Monday, December 21, 2015

Lessons From Mary: How To Not Freak Out

Christmas. Where it all began.

Two Christmases ago, and almost to the date of this post, our ultrasound didn't go as planned, and we learned I was carrying someone very unique, who many thought wouldn't make it.

I cried. Ok, sobbed. I was disillusioned, distracted, distraught. My mom was in visiting and took me shopping for maternity clothes to which I remember telling her that I didn't know how much longer I'd be pregnant so it wasn't really worth the new clothes.

I didn't exactly embrace this news well. We had our own dreams for this child. Our own plans. And they included a healthy baby, a simple delivery at our local hospital, and days on end spent cuddling with a newborn come spring while our then 2.5 year old would potty train herself as I would watch from the rocking chair, and our then four year old would teach himself to read. Because that's how it works when a new baby is welcomed home, right? Our lives would include school starting for our son, ballet classes for our daughter, and every perfect milestone met by our baby.

Until that ultrasound changed everything.

It's Advent again. Last year, our sweet Chloe was home for Christmas, and in a way, the Christmas season was redeemed for us a bit. This year, we longed for her to be home from her second open heart surgery in time for Christmas. And here we are, hanging out in the living room this morning, the kids snuggled in their tents that we let them sleep in last night with me while I was the night nurse in the front room by her crib. We're nestled by the tree this morning, the only lights in the room from Chloe's monitors, the Christmas tree, and the TV gently telling us the Christmas Story through youtube videos. The gifts are all wrapped under the tree. The stockings are ready. The anticipation is unbearable for our six and four year old kiddos, who are counting down the days on their red construction paper chain.

I was reading with my son the other day about when the angel appeared to Mary and told her she was going to bear a child who would be the Son of God. Her world was rocked, and I don't think slightly. So it was kind of like the world's first gender reveal party, only instead of balloons released from a closed cardboard box with guesses marked on the side, it was heralded by an angel, whose voice I can only imagine as pure and filled with joy and excitement and gentleness and anticipation, in a dialect that breathed Heaven.

And Mary cried. She sobbed. She was disillusioned, distracted, distraught. God had rocked her world and she was carrying someone very unique but it wasn't part of her plan. So she freaked out.


That's how I reacted to Chloe. That's how many react to bad news or unexpected news. Mary, however, stayed focused, eyes fixed on the Lord, and simply replied, "Behold, I am the servant of the Lord; let it be to me according to Your Word." {Luke 1:38}. She knew Who was in control of her life, and she simply trusted in Him. That doesn't mean she wasn't afraid, but she didn't let fear overcome her {and I'm guessing in the days before epidurals that she probably was a little freaked about the whole birth the King part}.

I have so much to learn from Mary. She embraced this new journey with joy, thanksgiving, and obedience. She declared the Lord was her guide and that she'd do this for His glory.

We're only human. There are going to be moments when I wake up, stir for a moment in bed before my feet touch the floor {probably flipping through instagram first}, then sitting up to realize there is a ventilator whirring in my room. There are going to be moments of disappointment and frustration at my goals vs. the world, like PT saying she's not quite ready to bear weight on her legs yet after we thought we had made progress to this point. There are going to be days where I'm distracted and upset, and probably hormonal and most likely in need of copious amounts of coffee in order to make sense of it all, of the fact that we have two healthy children, one medically compromised child with a weakened heart, and one already in Heaven, who we won't know until then whether it was a boy or a girl. This isn't the family I thought our marriage would create. This wasn't our plan. And last year, my heart stayed cold in that season of bitterness and blame-placing, trying to figure out why He'd do this to us, but saying through gritted teeth that we'd do this for Him. I didn't embrace the thought that perhaps this, perhaps our lives raising Chloe, is what He wants for His glory. I didn't allow myself to grieve the child we thought we'd conceived. There's a lot of grief that goes along with having a special needs child, and we're just now learning that's OK. But that's a post for another day.

But here's the thing: This is the life He chose for our family. These are the people, our own little tribe, that He has lovingly placed in our care because for some odd reason He thinks us capable. We're learning during this chapter to embrace and remember the fact that when we each declared we'd live for the Lord, that it meant to lay down our lives, die to self, and life for Jesus and His glory. So who are we to say He messed this one up? That He didn't get this one right, this wasn't how it was supposed to be?

We're not. What we are called to do is be obedient to the calling He's placed upon us, to keep our eyes focused on Him during it, to remember that in this world there will be trouble, but to remember that He has overcome the world {John 16:33}. That He did this as a simple, rag-wrapped baby in a manger. That He became low, even to the point that His precious little newborn life was resting only inches away from the dirt and muck of a stable floor. And He did this for us. If He was willing to bow so low in order that we would be brought so high, then anything He throws at us or puts in our path should be worth it. It's taken me some time to get to that point, and in all my human-ness, I'm sure that any unexpected curves He throws us in the future will be met with fear, anxiety, and freak outs again. But the point is that we're choosing to not live there. Camp out there for a milli-moment perhaps, but then look up to Him and know He's got this. And that when things are good, that it's also OK to embrace the good and to feel blessed, being reminded that sometimes our Lord just plain likes to love on His people.

So this Christmas, we're embracing the fact that this is the story He's writing in our lives. This is the family He created. This is the calling that He's asked us to be obedient to with joy. It's hard, no doubt. But it's worth it. And even though it's not anything like what we imagined it would be {says the mom who now homeschools even though she was entirely convinced she never would}, we will be like Mary and sing, "My soul magnifies the Lord, and my spirit rejoices in God my Savior." {Luke 1:46}.

Saturday, December 19, 2015


We're home.

Yes! We're HOME!!


I apologize for not updating, but it's been a whirlwind, and not the snowy kind with pretty white snow, but the "adjust back to daily schedule" kind. It's been good though. We've all much needed home, and sunken back into the coziness of our own beds, our daily routines, and our own dinners together at our very own table.

And then on our first Saturday home, I accidentally pulled out Chloe's GJ tube and we had to pack up all the kiddos and jump in the car to take her back on the two hour drive to have it placed again at the hospital. So we were almost home. Kind of. But all is well now.

We've adjusted sleep, and have Chloe in our room because she is now sleeping through the night and requiring less suctioning or needs at night. Our new routine is to take her up to our room around 8pm or just after night time meds are given. I carry her up with her travel ventilator strapped across me, and Alan follows behind with the vent stand, other vent, humidifier, then we both trade off running up and down the stairs to grab the suction machine, sat monitor, cords, meds, and essentials for the night. It's a tiny bit of chaos and a whole lot of peace knowing our daughter is right beside us all night long without the need of night nurses. Such a huge, HUGE prayer that has been answered. It's similar to having a newborn in that we wake up at odd times, either to suction or to assist a piece of equipment, like fill feed bag or water humidifier. Sure, there will be nights we won't get much sleep if she's restless, but even her restless nights (and she had three in a row when we got home) were still so much better than all of last year that we were home.

We've adjusted the kids' schedules and are back into a routine of greeting the day nurse, scarfing down breakfast, giving reminders that it's school time and not lego building time, and hugs and kisses for the Daddy as he ventures off to work, in his own office, with his own standing desk, and no more two hour commute and five days apart.

Kids do school work...

...and we cuddle. 

We've put up the Christmas tree, wrapped it in white lights, and sang hymns at the piano, all gathered around Daddy as he sings Christmas carols. We've opened a new book each night and read together, with Chloe curled up on our laps.

We're doing this. We're breathing a bit lighter and less constricted, though we're not out of the woods just yet. Our goal at home is to wean her off her oxygen and wean off ventilator again, and just continue to thrive and grow until the spring when we hope to begin the process of fixing her cleft palate and lip. Growing and thriving includes PT and OT coming to our home, daily PT and OT with me or the nurse or Alan helping. The oddest thing is that she graduated from the CHAMPS (heart home monitoring program from Children's Mercy) program, certificate and all, so we are no longer required to weigh her daily or weigh every single diaper since we have from her birth. Feel so, so weird to just throw a diaper away and not put it on a scale first, then enter it into the app for CHAMPS on the tablet they'd provided so they can see instantly how many grams that last poop was. For real: This is NEW territory for us. And scary. I find myself wanting to weigh them to know her output. 

Chloe showing off her certificate and also watching her first Tinkerbell on the big TV. She loved it. Till she fell asleep. 

And most of all, we're thankful for each and every one of you who prayed us home and loved on us through quarantine. Your encouragement means the world to us and to Chloe. 

From our family to yours, Merry Christmas. 


Thursday, November 19, 2015

Home Soon...

Home soon. As in,

"Will you guys get to go home soon?"
"We hope you'll be able to go home soon."
"Hopefully you'll get out of here soon!"
"What do we need to do to get you home soon?"
"I heard you're going home soon!"
"Are you ready to go home soon?"


It's a sweet but scary thought. She's overcome so, so much, but she still has a long way to go.

Home does not mean out of the woods. Home means less 5 A.M. x-rays and labs and more cuddles, but also more watching, closely by her hawk parents.

Home means quarantine from outside cold and flu bugs.

Home means finding trustworthy nursing. We're possibly two weeks out from home and still no word on any nurses to interview. I'm not nervous or concerned. At all. Not one bit. Ok, a ton nervous. Like a lot.

Home means no more quiet sleepable (new word, ten points for creativity) nights, but instead the whooshing sound of the ventilator again. A new ventilator that we have yet to learn and are not used to it's squeaks and alarms yet.

Home means nerves each trip out for labs or clinic appointments.

Tomorrow is the care conference and discharge planning meeting. It's where we'll sit down with Chloe's team and review what steps we need to still have her make (like making sure she's over the last of her infections, figuring out feeds, addressing recent belly issues, and pulling her PICC line). It'll be a weighty conference. I'm not exactly sure what to expect. And for that my stomach is in knots tonight.

Because we never know what to expect with Chloe.

Today I was disinfecting her high chair and the Child Life coordinator stopped in to ask what ink stamp pad color I'd like for a little project I wanted to do. I was shocked they have different colors, and said without hesitation, "Well, black or pink I supposed." Before the words left the edge of my tongue my memory flashed back to the day we found out everything and nothing and fear about our daughter. The night before our nineteen week ultrasound, nearly two years ago, I dreamed through the night of it it was a boy or a girl, but instead of dreaming in hues of blue or pink, I dreamed of pink and black. The images from the dream were so vivid in my mind the next day as I anxiously awaited the appointment. I'd come to fear those colors. Pink, a girl. Black...death? Problems? Losing her? What could black mean??

She's come so, so far from the black that plagued those first weeks and months until her birth. They say gray is the new black, and she's proven this. She's definitely not in the black zone for babies. She's a gray zone. A "we just don't know but we take this one day and one thing at a time" kind of kid. And we love her for that.

The surgeon who gave her a new designer heart stopped in today as he roamed the weary halls of the cardiac wing of the PICU and smiled. He said he heard the happy news that she'd get to go home soon. He also slightly was uneasy and unsure of his words, as if he himself was surprised to be saying them. Chloe gave him quite the scare a year ago during her BT shunt surgery when she nearly left us right after they closed her up and this same surgeon had to open her back up and move the shunt location. He also threw out his knee and needed time off shortly after Chloe's OR incident. Personally we think Chloe made him do this because of all she put him through. By the grace of God, Chloe's surgery when much smoother this time, but then the complications and infections set in and we were all scared. The surgeon looked at me today with a little grin and no words, so I helped him out and just said, "It's Chloe. We just never know because it's Chloe." He agreed wholeheartedly and walked out with a smile.

She's come so far. We nearly lost her multiple times over the last six months. But she's here and she's good and she's a fighter.

And she's going home soon, hopefully a date determined tomorrow.

And as I wiped down her highchair and reflected on those words together in the same sentence, pink and black, I realized they've been slightly redeemed. Because I need that footprint to put in my bible, next to Psalm 139:14, "I praise You for I am fearfully and wonderfully made." And whether that footprint ends up in bold black ink or in gentle pink hues, the truth remains that God is good.

We still don't know how this story will unravel and unfold, but I'm thankful that the Lord redeemed my fears in those simple colors and their meaning to me today. He reminded me that He can redeem even the hardest of situations, the scariest of valleys, the darkest of shadows, and the deepest of sins and change the situation and the person and weave their story into a larger and truly amazing story of love, redemption, and grace.

Chloe in PICU for common cold, October 14th 2014
*The background image above of the quilt was taken from the quilt my daughter lay on in the PICU just over a year ago. One of the most beautiful quilts I've ever seen met in one of the most hardest places-the cold stillness of a hospital. It brightened her room and cheered our thoughts as she slept off her first cold against its warmth and love. Thank you to all who donate quilts and blankets to not just our hospital, but to hospitals across the country. If you'd like to give a blanket to Children's Mercy Hospital of Kansas City, please visit this link to learn more {and if it has a end date on the blogpost, ignore it and donate to your little heart's desire as they're always accepting donations of new blankets}. 
Tuesday, November 10, 2015

Where We Lay Our Head & Home For Christmas

I apologize. I left you all hanging. It wasn't intentional, by any means. It was life.

If we skip over the last post on suffering, and read through the post before that here, about strength, you'll read how Chloe's heart cath went and what the outcome is.

The outcome is day to day. One day at a time. We've copyrighted that motto, but you're more than welcome to use it. Just say Chloe gave it to you.

The results of the cath were basically that yes, the heart is the underlying cause of the fluid, but the lungs need dried out to help the heart and if that works, then there's hope. We set two goals for her: Rest. Nutrition. In other words, time and get her to eat. But then her kidney freaked out, and we all threw our hands and the air, not in raise the roof style, but more like we give!! What's up!!? Docs stopped all diuretics till we know what was up with the kidney levels. Chloe managed to completely stump not just us, but the kidney team as well. And we were worried. But the next day...and the next...and the next....she improved. We think in retrospect that it was caused from holding feeds for cath (dehydration)+cath dye+then starting feeds (up on protein) that equaled crazy kidney day.

Because of Chloe's freak out, we added another goal, so now the new total is three goals in order to GO HOME:

  1. Full Feeds. We're trying to hone in on this one this week and figure out how many resting calories she burns and thus what she needs for calorie intake to be Chloe daily, and for her to grow. Trying to figure out a good Chloe growth chart. 
  2. Diuretics in balance. Not too wet on lungs, but not so dry that it affects her one kidney. She's showing us that she likes certain diuretics and her kidney plays well with some and naughty with others. That was a crazy week trying to get that under control, but we're nearing in. 
  3. Vent settings within reasonable home ventilator means. In other words, she's on a hospital ventilator now and we'll bring her home on a home ventilator. At some point we'll need to switch these out and see how she does with the home vent and its slightly different settings. Trying to wean her back off vent before hopes of home would be too quickly and could off set or completely set us back altogether, so instead we'll wean at home just like we did last year. Did. Accomplished last year. Achieved. We can do this again! Nothing a diligent militant excel spreadsheet of off-ventilator-trial-times we can't manage again. Think I'm kidding? Her daddy is slightly obsessive about this, and for great and adorable reason. 
  4. Nursing. Please pray that the Lord would provide amazing nurses who get Chloe, understand her needs and levels of care, and interact amazingly with our family. 

So there you go. That's our plan. We're going to pray that this aligns with God's plan, to have Chloe home by Christmas. We'll make a banner and wave it high from the floor on our knees for the Lord to see our prayer. That's our hope. Because Christmas is a season of hope, if of nothing else. That babe in a manger sure is our One and Only Hope. Incase you missed that, we're focusing on getting her home-to live and thrive and grow, as long as that's the Lord's will!! I summoned the courage today to call the nursing agency and say it's time to start interviews again. I was excited to finally, after weeks and months of uncertainty about her ever coming home again, do this task. As we drove to a friend's house to do school and laundry today I told my son, "Hey, let's get a book that Chloe would like to read, and I'll start teaching you how to read it and learn the words so that when Chloe comes home you can hold her in the rocking chair and read to her by the Christmas tree!!" That idea started innocently thinking it'd help my son learn to read more, but suddenly, at the intersection of Antioch and Johnson with Ikea out my front window, I burst into tears driving through the green light because as soon as the words rolled off my tongue, I realized that this hope is real and she is working on coming home. I can buy Christmas presents for all my children. I can look longingly and perhaps purchase matching winter outfits for my girls. I can hang all five stockings this year, with hope for our future. After all we've been through, it takes courage and tears of joy to say this. We still have about a month or so until all those things on the to-do list are tied up neatly in a package with a bright red bow and a few jingle bells and placed under our tree. But we'll take this.

Where does that leave us for this month? Well, a little bit of everywhere. Our crazy little family got upgraded to a suite at the Ronald McDonald House. For the last month we relished in having a couch, a TV that works, a kitchenette {who knew how much you could cook in just a crock pot, hot plate, and microwave!??}. It provided much needed space for our cramped family to breathe. It saved us money on having a kitchen. It meant we could put the kids to bed in one room, and talk for a few mintues between Chloe shifts while sitting on a real live couch instead of edge of a bed. If you're just joining in this story, we've been living in a little two-bed (don't misread as two bedroom...just two bed room, like two beds, one room, only 4 walls and a bathroom). It's been just what we needed to be close to Chloe, but at the same time, five months later, it was getting small, closed in, and claustrophobia set in a bit after long, long days and when our other littles decided they no longer approved of what should be a bedtime routine. So we were ever so grateful for that little space, and yet missed our home two hours away.

Unfortunately all good things must...well, at least change. They're redoing the hardwood floors in the suites, so we had to move to a hotel for the next two weeks. I have to admit: I cried when I heard it was two weeks in a hotel. I did not honor Christ with my reaction of tears and freak out moments. I was completely overwhelmed about packing up our nearly half a year worth of belongings, jamming every last Target sack we owned and suitcase with clothes, snacks, dry goods, bathroom essentials, and every last scrap of four-year-old scribbled pages into the homeschool bags and moving. Again. I can't even count how many different rooms we stayed in since June. This vagabond life is hard on a home-body like myself. I think this is God's sense of humor since I only lasted one semester in the dorms in college before moving back home and commuting the thirty minutes because I needed my own quiet pretty space to study in. And now...well it's kind of like college dorm living, but with littles, so instead of late night study sessions, it's the early, wee morning hour "Mama I wet da bed!" moments and showering a little bum at five a.m. On the hotel note stationary I may have written housekeeping a note apologizing for the need for new bedding. They blessed us back with this:

Thank you, housekeeping, for loving on our littles and surprising them with this sweetly made bed. Thank you for not retaliating since my daughter went waters in the original one you made. 

I'll add to God's sense of humor the fact that I really thought I was a country girl by heart and refused to adapt to city driving and aggressive lane changing and living inner city life. Chloe changes things. God changes people. He took my fears and anxieties and placed me smack in the middle of them and said, "I've got you, so you've got this."

After I got over my kingdom collapse and realized this is still OK and the Lord's way of providing for us, I realized and remembered that even Jesus didn't have one particular place He called home on this earth. His Home was elsewhere. On earth He traveled by foot and He slept where He was. At a friends house. On a boat. In a garden. Wait, nope. Everyone else slept there, but not Him. I have this feeling that there's another temptation that took place in the desert where the enemy was taunting and tempting the Lord. I have this distinct feeling that another temptation took place: a pillow. A bed. Sleep. A cozy place to lay His head and just sleep it all off after a long, hard day of getting the disciples to understand. At least that's how I feel. It doesn't matter these days where the pillow is, just that it's there because my littles who I try to disciple daily tend to drain my mama's heart, and at the end of the day, whether a two bedroom room, a Ronald McDonald House suite, a hotel room, or the makeshift couch in my daughter's hospital room-no matter where I lay my head, I am//we are right where we need to be and He provides it all.

Thank you, sweet Jesus, for loving us so.

And as any good parent teaches their littles on their first night in a hotel {yep, we missed that milestone. We've never taken a family vacation and stayed in a hotel, so this was their first official time, although they did stay once overnight with grandparents}: We got pizza and ate it on the beds while watching TV. #normalmoment

Monday, November 9, 2015

An Anchored and Secure Hope

A dear friend and co-conspirator in the mommy life asked me if I’d be willing to help with a blog post series on Suffering. If she’d asked me three short years ago to do this very thing, I would have paused and considered why I’m eligible for this call to write. Sure, we’d had our times of suffering in our marriage and life, everyone does, but was it really suffering? Of course we’d lost a child to miscarriage. Our first, born from my body straight to the Lord without even a full body yet to lay my eyes upon, only the knowledge of the life that was within me and now with God.  Did that rock our world? Yes. But we grieved and healed. Was it suffering? Yes. But we’ve moved on….right? So who am I to speak of suffering? That was just a trial, right? Not actual suffering?

Actually, God has used suffering a lot in our life. Looking back over just the years since I said, “I do,” there have been many opportunities to experience the valley. Within the first months of our move, three years into our marriage, we lost our first child to miscarriage, as mentioned above. The first year we moved into full-time ministry, my husband’s grandmother passed away back home. The second year, his uncle got cancer and passed away within months. Year three brought a cancer-scare with my mom, and a throat cancer diagnosis with my dad.  We experienced financial hardship years three and four and part of year five, and in the fall of year six my stepdad announced he had cancer.
And years six and seven? Well, we were blessed with the amazing news that we’d be having another baby. Joy and peace and hope were on the horizon. We shared the news by lining up pumpkins, one for each member of our family, and the one on the way, with a little Pinteresty sign that said, “Baby #3”.  When we were considering having another child, we discussed things like finances, work versus family balance, logistics of car seat to van-size ratio, and we thought through how in the world I could manage my two-under-three (well, when we found out we were expecting our oldest was still three, our youngest just turned two) considering how stubbornly nauseous and sick my offspring tend to make their mama. We thought we were ready. We knew there were risks, especially after the miscarriage. But we felt the Lord approving this idea and blessing us with a new baby come spring of 2014.

The moment the nineteen week ultrasound started, my husband and I began light banter about boy or girl, the tone changed slowly and suddenly and the air became as heavy as the wet snowstorm outside the walls that divided us between bad news and the world rushing about where it was beginning to look a lot like Christmas, everywhere you go.

Eventually and after many tests, we would come to realize that our daughter had an extremely rare chromosomal abnormality. She had a congenital heart defect, a cleft lip and cleft palate, possible club feet, and later, after she was born, we’d learn she possessed only one misplaced kidney.  Two months and nearly ready to go home and wait for her first open heart surgery, she aspirated (choked) and ended up needing a tracheostomy to save her life and let her breathe around her tricky airway anatomy.

The road that was paved through five months of NICU life was hard. Stressful.  Life altering. But it saved our daughter, and we were able to bring her home to stay and thrive with us for over eight months before her heart shunt began to get too small and we knew surgery number two was looming. We’ve since spent the last five months in the PICU waiting for, and then currently healing from her second open heart surgery. The season of home was filled with laughter and joy, but also with stress of home nursing, sleepless nights, scary moments, ER visits, life-flight fears lived, and precious moments of cuddling my daughter by the Christmas tree. To some it was a juxtaposition of normal life meets medical life. To us, it was joy in the face of suffering.

I believe that all we’d gone through in the previous years had granted us with bits of hope along the way so that when this time came, we’d know hope truly existed to see us through this trial. I believe that because we chose to cling to the cross through those other painful seasons, we were better able to appreciate this current and very unexpected season in the valley.

If there’s something to be learned on this journey of suffering, it’s that it’s actually three-part. The first is that peppered among those trials mentioned at the beginning of this post were peaks of joy and utter happiness that can only come from the Lord. Our first healthy child was born, then our second. Our move from a tiny two bedroom duplex to a blessing of a three bedroom home with yard for our kids to run through the grass and sled on the slope. Watching as relationships around us showed growth and healing. Watching my dad fight and beat his cancer. Watching my step-dad do the same. Among our suffering, God plants seeds of joy, that can grow and bear fruit that will worship and praise Him even while in the storm itself. These moments of joy bring us hope. An anchored and secure hope. I’ve learned that when the valley seems the darkest to look around me, for surely, even when it hurts the most, Jesus still grants me joy in sorrow, and peace in pain, and a hope that anchors the soul. Hebrews chapter six tells us:

For when God made a promise to Abraham, since he had no one greater by whom to swear, ehe swore by himself, 14 saying, f“Surely I will bless you and multiply you.” 15 And thus Abraham,2 ghaving patiently waited, obtained the promise. 16 For people swear by something greater than themselves, and in all their disputes han oath is final for confirmation. 17 So when God desired to show more convincingly to ithe heirs of the promise jthe unchangeable character of his purpose, khe guaranteed it with an oath, 18 so that by two unchangeable things, in which lit is impossible for God to lie, we who have fled for refuge might have strong encouragement to hold fast to the hope mset before us.19 We have this as a sure and steadfast anchor of the soul, a hope that enters into nthe inner place behind the curtain, 20 where Jesus has goneoas a forerunner on our behalf, phaving become a high priest forever after the order of Melchizedek.
(Hebrews 6:13-20 ESV)

The second part is that suffering and trials causes us to grow in Christ. God lovingly teaches us along the way. Sanctification is the process of dying to self and becoming more like Christ. And holy cow, has this process EVER done that for me. At the beginning of this journey with our daughter, I thought I had it all together in Christ, meaning I thought I was cool with the Lord and didn’t need to grow in my own heart, that He was giving me this experience to learn from and help others through similar experiences. Wow. Just wow, was I ever wrong. This crazy roller-coaster took me through seasons of bitterness, of self-pity, of long-time friendships derailed, and of the Lord pointing out areas of my life that I still needed very much to grow in. While many told me how brave I was or how amazing I was taking care of my daughter or holding her hand in the face of surgeries, I was on the inside fighting battles deep against sin and my want to be in control of my life instead of letting the Lord be sovereign. Thankfully He is a loving God, and taught me about forgiveness and love and grace along the way. Honestly, I’m not sure that I would have grown the ways I have if it wasn’t for this particular walk through this darkness. I’m learning that we can rejoice in our suffering, for it produces endurance, endurance produces character, and character produces hope (Romans 3:3-5).

Finally, seasons of suffering remind us, and bear with me because this is something I’m still learning and grasping and feeling in the palm of my own hands, that our life is about learning to live for the Lord. Angie Smith writes in her book Chasing God about life that, “It is, and has always been, a gradual death to everything we love outside of Him.” (Chasing God pg. 22). That this is not our eternal home and we must learn to look at it from that perspective. And if life is about daily dying to all things around us so that our eyes and life only reflect His glory, then the point of suffering is that, “…we will never know God without first recognizing our need for Him.” (Chasing God pg. 23). God uses these seasons, these trials, these sufferings to realize that only the one true God is sovereign over our lives. That He really is with us, if we call on His name. That He loves us and our brokenness even now, when it’s real and raw, because God experienced it first hand when His own Son was on the cross, taking on all of our sins, and turning His face away for that moment, that very moment when all the sins of the world hung on His Son’s brokenness. The pain He felt as Father losing Son. He’s been there, folks. The Lord didn’t just walk this valley watching His Son bear all sins on the earth, He created the very valley that He, Himself walked through. If we go through this life with its seasons of suffering for the sole reason to have positive thoughts and rely on our own courage and strength, then we’ve missed the point of the valley. Smith reminds us that, “When we nod our heads and our hearts remain unmoved, we’ve taken it (the cross) for granted.” (Chasing God pg. 26).

Press in to the trial. Press in to the storm. Press into Jesus because He is the only One who can save you from the suffering. The only One who can wipe away your tears. The only One who can teach you and grow you through this valley and show you joy along the pathway. Let Him mold you through this and by this. He is writing this story and it can cultivate a new and amazing love for Him if you press into every part that He’s writing, not just easy parts but also into the darkest of parts. For when the world around us is the darkest, it allows Him to shine the brightest. 
Tuesday, October 20, 2015


Copyright 2015 ChloeGirl Designs

Last week our sweet Chloe had her heart cath. The test that was to tell us how to move forward...with treatment? Or to know that we've done all we can this side of Heaven to help our daughter. If it was her heart, and her heart required yet another hard surgery, then that would have been the end. If it was her lungs, then there was hope to continue on with time, nutrition, and hopefully improvement due to a delicate dance of medicines to treat her infections and help dry out her lungs.

The doctor who performed the cath, along with his team, guided us down the corridor to a place where we could view Chloe's cath, see how her heart function is, and watch as the dye crisply and quickly pulsated through her tiny veins on the screen before us. Just before starting, one of the others with him suggested we sit down. I didn't like the sound of this. Fortunately in the end it was simply because there was a lot to see, take in, and to be explained to us.

I think the Lord is like that sometimes. He gently guides us to sit down so we can talk and soak it all in. We assume that means the worst and brace ourselves, knees locked while bending slowly down in our posture before Him. But then He says, "I will strengthen you for this."

The cath revealed that Chloe's heart function had slightly higher numbers than we'd like, but were to be expected due to her ventilator settings. It revealed that the single ventricle (instead of two bottom ventricles Chloe only has one) that she has was squeezing great, but not relaxing that squeeze very well resulting in higher pressures and lower oxygen saturations. In the end, after viewing all the angles and thoughts, we were informed it's not really her heart, it's her lungs that need to dry out and that will help her heart. There's to be a ballet of intricate foot-work involving delicate levels of meds to balance in order for all parts to help each other to heal. But it's possible. It is possible. It'll take not days, not weeks, most likely months, but it is possible. I need to get that girl some ballet slippers...

Deep breath. Exhale. We have hope.

But we weren't exactly sure how to chew on these words. They swirled around in our minds, but never really landed anywhere. Her team agreed. With Chloe, so much is unknown territory. Even today a kidney doctor looked at me in the eye and said that he just didn't know what was causing weird kidney levels. That on paper nothing added up and we'd just have to wait and see. The hospital we're at is second in the nation for their kidney team. And yet he was baffled. Little did he know, stepping into the Chloe-game seventeen months too late that this is just how she works. It's in her DNA {literally, as in chromosome 22} to not play by the rules. We need to get him a #becauseitschloe shirt to welcome him into the fold that is the "we don't know yet" team.

We left the hospital that night relieved but worried. Confused but rejoicing in one more day with our daughter. Perplexed between asking the questions of do we officially celebrate that it's not her heart and include her in the Christmas present buying season...and yet at the same time not yet plan conversations with home health nurses?...

Often we hear God's voice tell us to sit down and take something in, then leave us on the cusp of, "Ok, but can you repeat that because I'm sort of lost and want to make sure I heard you correctly." At least that's how the Lord and I work. I hear Him, but I don't want to believe Him or fully trust Him. It's like I can see the paths ahead, and I don't know which one He's already ordained for me, but I, in my state of depravity, think I have it all figured out and know exactly which path is best for me. Or in this case, for my daughter.

But the gift is that He strengthens me for times such as these. He already knows and has ordained the path forward. I simply need to walk it.


Right. Sounds so easy.

Paul simply had to walk that road as well. Simply walking it, preaching it, right into house arrest for daring to share the Gospel of Jesus. In the book of Philippians, Paul is writing to the church at Philippi and thanking the Philippians for their gifts, and says that,

10 I rejoiced in the Lord greatly that now at length zyou have revived your concern for me. You were indeed concerned for me, but you had no opportunity. 11 Not that I am speaking of being in need, for I have learned in whatever situation I am to be acontent. 12 I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and bhunger, abundance and cneed. 13 I can do all things dthrough him who strengthens me.

Ever see on Pinterest or Instagram or anygram anywhere the phrase "I can do all things through Him who strengthens me"? Ever wonder what the context was? Because we make it cliche. We overuse just those ten words. God doesn't make scripture cliche, folks. We do. He writes the stuff. We misuse it. We've seen it on ads for star athletes. We've seen it on shirts and on tote bags. We've used it in every way we possibly can, but not always in the way it was intended.

Paul isn't talking about God giving him the strength to win gold medals or strength to endure until he's worked so hard that he can afford that amazing car//house//life//dream//fill in the blank.

God isn't saying he will bless whatever we do. This passage does not mean that I can do anything//be anything//try anything I want because Christ will give me the strength to. And He's not saying He will provide the material things to see us through the trials. Rather, He's saying He will strengthen us to stay obedient to the cross and trust Jesus in any and every circumstance. He's saying He'll give us the strength we need to stay focused on Him when life's trials come. That in every station of life, in seasons of want and seasons of need, the Lord will teach us contentment. "For I know how to be brought low and how to abound..." {Philippians 4:12}.

Earlier this week a friend drove over to see Chloe and have lunch with my husband and I. When the subject turned from how good the salsa was to how good {or not good} are we enduring this trial, all that came to mind, and has these last few weeks, was this passage. You see, last week, we walked into the doors of a children's hospital where our almost year-and-a-half-old daughter is and signed consents for a test that would tell us a bit of her future, grim or good. And in our hearts we had peace.

Isn't that odd? We had peace about the fact that we might find out we could lose our daughter soon? Now don't misunderstand, as I clarified to our friend, it's a brutally, gut-wrenchingly hard outlook where our lives would be torn apart, but there was a peace in knowing He would provide the strength to endure any outcome. And not just for this test, but for this entire journey ever since that first ultrasound. Flash back forward and the Lord has provided every meal, every pillow, every cent, every material thing for us, and He goes beyond that to provide for rest for our souls to find strength in Him alone.

Call me crazy, but I can't get there on my own. It takes a whole lot of relying on the Holy Spirit to get to that moment. But Jesus strengthened us for that moment. He strengthened us to endure the cath and the results. Each day, each test, each result, He provides strength. He makes us content in our current situation because He strengthens us to obey Him on this walk and to rest in His love. I'm still learning to relax and sink into that love. But it's there and I'm beginning to get used to it.

And it's not easy. The days I fight back {and I still do...I don't have it all together here, folks} aren't easy. But the point is that He is changing me from the inside out and teaching me that I can either choose my own way, and try to strengthen myself, or to choose Him.

It's in choosing Him that I find the strength to continue. One. Day. At. A. Time.

Wednesday, October 14, 2015

In the Valley Part 2 {Husband's Thoughts on Suffering}

My husband is currently in Seminary. Yes, currently, as in he sits by Chloe's bedside, often times one hand holding her tiny fingers to comfort her, and the other hand holding his phone which he's doing his assignment or reading on. 

I sent him the link to the post I just wrote {we always edit each other's before it's posted}, and he sent me back this, his more biblically-in-depth view of why there is suffering in our fallen world, formed from his study of Job, Ecclesiastes and Habakkuk from his discussion forum post.

As I read Ecclesiastes, Job (and Habbakuk again) and the accompanying reading assignments, I begin to see how much we are very much like Job’s friends, carefully building philosophical perspectives to answer the problem of evil, which I would sum up as asking how a good and just God can allow suffering in the world. Yet, just like Job’s friends, our perspective is just not big enough.

This is a question that is very much a pertinent one for me right now. There is a little girl laying about 10 feet from me right now who is in a battle for her life stemming from a condition that she was born with. If Psalm 139:13 tells us that God formed her inward parts and knitted her together in Jodie’s womb, then we are tempted to conclude that God “got it wrong.” How does a perfect and just God form together a little girl who struggles so with life? Our modern thinking would launch into discussions about the fall of man, and the stain of sin (which is obviously in play here). We would talk about whether God was truly sovereign over these circumstances, or whether He gave up some of His control (hint, God is sovereign).

Reading from these books this week though, we can see that God’s answer to questions like this is to gently remind the reader that “the problem of evil” is asking the wrong question. As the chapter on Job was absolutely excellent, let me point a bit to the thinking there in the discussion. After carefully reviewing all of the responses to the problem of evil (where all three sides of the argument assume that the retribution principle certainly must be true), God’s answer transcends these arguments to show that He is above the logic and thinking. Walton sums up this answer by saying:

“God administers the world in wisdom, and from his sovereign wisdom justice results. We may be lacking sufficient information to be able to affirm that God’s justice is being carried out day by day. We do have enough, however, to affirm that he is wise. If we believe that he is wise, then there is good reason to believe that he is just.” Walton continues on: “A focus on justice demands explanation of cause and gazes at the past, whereas a focus on wisdom needs only to understand that God in his wisdom has a purpose as it fixes one’s gaze on the future.”[1]

Our perspective isn’t big enough to understand God’s plan. Habakkuk can’t understand how God can judge the Assyrians by using the Chaldeans (Babylonians). The response in Habakkuk 3 is once again a celebration of who God is and how He has worked in power. As we look back then from the historical perspective, we can see that Babylon is defeated by the Persians, who are supplanted by the Greeks, who are supplanted by the Romans and so forth. Since we don’t have the eternal perspective, we can only celebrate the God who has revealed Himself to us.

So, as I sit in a room, knowing that tomorrow may bring information that could heal our daughter, or information that will lead to loosing her, rather than ask why, I simply can trust in the God who revealed Himself through creation, His word, and most importantly through His Son. No matter the outcome, God is using Chloe’s life to accomplish His purposes, and though I can’t see it (and probably will never know how He used this situation), I can trust confidently in a God Who is wise, good, and finally just, knowing that He has told us, “For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts and your thoughts.” (Isaiah 55:9-10)

[1] J. H. Walton, “Job 1: Book Of,” ed. Tremper Longman III and Peter Enns, Dictionary of the Old Testament: Wisdom, Poetry & Writings (Downers Grove, IL; Nottingham, England: IVP Academic; Inter-Varsity Press, 2008), 342.

In the Valley

Tomorrow holds a lot of answers.

But today does not.

Today I'm anxious as I wait for tomorrow's light. Literally and figuratively speaking. Our daughter has a heart cath tomorrow that could help us to know key information on how to move forward with treatment and recovery. But it could also reveal information that might foretell bad news, such as her heart not liking this new plumbing she recently received.

Sleepy baby girl. Who insisted on holding my hand. 

Scripture says, "Even though I walk through the valley of the shadow of death, I will fear no evil, for You are with me. Your rod and Your staff, they comfort me." {Psalm 23:4}

I memorized Psalm 23 sometime in my high school years, but I never really grasped it. As an adult, I've referred to it when praying for friends or family, but I barely understood it. But as a mom, walking this valley with her child, it finally truly hit home.

My ESV study bible paraphrases that valley can mean "the shadow death casts, or it may be...deep darkness". The example they give for deep darkness is to picture walking in the darkness in a valley in the desert where you might come across deep shadows such as those from animals, or the fear and suspense that the lingering darkness encompasses, but that even in those dangerous moments, "the faithful find assurance that God is with them, and thus they need not fear." {ESV Study Bible Pg. 966}.

...So this is the valley...

I get the deep darkness. I get the not knowing what dangerous or scary thing is around the corner. I get the frightened feeling. I get the feeling where I begin to think worst-case scenario and my chest becomes heavy with each breath as if I'm becoming suffocated by my own fears and thoughts.

What if it's the bad news? What if it foretells that although we've tried everything...that there's nothing more we can do?

I've also thought of Proverbs 31:25 which says, "Strength and dignity are her clothing and she laughs at the time to come." Other translations read "she smiles at the future," (NASB) or, "she laughs without fear of the future," (New Living Translation). My study bible explains, "She laughs at the future, in contrast with being worried or fearful about it," (ESV Study Bible Pg. 1191).

How can I laugh in the face of the future? How can I smile and move on in strength and dignity? How can I accept bad news and then laugh at the times to come? I can't. Not without my Lord. If I rely on my strength alone, then it left me long ago, well before that first ultrasound. If I rely on dignity, well, there have been moments on this journey that I have not handled well, but in giving myself grace, I can say I've learned much and am changing as a person.

And to laugh in the face of fear?

I can't. My feet are frozen. My soul is paused. The only way I can even face tomorrow is by turning my eyes upon Jesus. Remembering that He was known as the Man of Sorrows for a reason. He knows this. He gets me. He is here. I think the only way the woman in Proverbs 31 was able to smile at the future was not because she was naiive and clueless, but because she grounded herself on truth and didn't let the lies of Satan sway her. She stood her ground because the Lord was her foundation.

I'm pep-talking myself. I'm reminding myself that even before the heart cath is being performed, even before our information is gathered, that I have no grounds for fear. I need to only rest in the fact that He is sovereign. That He hears our prayers. I did not say He always answers them the way we'd like. But for today, I can remind myself that He hears them. He knows them. He knows my heart's cry. And as long as I've brought my burdens to Him, I can, for now, rest in knowing that this is out of my hands and into His. I can beg and beg and beg for the Lord to fix my child and make her well again, but if I don't trust that He's actually capable of this very thing that I pray for, then I doubt His very existence.

I choose to believe He does exist and His healing is real.

I choose to believe He's capable.

I choose hope.

We're in the valley, folks. What good can come from such a valley? That it causes my eyes to look up to the mountains.

"I lift my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth." {Psalm 121:1-2}.

Friday, October 9, 2015

Laundry Baskets of Grace {Real Life}

I think we've hit survival mode. And by hit, I think a while ago, past-tense, not present-tense hit. Or as my almost six-year-old says, we've hitted

I was up last night till 2am. I actually went to bed with the kids at 9:30pm and began a new night time routine of reading my old Little House on the Prairie books. I was secretly skipping words and paragraphs because I realized how much the beloved writer likes to give details of scary wolves outside their door and descriptives of hanging the hide of the deer up to dry, hoping my kiddos wouldn't get scared or ask midnight questions about butchering. Perhaps I should have skipped to chapter two. 

But I didn't stay in bed. I came back down and managed to waste time until 2am on blogs, youtubes, facebook, prayer (that wasn't a waste of time), and more blog reading because I was trying to distract myself from missing my sweet Chloe girl. 

I'm home with the kids while Alan is with Chloe because our oldest got a virus, and now a cold. We're exercising respect for other sick kiddos in the Ronald McDonald House and choosing to not expose them to our germ bugs. And we can't be around Chloe with these bugs. So we're home, they're there, we're all over the map, and if you want to get technical, even in two different states. Each day I think we're good enough to go back and see her, someone sneezes or coughs or snots. And I know we must stay.

"Mommy!!!! M-O-M-M-Y!!! So I sneezed and this BIG snot came out and it took FOUR PIECES OF TOILET PAPER to clean up!!!"

My handsome blonde-haired eldest felt the need to yelp this to me, his voice trampling through the shower curtain and bursting into my hot water and shampoo. 

"Mommy, I goed waters on the potty and wiped myself and now I'll go get dressed!!" said my four year old, who forgot to flush and because I was freshly clean and on high germ alert I ninja-kicked our toilet handle. I don't trust where her sweet little hands have been in the ten minutes I was in the shower with my eyes off her. 

We're in survival mode. It's 10:14am and I just preheated the oven for canned cinnamon rolls. It's 10:20am and I just started the first pot of coffee. I'm the only adult at home and I poured a six-cup pitcher into the reservoir. I don't know how much I'll drink, but subconsciously I guess a lot. And I'll teach my kids the meaning of the word brunch whose real meaning is "missed breakfast". 

Yesterday, the child whom I thought would sleep in after a restless night of fevers, hovered over my head till I awoke, then told me he had a surprise for me and Abi. Breakfast, made perfectly by him and included a love card. {And deep down I was slightly nervous to eat this considering the sizeable amounts of sneezing and snot that had preceeded his announcement. I think I prayed over each bite that I wouldn't inherit any germs}. 

I cancelled homeschool today in an attempt to just. be. To let my snotting son rest and watch movies because otherwise his body is on the go and he refuses to surrender to the bug within him, until finally night creases and he's exhausted and having night sweats and temps. I'm going to force feed him Netflix today. You can mail me my Best Parent award, but no rush. Our mail is usually held till the weekend because we're never home. 

Yesterday's homeschool lesson plan included him reading out loud to me while I cleaned his room and his sister watched alphabet DVD's. I then made him help work on his war zone and will write in the lesson plan "Life Skills Day". And on Life Skills Day we also made a trip to Target for toothbrushes because the mama forgot to pack the ones from our city house and realized yesterday, day 3 of being home, that we had none and my child's teeth would soon resemble that of the Grinch if we did not venture out. And we bought toothpaste. Not that it mattered because more ended up on the sink and towel than in their little mouths. 

Abi's life-skill challenge of the day is to learn to use a brush. And to apply mommy's make-up better. Note the suitcase in the background...

Our laundry baskets are heaping with clean laundry, mostly folded. I don't mention this because it's another real-not-perfect moment to bask in with other moms or to boast in the fact that most of it is clean and at least off the floor, but because we literally live out of suitcases and laundry baskets for travel. We've ceased using our dressers and closets. Takes too long to pack on the fly.

I wear a Garmin because I don't have time or finances or routine or schedule or motivation for a gym. But these days instead of trying to reach my challenged 10,000 steps, I use it to remember the date and track my sleep cycles to assure myself I am getting sleep. Or remind myself when I'm not. 

I wrestle with guilt on a near daily basis, between worrying about our littlest and trying to get things done, with wanting to play with my other littles and give them quality time. It's a hard balance because there are days I'm so distracted with Chloe stuff, but have to balance that with parenting and behavior issues and life skills (yes, dear sweet girl, you DO have to zip and button your pants! No you cannot just let it all hang out all day. Now please, PLEASE just zip them up!). We struggle with spoiling-detox and then the next day cave into whatever they want because we can't give anymore of ourselves. We're spent. It's hard to strive for routine in a non-routine season. It's hard to address the issues any parent would face, but in the face of a crazy two-year season of not-normal.

Typical texts between husband and wife:

"Rounds just went by. Everyone agreed that she's ever so slightly better, which after a week of worse or she still looks bad was a tiny bit encouraging."

                   "Ok. I'm still hesitant to breathe yet though."

"I absolutely agree."

And on top of this, I lecture myself on grace. Please don't ever get the wrong idea from this blog. Our lives are in a rough spot right now, but we do truly cling to our Jesus through this. But that doesn't mean that we're walking this road with a smile and we should have on our running shoes and embrace each step-that's what we try to do, but honestly it's more like stilettos on a rocky and steep decline. Truth is, we're broken. And most days I spend more time trying to squelch the lies of the enemy than I do just resting in His presence. I feel under attack often. As if it's not hard enough to be a woman, a mom, a wife, a follower, and constantly struggle with self-image and insecurities and I constantly struggle with pride and with what others think of me, but add to that that I'm walking a life I never imagined on a path I didn't pack the right shoes for in a season I didn't expect in a dry desert where I can't breathe because the air is so heavy. Thankfully I have my love by my side and my Saviour as my guide. I did not mean to rhyme that. Perhaps Dr. Seuss and BOB Books have been read in this house too much these days. But it's the truth. Literally. I cannot make it through a single day without Him. 

Because truth is that God CAN give you more than you can handle. And He will. If you don't believe that, go back to the beginning of this post and re-read. We're in survival mode. We're proof, our lives are proof, that the Lord WILL at some point hand you something that you cannot face alone not to prove to yourself that you're strong enough to handle it, but to drive you to your knees and to your tears to cry out to Him for strength. 

And then seek Him. I'm learning to seek Him. To stop drowning myself in Netflix and mindless time-consuming ways, and instead I'll focus on Him. Using this time at home with my kiddos as a sort of "retreat" to dive into scripture and encouraging messages filled with Truth and focusing what little energy I have left after wiping noses and disinfecting counters to soak in Truth and surround myself with fixing my eyes on the cross. 

No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

(Romans 8:37-39 ESV)

And I let the laundry sit. And I learn the hard way to give myself grace. And I'll crank my Christmas music {note that I said music, not carols or Jingle Bells...that stuff can wait} even against nay-sayers who insist it not be heard until after Thanksgiving, because Christmas music early is my way of focusing and anticipating the birth of the One and only Healer who came to set the world straight and wipe away every sorrow and disease.  And I try to focus on His love for me, for us, for Chloe.