Wednesday, March 22, 2017

Thankful for the Unknown {An Excerpt from Finding Thanks}

//Excerpt from the book (in progress) Finding Thanks by JGerling//

Chapter 7
Thankful  for the Unknown
A diagnosis. Two amniocenteses tests later and we finally had our diagnosis, but it was so rare that there was literally no information for us to learn more about what this was or how to help our daughter. All we knew at this point was that the real name of this scary thing we were going through was called Mosaic Trisomy 22, or MT22. Essentially, Chloe’s twenty-second chromosome carried an extra chromosome, so instead of a set of two chromosomes, there was an extra, making three instead of two, but not in every cell of her body, hence the mosaic part. 

And nobody knew much more beyond that.

I was seen weekly by my local doctor, if for nothing more than to answer all our questions and listen for a heartbeat, and give my tired and weary mind rest for a few more days. Every fourth week we would travel the children’s hospital in our region for more in-depth ultrasounds and her fetal heart echo. We met with various teams from around the hospital who would be helping us, hopefully, get to full-term and delivery. Our hearts usually arrived on appointment days in Kansas City filled with hope, and left with worry. Doctors are trained to give all the sides of the story. It’s just what they’re trained to do, but it usually left us grasping for faith and remembering that our God is still good, even though that day’s ultrasound showed a club foot after all, or this week the amniotic fluid was lower. And the Lord provided so much strength when our knees were the weakest.

It was still hard to come home from each appointment and watch as my friend’s around me who were pregnant advanced with great ease and health, while mine stood still. Literally, we didn’t even know anymore what week gestation our baby was because measurements were not adding up with dates. It wasn’t until we were able to compare some early ultrasounds with later ones, and came upon the diagnosis of something called IUGR, or Intrauterine Growth Restriction. In short, our baby, who already had a slew of health issues, also was not growing well in size. 

When that diagnosis came, I sobbed and did what every hormonal pregnant mama did: I complained.

“What week am I in again? Because it feels like this is the pregnancy from eternity! I’ve been twenty-four weeks for three weeks now!” I wailed at my doctor, begging for clarity now that we had the IUGR info at hand.

“Yeah, you’re an elephant!”

PAUSE.

“That’s not what I meant! I mean like, well, like how it takes an elephant two years for gestation!”

I started to cry, but laugh at the same time. I knew I wasn’t like an elephant, but tell a pregnant lady that her pregnancy is going to last forever and compare it to an elephant and she’ll break down. We know very well that my doctor did not mean it that way at all, but was simply making a comparison, of sorts, and thankfully this provided a much needed comic relief moment while on this path to our daughter’s delivery. (And the elephant joke has never died, and we still think it was one hundred percent hilarious that those were the words that fell out). 

The entire pregnancy was a swinging pendulum, one end hitting on every fear we could ever have as parents, and the other end on the mystery of why the Lord chose us for this child, and the uncertainty that was her trisomy. The only thing that was sure, that was certain, was that despite those along our path who advised us of getting an abortion, we knew without a doubt that this child would live until the Lord decided to stop her beating heart on His own time. Abortion was not an option for us. Life was all we would ever consider. And to be clear, we knew what our stops were with her in regards to this, but as long as her heart beat without suffering, then we chose life.

Our daughter was born exactly one week after Good Friday. The moments leading up to her birth were filled with such worry and anxiety for me. I was terrified to be her mother. I felt in no way equipped to handle the life of a special needs child. Of a heart baby. I was not a nurse; I only knew how to be a mother. I had no medical training, and yet I knew that the moment she was born I would be immersed in medical life, and it terrified me. The doctors preparing to deliver her questioned why I was so nervous and thought it was the surgery itself to deliver her, so I let them believe that because I wasn’t about to tell them that I was scared to meet my daughter. No parent admits that. But most of all, I was afraid that I wouldn’t be enough for her. That I couldn’t fix her, and so much of her was unknown.

But there was also joy. Amazing joy that she was here, she’d made it to almost full-term, and her heart was still beating and she was breathing on her own. And even through a three-chamber heart, cleft lip and cleft palate, a clubbed foot, and later what we would learn was only one kidney, we still heard her first strong cry echo over the delivery room. She was here, finally, and she was letting us know it. I could hear her tiny little cry from the room adjacent to mine where they were working to help her seconds after she was born. That cry was a rally cry that she had made it here. I was so blessed by the fact that although her future seemed so unknown and bleak at that moment as we waited to see how she would do out of the womb, that the Lord allowed that sweet cry to echo over the room so that I could hear it and know she was here and that she was alive. 

We were so thankful that the Lord had placed this tiny three pound, seven-ounce gift into our arms and into our life. We were terrified, but thankful. Neither of us had any idea what this next step would be like, or that we would end up spending the next five-plus months living out of the Ronald McDonald House as we navigated the life of the NICU, getting our daughter to grow and be strong enough for heart surgery. Our minds had no way or fore-knowledge to grasp such unknowns that her trisomy would bring into our world. All we knew at this point was that we’d found a support group online for family members whose child or relative had MT22, and let me just say, there were not many in that group. It was by the grace of God that we stumbled across that, and it became our second source of hope, next to the Lord. When we read stories and saw pictures of other children living lives full of love and laughter regardless of what an extra chromosome said about them. Sadly, some children did not survive, and that left us with a great amount of compassion for their families, and concern for our daughter’s future. But there was one main thread that was woven into this group of people with Mosaic Trisomy 22: Everything with this trisomy is rare and unknown. No two cases are a like in similarity. A few traits crisscross between different people, but overall, this abnormality is so abnormal, that all we know is that there is a chance you can survive it, so we clung to that piece of information, and we studied and held close the images of the other children living with this trisomy, and we held onto hope.

My husband loves academia, and I love to research things, so together we make a pretty powerful pair when it comes to learning about new things. It especially came in handy when we were met by the hospital’s chair of the Bio-Ethics department and he carefully considered his questions for us as he probed us to make sure we understood the depth and concern of our daughter’s trisomy. We shared our story. We showed him pictures of the other MT22 children. We explained our stance on life and on why we were making the choices we were and didn’t choose to abort before her birth. And shockingly, he agreed. Being that our daughter’s diagnosis was so rare left open the door that she was a grey-zone baby, and that we had every right to continue granting her life even when she was ornery and would do things like aspirate, code, and find other ways to freak us out. The unknown of her diagnosis became the rally cry that just because it’s rarely documented does not mean it should end. Statistics sat there, off to the side, benched, as we instead fought and advocated for our daughter, carefully balancing each decision, each consent for surgery, each procedure against her chances of survival.

Our hearts learned to trust the Lord more deeply and press into the unknown. Never had we been so thankful to hold the word unknown in our hands, carefully and delicately, and still be so thankful for the timbre of that word. It is by nature alone that humanity wants to know what is next, what’s to come, how to move forward or at least a reason to pause. But to be certain of, and thankful for, the unknown left us with only the opportunity to trust Christ with our daughter’s life. Any other word that might describe her diagnosis, and the scale that lends itself to either a white-zone baby or a black-zone baby may have tilted against our desires, and we might have trusted statistics over our instincts.


In the NICU, there’s the saying, “Look at the baby.” What it means is to look at the baby to decide if they’re blue or struggling or whatever the situation might be. Do not always trust the monitors and beeps. In our case, we were choosing to look at our God and press into this space of unknown, these waters that were consuming us, into a grey zone that we knew nothing about, and be able to thank Him for leading us instead of leaving us. God’s Word says in Isaiah chapter forty-three verse two that, “When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.” (ESV)
Tuesday, February 28, 2017

Waiting for Results

After months of scheduling and rescheduling Chloe's MRI, we were finally able to follow through and get it done this last week. Set back after set back, including MRI machine down and a urinary tract infection (UTI) being treated in October, November sickness, no room at the inn (PICU bed unavailable) in December, and finally one more push back from January to February due to yet another UTI.

We've spent the last two months, one ER trip to KC Children's ER, and various labs tracking down a consistent high fever. We've test for everything under the sun and concluded at one point that it was something viral plus teething. Another time it was an ear infection that also included MRSA.

But through it all, we've seen no distinct changes in her fontanel pressure, other than it's slightly less full when she's off her vent than when she's on it. We continue to watch closely for any signs of seizures, however her seizure activity ceased completely last fall after she started her first seizure med. We're grateful that in regards to possible pressures in her head that she's been stable all this time.

That brings us to last week. She had a crazy little episode while getting her up the morning of her first day of appointments where she dropped her heart rate rather quickly and back up again, and somehow woke with a 100.8 fever. Our concern became more real as we closely watched for any signs of sickness, or the MRI would need to be cancelled. At her regular Home Vent appointment, her doctor explained to us that continued cranial pressure over time can cause a quick heart rate drop and make it difficult to regulate body temperature, and thus even though they might appear like illness coming on, it was more important to gather the information needed by going through with the MRI.

Chloe did great with her MRI and recovery this time from anesthesia. We came home over the weekend and are waiting for results from the MRI. The only glitch was that her heart echo was showing a slightly weaker squeeze when done under anesthesia to get better pictures, than in clinic two days before. We pray that it was only due to the anesthesia and nothing else of concern.

What we're waiting to learn: The reason for the MRI was to determine why her fontanel is still full. Why her eyes show edema (swelling) on her optic nerves and still twitch at times when she's trying to focus. If there's fluid on her brain and whether that means a shunt to drain that fluid and relieve pressure. Or, if not fluid, reasons why these symptoms are still here a year out from when they were first noticed. Is the pressure in her head due to the changing pressures from her Glenn heart surgery last year, and if so, will it continue to go down the more we wean off her vent? And thus, is it a less invasive waiting game to get off the vent than an invasive shunt?

We have discussed this at length with her team of doctors and with her Palliative care doctors. We're all on board that she needed the MRI, and we're on board with a possible shunt if that is needed, if even for comfort care. The Palliative care team assured us that many families choose that for comfort measures. I can't imagine having a headache or migraine every single day due to pressures, if that's what she's experiencing but cannot communicate to us.

That brings us to this week of waiting on results and planning out future neurology appointments.

And the weirdest part is simply that we do not know how to pray through this.

We know we need to pray, that we're called to pray, that God hears our prayers. But we also know that prayer is not a list of our wishes prayed over and over in an attempt to make them come true. Too often people tend to pray for the things they want-good health, wealth, no suffering, that dream house, that car to get fixed, the paycheck to stretch, fill-in-the-need. We usually approach the Mercy Seat with our mind already fixed on what the answer is.

But what if we don't know? We truly do not know what the best outcome of results would be in our current situation. We don't know if we should be praying for a shunt, or praying for no fluid so she can wean from her vent. Both have negative consequences and poor outcomes on one hand, or good results and outcomes on the other.

We usually know how to pray for her needs. We ask the Lord to intervene on the level of knowledge that we as humans have, and then wait expectantly for Him to come through. This season of waiting for the MRI has taught us, above all else, to just pray. To pray the Lord's Prayer as taught in the Sermon on the Mount (Matthew 6:5-15//Prayer 6:9-13). Not filled with every example of outcome and result, but simply from a heart that trusts that He is good, He is for us, and He will go ahead of us in this to help our daughter.

We ask that you would pray that for us and for Chloe as well. Because His will covers the skill of the doctors and the anxiety of our hearts. Because He provides our daily bread as each need we do not even know of is met. Because He forgives us just as we have learned to forgive others. Every need and want and worry is met in that simple prayer.

"Now to Him Who is able to do far more abundantly than all that we ask or think, to Him be glory in the Church and in Christ Jesus throughout all generations, forever and ever. Amen." 
Ephesians 3:20-21


Friday, December 23, 2016

A Christmas Chloe Update


Credit: Liana Moments // JD & Liana Works

'Twas the night before Christmas Eve
And all through the house
The suction machine was stirring
Nothing quiet as a mouse.

The stockings were hung
By the chimney with care
And the Gerlings were happy
Because we all would be here.

Home this year from the hospital
Was our first Christmas wish
And that prayer was answered
So bring on Saint Nick. 

The MRI was bumped
Into the next January season
So for now we keep a close eye
Unless she shows us a reason,

That she'd need that test sooner
Christmas at home is best
And on this the team agrees 
So we're all snuggled in our nest.

The MRI will show us
If there's fluid on her brain
And if a shunt would be the right choice
To help it all drain.

But that's a story for another day
Today we focus on Christmas
We'll deal with what comes next
When the next season hits us. 

So the stockings are hung
By the chimney with care
Three years ago this very day
We were told one stocking would not be there.

But it hangs next to the others
And presents under the tree
Remind us all of the meaning of Christmas
And where our hearts should really be.

So we remember the Christ Child
And why He truly came
To help heal the world
Including the sick, the lost, and the lame.

He brought with Him such kindness
And love to rule the earth
To teach us of grace and forgiveness
To show us what His life was worth.

To go from manger to cross
Born to bring peace, His death for our sins
Heaven bent down on Christmas
And that's where the story begins.

We thank you all for your prayers
And the love in your hearts for us
We wish you a merry Christmas
And a new year filled with love. 


* * * * * * * * *
We originally made this for the Daddy, but decided it'd
be our family Christmas card as well. 
Enjoy and have a merry Christmas!
* * * * * * * * *






FB: Our Chloe Elizabeth  //  Instagram: Finding Thanks (finding_thanks)



Monday, November 7, 2016

Chapter 11: Thankful for Courage



I'll let you in on a little, tiny secret: I'm working on self-publishing a book. It's about all the ways we're thankful in each season of this journey. Here's a snapshot...




Chapter 11
Thankful  for Courage
            Courage is a deep word. I think if you were to hold that word in your hands, it would feel round, like a stone, and heavy. Very weighted. It would press deep your into your palms, and you would need to summon the strength of your fingers to flex and hold it firmly, but it would not be so heavy that it could not be fully held. And when I think of the word courage, my mind pictures its physical state to be round. Never-ending. No real definite beginning, and no real ending. Not abstract or jagged. Not distorted or complex. Smooth, round, heavy, yet able to be held, and felt, and experienced. I believe the very act of holding this word would cause your heart to flutter and knees to be weak enough to still stand, but at the same time you would know that you were meant to hold it.
            I’ve been reading through the stories of Kind David recently in order to get a better grasp on just who this king was whose line would be included in that of Jesus. While reading 2 Samuel, I came across the section titled, “David ‘s Prayer of Gratitude” at the beginning of chapter 8. As I read through the lines of text that reveal how King David went before the Lord in prayer and thanked and praised the Lord for all of the mighty ways that the Lord had protected, guided, led, and redeemed David and all of Israel. At the end of this prayer, David basically says that yes, he will build a house for the Lord, just as the Lord has asked. To clarify, this is not technically a house for the Lord, so much as it is a line for Jesus to eventually be born into. What the Lord was really saying was that He had included David into the line of Jesus and that Jesus would inherit that role of King over the eternal kingdom, just as David was king over God’s people here on earth. Incase you’re a bit lost: God was going to use David for something mighty and BIG.
            And instead of backing down, David showed gratitude to the Lord for finding such favor in him to be chosen for this.
            Scripture says in 2 Samuel 7:27, “For you, O Lord of hosts, the God of Israel, have made this revelation to your servant, saying, ‘I will build you a house.’ Therefore your servant has found courage to pray this prayer to you.”
            I love that prayer. I had to read it a few times for it to sink in. When God asked David to do something, David answered that call with courage. I looked up a few other versions of the Bible, and each one I found used the word courage. Courage is defined as the ability to do something that frightens someone, and in biblical terms, that can also mean the ability to do what the Lord is asking them to do, regardless of what earthly men would say. I’m thankful to see the vulnerability of David as he confesses that he needs courage to do a task that the Lord is calling him to.  God placed a calling on David, and David responded, with courage and thankfulness. That calling was the Lord using David in the great lineage of Jesus. I think David recognized such an enormous calling was before him to keep his eyes focused on the Lord, and to continue to be an example of one living for the Lord. Did he mess up? Yes. Did he make bad choices at times? Yes. But did David stay true to the heart of the Lord and keep Him in focus? Yes.
            I guess that’s how we responded when we first began to discover the pieces of the puzzle that was Chloe’s diagnosis and then plan of delivery and treatment. We knew that God was placing a calling on our hearts to give this child life, and with that meant clinging hard to all that God had already taught us and all the way’s He had already led us and protected us in order to give us the courage that it would take to accept this calling. God did not just ask us to do this suddenly. I think that the Lord led us gently into this season.
We did not even take the time to consider alternative options when faced with the news of our first ultrasound with Chloe because we already had the knowledge that the Lord creates us each to be fearfully and wonderfully made, and our daughter was no exception. In our hearts, we already knew that God doesn’t make mistakes, especially when He is designing a child, a person in His own image. To say that Chloe, or any other child born with a deformity or abnormality or trisomy or anything that man believes is deemed unworthy of life, is to say that God made a mistake and didn’t get this one right. But when you stop to consider that God makes us each fearfully and wonderfully in His own image, then perhaps His own image is beautiful enough to be perfect even if that image is different than what society says is normal. Perhaps that image is still His, even if it bears a Hypoplastic Right Heart and a mosaic trisomy. What if it takes a broken heart to be used to remind us that God is in control, that He is beautiful, that He can teach us compassion and love and grace and wisdom through this tiny heart? I don’t think Chloe’s heart needed to be perfect to teach us that. I think the Lord has taught more about who He is and what He is about and how to love and live more like His Son through the seasons we’ve traveled with Chloe.
            But it took courage for us to embrace each of those things. It took courage to look death in the eye before her heart surgeries and heart cath and say that our God was still good. God’s strength is made perfect in our weakness. In our darkest moments with Chloe, we felt the closest to the Lord and in the surrendering of our will to His. Courage to be vulnerable with this journey. Courage to live out each day fully, even the fearful ones and the messy ones, even the lively ones and joy filled ones.
            And all of that started slowly, gradually circling around the same truth, that God was good and for us and for this child that was being designed intricately in the depths of my womb. That’s where the roundness of the word courage comes in. We didn’t see it coming when God allowed me to conceive Chloe. Our breaths slowly echoed that word as we watched the screen on every single ultrasound over four long months. We wouldn’t know the extent of it until we met her upon her entry into this world, when she drew in air to her lungs through that cleft lip for the very first time. This same courage grew with each surgery, each time we’d face uncertainty, and each time we would learn to stand up and advocate for our daughter. C.S. Lewis wrote that, “Courage is not simply one of the virtues but the form of every virtue at the testing point, which means at the point of highest reality.” The courage itself has always been building, always circulating with strength, and always will be, even to the day that Chloe might go to be with the Lord, because the Lord has called us to this task, and we choose to follow Him.
            That brings me to the most courageous part of all. The courage to let go. With our daughter, she’s a grey zone baby, as I’ve mentioned before. We simply do not know, based on all of her unique set of circumstances and rare trisomy, how many days we have with her. In the words of one of her NICU doctors, “It could be three days, three weeks, three years, or thirty years.” There’s this sacred, secret dance of grief that we play in the background, always wondering and fearing quietly if today is the day, or is this week the week? Not every day. Not every week. But it’s there. That’s the part of courage that I dread the most. The someday saying goodbye. For now, we learn to accept the small bits of grief. That she can’t quite yet sit up on her own. That we can’t hear her voice or the word mama with her trach in. That she’s half the size of her peers. That she’s developmentally very far behind, and that only time will tell how far she will advance. At this point, she cannot crawl, or walk. We know there’s a bigger grief that will one day come, and we pray for courage to accept that day, whenever it is for her. But for now, we choose to embrace each moment, and pray for the courage we’ll need to face more in the future.
            We’re thankful that He is our guide in this. Our family is grateful that we have a God who is bigger and mightier than we could ever imaging, and that the Lord is the one equipping us with the courage needed in this task to raise our medically fragile daughter, and allowing us to be brave enough to love her without any guarantees in the face of this calling.  



Thursday, October 6, 2016

To Abide



Yesterday I decided on a whim to throw away the afternoon to-do list and get some lawn work done before more rain and busy comes this weekend. I managed to get the front lawn mowed and while in the process of mowing, discovered that the giant bush//plant//tree-thing in our side lawn by the fence was growing a wicked creature whose limbs were entwined and entangled around the bush, over the fence, and through the wooden slats. From the scientific wording in the previous sentence, that should tell you the extent of my knowledge of plant life, but even with the lack of skill in describing correctly the massive greenery before me, I still knew what a vine that didn't belong looked like, and that it was taking over the beauty of that bush, slowly suffocating the life out of the once vibrant branches.

Having just cleaned the garage, I found my husband's leather work gloves, the kind that only cover the palm but leave your fingers bare to the elements and presumed sawdust. I think this is because the genius minds behind the glove design assume you'll cut a finger off so they save the good leather for the rest of the hand. Either way, they were huge on me, and the leather felt awkward as I'm not a carpenter and do not wear these type of gloves on a routine basis, but I figured they'd help protect my hands from thorns.

With my oldest kids in tow, we started cleaning out the vines that had tangled the bush. I take that back. My son helped while my middle child decided to take a nap on the family swing in the yard, gazing off and daydreaming with the clouds. She always manages to get out of the hard work. My son, the helpful child, decided to wear some of his sisters latex medical gloves, I suppose because to him a glove was a glove. He had yet to learn that just because it was on his hand, that didn't mean the thorns would protect him and not poke through, though as our work got under way my son slowly discovered that these were not the right gloves for the job. Surprisingly he stayed beside me and continued to help, just being more careful with where he reached for the vine at to avoid more thorny thickles (as he calls them).

Somewhere in the midst of yanking vines and untangling branches and feeling all of the tiny thorny thickles prick my fingers, I was reminded that my life is like that giant bush, and the vines taking slow residence are like the world, slowly creeping in to fill the gaps where I let my guard down or I let life in general take over without keeping my eyes on the cross in the process. Often this life with not just Chloe and her needs, but raising our young family in general, leaves those gaps open these days and I'm left to summon the strength to reach in and pull those thistle strewn vines out and away, trying to be cautious and aware of their presence so that they do not fully overcome me.

And then sometimes, I'm learning that I cannot be the one to pull all of those weeds away. No matter how much I reach and stretch, there are still weeds at the top of that bush that are sitting up there, dancing in and around each delicate branch without care as to how much life it is taking from the bush. I stood on the curb beside the wooden fence and tried to hold the fence with one hand, balance on one foot, and lean in and reach through the thorny bush to get to the prickly vine, and when my fingers finally touched the edge, only a sliver of the vine was I able to pull down. I didn't even care that I was reaching through thorns in order to do this, but I was determined to get that vine out one way or another. I could have gotten a ladder, but it wouldn't reach them all even still. I could have asked another person to help, to intervene but even they would not have been able to reach the top weeds.

I pondered the fact that try as I may, only He can reach the weeds that are wrapped around my heart and need removed. Only the Lord can then breathe new life into me and grow me again. And only with God can I even be willing to reach my hand into thorny territory of what is in hopes of cleaning out the mess that is within in order to restore the richness to this plant that once was. I could leave them there, out of sight//out of mind strategy, but as with any weed, they'll just continue to grow more. Although it'd mean more work, more effort to ease them out, it would be the better choice in the long run. I could try to protect myself in the process and do it on my own but that was proving too big of a job. I could carelessly just try to fix it, just like my son thinking that any piece of material covering his hands would surely do the job and protect him from getting hurt by the thorns. I knew better for him. I knew those latex gloves were nothing but a single thin layer, ready to break the instant a thorn speared through them, and was able to explain that to him so that he was more careful with how he untangled the messy vines. Likewise, my Father knows what will best protect me and what will help me to carefully remove the tangled mess while still keeping the beauty of the plant intact.
 
So I choose Him. He gets the bid. He gets to do the job of restoring the delicateness that is beneath the tangles. And then
He reveals the blossom of a new flower. Life again. Breathed back in, no longer choked by the weeds of this world. Yes, it hurt to pass my flesh by those thorns in order to accomplish the work before me, but I'm finding the more I abide in Him, and He in me, the more beautiful those blossoms are, and how much more often they're in bloom.


Wednesday, September 28, 2016

Messy Devotion

I spent last night trying to find a sitter for child #2 so that I could take child #1 to an appointment today. We raise the stakes high when it comes to finding a sitter as they need to be of the utmost health. We stress the importance of, "Well do you think it's just sniffles or a cold?" Because Chloe. I thought of one more person to message at {cringe} midnight, and they responded this morning that yes it'd work!

And then my son threw up. And has a temp of 100. And a few other unmentionable bodily happenings. 

And so began my day. Text friend, "Oops, nevermind." Call and reschedule appointment. Inform nurse of a bug in our home and suggest she wait this one out {so yep, I'm the nurse today!}. Firstborn is nestled snug in his Disney Planes fleece with iPad and headphones and barf bucket nearby. Child #2 ate sugar for breakfast. Child #3 is pooping. Seriously, she has about 4 morning diapers, each of which are intense for her to make, so it's kind of a thing for everyone to endure her morning diapers. 

This is not the day I had planned out. This set of circumstances was not scripted onto my daily planner. Just like flying Chloe to the hospital last weekend for possible seizures was not on the family calendar either (we're home now, she's OK, update to come). Our days can only be planned so much, and today was one of those days. I sat down with my steaming small cup of Apple Cider Donut Coffee and had one simple revelation: If I was going to survive this day, I needed Jesus. I parked myself in front of my home office, complete with organized bins from Target home section and a beautiful fall bouquet, the blooms of which were catching the morning light streaming through the window above my daughter's white IKEA crib.


I added the sun glare so that one of the statements above was true, and by adding it, it somehow managed to disguise my Dove chocolates that were consumed last night while editing photos from a recent session. Why yes, that is a Yoda mouse pad. Nope, that's an average 6oz coffee mug. And doesn't everyone have a pill crusher on their desk? 


Turning to my friend YouTube, I searched from a quick video devotional to kick start this day in the right direction, then ten minutes later posted this plea to Facebook:

Trying to find a quick 5 minute video devotional to watch to jump start my day. Needs to be video so I can listen while helping with Chloe or I'll never get through reading it. But alas, alack. Just once I want to see a woman sharing a devotional video where there's a poopy baby in the background, sounds of a screaming child, and her sitting on her bed surrounded by piles of dirty laundry. Bonus points if she has old cups on her nightstand and a few fruit flies flying around the screen for good measure. I don't know if I can take any of the devos where there's a picture perfect room flooded with trinkets and frames from Hobby Lobby and the host has perfectly cut hair that doesn't move from the pound of hairspray. 
Ok. Rant over. Now whatcha got? Any good video devotional sites? Cause I got nothin' but all I know is I need Jesus and refill on the coffee.

So there it was. I laid it out. I needed real. I needed someone to relate to the messy.

As I was taking temps and changing diapers, replying to responses on my FB rant, and commiserating with other mamas about messy houses, I realized I wasn't sure if I'd done something on my morning checklist, so I quick google chatted my hubs to ask his opinion on something. Conversation as follows...


Yes. Truly. You see it, don't you? "Can you send me a pictures of the master bathroom..." {awesome grammar by the way}. In the middle of my muddled messy morning, he's asking for pictures of my bathroom. We rent from the church where my hubs works, and the secretary was requesting images of the bathroom so they can order new tile. Great reason. Bad timing. Here's what I sent back, after I laughed out loud and said, "You're kidding me, right?" {To which my husband responded, "Well she asked if she could just come over and look, and I said no."}


You'll notice my husband just didn't have words to respond with on that last one. And no, not a real Squatty Potty, just a five year old who refuses to put her stool back after she's used it to stand on and steal my jewelry. And yes, that's TP that made it 2 inches from the trash can. It compliments well the  TP in the other picture on the counter that made it 2 inches from actually going on the roll. 

Want to hear the punch line? Want to know something funny? This week's bible study challenge was to think on who God is and that we should rely on Him. What it looks like to rely on Him. Which was exactly what I tried to do this morning when I sat down at my IKEA desk next to my daughter's crib. And then proceeded to fumble through the pre-lunch hours. 

I think this happens so often with young moms, and others as well. We have these good intentions of spending time in the Word and with the Lord and then chaos ensues and we're left hours later in the aftermath of the day wondering how it passed so quickly without us taking much time to spend with Him. We give. To everyone. We answer the kids, answer the phone, answer the emails, answer the oven when it's beeping, answer the beeps when they're ringing off {in our house at least}. We answer the door in our sweats and unbrushed hair and unbrushed teeth to receive the package of daily injections for our daughter. I really wonder what FedEx Man thinks of stay at home moms, who answer the door often disheveled with bags under our eyes. That, my friends, is why they run back to their trucks. It's not because of some time schedule. It's because of us scaring them off. Try it next time. Try striking up a conversation with FedEx Man at your door. I guarantee he'll run off. {And I had to look up how to spell scaring or scarring. Typing scaring into Google results in scaring goats, which is actually a really funny thing to watch. You should try it sometime.} 

So here I am. Reflecting deeply, obviously, about my day and how in the midst of answering to everything, how do I rely on Him? Because as a mama, it's hard to sit still and focus for any amount of time. And all I can come up with is that I rely on Him because He is my only source of strength and support. At the end of the day, the coffee didn't truly fill me up. The chocolate didn't truly fill me up. The kids and husband, even with all their fun joy and laughter and moments do not fully fill me up. I need Jesus. I need the One who made me and knows me better than myself to fill me up. "He hems me in, behind and before," says Psalm 139. He knows me enough to know what I need. I'm preaching to the choir here when I say all this because I need reminded of this daily as well or I'll stray away. I need a tribe of women to text me and keep me grounded in the Word and in Him when I feel like I'm floating and drifting into the sea of overwhelminghood and the waves of the daily mundane. 

If you scroll back up, closing your eyes past the pictures of our master bathroom, and open them again on the image of my office, you'll see the image on the far right screen as that of the Sea of Galilee. I Googled that image specifically because my children didn't believe Jesus really walked on water or calmed the storm. They're in that phase of asking if actors and stories are really real. No, Tinkerbell is not real. Yes, the Wild Kratz brothers are real. No, not the cartoons of them, just the real people of them at the beginning and end of the show. Then I put that image up as my desktop wallpaper, because I need reminded too that Jesus is real. 

So yes, kids, Jesus is also real. He did calm the storm and walk on the water of that very sea. Because when His people called out to Him for help, He showed up. Regardless of the fact that the Miracle Man was just. trying. to. get. some. sleep. (can we all relate). He still woke up and showed up and calmed everything. When His buddies in the boat tried to save themselves before waking Him, it was to no avail, but when they called upon His name, He made the seas to still, the lightning to cease, and the thunder to stop roaring all because He is God. And lest we forget, there was indeed a storm first. It wasn't all just dribbles of rain. We're talking downpour. Illustration for life, perhaps? Just because they walked with Jesus doesn't mean they didn't have storms.  But they had the Calmer of the Storm with them. 

In response to my bible study question, I rely on Him because I'm broken and tired of relying on myself or others. I rely on Him because He shows up. When everything and everyone else lets me down, He shows up. If the number on the scale in that bathroom image lets me down, He shows up and reminds me that I am fearfully and wonderfully made. If I lose it with the kids, He reminds me to forgive myself and show more grace to my kiddos. If I have a crazy day, week, month or year to the tune of F*R*I*E*N*D*S, He shows up and reminds me that He is good, and that He works all things for the good of those who love Him. Because He is bigger than me. 

And in that truth is where I find rest. 



*Sea of Galilee image as desktop image credit: shalomholytours.com 







Saturday, August 20, 2016

Back to School




Back to school routines started tonight. After a couple weeks with a grandma filling the house with joy and loud, crazy bedtimes, there was instead a peace filled stillness that crept through our house around 7:30 PM as the wind-down began. Bubble baths, soaped up kids who used the entire bottle of body wash, squeaky clean bodies curled up beside us, my chin resting on the damp locks of a redhead who's about to turn five. Storytime, prayer time, then rest.

Well, before you think we're rockstar parents at this back to school routine, that's about the 3rd time all summer that this event occurred, and my guess is we'll keep it up for about 4.2 weeks then return to getting to bed too late and night time tantrums. On that note, there was one of those this evening as well.

Somewhere wedged between bath time and reading time I realized that this is our first ever actual back to school bedtime routine. Three years ago we had a not-quite four year old who I was teaching bits and pieces of letters and numbers to, a one year old just two weeks shy of turning 2, and was about fifteen days away from a positive pregnancy test. Two years ago we had decided to homeschool preschool due to our youngest's NICU stay and germs, and were kissing and crying our kids away as we drove the two hours back to the hospital where we'd hold and rock our sweet four month old to sleep the eve of her first heart surgery {that she wasn't expected to survive}. And last year we were once again living in tight quarters at the Ronald McDonald House of Kansas City, watching the days on the calendar play a game called wait out the virus and get to the next heart surgery before her shunt closed off. While other parents were dropping their kids off on their first day of Kindergarten, we were dropping ours off at the O.R.

So this is the first year, I guess, that we get to tackle this back to school routine thing. The first year that I get to purchase school supplies, bring them home, and disperse of them in the correct cubbies, nooks, and crannies of the homeschool room instead of shoving all the books plus two colored pencils and one broken pencil sharpener into the Thirty-One tote(s), haul it to the van, and try to figure out what subject isn't worth the weight in gold, or in carrying strength, once we arrive at our temporary second home. This is the first year that I get to have all three kiddos in the same house as we read aloud and sing songs, learn to write our full name and full sentences and full wean off the vent. Learn more about counting our ABC's and numbering our alphabet to twenty-six. We wrote out a schedule and are starting new routines.

Routine is a strong word in our household, but also a mysterious word. Routine means meds at 8am//9am//9:30am//2pm//3pm//4pm//8pm//9pm//12am. Routine means daily trach cares and physical therapy and cuddles. Routine means we all ate a breakfast//lunch//dinner without a minor {or major} medical issue. Routine means we're home and thriving.

But routine around here means it can be broken at anytime. Take the kids to the park? You bet. What? Chloe needs an emergency trach change? Sideline that park time, but I'll make it up to you with a movie tonight and popcorn. Help you clean your room like I promised? Well, we need to wait a bit until Daddy is home so that Mommy can keep helping Chloe in the front room. Date day Friday with the hubs all scheduled while the nurse watches Chloe and the kids watch the sitter. Scratch that, sitter sick, no back ups on short notice and nurse doesn't work the weekend so we'll reschedule for one, maybe two more weeks out due to appointments and therapies the following week. It's OK, that date day only took three weeks to plan out. Family vacation? HA! Oy. Not even gonna go there...

It's so weird, this juxtaposition of actually being home and having routines, yet at the same time needing to be so incredibly flexible. But in all honesty, our kids rock flexible. Then again, this life is all they've ever known since the ages of 3 and 1. They don't really understand that this many therapies and appointments and phone calls to the doctor and pieces of medical equipment aren't usually found in the common household. While most parents worry that they locked the cleaning supply cupboard, we try to hide the sharps container out of sight and reach.

I was standing over the kitchen counter last week was hovering over the steaming coffee pot last week (the one that I forgot to fill the water in before turning on), half awake after a long night that could rival a newborn on day four at home when that surreal thought just washed over me for the umpteenth time.

I didn't sign up for this.
I didn't see this coming.
I didn't know this was in the realm of possibilities when I accepted my college diploma and thought about where I want to be in ten years life plan. This sort of stuff happened to other people. Not me.  Meet handsome man: CHECK. Serve the Lord and hope our household honors Him: CHECK. Have adventures with handsome man: CHECK. Have this type of adventure where we allow God to walk deeper into our lives, ironically the life He is allowing us to breathe in each day in the first place, and let Him interrupt it for His glory and kingdom and let Him call the shots: Whoa. Check, I guess? Yes. Check. YES. CHECK.

We're there now. We get it now, three years into this path, this unexpected twist in the gravel road of our almost-perfect little American life, the reminder of whose life this really is, and how much more there is to this life if we let God direct it. We've learned to trust God that whatever this is He's walking us into, that He will see us through it. Daily. Each moment. The scary chest compression//purple baby moments. The celebration of the end of summer reading moments. The weaning off the vent moments. The joy in seeing my child read moments.  The learning to have a flexible routine. And when we're weary, we go back to Him. Again and again to fill our cups. Because we get drained often on this adventure. But He continues to fill us up. And it's worth it.

Taste and see that He is good, and that He works all things for the good of those who love Him.

And ask yourself if you are willing to let God interrupt your routine//life for His glory.

{And if you're already on one of His adventures, then we pray for endurance and strength balanced with the utmost of joy.}