. We are tired. Patience runs out quicker than it used to and tempers flare hotter and stronger than before. We do not want these children to merely survive in our home, we want them to thrive. We want them to know the depth of Jesus' love for them.<br />
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Above all, we want God to be glorified in the words we speak and the actions we show.</div>
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Will it be easy? No.</div>
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Worth it? Absolutely.</div>
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joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-58697936288312124502015-04-22T13:08:00.000-04:002016-01-08T12:58:16.889-05:00Remembering.<div style="text-align: center;">
Around mid-April, as the warm air moves in and the trees begin to bloom, I can feel it coming. The calendar pushes forward and I sense a heaviness in my heart that sinks deep down into the pit of my stomach. I attempt to push it away -- because what good is there in grieving a day that ultimately has a happy ending? -- but, thankfully, my attempts are futile. No matter how much I try to convince myself otherwise, some days are just going to be harder than others, and that's okay. For our family, April 22 is one of those days.</div>
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For the first time since 2009, this date has fallen on a Wednesday and I think about what <i>that</i> Wednesday morning looked like for us: Ethan was six weeks old and had not yet left the hospital, Jeramie was back to work while Ethan and I snuggled and played, home was just days away. Later that afternoon, Ethan woke up from a nap and it was obvious something wasn't right; tests were run, prayers were prayed, fears were calmed. Then, later that night: alarms blaring, nurses running; Ethan's blue and white gown thrown haphazardly across the room, yelling, syringes, CPR.</div>
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Over the course of eleven long minutes that Wednesday night, the Lord breathed new life into Ethan's body through the nurses and doctors who manually pumped his heart and expanded his lungs. I can live to be one hundred and five years old, and I'm certain the memories of that day will never fade.</div>
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But. Compare that scene to <i>this </i>Wednesday -- today: Ethan is six years old, Jeramie is at work while Ethan and I snuggle before school, I wash and fold his t-ball jersey for his game this weekend. He was diagnosed with the flu on Monday, but he's back to school just two days later. He's the healthiest, strongest, and funniest he's ever been.</div>
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So much grief.</div>
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So much grace.</div>
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At times I've tried to reconcile the grief of almost losing Ethan with the grace of getting to keep him, but it's not possible -- and I've learned that I don't really want to. The tension between the grief and the grace is the place where my faith grows. It's where I continually put my trust back into a good and gracious God and remind myself that Ethan is his more than he's mine.</div>
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When it comes to the hard days, I remember, but don't dwell. I grieve, but not without hope. I let the grief push me towards compassion, the grace towards humility. I thank Jesus for the new life he offers, the mercy he shows, and the grace he extends.</div>
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Because Lord knows, without him, days like today would be a whole lot harder.</div>
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<i>"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."</i></div>
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<i>-2 Corinthians 1:3-4 </i> </div>
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-15087737329273897482015-03-07T20:55:00.000-05:002016-01-08T12:58:34.400-05:00Six Years Later<div style="text-align: center;">
Dear Ethan,</div>
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Six years ago, your Daddy and I nervously found ourselves in the labor and delivery unit of the hospital where you would be born. We didn't know when you would come, exactly, but we were so eager to meet the baby who had been keeping me up at night -- by both your kicks and punches, and the uncertainty of your health. Of course, we knew nothing about your heart at that point, but we fervently prayed that God would safely bring you into our world. He faithfully answered our prayers and the next morning you came quickly, with a fierce determination that hasn't relented in the six years you've been here.</div>
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Tomorrow, we will celebrate all that those years have held for you -- the accomplishments and the challenges, the good days and the bad, the joy and the despair. We will remember your first days in this messed up world, though it be painful. We will thank God for allowing you to remain here with us and we will never cease to give him glory for how far you've come.</div>
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I hope you'll remember this once you're older, but a few weeks ago our family had the honor of attending a fancy event to raise money for the American Heart Association (or, "for special hearts", as you put it). You were, by far, the star of the show and the story of your life impacted hundreds of people that night. Ethan, I want you to know those first, heartbreaking days of your life have propelled change and enacted laws. They have offered hope. They have been specific places on our family map we can point to and say, <i>"God was there. And there. And there. And here."</i> Nothing is wasted, Ethan. God can take even the ugliest, saddest moments of your life and use it for good -- and he already has. As your mama, I look forward to seeing how he'll continue to use you and your story for his glory. </div>
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As you get older, kids can be a little more mean, questions can be harder to answer, and feelings can be more difficult to sort out. My prayer for you is that you will continue to face your days with the determination and optimism that you've had ever since you were a baby, knowing that the Lord is with you and has gone before you in any circumstance you may face. He is so good, Ethan, and the best decision you can ever make is to know him deeply and intimately. Your daddy and I, and even your friends, will let you down many times in this life, but God never will! </div>
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My prayer, as your mama, is that I will not hinder the good work the Lord is doing in your life. There are many times I want to minimize your vigor and strong-will, but I'm often reminded that those God-given qualities have served you well up to this point, and that he has woven them together, with all the other things that make you unique, to create something beautiful. My best moments as your mama are the ones in which I see you through his eyes.</div>
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And what a beautiful boy you are.</div>
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Happy birthday, my spunky, spirited, sweet, silly, six-year-old! You are so loved.</div>
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Love,</div>
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-mama</div>
joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-34303453046861132842014-12-02T10:50:00.000-05:002014-12-02T10:50:16.921-05:00Reorienting.<div style="text-align: center;">
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<b>reorient:</b></div>
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to change the focus or direction of</div>
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to adjust or align something in a new or different way</div>
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-------</div>
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I was on the phone with my best friend a couple of weeks ago, sharing with her how tired, frustrated, and annoyed I've been with motherhood these days. I'd hoped that a trip out-of-town with just Jeramie, Ethan, and me would give us the break and "fresh start" we were all desperate for, but Ethan proved to be even more difficult once he was out of the routines of our home.</div>
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"We just need a reset," I told her, with a few ideas already implemented, but not much energy left for figuring out the rest.</div>
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That following Sunday, our pastor was wrapping up a sermon series on the book of Job. Job has always intrigued me, especially after Jeramie and I took a hard look at our relationship with the Lord a few years ago. Our pastor made a few excellent observations that day, but my heart jumped when I heard him use the word "reorient".<br />
<br />
To paraphrase part of his sermon: God used Job's suffering to turn a good man into a better man. He reoriented Job's heart and, in the midst of terrible circumstances and suffering, Job learned to praise the Lord.<br />
<br />
Did y'all catch that? God <b>reoriented</b> Job's heart! He didn't just push some heavenly reset button, letting Job start all over on the same path, only to end up in the same prideful, arrogant place. God changed the direction of Job's attitude. He took Job from someone who justified himself rather than God, to someone who repented of his ignorance and prayed for the friends who brought him more suffering than comfort.<br />
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That Sunday, I was convicted that what our family really needed was to be reoriented, not reset, and that we could only do that by focusing on Jesus. We needed to remove distractions, quiet our hearts, and seek his wisdom.<br />
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I wish I could tell you that our days have been filled with nothing but love and peace since the conversation with my friend and that Sunday's sermon, but I can't. We're still struggling, but God is still working; we do not lose hope.<br />
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It is not a coincidence that all of this lines up with the Advent season. We are looking forward to celebrating Jesus' birth, and all the moments leading up to it, as well as the promise of salvation that comes with such an extraordinary gift. We wait in expectation of what God will do as we focus on him, lay our burdens at his feet, and ask him to align our hearts with his.<br />
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joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com2tag:blogger.com,1999:blog-754213252368419884.post-16867444486099584722014-11-08T14:10:00.001-05:002014-11-08T14:10:23.029-05:00Next?<div class="separator" style="clear: both; text-align: center;">
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Over the past five years, it always seems that just as the dust begins to settle in one area of Ethan's care, we find ourselves turning our attention to another. The day after his birth, after doctors had diagnosed his heart defect, I remember being in a room with one of the pediatric cardiology fellows and asking when we'd get to discuss all the other things that needed fixing on Ethan's tiny, beat-up body.<br />
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"We've got to take care of his heart first", he gently explained. "It will probably be a while before we can talk about everything else."<br />
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While I knew that to be true in my head (none of that other stuff really mattered if his heart wouldn't work), my less-than-logical side wanted every doctor in that hospital to be in the room with my son, fixing all that was broken.<br />
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Of course, y'all know the story. Ethan's heart did work (even when it "shouldn't" have) and we eventually got the chance to address the other challenges he was facing. The result of that was about a dozen surgeries and procedures before his second birthday and a lifetime of follow-up appointments with some of the smartest doctors in the country.<br />
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After the initial surgery on Ethan's arm, and the <b><a href="http://joyemullis.blogspot.com/2010/04/urgent-update.html" target="_blank">traumatic nerve repair</a></b> that followed a few months later, his hand has been the least needy area of his care. We see his orthopedic surgeon once a year, take a few x-rays, and teach Ethan how to button his pants and put on socks in between visits. The possibility of future interventions have been just that -- in the future. It never occurred to me that, just three months after open-heart surgery, we could be talking about yet <i>another</i> surgery to increase the functionality of Ethan's left hand.<br />
<br />
But we are.<br />
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At Ethan's yearly visit in October, his orthopedic surgeon noticed that Ethan has developed substantial muscle and range of motion in and around his left index finger (yes, the one that was partially amputated during the nerve repair). The surgeon said this is unheard of, based on the surgeries and trauma Ethan's left hand has been through, but was incredibly promising. He began to brainstorm with us about all the possibilities this opened up for Ethan and referred us to another hand specialist/surgeon at Duke.<br />
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We met with that surgeon a few days ago and the ball is now rolling towards the direction of one more operating room. The idea is to rotate Ethan's left index finger into a thumb position, thereby giving him the ability to have a pincer grasp on his left hand. This is only possible, however, if Ethan's hand has all-of-the-tendons in all the right places. A MRI would be the best way to find that out (but, pacemaker), so Ethan will be having an ultrasound of his hand on Friday to try to gain information that way. The results of that ultrasound will determine which surgical options we have, if any, and how to proceed. We'll meet back with the surgeon the Tuesday before Thanksgiving to go over all of that, and hopefully head into the new year with a plan.<br />
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I'm not gonna lie. All of that put me in a bit of a funk after leaving the appointment. I was aggravated with scheduling appointments and shuffling commitments, nervous for what will come of all this, and sad that this is even Ethan's reality.<br />
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But, God.<br />
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He spoke truth into my ugly heart, comforted me, and reminded me that we're not going at this alone. He hasn't left our side a single second since we stepped on this crazy train five and a half years ago, and His faithful, unrelenting love shows no signs of stopping anytime soon -- not anytime ever. He has crafted every tendon, nerve, and artery in Ethan's body and knows him better than any surgeon at any hospital -- better than us, even.<br />
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Now, instead of feeling sad or fearful, I feel burdened. I want Ethan to see that truth, too; I want him to experience it and know it and come back to it all throughout his life. I want him to see a bum arm and a bad heart and see Jesus. I want to see it that way, too; not just in hindsight, but in the moment. Instead of being annoyed with scheduling one more appointment, I want to see that appointment as an opportunity to say, <i>"just look at what the Lord has done!" </i>I want to use this season He has placed us in to display His glory, whether that's at the park watching Ethan climb ladders or sitting in an uncomfortable chair awaiting results of another surgery. It's a lot easier to say (and really easy to think) than to actually do, but I'm trusting that God will give me the grace I need in the moment to live my life in this way.<br />
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I'm also asking Him for clarity (is that our word of 2014, or what?!) as we move forward with these appointments. I made it very clear to the new surgeon that our goal for Ethan is functionality. If Ethan's hand, as it is today, is at maximum functionality, then we have no desire to proceed with any other surgeries for cosmetic reasons -- that will be a decision Ethan can make when he is older. However, if a future surgery can increase the function of his left hand and benefit the way he interacts with day-to-day life, then that is something we'll need to strongly consider.<br />
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So. We will see what the ultrasound shows next week and go from there. We're not sure what's next for our boy, but we would absolutely love your prayers for our family and Ethan's medical team as we enter into these appointments and conversations over the next few weeks.<br />
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(Is he the cutest x-ray patient you've ever seen, or what?!)<br />
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-52033296247745787422014-10-15T15:02:00.000-04:002014-10-15T15:02:54.182-04:00Catch-up.You know what makes me smile? Google tells me that there are about thirty of you who faithfully come to this little ol' blog every single day to check-in on our family. Every single day! But for almost two months now, you've been coming over here, looking for an update, and finding none. Yet, you still keep checking and, while it probably seems silly to most, I'm so encouraged by that!<br />
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Truth is, I've missed writing here, too. Just about every single day I think to myself, "I really want to finish writing about Ethan's surgery." But then the dryer buzzes or the carpool line beckons or I fall asleep at 9:15, and contributing anything to this space gets pushed further and further down the mental list of things I'd like to do.<br />
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Today I'm determined to change that, even if it's just a few photos to show all the ways God is at work in our family right now.<br />
<br />
Since my last post (and Ethan starting kindergarten)...<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBmnpCIYcfb_GvUuEEnXnRtJY8nK05T1bxE47vSmhuV563kaXI64S7fo9Dt0dype72An8QHf2_LRHQPermem9XWFXr6l0wZdXUr8OvhruqaVUiTvQniL8pVUc_Ylvy90tLgH_Ngcrx3qOn/s1600/IMG_4148.JPG" height="640" width="640" /></div>
<br />
...we had our first post-op pool trip...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6EiRxRGisjBpSHdgT0W0Zs2h2KucmYljpX5MDouwX2uufRhm63Mx6XLg4-fdNdFjW6mFRwyM-3FL8NGGHGb5kF88hGYaFZGD5ngUk1s2CDPNIlTnXH2nQzcbrT-NR85uli-IVs4JDaNOR/s1600/IMG_4260.jpg" height="640" width="640" /></div>
<br />
...we spent a weekend at the lake...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinV_t_aj30_-hhRRCX_ZjVFZzlZoYe3j5QMiADtNcYfovaYRKs8gg9h7CBEx0e2KJiO26COKDFa7NmXkbHuLg5YJ07fH4G0mtZyfQ9Ko5Ptd2vU5CHyC7JmBg_-jJ_BWw5odRTphePtWCg/s1600/IMG_4410.JPG" height="640" width="640" /></div>
<br />
...Jeramie moved into a new position with his company...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9G-78hwZBCbVVIhkyyQzBzXawGCITk6y8fbjDd_Nm6te9XnAbk_AhaX9rB8nnLzvY0NFn9STOMzA6TXGQrMzIwlZQ0QQwwKDBiDbQApFZv1YgvqEYHUFNzswuR_QMDPwH2eBgy6rydWin/s1600/IMG_4081.JPG" height="640" width="640" /></div>
<br />
...we started the training for our county's foster care program...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg2drK8fv4dj3klA-AnkcWTfkc-8-cPxj-mfNsNvbL3wewSvD40Awg0OBmEzRcqmX9FpaVcRsP67tEIpHw51oL7GmIHQjL54_umG9cbmQcy90Cwh4y9mKF-1fTWDEd7eUl-5wDdusORlQ99/s1600/IMG_4449.JPG" height="640" width="640" /></div>
<br />
...we celebrated my daddy's 72nd birthday...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihu3_8XbDBKpyUruZQx9U_TdOp0WXnQPtwBtW8A_nfeZURFfABaWz0iR8Rpiw522gxWvlvw3yoolfZ1IUTVD0BqXLeHaG69ErScIpfpwQM4jD-P2UsuFGas04LYTdRXG2sBNCmNxl8FHDI/s1600/IMG_4510.JPG" height="640" width="640" /></div>
<br />
...Ethan had a check-up with Dr. I...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP1nFiMscpL8b1FALDl26ZZ5p0jKV6Q9EniZ93Uk0zATb5sZbMsvbzweW4RYdJ5yfAlnieqWS7Oes4XfTRCwuuQyj1osPhzDl45FX0Q6Y5m5fiBaMtVPINWcuWr4uB_yVhngBZ2BKPoj6c/s1600/IMG_4550.JPG" height="640" width="640" /></div>
<br />
...we participated in our 5th Heart Walk...<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEBaEba0YdiLHAa-UT1MUslbB4NlZQuhvLxquU8Ww21Ud2U_wG0RbUxF4b7I_qiMeGLpR-6V3Y_hgonVw6Q8OEM0lzzVQTpvUoRjD0lR011zkJQt7x2tb50mWgYinyiA03IfmQDx8aXvFZ/s1600/IMG_3208.JPG" height="640" width="640" /></div>
<br />
...my daddy was unexpectedly admitted to the hospital for four days...<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivOBIqWsQojh8XQMbCNZ6JvFPo8k5smPlKRhJKyfEcbIxhhpFYLiR-grfICcDQtO8W5358VP-72YFV5jcfn5Qt9thd2hFgbLUujhOKNRB0EQjG2ps2f15PErEWgs2geXJp84XWZjSyxAw5/s1600/IMG_4636.JPG" height="640" width="640" /></div>
<br />
...and Ethan lost his third tooth!<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtNHrks_CLbHFRslSNLcTT2fmrhyphenhyphenjaYR8vPbwDTKCmbBkM2IOc4PTKBQsECyDSful1jcL921BdnTZe7vfoyfxYO5tCxae3Y8k9XcqdcaJt6ELfY71ZLzwJip9SIFFlK9z22eJlinJLsZwv/s1600/IMG_4673.JPG" height="640" width="640" /></div>
<br />
How's that for an update?<br />
<br />
That silly boy of ours is doing very well these days. He's loving kindergarten, making lots of new friends, and learning a lot about responsibility and self-control. All looked great at his check-up with Dr. I in September and he doesn't have to go back until March! We are very relieved to have the craziness of the summer behind us, and that experience only magnifies the significance of the milestones Ethan is reaching. From swimming, to loosing teeth, to reading and writing, open-heart surgery makes us keenly aware that he's not granted a single second of those things. The grace and mercy that has been poured out on our boy from his good and perfect Father is so humbling and encourages a constant attitude of thanksgiving!<br />
<br />
While my daddy gave us quite a scare, just days after celebrating his birthday, he is doing much better now! Those details are for a whole other post (which I'll likely never write), but just know that you're never too old to change. God is always in the business of redeeming and restoring, and the fact that my daddy is alive right now is just one sliver of evidence of that truth.<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFsSepiL37KtxZCnoqjo9opBiedML4XwBteGt-OiWQTLIDQ3MiKwTj5Rw4kmRHiZE_7lujQeQqCXZZ7e15GgBRv5jLXudSONcORDIBeOUCAzVCOFou7ji01Oyju0NK-IbjVvjtu-ByTYY5/s1600/IMG_4633.JPG" height="640" width="640" /></div>
<br />
Jeramie and I are about halfway through our MAPP (Model Approach to Partnership in Parenting) training and we've really enjoyed the process so far! When we first said "yes" to adoption last August, I never thought God would lead us to foster care -- and, to be honest, I really didn't want him to! -- but he did, so here we are. While our deepest desire is to adopt from the foster care system, we are agreeing to open our home to those children who need a temporary, stable, loving environment, too. Will it be difficult? Absolutely. Will it be more difficult for us, than for the children who are being shuffled from home to home? Probably not. Perspective makes all the difference.<br />
<br />
The past couple of months have been a bit of a whirlwind, to say the least, but the Lord is
sustaining us and providing for us and encouraging us all along the way! We are so thankful. <br />
<br />
Have a happy week!<br />
<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYnZApfzWweQXGSN-CN7QLqHjIS1WTK4gqO_ULknKQNcuYKOFptW2u20qKJjQl0Ud4wfwRORnxRQ75Br4j26eQO63t28inaYZGp8KSc-vdE5lsfkx_uC107kiPLJACo7iHthUv4P7Gwg_D/s1600/IMG_4663.JPG" height="640" width="640" /></div>
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-47882979657326088162014-08-28T21:16:00.000-04:002014-08-28T21:16:04.120-04:00Kindergarten.If a picture is worth a thousand words, the following photos would speak of...<br />
<br />
<div style="text-align: center;">
<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxiJeNsVobeVgA3hGncqX_3fevbkjrThccp_XsxV5PYouZ2x5tLV3oi4Sj2tJYxB5osTsi6z7ZO7MLXCQfjpOkk_c9UWP8wFxqrTMDSIkPsWWa4hRxXYCzJ-MbYWLrezV0P-w_7cu8Y7Am/s1600/Photo1.jpg" height="640" width="426" /> </div>
<br />
<div style="text-align: center;">
...excitement.</div>
<div style="text-align: center;">
...grace.</div>
<div style="text-align: center;">
...mercy. </div>
<br />
<div style="text-align: center;">
<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgh-BEIh9Hz0agIQo2y4zvRaNhs1rc21LZB8wfqRLuQuNS-Nzhlr1DJBZqFW5eqsWJ4yxFNwmNFWqryMUNrPsekJaZEJpMvjWXPm1PAufOH0SRBbTaFTBsdZnRKEK2z7YcIxLvbostzyuLb/s1600/Photo3.jpg" height="640" width="426" /> </div>
<br />
<div style="text-align: center;">
...joy.<br />
...love. <br />
</div>
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOHDw12vjedwz4Y-GQYrPf2_NVbj5l0LKynKkB8rdRahyphenhyphenciyiqAgu7mcgwMtLHyewO3imvjdF944lVgAfihMqzLRlNaYFbd4nD36Wt74_sz2ogqyeQPawV-xmK3yBt9kh1GJJc1WhnfhhQ/s1600/Photo4.jpg" height="640" width="426" /></div>
<br />
<div style="text-align: center;">
...courage.</div>
<div style="text-align: center;">
...growth. </div>
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxlvh9PEa_JhH1xDgPuDugEHS80UribzeCXEzp327c_MyHLF8glEtvR92SXX9TmLcqjeYO4vY1kuucayrCLHNmfziHCo7xmdY52_xKMN2LrqajcBNHRU42DzsU_TY-XEjCzyRIbRmekNY8/s1600/Photo2.jpg" height="640" width="426" /></div>
<br />
<div style="text-align: center;">
...healing.</div>
<div style="text-align: center;">
...redemption.</div>
<div style="text-align: center;">
...life. </div>
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<i>For this child we have prayed, and the Lord has granted us what we asked of him!</i></div>
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<i>-1 Samuel 1:27 </i></div>
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<i>{paraphrased} </i></div>
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joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-1890977715020851472014-08-24T21:08:00.000-04:002014-08-24T21:47:40.749-04:00Miracles.<div class="separator" style="clear: both; text-align: center;">
</div>
Keeping up with the details of the past three weeks is like keeping up with the laundry we've accumulated during that time. I jot down just enough to make sure I don't forget, and wash just enough to make sure we all have clean underwear, but anything more than that just isn't happening! At some point, I will share the specifics of Ethan's post-op stay, but the details of this past stay are begging to be shared first.<br />
<br />
But, before I do that, let's catch up on the timeline of events<b>:</b><br />
<br />
<u>Stay #1:</u><br />
July 29th - cath -- admitted to Duke<br />
July 30th - open-heart surgery<br />
August 3rd - HOME for six days!<br />
<br />
<u>Stay #2: </u><br />
August 9th - emergency department for post-op fever -- admitted to Duke<br />
August 11th - diagnosed with <a href="http://en.wikipedia.org/wiki/Postpericardiotomy_syndrome" target="_blank"><b>PPS</b></a><br />
August 13th - HOME for six days!<br />
<br />
<u>Stay #3: </u><br />
August 19th - emergency department for swollen, tender belly, and fever -- admitted to Duke<br />
August 20th - surgery consult to remove infected pacemaker<br />
August 21st - HOME!<br />
<br />
So, how did we go from a surgery consult one day to home the next, you ask? It's a very long story, but I assure you -- you're gonna want to keep reading!<br />
<br />
A couple times throughout the morning of August 19th (Tuesday), Ethan complained of pain in his right side. If he turned a certain way, coughed, or took a deep breath, he'd wince in pain and tell me his side hurt. Each time he said so, I raised his shirt and inspected his incisions. Nothing looked out of place, and Ethan continued on with normal activity. I thought nothing of it until the next time he complained.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR3rJpq0eFrtS1C7Nef75xbJR9Yx1mPFc5_nefmcjU9gKYxMZFa8PvXJEjXlhCekUBu2U32Mbsq2I1YskkgHPMHEwUF97DTDnBpHKAh66v2vztLWLNmZ200O41XFYT2Y2Or7aw9_PDyCzO/s1600/IMG_4017.JPG" height="640" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Tuesday afternoon -- playing happily</i></td></tr>
</tbody></table>
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<br />
Later that evening, right before dinner, Ethan was sitting on the couch and not feeling great. He didn't want to eat, didn't want to move, didn't want to do anything other than sit and watch shows. He didn't even want to tell us that he wasn't feeling well. We finally got him to admit that he was in pain, and Jeramie went over to inspect again. What he discovered was that the right side of Ethan's abdomen, where his pacemaker sits, was swollen and extremely tender. He wasn't even able to stand up straight without being in obvious pain.<br />
<br />
We knew right away something wasn't right, and within minutes I had talked to both his surgeon (who was out of town!) and the on-call fellow at Duke. While I was on the phone, Jeramie noticed that Ethan also felt hot to the touch. I was upstairs at that point, talking to the fellow, and when Jeramie came up to tell me that Ethan's fever had spiked to 102, we packed a bag and drove to Duke -- but not before praying that God would protect our son and ultimately be glorified in whatever was about to happen.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhip7maJM2eBVU_JGXW1i79RubuuQyzCG0bgtCIdZfnx07M_2Yyawqr4SjQfrEV1FmWgKFJeF0Sxqw43Ny5y2dL60yjW7NjrAOn7-kFYuHN2WYeKBAR8JHK9Y6aKtDGwV-B8EHKlDxYew-J/s1600/IMG_4023.jpg" height="640" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Sunset over Durham on our way to Duke</i></td></tr>
</tbody></table>
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<br />
Ethan slept the entire way to the hospital and looked absolutely awful. He felt miserable, too, and any movement involving his abdomen caused him to whimper in pain. We gave him a dose of Tylenol before leaving the house, which was successful in bringing down his fever, but did little in the way of pain management. <br />
<br />
We spent all of Tuesday night in the emergency department, running tests and looking for answers. Any time anyone pressed on Ethan's belly, he would cry and push away their hand. Labs and blood cultures were ordered, as well as chest and abdominal x-rays. Around 11:15 p.m., the fellow came into our room in the ED and broke the news to us. He had been on the phone with Duke's other pediatric cardiothoracic surgeon who, after hearing the fellow describe Ethan's condition, ordered that Ethan not eat or drink after midnight in preparation for surgery the next day.<br />
<br />
We were devastated. It is a general consensus in the medical world that surgery to remove an infected pacemaker, treatment for the infection, and surgery to place a new device is one big, difficult mess. It means weeks in the hospital and comes with significant risks. No one wanted this for our son, but we knew the infection had to leave his body somehow.<br />
<br />
At that point, I sent the following text to our family and a few friends...<br />
<br />
<i>"Really can't believe I'm typing this.. Ethan will most likely be having surgery tomorrow to remove the pacemaker. He'll then be temporarily paced externally while he receives IV antibiotics, then he'll go back in to have another generator placed. We are sad and frustrated. Things could change overnight and the surgeon may think otherwise once he examines Ethan in the morning. A miracle would keep Ethan out of the OR." </i><br />
<br />
...and Jeramie and I began fervently praying over Ethan. We prayed big, bold prayers with the expectation that God would answer them. For me, it sounded something like this: <i>"God, I know you can heal my son. I know you can take all this mess away right now. So, do it already and show this hospital who you are."</i> I can't describe the feeling in the room at that moment, but we knew we were standing on the edge of something huge.<br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCaYVunqCrIRNIK84pyN5bHStpuYUBZlHPlNsgOgyPVseBO8o1yrSidGtoKOksdeyA81AfAyEtYv-J0U5tP8xW8kDSboiE7_K58jBd6lMuaINSj69t9A3Lwm1WbAW3b2zTxvZsAjptP27h/s1600/IMG_4030.jpg" height="640" width="640" /></div>
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Around 1:30 Wednesday morning, as Jeramie and Ethan were moving to a room on the floor, I headed home to pack a few more things. When I got back to Duke a few hours later, Ethan was sleeping comfortably and I joined him while Jeramie "took watch". Around 7:30 a.m., Ethan woke up needing to use the restroom. We helped him out of bed, noticing that he was moving more easily than he had been the night before. As we helped him into the bathroom, I lifted his gown and stared wide-eyed at his non-swollen belly. It was still tender at that point, but both he and his belly looked significantly better compared to the night before! Right away, Ethan asked to watch something on TV and we obliged, thrilled to see him feeling better. <br />
<br />
Not long after he had woken up, the surgical NP stopped by to examine Ethan. She was slightly confused, given that what she was seeing that morning didn't match up<i> at all</i> with the report from Tuesday night. A few minutes into her exam, Dr. L (the surgeon) walked into the room. He shook my hand, looked at Ethan, looked back at me, looked <i>back</i> at Ethan (sitting up happily in the bed) and said, <i>"So, what's going on here?"</i> The next words out of his mouth, after looking Ethan over were, <b><i> </i></b><br />
<br />
<b><i>"I'm not taking this kid into the operating room today."</i></b><br />
<br />
He went on to tell us that children with raging infections don't look like Ethan did that morning, and that he was expecting to see a very different child lying in the hospital bed. <br />
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<img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNOrtnWOuDEcieBFNkAg8VMLkEWZLaqEBnohBYl-pqqy8c7HWZQEWaTbr4T10hMGw03q7eAN9zGfOjqgjVgvDhKYxvBs9kQG4TDLmvupXxQtepKsVPU7PRk-PJDAh4YldLH2lmw2v9UzZk/s1600/IMG_4033.JPG" height="640" width="640" /></div>
<br />
In order to find out what the team needed to treat, he ordered that Ethan stop receiving IV antibiotics (he had gotten one dose of two different antibiotics at that point), and that we stop giving him around-the-clock Motrin that had been prescribed for the PPS. He explained that an infection that required surgical intervention would "declare itself" within a day or two and would be fighting to find its way "out". With Ethan's chest tube site and JP drain site not yet fully healed, the infection had ample opportunity to ooze -- something we hadn't seen at any point during Ethan's recovery. Right before he left, he described himself as "underwhelmed" by the whole situation and assured us that was a very, very good thing. I clapped my hands and told Ethan God had given us the miracle we prayed for.<br />
<br />
No one could believe the difference Jeramie and I saw in Ethan from Tuesday night to Wednesday morning. I told Dr. L it was <i>literally</i> "night and day". At that point, the fellow was the only person from the medical team to have seen Ethan both times, and he was shocked and confused when he laid eyes on Ethan during rounds Wednesday morning.<br />
<br />
Later that afternoon, Ethan was sent down to radiology for an abdominal ultrasound. Another possible cause of Tuesday night's symptoms was that Ethan had a hernia push through and cause his pacemaker to bulge. We were warned that it would be difficult to diagnose a hernia in the <a href="http://en.wikipedia.org/wiki/Fascia" target="_blank"><b>fascia</b></a> behind the abdominal muscles because of the pacemaker itself. It would not be easily seen via ultrasound, but there were things Ethan could do (cough, crunch his abdomen, etc.) that could give the radiologist decent images. <br />
<br />
Ethan was very cooperative throughout the ultrasound, thanks to a decreasingly tender tummy and Ativan. He coughed, crunched, and stayed perfectly still while the sonographer scanned his abdomen and the radiologist watched over her shoulder. They were able to rule out any issues with his appendix, noticed no fluid build-up or abscess, and saw no indication of Ethan having a hernia. In other words, the findings were completely normal. At one point during the scan, the radiologist was talking through the events of the past day with us and said, <i> </i><br />
<br />
<i><b>"Everything I see is totally normal. At this point, it must have been a hernia that you saw on Tuesday night</b> <b>because a pocket of infected fluid just isn't going to spontaneously disappear over night</b>."</i><br />
<br />
As I'm looking into the eyes of this intelligent man, listening to him search for natural causes and explanations, I look out the corner of my right eye and see Jeramie's head turn towards mine. I smile as I continue to listen and, in that moment, I've never been more certain that we've witnessed a miracle.<br />
<br />
Unfortunately, during Ethan's ultrasound, he spiked the highest fever to date in his recovery -- 102.8. The phlebotomist came in to draw more blood for labs and cultures, and the fever persisted for a few hours. We resisted fever reducer at first, because we wanted to see what his body would do on its own, but eventually gave him Tylenol around 8:30 that night. By 9:00 it was down to 99.5 and it remained normal for the reminder of the night.<br />
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<tr><td class="tr-caption" style="text-align: center;"><i>Snuggles, Frozen, and BlowPops on Thursday morning</i></td></tr>
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On rounds Thursday morning, we learned that even during Wednesday's fever spike, Ethan's blood work remained normal. There were no markers for infection and the blood cultures from Tuesday night were still negative almost forty-eight hours later. The team did note that one indicator of inflammation had increased during the fever, which was in-line with PPS. They suggested that we stop the Motrin treatment completely, change over to steroids, and once again "squash the fly with a sledgehammer". Thinking that they would want to monitor Ethan during the switch, I asked, <i>"So, that means home... tomorrow?" </i>With smiles, the team looked at each other, looked at me, then said, <b><i> </i></b><br />
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<b><i>"Nope. Today."</i></b><br />
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They went on to reiterate that the infection would have reappeared by that point if it was going to, and that with every passing day Ethan spent in the hospital, he only increased his chance of catching something else. Given that he would be starting a high dose of Prednisone, which would compromise his immune system, they (and we!) wanted him out of there sooner than later. I grinned at them like a kid in a candy store, clapped my hands, happy-danced in the hallway, and declared God's glory among Ethan's medical team!<br />
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Now, I would be lying if I said I closed the door after rounds and had complete and total confidence that Ethan was fully healed. Almost instantly after rounds, I began to doubt and fear. Satan desperately wanted to rob us of the joy we were feeling in that moment and surely wanted to steal the Lord's glory. I laid my head on Ethan's bed, confessed my lack of trust and belief, and worshiped in adoration of what God had done over those two days -- from negating the need for emergency surgery to safely sending us home.<br />
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So, what now? We have been home since Thursday evening and Ethan
hasn't even come close to spiking another fever. He is on Prednisone
until tomorrow to treat the residual PPS and hasn't complained of side
or belly pain a single time. In fact, he did a handstand (a handstand! three weeks post-op!) on our couch
last night during a family dance party and proudly declared, "And it
didn't even hurt!"<br />
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What's interesting is that Ethan's discharge paperwork states that he was in the hospital for an "infection of the pacemaker pocket", but that we went home without treating said infection. While he did receive those antibiotics overnight between Tuesday and Wednesday, it's understood by everyone involved that two doses of medication don't have the power to wipe out an infection of that caliber -- but I know Someone who does.<br />
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We are in awe of our God. We trust in his sovereignty and we are humbled that he saw fit to give us the miracle we begged him for. During a week of so much hurt and loss in the world of heart defects, I don't pretend to understand why we got a "yes" while others got a heart-breaking "no". But I do know that the events of Tuesday and Wednesday have led me to a place of gratitude and humility, and is yet another spot on this journey where we can pause and confidently say,<br />
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<i><b>"Look what the Lord did there."</b></i><br />
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-37668903928246385872014-08-15T21:03:00.002-04:002014-08-15T21:03:48.703-04:00Home (again).Wow -- what a week. After any major surgery that comes with a substantial recovery time, we know that readmission for any number of reasons is always a possibility. Did I really think that we'd end up back at Duke, less than a week after leaving the first time, though? Nope. We are so tired, but so grateful to be back home.<br />
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Ethan was discharged (again) on Wednesday morning, after having stayed the exact number of days in the hospital as he did for post-op recovery. Sadly (for all of us), a 48-hour infection rule-out turned into another four-day stay due to some dehydration issues. After <a href="http://joyemullis.blogspot.com/2014/08/results.html" target="_blank"><b>Monday's results</b></a>, everyone expected we'd be out of there by Tuesday morning. But, nope. It was determined on rounds Tuesday that Ethan's fluid intake (and subsequent urine output) was uncomfortably low, so we earned ourselves another day's stay. At one point on Tuesday afternoon, I looked at Jeramie and sighed, <i>"How did we do this for nine and a half weeks?"</i> Of course, I know it's by the grace of God that we came home after those long two months, and that we brought our boy safely back home again after these two shorter (yet still stressful) stays.<br />
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But. The unexpected nature of this week's visit did something crazy to my typically calm hospital demeanor. At one point in the early hours of Tuesday morning, after I had silenced Ethan's monitor alarm every fifteen minutes, I stood at the head of his bed and watched him sleep, but couldn't keep myself from wondering if he was going to go back into cardiac arrest. The sounds from the monitor were the same, the "alarm fatigue" was the same, and I was looking at the face of the same healthy (or so we thought at the time) little boy. In my illogical, sleep-deprived state-of-mind, the next step was that his heart would stop. After a time of prayer, cussing at the monitor, and having an early morning visit from Dr. I (Ethan's primary cardiologist), I finally allowed the Lord to calm my heart and trust that Ethan truly was okay. That incident put me on edge for the rest of the day, though, and finding out that we weren't going home that afternoon was a punch to the gut.<br />
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But, God.<br />
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He sustained us and showed us such goodness that, even during those dark moments, I knew we weren't fighting this alone. A few of my favorites...<br />
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-For all of Ethan's IV pokes and blood draws (three total) from Saturday night in the emergency department, until we were discharged on Wednesday, the nurses and phlebotomists were able to gain access on the first try. This is unheard of for Ethan's previously tiny, easily-blown veins!<br />
-When Ethan was admitted on Saturday night, he was taken to 5317 -- the very first room we lived in once he was healthy enough to leave the PCICU as a baby -- and Shannon was his nurse. I wrote about Shannon <a href="http://joyemullis.blogspot.com/2009/04/ups-and-downs.html" target="_blank"><b>back in April of 2009</b></a> . God sent her to us then, and He sent her to us again on Saturday and Sunday nights.<br />
-Dr. I was in the hospital just about every day of our stay. I can't adequately explain just how the Lord uses him to comfort us, but he always stopped by at exactly the right times, always bringing just the right balance of doctor and friend.<br />
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...and there's even more than that. Visits from friends, ice cream in the courtyard, "wishing" in Jesus' name at the coin fountain. God not only took care of the medical details, but he gave us exactly what we needed emotionally, as well. He is so great, and greatly to be praised!<br />
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So, now we're home and keeping a close eye out for any signs of infection. As of Wednesday night, Ethan's blood cultures were still negative and his incisions continue to look better and better. He is still spiking fevers anywhere from 100.5-102 degrees in the late afternoons, but Dr. J (Ethan's surgeon) assured me that this is all in line with <a href="http://en.wikipedia.org/wiki/Postpericardiotomy_syndrome" target="_blank"><b>PPS</b></a>. Ethan also wore a Holter monitor from Wednesday to Thursday, and we should have those results sometime next week.<br />
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We are praying that this is all behind us soon and that Ethan starts to feel the benefits of the surgery. We would love to have your continued prayers for rest and recovery -- we are determined to end this summer healthy and happy, with some much needed "normal" family time! <br />
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Thank you (again) for your prayers and encouragement -- we love y'all!<br />
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-81342033239678454862014-08-11T21:25:00.000-04:002014-08-11T21:25:13.389-04:00Results.Today has been a very (very!) long day. Ethan slept well last night and managed to sleep-in until 8:15 this morning! We hit the ground running as soon as he woke-up, though. By 10:00, I had met with the NP, Ethan had his blood drawn, and he was sent downstairs for an echo. Once we got back to our room, it seemed like every time I closed the door, someone else was knocking on it. Thankfully, Jeramie's mom came to visit and she and another friend entertained Ethan while I took a much needed shower. The hospital life is far from glamorous.<br />
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During rounds, we learned that Ethan's labs looked better overall compared to Saturday night's numbers. This is very good news! He will have more blood drawn tomorrow and, as long as those numbers look better than today's, we should be able to go home -- praise the Lord! We also found out that the abdominal ultrasound looks fine, apart from some expected inflammation, and that nothing has grown on his blood cultures yet. Tonight will mark 48 hours of IV antibiotics, so I'm hopeful that whatever this is is on its way out.<br />
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So, what is it? Dr. J and Dr. I think it's a post-op syndrome known as post-pericardiotomy syndrome (PPS). Unfortunately, there's not a specific test that can prove this, but everything seems to point to it being the culprit. The good news is that it's an inflammatory syndrome that's treated with ibuprofen (and possibly steroids). We'll learn more about that plan on rounds tomorrow.<br />
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Tonight, I am thanking God for a day of good news! Dr. I came and sat with me and Ethan for a bit this afternoon, and the Lord used him to provide a great deal of comfort to me. There have been many moments like that scattered throughout this stay and I'll be sure to share those details soon. For now, know that God is good and we are thankful. Tired, but thankful.<br />
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Thank you for your continued prayers!<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-58394480352629183502014-08-10T11:07:00.000-04:002014-08-10T11:07:06.122-04:00We're back...Hey friends. If you've been following along on Facebook, you know that Ethan has been running a low-grade fever since Thursday afternoon. He was seen by Dr. J in clinic on Friday and everything looked a-ok -- chest x-ray, labs, incisions all checked out just fine!<br />
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However, Ethan's fever spiked to 102 degrees yesterday afternoon and we brought him to the emergency department around 8:00 last night with bags packed. They started an IV, drew labs and blood cultures, analyzed his urine and ordered an abdominal x-ray. We were brought to a room around 11:00 and we'll be here until at least Tuesday morning.<br />
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On rounds this morning, we learned that his CBC levels are elevated compared to Friday's levels, which is a bit unsettling, but that his abdominal x-ray and urine analysis looked okay. The plan is to let him rest today, get an abdominal ultrasound, and draw more labs tomorrow. The team is watching the cultures for any growth and he is on two different (and very strong) IV antibiotics, which he'll be on for at least 48 hours.<br />
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If tomorrow's labs look okay, and nothing has shown up on the cultures, we'll be able to go home Tuesday. If the labs are unchanged, or trending in the wrong direction, we'll be here for a week.<br />
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The concern is that there could be a possible infection on Ethan's pacemaker hardware, hence all the abdominal testing. As the attending said this morning, we may be squashing a fly with a sledgehammer, but it's a considerably better plan than having to open him back up to clean out an infection that was allowed to run rampant.<br />
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Please pray for us. Ethan is actually excited about sleeping in the hospital again, but I can't say Jeramie and I are as thrilled. We covet your prayers and continue to be so encouraged by them!<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-28302801210662728242014-08-07T18:35:00.001-04:002014-08-07T18:35:46.247-04:00The Details -- Surgery DayI know I must sound like a broken record, but it's mind-boggling for me to think that Ethan is now eight days post-op and we have been home for half of that. I've spent a lot of time re-reading posts from Ethan's first couple months of life, and I stand amazed at what God has done -- then and now.<br />
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This blog, originally thought of as Ethan's 'baby book', has morphed into an Ebenezer of sorts. It's where I go when I need to be reminded of God's faithfulness. It's five years worth of stories and answers to prayers. If you find yourself with extra time on your hands, I would encourage you to go read the posts from April and May of 2009. <i>Taste and see that the Lord is good!</i><br />
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I want to share the details of last week so that we'll have yet another reference point to which we can come back and say, <i>"See what God did there?!"</i> It's also super helpful for me to document the medical details of Ethan's care, as they serve as puzzle pieces to the ever-growing picture of our son. From the smallest to the biggest, we know that every moment I'm about to share was ordained by a gracious and loving God!<br />
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If the details interest you in the least, read on and celebrate with us! I'll break them up into a couple different posts, starting with his surgery day.<br />
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<u><b>Wednesday, July 30th</b></u>: Ethan was taken back to the operating room around 8:45 a.m. He was happy and calm the entire morning and, with a fast-acting dose of Versed in his IV, he was wheeled down the hall with no issues whatsoever. Me? I sobbed into Jeramie's chest for a solid three minutes before joining our family and friends in the waiting room.<br />
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We received updates every hour, beginning with the first incision at 10:30. We had a slew of people waiting with us, for which I was incredibly grateful. I would not want to go through something like this without the Lord and our family and friends!<br />
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It took quite a bit of time to get through the scar tissue, but by 12:30 p.m. Ethan was on bypass and Dr. J had begun the actual procedure. Replacing the conduit (which could be thought of as a 'reconstruction', but was technically considered a replacement) and replacing the pacemaker battery took considerably longer than we anticipated. We prayed that Ethan wouldn't have any adverse effects from the prolonged bypass time and the Lord faithfully protected him! By 4:30, Ethan was off of bypass and Dr. J worked on closing his chest for the next hour or so (and did a fantastically, beautiful job, might I add!).<br />
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Ethan came out of the O.R. extubated (!!), with one (!!) chest tube, and with a <a href="http://en.wikipedia.org/wiki/Jackson-Pratt_drain" target="_blank"><b>JP drain</b></a> to keep fluid from collecting in his old pacemaker site. I caught a glimpse of his tube-free, pink face as the team wheeled him through the doors of the PCICU and, yes, I cried again. We met with Dr. J around 5:30 in the PCICU and learned that everything went as planned. He was able to put an adult-sized 23 mm valve into the newly reconstructed conduit, which is now pre-stented and will set Ethan up for future interventions in the cath lab rather than the operating room. He was also able to place Ethan's new pacemaker behind the abdominal muscles -- praise the Lord! In other words: best case scenario all around.<br />
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Dr. J left and we all gathered in the conference room for a sweet time of prayer. Within minutes, we were called back to see our boy.<br />
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Unfortunately, Ethan had declined quite a bit after settling into the PCICU. By the time Jeramie and I got to him (literally 20 minutes from him leaving the O.R.), he had desatted significantly (low 60s) and had to be <a href="http://en.wikipedia.org/wiki/Bag_valve_mask" target="_blank"><b>bagged</b></a> in order to increase his oxygen levels. He was so heavily sedated and evidently felt no need to breathe on his own.<br />
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Even with the bag ventilation, Ethan's oxygen saturations were only getting up into the mid-70s. He was quickly placed on <a href="http://en.wikipedia.org/wiki/Bilevel_positive_airway_pressure" target="_blank"><b>BiPAP</b></a>, which greatly increased his saturations, but there remained lots of talk about reintubating him. I made it clear that I didn't think that needed to happen, based on issues we were having with the BiPAP mask not fitting correctly, and the Lord sent us an advocate by way of a respiratory therapist. He convinced the NP to give Ethan a few more minutes on BiPAP before drawing another blood gas, <i>then</i> make a decision about retintubating. Within 10 minutes, between the first blood draw and the second, Ethan's carbon dioxide levels dropped from the eighties to the fifties (their goal for him at that point was forty)! <br />
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Managing his pain throughout the night was difficult. Too much morphine and Ethan refused to breathe; not enough and he thrashed around in his bed. Jeramie and I were so weary from such a long day, and seeing Ethan in so much pain was more than we could bear. Around 9:00, I had stepped out to eat something and was called back into the room by my sister shortly after. Ethan was still wearing the mask at that point and crying hysterically underneath it. He wanted me something fierce, and when I could finally make out his words, <i>"I want you to come closer."</i>, I flung down the side of the bed and draped my body over his. In that moment, the only words I could pray were,<i> "Lord, please." </i>Despite my attempts to fight it, the sobs overtook my body, but my convulsing shoulders calmed him into a peaceful sleep.<br />
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Ethan stayed on BiPAP until around midnight, once he was mad enough to
rip it off and could prove to us that he didn't need it anymore. From that point forward, his team found the sweet spot of pain management and Ethan steadily improved. Jeramie and I took turns sleeping, each logging three hours of "rest", and I woke up Thursday morning to a much happier boy, thanking God for the day's new mercies.<br />
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<i>...to be continued...</i></div>
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com1tag:blogger.com,1999:blog-754213252368419884.post-77401656372131715762014-08-05T22:26:00.000-04:002014-08-05T22:26:33.116-04:00Home.A mere four days after open-heart surgery, Ethan was discharged from Duke on Sunday afternoon, August 3rd. 'Surreal' doesn't even come close to explaining the feeling of coming home so soon, but it's a start.<br />
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We all knew it was time to go when Dr. J walked into Ethan's room on Sunday morning and, two seconds later, Ethan pointed his index finger at Jeramie and exclaimed, "Pull my finger, Daddy!" Dr. J had tears in his eyes from laughing so hard (or from the horrid smell that escaped my child's hind parts -- it's hard to tell), declared it a "top hospital experience", and later walked down to Thelo's room to share the laugh with them. A few minutes later, in walked Dr. I who took one look at Ethan and asked, "So, are you ready to go home?"<br />
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We are in awe. And exhausted. And thankful.<br />
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Being home has been a bit crazier than I anticipated. We were warned that Ethan would likely try to do too much, being in the comforts of his own home and all, and would tire easily. They were right. It has been a struggle convincing him to take it easy and relax. I'm not sure what we would do without Netflix and an iPad!<br />
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Over the past couple of days, I've found myself getting anxious about his recovery. I worry that he's doing too much too quickly; I worry that he's not getting better quickly enough. I worry that he seems too tired; I worry that he's not getting enough rest. It's hard to articulate, but I think I expected the surgery itself to be the hardest part. Don't get me wrong; waiting and waiting and waiting for news from an operating room about your child's life is never easy, but I don't think I gave enough mental energy to the waiting involved in the recovery process. I have to continually remind myself that Ethan had his chest cracked open less than a week ago and this wasn't all going to end when we walked out of the hospital.<br />
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All of this anxiety has been a constant reminder of my need to keep my eyes on Jesus. It's a dance, this 'trusting in the Lord' thing. When I look away for even a moment or two, I find myself tripping over worry and fear. I am in continual need of the Lord's guidance and direction; without it, I'm a mess. I happened to be reading in Isaiah yesterday morning and came to chapter 26, verses 3 and 4:<br />
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<i><span class="versetext" id="isa26-3" style="display: inline;">"You keep him in perfect peace whose mind is stayed on you, because he trusts in you. </span></i><i><span class="versetext" id="isa26-4" style="display: inline;"><span class="versenum"></span> </span></i></div>
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<i><span class="versetext" id="isa26-4" style="display: inline;">Trust in the Lord forever, for the Lord God is an everlasting rock." </span></i></div>
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<span class="versetext" id="isa26-4" style="display: inline;">The promise of peace for a mind focused on the Lord, on a God who will not crumble or crack, brought me so much comfort. How awesome that God's word is living and active and relevant to a nervous mama even today!</span></div>
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<i><span class="versetext" id="isa26-4" style="display: inline;"><br /></span></i></div>
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<span class="versetext" id="isa26-4" style="display: inline;">We had a follow-up with Ethan's pediatrician yesterday afternoon and we're keeping a close eye on a small area of swelling between his sternal and pacemaker incisions. No one seems concerned just yet and Dr. J will examine it thoroughly on Friday when we're back at Duke for Ethan's post-op appointment.</span></div>
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<span class="versetext" id="isa26-4" style="display: inline;"><br /></span></div>
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<span class="versetext" id="isa26-4" style="display: inline;">Please continue to pray for us. As I'm learning this week, this is not 'over' and we still have a ways to go until our boy is fully back to his spunky self. Please pray that Ethan's recovery would continue to remain infection-free and that he would grow stronger with each passing day. We are in awe of what God has done in the life of our son and we give Him glory for it all!</span><br />
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<span class="versetext" id="isa26-4" style="display: inline;">Thank you for praying with us and loving us well.</span></div>
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<i>"For you are great and do wondrous things; you alone are God.</i><span class="p">"</span></div>
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<span class="p"><i>-Psalm 86:10</i></span></div>
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-44993453893661710082014-08-02T23:07:00.000-04:002014-08-02T23:07:09.633-04:00Post-op, Day 3Thank you, thank you, thank you for offering up prayers on Ethan's behalf after last night's post! I also received some very encouraging messages that helped to ease the anxiety I was feeling about Ethan's oxygen saturations and shoulder pain. On top of all that, we had good, separate conversations with both Dr. I and Dr. J today and neither of them are concerned about either issue. It seems I just needed to turn that over to the Lord and give Ethan some time.<br />
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Ethan was wheeled down to radiology first thing this morning for a chest x-ray. It looked pretty good for three days post-op, but there is still a small area of 'wetness' that we'd like to see resolve. Between chest PT, walking, and Lasix, we're confident that this will clear up fairly soon. He'll have another x-ray tomorrow morning and we'll go from there. However, even with the wetness, Ethan maintained oxygen saturations in the mid-to-high nineties all day! I watched those blue numbers on his monitor just about all day long, with wonder in my eyes and gratitude in my heart.<br />
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As far as the shoulder pain goes, he only complained about it once or twice. He seemed pretty sore, in general, today so we're trying to stay on top of the pain before it really bothers him. (By "stay on top of the pain", I mean regular Motrin every 4-6 hours. Children's Motrin! Three days after heart surgery! Kids are crazy strong.) As God heals his body with each passing day, we're hopeful that these kinks will work themselves out and resolve completely.<br />
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Ethan has seemed the most like himself today and I am so thankful. Believe it or not, we had to stop the kid from running (RUNNING!) during one of our walks today. Waiting hours on end for your child to come out of open-heart surgery is stressful. Keeping them from breaking into a jog three days after said surgery is a whole other kind of stress, but I'll take it!<br />
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I don't have any specific requests for Ethan tonight, but will you please pray for our heart buddy Thelo? His mom, Lori, and I met a few months ago at a meeting organized through Duke and we have become fast friends. It just so happened (thanks, God) that we ended up at the hospital together with our boys, even sharing the same room in the PCICU for a night. It has been such a sweet gift having her around, but of course this means that she's there for her own child, too. Thelo has been struggling with his oxygen levels, and has spiked a fever over the past twenty-four hours. His little body has endured a lot over the past week and the weariness is setting in. Will you please pray for Thelo and Lori? Pray for endurance and peace, strength and patience. Pray for wisdom for Thelo's medical team. Pray comfort and for rest.<br />
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Thank you for your love, your encouragement, and your prayers. We love y'all!<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-19952760129666541042014-08-01T23:22:00.000-04:002014-08-01T23:22:03.980-04:00Rockstar.So, here's the deal: Ethan is a total rockstar. This has been the one word, used multiple times, by multiple members of Ethan's medical team to describe him up to this point. The resilience that boy has shown over the past forty-eight hours is mind-blowing.<br />
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Mama getting six hours of sleep in said forty-eight hours is something special, too, so (once again) this is going to be a quick one. For those of you wanting all the details (I know you're out there!), they'll come eventually. Right now, I just want everyone reading this to know one thing:<br />
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God is good.<br />
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Of course, it's easy for me to say that as I watch Ethan, two days after intense, complicated open-heart surgery climb in and out of his bed and walk laps around the nurses' station. But the truth of His goodness was also what I clung to while I stroked Ethan's head during hallucinations and laid myself over his beat-up body as his oxygen dropped and he was too drugged to breathe. Through the highest of highs and lowest of lows over these past two days, the Lord is the one thing that remained constant. His goodness and faithfulness do not fail, and I am thanking Him for that tonight.<br />
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The surgery on Wednesday was a complete success. It took much longer than we anticipated, but Dr. J did some amazing work in our boy's body. Ethan had an echo this afternoon, so we'll hear more tomorrow about how everything looks postoperatively. If his activity level is any indication, everything is going to look just fine!<br />
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We do have two specific concerns that we'd love for you to pray with us about. In a way that can only be ordained by a God who cares about the details, Ethan's cardiologist, Dr. I, is on service this weekend. He knows Ethan better than anyone at Duke and I'm confident that, with the Lord's guidance, we'll work together to get some answers over the next day or so.<br />
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#1 -- Ethan's left shoulder. Since yesterday afternoon, Ethan has been complaining about pain in his left shoulder area. We thought this was directly related to the chest tube, but he experienced pain in the same spot this evening, hours after the chest tube had been pulled. It very well could be residual pain from all the trauma of surgery and the tube, but I feel uneasy about it all. Would you pray that Ethan would have relief from this pain, and that we can come to wise conclusion about what could be causing it?<br />
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#2 -- Oxygen saturations. Ethan is still requiring a bit of oxygen to keep his saturations in the normal range. So far, we've been able to keep them 'acceptable' with some oxygen blowing towards his face from a tube, but he did require a nasal cannula earlier this afternoon. His saturations should be improving as he becomes more active and releases more and more fluid, but we're not seeing the jump like we thought we would. He'll have a chest x-ray in the morning to check on his lungs and we'll go from there. Please pray that Ethan will be able to tolerate increased activity tomorrow without the need for extra support.<br /><br />We are overwhelmed by the love and support we've received this week! We have read every message and listened to every voicemail. Even though we haven't been able to return all of your messages, I hope you know how much we are encouraged by them -- THANK YOU!<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-21229755775186924672014-07-29T23:09:00.000-04:002014-07-29T23:09:25.839-04:00Cath update.Thank you for all the prayers, texts, calls, e-mails, and social media love today! We've read every single message that's come our way and we've been carried by your prayers and encouragement.<br />
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This will be another quick update tonight, as we have a very early morning and a very long day ahead of us tomorrow. The cath today went wonderfully! It started much later than we hoped -- Ethan didn't go back into the cath lab until 1:00 -- but it was relatively quick and Ethan recovered well! He didn't complain a single time about being hungry while we waited and was in great spirits even as he fell asleep on the table. Praise the Lord!<br />
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Dr. F was able to get some great images of Ethan's heart, which gave Dr. J (Ethan's new cardiac surgeon) a lot of good information for tomorrow's surgery. Today's cath was even further confirmation that it's time to do this, and we're ready. We also learned that Ethan's right and left pulmonary arteries have grown substantially over the past few years and are now considered "normal" for his age/size!<br />
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So, tomorrow. Ethan will head into the operating room sometime around 8:00 in the morning. It's going to be difficult to put him through that again, so we ask that you would pray for peace and calmness as we send him into the O.R. The surgery will last most of the morning and will hopefully be over by early afternoon. We learned today that Dr. J will not be replacing the conduit in its entirety, but will be "splicing it" and adding a bovine pericardium patch to increase its size, along with a whoppin' 23 mm valve. This will set Ethan up beautifully for future procedures and give his team much more flexibility with how to treat future valve issues (even avoiding the OR altogether). <br />
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How to pray:<br />
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-REST -- Jeramie is bunking with Ethan at the hospital tonight and I'm staying at a nearby hotel. We all need really good sleep tonight and, as of 10:40, Ethan still wasn't asleep. If you're still up and reading this, please pray specifically that we would wake up tomorrow well-rested!<br />
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-Dr. J and his team -- We are thoroughly impressed with the care Ethan is receiving and ask that you would pray for the hands that will be working on his heart tomorrow. We pray for wisdom, clarity, and skillfulness for everyone who will be involved with Ethan's case.<br />
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-No complications -- The consent forms we signed today would make just about anyone queasy, and Dr. J was very honest about all the things that could go wrong. We know the risks, but we also know that Ethan needs this. It's a tough place to be as a parent, so we're fervently praying that all will go smoothly and without complication, and that Ethan will walk out of Duke healthier than he was when he walked in.<br />
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Thank you for loving us well and carrying this burden with us through your prayers! We love y'all!<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-52161396477050751692014-07-28T20:47:00.001-04:002014-07-28T20:47:28.655-04:00Cath details.Hey friends. It's almost 9:00 p.m. on the night before we head to Duke. The productive day of packing I had in mind when I woke up this morning didn't even come close to happening, so I'm going to make this short and sweet.<br />
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We are scheduled to check-in at 9:00 tomorrow morning, and hopefully Ethan will head into the cath lab sometime around 10:00-10:30. It shouldn't be a long procedure, as they're mainly getting information for the surgeon. As it stands now, they do not plan to intervene.<br />
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Ethan will recover in the PACU (post-anesthesia care unit), then be moved to a room on the floor. We'll meet with the surgical team at some point tomorrow morning and go over details for the surgery on Wednesday. I will be sure to post those here once we know them!<br />
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Specific prayer requests for tomorrow:<br />
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-distraction from hunger -- Ethan will not be able to eat after midnight tonight and can't have anything to drink after 7:00 tomorrow morning. Thankfully, he doesn't wake up ready to eat, so we're praying we can easily distract him while we wait. We'd love for you to join us in praying that prayer, too!<br />
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-a smooth procedure -- From starting to time, to easy cath access, to no complications during the cath, we'd love for you to pray that all goes smoothly. Pray for Dr. F (our new cath doc) and his team, as well as the nurses who will be taking care of Ethan after the cath.<br />
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-recovery -- In past experiences with anesthesia, Ethan has always come out of it happy and mostly alert. Please pray that the same holds true for tomorrow! Also pray that the cath site would heal quickly with no infection<br />
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Above all, pray that God is glorified through the events of tomorrow and the week to come. He is so good and worthy of our praise!<br />
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We love y'all!<br />
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<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0tag:blogger.com,1999:blog-754213252368419884.post-15059826888774808042014-07-20T23:20:00.000-04:002014-07-21T08:54:28.628-04:00Now and then.This weekend has been a weepy one, friends. I've taken two pregnancy tests over the past three days, because surely being 'with child' is the only reasonable explanation to the range of emotions I've felt since Friday. But, nope. As it turns out, being less than two weeks away from sending your child into another operating room can explain it, too. Add to that the feeling of being 'on hold' as we wait for the big day, and those pregnancy-related emotions start to pale in comparison. (P.S. - I'm not pregnant.)<br />
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Ethan and I stayed home this weekend while Jeramie attended a surprise party for his grandma's 80th birthday. As much as I wanted us to be there, I knew that exposing Ethan to a large crowd of people this close to surgery wouldn't be a wise decision; so, at home we stayed. I was okay with it on Friday, but by Saturday afternoon I was a mess. In fact, by 11:30 that morning, both Ethan and I had already cried about
not being there. Y'all, you don't know tears until you see your
five-year-old's chin start to quiver and hear him ask, defeated, <i>"Did MawMaw not invite me to her party?"</i> <br />
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I held him in a long hug, assured him that <i>of course she did</i>, and we had yet another conversation about surgery and pain and hospitals and conduits. We wiped our tears, then I began to frantically think of ways to make it better -- "We'll make our own birthday cake!" ... "We'll face-time during the surprise!" ... "We'll make the most of it!", I told him. I even put on make-up for the first time in more than a handful of days.<br />
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But, the truth is, we're faced with a problem we can't fix. It's not that we had to miss out on time with family, although that is incredibly disappointing. The real problem is that we have to take our son to a hospital, lay him down on an operating table, and wait for hours on end while a surgeon saws through the bone in his chest to expose a heart in need of intervention. No amount of frosting or technology or mascara can fix that.<br />
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There have been a few times over the past couple of weeks where Jeramie and I have found ourselves at this place of realization. <i>"The problem"</i>, I'll say, <i>"is that our five-year-old needs open heart surgery."</i> This just isn't the way it's supposed to be, and something deep in my soul wants to fight it with every breath. During times like those, I find myself groaning in my tent, longing for our heavenly dwelling* -- not just for a better <i>now</i>, but for His promise of a better<i> then</i>. Then. When I'm face-to-face with Jesus, worshiping at His feet. When babies don't die and kids don't need open-heart surgery. When tears don't fall. When there's nothing but joy and adoration in the presence of our Savior and King. <i>Then.</i><br />
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But, this is now. Sin-filled, sad, scary <i>now</i>. Even on its best days, <i>now</i> cannot compare to what will be <i>then</i>. Knowing that, I've been so encouraged recently by a friend of mine about <i>now</i>. We both have babies with needy hearts, we both love Jesus, and we both desire to make Him known to the world. On more than one occasion, I've heard her refer to her son's time in the hospital as an opportunity to share the Gospel with someone, and I was blown away the very first time she said it. But as we approach this next surgery, the Lord has used her to show me that the halls of the hospital are every bit a 'mission field' as the villages in India. Through Jesus, our family is able to approach this uncertain time with hope and confidence in someone greater than an earthly surgeon. Why wouldn't I want to share that with the scared mama sitting beside me in the waiting room?<br />
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Now, and then. For me, it is a daily struggle to reconcile the two. It is so easy to want the best of both worlds -- to want the better now AND the better then. But now is messy. Now leaves me aching for<i> </i>then. <br />
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<i><span class="versetext" id="1co13-12" style="display: inline;">"For <a href="https://www.blogger.com/null" name="1"></a>now we see in a mirror dimly, but <a href="https://www.blogger.com/null" name="2"></a>then face to face. </span></i></div>
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<i><span class="versetext" id="1co13-12" style="display: inline;">Now I know in part; then I shall know fully, even as <a href="https://www.blogger.com/null" name="3"></a>I have been fully known."</span></i></div>
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<i><span class="versetext" id="1co13-12" style="display: inline;">-1 Corinthians 13:12</span></i></div>
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Lord, help me to live <i>now</i> in light of what will be <i>then</i>.<br />
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<span style="font-size: x-small;"><i><span style="font-size: small;">- - - - - - -</span></i></span><br />
<span style="font-size: small;"><i>*2 Corinthians 5:2, paraphrased</i></span><br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com4tag:blogger.com,1999:blog-754213252368419884.post-67764903940187253402014-07-12T22:04:00.000-04:002014-07-14T15:46:43.369-04:00Here's how.Without a doubt, the most popular question Jeramie and I have been asked over the past five years is, <i>"How can I help?" </i>On the day Ethan was born and we learned about his <b><a href="http://joyemullis.blogspot.com/p/our-journey.html" target="_blank">heart defect</a></b>, our family and friends immediately sprang into action, even when we didn't know the answer to their question.<br />
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We have been loved very well, and in many different ways, over the years. I'm convinced that in a moment of crisis, a powerful desire wells up in each of us to respond and do <i>something</i>. For a lot of people, though, figuring out exactly <i>what</i> to do can be a challenge.<br />
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<i>"So, how can I help?"</i><br />
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Now that Ethan's next surgery is on the horizon, we've been asked this question daily. Our experience has taught us how to respond to others during their times of need and I've compiled a list of our most favorite gestures. My hope is that this list will help you answer that question -- as it pertains to our specific situation, or to any other medical crisis your loved ones may be facing. <br />
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1. <i><b> Prayers</b></i> -- For our family, these are cries to the God of the Bible, in the name of His son, Jesus -- our redeemer and our rescuer. Hearing that others are praying <i>for</i> our son -- our family -- is one of the most beautiful things I've experienced on this journey. People stopping to pray <i>with</i> us, right where we are at that moment, is incredibly powerful. I realize not everyone reading this trusts in the same God we do (or, any god for that matter), but if you tell someone you're going to pray for them, do it.<br />
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2. <i><b>Encouragement</b></i> -- While not everyone will identify with God or prayer, anyone can be an encouragement to their friend or family member. I cannot tell you how many times a simple note has shown up at just the right time and lifted our spirits. It doesn't seem like a lot, but trust that that hug you want to give or that card you want to send will be much appreciated by its recipient.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_zn2U0UqZolQse-IOCkiygAR__aul46mdzoKdmtDIFjtzlj5Si1Bdnn01-SeTke2nEJNOEGxhRzhjfhjHRg3tzC_U26G4eNuYQwyrHaJuz-8KMFkLz8JU4nlhUDHFipSN2lve9QY28hLT/s1600/Photo1.jpg" height="424" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>The first of many handmade cards Ethan received during his hospital stay!</i></td></tr>
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3. <i><b>Company</b></i> -- If joking is appropriate in a stressful hospital environment (it can be!), then I can say that our entourage was often the joke of the waiting room. We were never without company, and that is one of the fondest memories I have of Ethan's first hospital stay. Of course, you'll need to clear this with your friend to ensure that there are no restrictions and that it's a good time to visit (some times just aren't), but a friendly face is wonderful medicine to a weary soul. Even on the terrible days when I didn't want to speak a word, we had friends and family who sat with us in silence. Not everyone is comfortable in the hospital setting, for various reasons, but if you can put on your brave face and spend some time with your friend, do it.<br />
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrlwnLZa3h1Hznv0tHaV2OTxaJl5kmIpZA2x8QcuyOK9QDl5Veg_KS634lS0sNWSqaps_qFO0ui0dw0qoVtIow8aVM19RprAwhKHGK2w_ZuEZ9bX_qmk6mMYufqXpQ3Eth51LNk6LIR2gz/s1600/Photo2.jpg" height="480" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>Waiting during Ethan's first open-heart surgery. This clown was annoyingly funny at just the right time.</i></td></tr>
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4. <i><b> Food</b></i> -- Anyone who has eaten in a hospital cafeteria for more than a day will tell you that food from "the outside" is like water in a dry land. We were lucky in that our family and friends were usually no more than a 35-minute drive from the hospital, and they burned some rubber on I-40 to bring us home-cooked meals! If you're not within food-delivery-distance, consider sending a gift card to a nearby restaurant. Waiting-room-friendly snacks are also a big hit!<br />
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5. <b><i>Gas and Parking</i></b> -- One would be amazed at how much driving back and forth to the hospital, and paying to park in their decks, can cost! Depending on the family's sleeping arrangements, family members may have to drive long distances to visit their loved one. Jeramie and I were fortunate enough to have friends and family pay for housing for us at a nearby hotel, and even those 10-minute trips added up quickly. Gas cards are a wonderful gift for someone making frequent trips to and from a hospital! Also, check with the hospital to see if they offer discounted parking passes. Duke does this for their patients and it was a huge relief to hand the attendant a pre-purchased pass instead of our debit card!<br />
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6. <i><b>Household chores</b></i> -- For a family facing an extended hospital stay, not having to worry about mundane household stuff is a huge relief! During the nine-and-a-half weeks we were at Duke with Ethan, we had friends wash our clothes, feed our then-cat, water our then-plant, and check our mail. If your friends are far away from their home at their loved one's medical center, helping take care of their house is a must-do for them! Once they return back home (whether from a short or extended stay), a scheduled rotation of meals is extremely helpful for easing back into home-life.<br />
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<tr><td class="tr-caption" style="text-align: center;"><i>A sweet home-coming after a long hospital stay.</i></td></tr>
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7. <i><b>Gifts</b></i> -- On the day Ethan was born, before we ever knew about his heart defect, he received the most precious stuffed monkey. It went with us to Duke and quickly became a staple in this journey. To this day, Ethan adores that monkey and you better believe it'll be with him during this next surgery! Gifts don't have to be elaborate (see #2); the smallest token of thoughtfulness can be such a
day-brightener for a patient, young or old. You could also consider giving a gift to the caregivers. Extra-moisturizing lotion (to combat dry hospital air and lots of hand-washing) and a Starbucks gift card (to combat sleep deprivation) would be great additions to any care package!<br />
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<tr><td style="text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF-aGhGepKzeT85Eydjx7jZNBtoNdIl4487u2rIHwOAPw3Aq2BcD-o1Aw0KwdsaDMcmYx0E7mBETgypMVpEUf4jaPZ8-Re_kbva7fuVUj3YRI5lF8dRg8kV3jb1wYsniiCVitNEX7g7SO1/s1600/Photo3.jpg" height="470" style="margin-left: auto; margin-right: auto;" width="640" /></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><i>A handful of gifts Ethan received during his first week of life.</i></td></tr>
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For those facing long nights and days in a hospital, whether as a patient or a caregiver, a simple act of kindness goes a very long way. For those of you who have found yourself by a loved one's bedside day after day, what else would you add to this list?<br />
<br />joyehttp://www.blogger.com/profile/16430260308766122280noreply@blogger.com0