As my husband and I were putting our three boys to bed last night, our oldest Penn, who just finished kindergarten yesterday, was pretty upset that school was over. I walked him into the other room and set him up with his journal, and told him to talk to God about it. His prayer was so simple, but so profound.
The faith of a child stops me in my tracks every time, and gets my head out of the clouds on all the things that keeps me from being present.
I asked him if he felt better as he blew his nose and wiped his tears getting back into bed, and he said a little. I reminded him that he’s still going to be sad about the year being over, but that now it’s not a crippling kind of sadness, now that he took it to the Lord’s feet. I prayed for him, asking God that as the sadness creeps in, to help him transform the sadness to gratitude. Penn interrupted me to ask me what that meant. I told him that the reason he is sad is because he had an amazing year with amazing friends and an amazing teacher…and that that is something to be thankful for. And we are called to be thankful always: “Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus” (1 Thessalonians 5:16-18). He went right to sleep after this.
I left his room being reminded, amidst all the thoughts swirling in my head of what we were going to do this summer, of what my priority should be–that there is absolutely nothing more important than prioritizing my closeness with the Lord. That is the single best thing I can do. The single best thing for me and for my family.
The lyrics that just played (Lauren Daigle, “Thank God I do”) resonate:
There’s nothin’ missing when You are by my side.
A friend of mine who often writes me when she comes across Scripture about water, wrote me this as all else above was taking place (I love when it all comes together in ways that make it clear the Lord is speaking to me):
“We find refuge in the shadow of your wings. We feast on the abundance of your house; you give us drink from the river of delights. For with you is the fountain of life; and in your light we see light” (Psalm 36).
When Christ is first, all else falls into place. May we prioritize Him first and foremost as we set out to pinpoint all else that we find worthy of fitting in this summer.
Music has a way of naming our feelings and putting punctuation to it.
Listening to this song, which also fits quite perfectly within the back story of how we got to The Name River (and is, in fact, on the “River-Inspired playlist” created during this time), added an exclamation point to the transformation that started playing out the night prior. I was having a hard day and I started spiraling a bit mentally; can anyone relate? I was starting to find fault with everyone around me and I am admittedly not one who can just put on a face and power through….I mean, I can get mean, you guys.
Well we all have our strengths and we all have our weaknesses–we have our particular default settings that get flipped on when we get overwhelmed. And it’s very important for us to pinpoint what these are so that once they start sneaking up and taking root, we can pull those suckers right out of the ground! You have no home here!
I have learned that the real power comes not in stopping weaknesses dead in their tracks alone. That’s a significant start! But science!! Taking y’all back to science class, if an object is gaining momentum rolling down a hill, you can try to stop it which is a big effort for just a clumsy halt, OR you can redirect it to a different path, and it will keep going with the same strong speed, but now a strong speed in the right direction.
So you can see where I’m going with this in that you can try to will yourself to “just stop” your bad attitude OR you can really emphasize this gust of negativity, not water it down at all, but really let it out and name these huge ugly feelings! And ask God to TRANSFORM that big energy being poured into a well of crap into a big energy being poured into a well of renewal! That’s where the power of the Gospel is; we need to admit our sinfulness in a big way! We need to see Jesus’s death on the cross FOR these mental ruts we find ourselves in as MIGHTY and NECESSARY. It is BEAUTIFUL to know there is a way out of misery that doesn’t ever go away–not to say things will get better (that’s not the “out”), but being freed from this feeling of being paralyzed by bad circumstances and letting them get us so off course –that is the “out” I am referring to. His grace is everlasting; we won’t run out of chances to get His grace. And you’d think He’d tire of us failing over and over again, but He requires it. It’s foolish to think we WON’T need it over and over our whole life–it’s a vital piece of the puzzle of the Gospel that we will never get it right–that is the WHOLE point.
“Show Them Jesus” by Jack Klumpenhower is a book introduced by one of my best friends and it has quite literally changed my life, so expect it to be quoted heavily in my blog! The author was speaking about the youth we are leading, and how they sense the difference between a teacher with integrity and a fake, how there is nothing they demand more than integrity. Read more of his words below:
“They want–and need–for us to be practicing believers in everyday life. They want us to be like Paul, who said, ‘Our gospel came to you not only in word, but also in power and in the Holy Spirit and with full conviction. You know what kind of men we proved to be among you for your sake’ (1 Thessalonians 1:5).
To teach the good news in that way is a daunting demand.. I mess it up regularly. In spite of our sinful blunders, though, we should not despair. The good news gives us tremendous hope. We can repent–daily, hourly, constantly. We can treasure God’s forgiveness over and over. We can believe that he counts us as saints and loves us as sons, and then we can believe bigger. We can be revived.
Sure, we catch ourselves serving idols and putting our fears ahead of God’s promises. But growth as a Christian is not about getting to a point where we stop sinning so much and do better on our own. It’s more about learning to depend on Jesus constantly, increasing in faith, and trusting him in our weakness. We need to teach the good news not just to our students but first to our own hearts. For me, this has to happen again and again. Every day.”
WOO-WHEE, we can find relief and freedom in this process of bringing our mess to God. Riley Clemmons has a song called “Broken Prayers” about this concept of messy prayer that is freeing, check out the lyrics HERE.
I ended that honest and raw prayer the other night with: “I can’t You must. I’m yours. Show me the way”…..that prayer from the film “Romero” that Nate brought into our initial prayers throughout the River trial is extremely fitting in this context of pouring our your heart out to God, asking Him to do what we know He can, what we know He wants to do…..forgive us, strengthen us, transform us. Let Him.
Now we are in a season that feels a bit like the aftermath of the storms, kind of like: “wait, what just happened?” Like we are learning and re-learning River’s diagnoses or lack thereof, sometimes it feels like for the first time. The doctors have been telling us all along that we won’t know the full scope of how his list of things that put him at risk cognitively will turn out to impact him at any certain point, but rather, “we just have to be keeping an eye on his milestones.” Okay, well he was behind on crawling, walking, and now talking….but then again, he did have three brain surgeries in one year, one of which he was actually required to hold off on all activity working towards hitting milestones.
So it started feeling blurry, trying to decipher what is leading to what, what is a result of what, where we should expect him to be (and where we shouldn’t!), etc. The pressure I was starting to feel trying to decipher all of this myself……I began recognizing I was not equipped to. There is the kind of stress that urges just the go-to mantras or perspective refreshers or attitude adjustments or practices–the things you lean on in order to just keep trekking on. Then there is the kind of stress that you gotta pay attention to–the kind of stress that signifies that moves need to be made. I realized I needed more eyes on him, more people checking in on him, more support! I needed to know we are doing all we can to support him. So I made the necessary calls and appointments and then breathed a sigh of relief. It’s all about doing all we can do and leaving the rest to God!
I consider most of my posts about River to be stories. Testimonies. Since the moment we found out what we were up against at our anatomy scan ultrasound on March 13th, 2020, our life significantly changed, and there was a prolonged period of just such high intensity battle after battle, repeatedly trying to make sense of what was happening and what the Lord’s plan is for us, how we are to navigate these incredibly tumultuous waters.
I’m not going to get into all the details because we are in a different season now and I am not recounting dramatic stories of being in and out of the hospital…..we are looking at our son and discovering who he is turning out to be in all ways. We are learning River, loving River, completely in awe of River. And that will be a lifelong process, just like it is with any of our children. Time will tell what will or will not be affected by the long medical history section we will be filling out in all future forms. And no matter what that ends up looking like, we are here for it, River.
Part Two
I’m still astounded, daily, at where we are when we think of 2021 having three brain surgeries and new diagnoses and big fears both immediate and future. Aren’t you?? You’d think I’d have a smile plastered on my face every minute of the day. But that’s not how life works, right? Aren’t we all guilty of just moving onto the next worry when one is resolved? Feeling burdened by our long list of items good and bad that need our attention and care. BURDENED BY BOTH THE GOOD AND THE BAD I said! We have a way of making even the good things bad when it becomes added to a list of responsibilities. That list of responsibilities is what takes us out of the present, out of a spirit of gratitude. We have a way of sucking life out of life. We need to be jolted back down to the ground to smell the flowers before us sometimes yo! Find it! Find who and what brings you back down to the flowers! To those joyful steps River takes, each and every one of them!
If you can’t NOT be a list person, write it down on your list: “take time and energy to smell the flowers”!!!
Recently my good friend who spent night in the ER with her child wrote to me, essentially seeing the encouragement and compliments and support she continually gives me in a new light. She got four hours of sleep and then went to work, commenting that “the lack of sleep actually helps her care less–it’s a positive numbing effect–the silver lining.” I related so hard to this! I replied:
“My mom and sis laugh that the day following a night in the hospital is when I say yes to all life-giving, joy-producing aspects of life! The morning following the last time I was in the ER overnight, I took my sister’s kids for the day in addition to my own and we played, hiked, explored, enjoyed the sunshine. Got my favorite pic of them to date…total album cover moment.”
There is such a freedom that comes along with an event or mind-shifting experience that convinces you to say no to all mundane tasks of life and even the structure of TIME. When your head and energy is shifted from the clouds back down to the flowers at your feet, when you’re dialed in to the people and experiences around you. The photo I took of the Pittsburgh cousin squad represents a time that I had no idea what time it was and did not care. That is a GIFT. If there isn’t an event that brings this along, maybe we can all do a better job at bringing it along ourselves….find it! Seek it! Seek and ye shall find!
I recently looked back to the story of Mary and Martha, Luke 10: 38-42. Hooooowee, I have thoughts on that one, maybe I’ll write a post about it!
Until then……THANK YOU FOR FOLLOWING ALONG. THANK YOU FOR CARING. THANK YOU FOR ASKING. THANK YOU FOR ENCOURAGING AND SUPPORTING AND PRAYING. THANK YOU FOR YOUR HEART FOR RIVER AND OUR FAMILY.
Part Three
I started thinking about River, and how he has no words still at over 2 years old, and yet he has this joy that no one and nothing can touch. His cognitive ability FAR outweighs what he is able to communicate and there are no doubt moments where he looks at me in exasperation, wanting so badly to be heard and understood. And I have fortunately really been growing in my ability to still pinpoint what he wants, but I don’t get it right 100% of the time. But again, NOTHING steals his joy. Sometimes I will guess what he wants and he laughs–sometimes his laugh is a laugh that means “yes” and other times his laugh means “not even close, Mom”–yet he’s LAUGHING either way!
Just made me think of how I am choosing to use MY words that I am privileged to have, which are fruits of my thoughts/mindset/perspective.
I was reminded of the song by Maverick City called “Breathe” and the “it” below refers to our breath:
March 13th, 2022. Two-year anniversary of anatomy scan that completely changed life as we knew it then.
My sister wrote me last night about it—requesting that we mark it with prayer/worship alongside one another, rejoicing at the growth and richness we’ve all experienced as a result of what at the time knocked the wind out of us all.
So I decided to write up and share a brief reflection (below) and a few verses that have served as an anchor of sorts, along with a song I thought we could allow to marinate our souls as we mark the significance of this day together (“Goodness of God” –I chose the CeCe Winans version)
“Today marks two years since our life-altering anatomy scan, March 13th, 2020:
Looking back at my prayer journal from around that time, my good friend had written me: “I don’t know if you’re one to journal or write down any of these prayers or emotions but I think it would be cool to look back and see the Lord’s hand holding you up through all of this and see where his faithfulness has shown.”
To which I replied, “Yes I was just thinking tonight I should write down all the extremely difficult fears and feelings I’m having as a way to physically hand them to the Lord and pray for more trust. Cuz I’m honestly just worried I won’t have joy again. I know I will. But today it’s HEAVY.”
And she said to me; “Girl he promises it. I know it absolutely doesn’t feel like it now. Psalm 30–read that one.”
I did have that time before the Lord that night, where Nate and I were down on our knees crying–weeping–to the Lord. I wrote down my fears and darkest thoughts and held them up to the Lord. It was pivotal.
I sent a video of Tauren Wells performing a song about hills and the valleys the very next morning, how God is a God of all of them and that we are not alone, to my mom and sister; my mom sobbed, and this was after one of our family’s closest friends had texted her Isaiah 45:1-3. “I will go before you and will level the mountains ; I will break down gates of bronze and cut through bars of iron. I will give you the treasures of darkness, riches stored in secret places, so that you may know that I am the LORD, the God of Israel, who summons you by name.”
To which my sister responded with the incredibly timely daily scripture in her devotional that was along the very same lines for that day: Jeremiah 33:3 “Call to me and I will answer you and tell you great and unsearchable things you do not know.”
Now here we are exactly two years later, and I’m looking back at these incredibly dark fears of the unknown I had written down–understanding that that’s fully how I felt at the time, but it feels so far away and unrelatable right now; oh, how reminiscent of Psalm 30!
How powerful it is to follow these seasons of being down on our knees weeping before the Lord with being down on our knees rejoicing at the way He has moved and continues to move, even when we can’t see it or feel it. To quote my mother-in-law: “I am reminded of the biblical concept of setting up “stones of remembrance” along the journey, so that we never forget where we have come from and so that we remember God’s mercy along the way.”
Thank you for joining with me in remembering this journey and all its hills and valleys, and for being there throughout it all, taking these praises and requests to the Lord on our behalf. May we set up stones of remembrance along our own journeys now and forevermore.”
I really have to tell the story this way, knowing not everyone will want to read long posts, but knowing enough of you will, because a summary won’t do this wild journey justice.
I’ll start with this picture that I took in a dark surgery waiting room where there was no other person, not even at the check-in desk–no idea why. We had been here before (third time this year), sitting in the same exact chairs every time, but this time it felt different, because no one was certain what exactly was going on; they just knew they had to cut open his head to find out. The neurosurgeon prepared us for several different scenarios.
As I sat there waiting, I snapped a photo of the sky, because its story resonated with me. The clouds here are dark, no doubt, but look at that light shining behind it, so so brightly. I knew we’d find that light in the darkness.
So let me back up. If you would have seen me a week ago, you’d think everything was peachy keen—I would have agreed! This has all been very very recent that our antennas have been up about there being something wrong.
Just last Thursday, River’s nap was longer than usual. Looking back, that was the first sign of a change in him, but it was really just a series of small things: yawning at odd times, fussing more than usual, waking up unhappy, wanting to be held. But that can be anything, right? Mom over everyone phase of development, teething pains, standard frustration before milestones the way he was before crawling, fighting something perhaps. But at a certain point, we started running out of low-hanging fruit, and that point was Saturday night; like this might be something different. It was hard staying present.
Got the kids down to bed and Nate and I sat down to discuss, where exactly are we right now on all of this? We are new to this journey of having a child with hydrocephalus but I can already tell you the hardest part is straddling this line of just completely normal and chaotic days in a family of five vs. code red serious situations. I told Nate if and when we are in battle mode again, we will be okay…it’s just being hit on a random day in the life like wait, are we going into battle? Hits like a ton of bricks, not to mention how extremely non-formulaic and non-straightforward hydrocephalus is. A shunt is not a permanent solution–it can malfunction at any moment (clog in tube, tube breaking, etc.). It’s this anticipation of battle mode that is gut-wrenching. So we just had to kind of reorient ourselves, like okay, we had a chill few months and now he’s off and really this is what we are gonna have with a kid with hydocephalus….there will be these up and down periods. So we decided, this all might just be normal challenges of a 15-month-old, but let’s just write a message in the portal with our doctors checking in about what we are seeing and go to bed early in case it’s a bad night.
And a bad night it was!! Our typically amazing sleeper was waking every couple hours crying. I woke up after being asleep for only an hour, before his crying episodes even started, feeling completely different from how we told ourselves to feel before bed…playing back the times my head was cocked to the side and thinking yeah, this is crossing over into something else. We are in battle mode. Was just hit with this stomach-churning worry that he is actually suffering now and also this guilt at my frustration with him lately that he’s being so difficult. I immediately recognized I can’t feel guilty and that’s not from the Lord. And that we are doing literally all we can and taking all the steps we feel we need to–not wanting to be too paranoid or overly sensitive but not wanting to miss something potentially big, either. Just that feeling, though, of like wow, he might really be feeling bad and he’s trying to express it.
And then the crying started and battle mode was emphasized. We prayed together, saying we are feeling like we are under attack. We heard an amazing sermon at our church on the devil and how he works just the week prior (this is how God works!!) and we were immediately bolstered by our recollection of it and grasping the truths we knew we needed! ***Seriously ask me for this sermon if you want to hear it—you could have heard a pin drop–will gladly pass on*** We knew Satan had no authority here, and that God had it all. I had texted my mom and sister right then and there and said “I’m wide awake feeling the weight but also calm in spirit and just breathing.” And that was just what it was…..because I had crossed over into battle mode. Suited up with the full armor of God (Ephesians 6:10-18). Past the anticipation of it and just IN IT.
River woke pretty inconsolable with a fever, and I decided it would be smart to call the neurosurgery department with my updated tidbit since writing to them the night prior. Thankfully the doctor on call was someone who is more of a “better safe than sorry” personality, which I wouldn’t say has been my experience thus far with neurosurgery. I basically was abandoning the checklist I can say in my sleep of when we can be certain it’s a shunt malfunction, in favor of simply a mother’s intuition. To the ER we were headed.
To be continued!!!
Part Two
The first couple hours at Children’s went just as I imagined it would….no one seemed to think it was his shunt that was at the root of the problems. They checked his eyes with a flashlight, did some shimmies and shakes to check his eye movement range, etc, and all seemed fine. The big question mark was, why the fever, especially with no other cold symptoms present. The thought was, let’s run all the tests and if we ultimately come up with nothing, we can just assume it’s a little viral cold he’s fighting, and we can all go about our day, and that was the most likely (that it’s just a little virus he’s fighting).
The first step was to check for UTI (you may recall he is at higher risk for this having a severe kidney reflux) via a catheter. The second was to take some blood samples to check for infection in blood….apparently he is at higher risk for infection due to having a foreign object in his body (the shunt). All was clear; they of course had to do the Covid swab as well as testing for RSV and flu. So far, nothing was showing up. Next step was to check out the shunt via MRI and x-ray.. MRI checks the ventricles for fluid levels, and x-ray checks placement of tubing. At this point, we thought it was all going to just be checked boxes to do all these tests, we had suspected the shunt checks would be inevitable going into today…..but NO ONE thought it would turn out to be a shunt malfunction (ie brain surgery again).
Now let me pause. These are all the facts, but you can imagine how it all was going down….every mother knows the wait involved with medical stuff! Being in a little hospital room for hours on end with little River who we already knew wasn’t feeling well for whatever reason, had a fever, was starving (wouldn’t let him eat in case he needed to be put under for surgery), and was being picked and prodded and tested without end. If you would have told me it was about to get way worse, I wouldn’t have believed you! Wouldn’t have wanted to, anyway.
Imagine my surprise when the PA came in to share that the MRI did show expanded ventricles–fluid building again. So much of life is expectations, right? And we were NOT expecting that we ACTUALLY had a shunt revision on the table; we were just doing our due diligence to be assured that’s not the case so we can sleep at night!
Then she said it’s possible that the pressure setting just needs to be adjusted on his shunt, that perhaps it needs to drain at a higher pace (which would be a very simple fix – they can adjust it externally with a magnetic tool). That was both encouraging and discouraging, because one of my biggest hangups with this whole shunt deal is that I feel like the neurosurgery department has painted a clear picture of the possible signs of a shunt revision (well and that is another story now) but I am still totally lost on whether or not there can be problems of lesser urgency such as the pressure being off. So I was hoping it was just a reprogramming that was the next step OBVIOUSLY but that would bring with it a whole host of other questions and concerns for me.
What came next was probably the worst thing I’ve witnessed thus far with River. To check if the problem was simply a pressure tweak vs. a shunt malfunction, they did a “shunt tap.” Think spinal tap (which River has done twice now!), which is already horrible, and this is worse. They draped a sheet over River’s head with a cutout hole on top, which had him squirming and crying already, and literally punctured the shunt to obtain CSF fluid–WHILE HE WAS AWAKE. Blood everywhere. And they had to do it two times in two separate places because they were getting nothing with the first puncture, which unfortunately spoke volumes, that his shunt was not actually moving fluid through the tube! Here I was with River on my lap, my neck cranked all the way to the side facing away from him because there was risk of infection from puncturing his head right then and there with no prior preparation. Nate’s vantage point in keeping his head still was much worse.
So that confirmed it: we were heading into surgery.
We sat there waiting for the OR to be ready to take us, and it was all hitting hard what had taken place–how much had changed from what we had thought originally, so quickly. It was now 6 hours of being there and still couldn’t feed him since he was about to be sedated. So much waiting and so much sadness. Nate and I were on opposite sides of the bed looking down at his fearful welled-up eyes, giving him our comforting presence and undying love, which is all we could offer.
I’ll forever tear up at the video I took of Nate singing “True Colors” to his scared little face. You can actually see River starting to tremble at all the lyrics you’d swear he could understand (“sad eyes”, “discouraged”, “unhappy”), and then you just see his fear being swept up into trust with Nate bringing him back in with his loving eyes and confident demeanor, singing lyrics of River’s true colors shining through all the darkness. And they sure did. It was breathtakingly beautiful. Reminding me now of Peter walking out on the water with Jesus, looking at the winds and starting to sink, but the Lord catching him asking him why he doubted. We are Jesus in this analogy I suppose….making me that much more grateful for a REAL Jesus we can look to who actually has all the power and all the perfection, holding all the answers and all the knowledge.
When it was time for us to make our way to the operation floor, we had to wait an extra half hour there because no one informed us we weren’t supposed to give him water. I had words about that but moved on and focused on River; that’s where my energy belonged. Here is a pic of him right before he got wheeled away. After being wheeled away, the neurosurgeon talked with us about all the different scenarios he could see taking place, which I will come back to at next and final update. Summary: they were about to cut open his head, that was certain, but nothing else was. It could be a one night stay or a two-week stay. We said our farewells to the doctor, putting our trust in his hands, and went to get dinner.
Nate snapped a photo of me in the cafeteria as we waited for surgery to be open. He sent it to my family with this text:
“Sitting in the cafe with my bride now. So grateful for so many things right now, including:
1. My wife’s foresight to call neurosurg this AM
2. Kris and Lou for jumping into action and picking up/watching the boys (and tonight overnight)
3. My parents and sister’s family for hanging with the boys during the Steelers game
4. The Lacroixs for letting my boys join them for trick or treating
5. Our entire familial support network
6. Having world class pediatric healthcare in our backyard
7. Knowing that God is way bigger than me and is looking out for River, even when things seem weird from my vantage point.
Love you all!”
Always. Be. Grateful. You’ll never regret being grateful.
To be continued…..
Part Three
Thank you for hanging with me!
So many tears shed at last update I was told—happy to report the story has a happy ending (at least to this chapter)!
So, where we left off was Nate and me in the cafeteria and River back in the OR. We made our way back to the dark empty waiting room to wait for the report from the doctor about what it is they found in surgery.
There were two possible scenarios of what the neurosurgeon assumed he would find:
1) There is indeed a problem (and simple fix) with the shunt, which was likely since there was not much CSF available to be extracted from the shunt tap
2) The tube (part of shunt) is working just fine, in which case they’d pull the tube out and leave it out for two weeks, because this means the blockage is actually stemming from a cyst in the belly (that they tried looking for in ultrasound before surgery but too hard to tell).
In this scenario, they’d give him antibiotics for two weeks to clear the cyst, and then reinsert the tube. This would also mean the tube would be draining EXTERNALLY that whole two weeks (and we’d be in hospital the whole time). And then they’d have to go BACK in after two weeks to re-route the tube back to his belly.
The bloodwork to check for infection that we did in the first few hours of being there did not appear to indicate infection, but they needed to go in to see which of these two scenarios were taking place, and even if first case was reality (shunt not working), the plan was to extract more CSF during operation, place it in a culture, and let it develop for 10 days. They were set on giving it a full 10 days before ruling out infection. If something were to develop on culture (indicating infection), even if we had already been discharged, we’d need to go through all that is laid out in scenario 2–coming back in to hospital for the two-week antibiotic cycle with external shunt and then another surgery to put shunt back in correctly.
Never thought I’d be hoping for a shunt malfunction/revision but here we are! But either way, I was just relieved to know that in either case, there was a plan!
We heard a door open and saw the shadow of our doctor–the shadow of the most important person in the world in that moment….had his form memorized in my head in this critical moment.
He told us everything went well, that it was indeed a clog in the shunt which prevented it from draining properly (scar tissue or other bio matter…*barf*), that they replaced the valve and it’s now working properly. He told us as long as the culture did not develop anything within the next 10 days, we are good to go, and in the meantime, we can leave tomorrow if he is recovering well.
And my oh my, does that boy recover well. He bounces back in ways I cannot fathom. It was the very next morning in that hospital room that he was already the River we know and adore with his smiles and sounds and mannerisms that are unique to him. I took a video of him to send to my family, knowing how mind-blowing it would be. It truly is!!!! I’ll never forget this one picture I took of him joyfully playing with a big blue ball at the base of our driveway, taken the very hour we were home the morning after surgery, because it has come to represent his incredible resilience and unstoppable joy. I always say River is made of stuff straight from the heavens. God has blessed us with a boy who doesn’t wear his hard experiences–you would have no idea. He just lights up a room with joy.
An acquaintance from high school/now friend since the River chapter (River has gathered oh so many of us together, in oh so many ways), perceptively pinpointed just what it is:
“I cannot get over everything he has been through and it makes me both sad and angry to think about sometimes but I know you all and River stay optimistic and he keeps smiling so I know we all need to keep smiling for him.”
That is IT right there.
Part Four
Made it past the ten-day mark without culture of CSF growing anything! No additional surgeries or return to Children’s needed; he’s good! New shunt who dis!!
Went to post-op appt with neurosurgery this week with a calmer spirit than usual…no list of questions, no leaving with a fuzzy brain on what exactly might go down and when—it just felt like all the stars aligned for me to take a deep breath and trust I’m getting good care more than I’ve been able to fully do before.
It’s incredible to me how much good can come from bad, the silver linings that really shine. Getting that first shunt revision that we feared so much over with has turned out to feel like a relief in many ways.
Just feeling like the Lord is banging me over the head in different ways many times over: ONE DAY AT A TIME and that EACH DAY HAS ENOUGH TROUBLE OF ITS OWN. God has a way of taking our prayers that we stumble through, not really knowing what to ask or how to ask it, how to feel….he takes them and He HONORS them and He molds them into something new completely that we couldn’t have thought up ourselves and He delivers them to us in this package that we look at wide-eyed, noticing the packaging reveals a different shape than what we had known before. But nonetheless we take it in and hold it in our hands and as we pull back the layers of wrapping and start really seeing what we are handed, we start to be able to accept and sometimes even understand and appreciate, even if/when it’s hard. Because we know we wouldn’t have it any other way than to hand the keys of our lives to the Creator of life and all things good. It is I who needs to adjust my perspective, it is I who needs to adapt and learn and grow, not God. Blessed to be reminded of this over and over again through the hard times.
Calling all my prayer warriors…..something is wrong and as a shunt patient who also has a severe kidney reflux, we have to do all the checks.
As I bury my face in all the sheets trying to comfort him through these tests and scans, there is that strong children’s hospital smell that I have come to know. It brings back feelings of fear and sadness but it also brings back feelings of being met and cared for by our God. A peace that transcends all understanding. And that is the bigger more overwhelming sensation right now.
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Home sweet home. 103 fever and inconsolability pointed to ear infection and really feeling and responding to Mom’s angst this time—not another surgery (should it have been tube malfunction) or UTI leading to kidney damage in his case with kidney reflux. Huge sigh of relief and a little bit of embarrassment.
This week is River’s last post-op appointment. I have so many questions that I am sure won’t be answered fully, because every kid is different and so is every kid’s journey with hydrocephalus. I’ve heard more than I was prepared to hear in seeking experience of others dealing with shunts and I felt like Peter walking out on the water, looking at the waves and starting to sink. River is growing rapidly and changing and becoming more opinionated and finally feeling good enough to want to do more and gain back his strength, so there is more crying and frustration involved. Living in the grey area of not knowing what is what, and the PA’s words “it’ll be tricky with River since he was asymptomatic with hydrocephalus building up” has me on edge sometimes.
There was a night a few weeks ago where a series of situations had me up at night literally shaking with fear and worry, Nate pulled me in closer to him trying to get my teeth to stop audibly chattering. But what I did right then at 2 am was that I journaled it out in prayer to God and He met me like He always does and He calmed my nerves and gave me new perspectives to guide me. “Re-orienting” is what God has been teaching me to do on an ongoing basis: essentially figuring out today, that day only, what my perspective needs to be, what I need to remind myself of, etc. My mom always says, “Just do the next thing, the right thing”—it’s been our family’s mantra for years (before Frozen 2 stole it).
My parents are on a fishing trip, just the two of them. My mom wrote last night, “Remember I said Louie taught me how to hold a fish today? You have to hold it with open hands. Then it relaxes.” I did not realize she was making an analogy to life when I wrote back, “interesting!! I’d be really gripping that sonofagun!” Ironic that that’s also what I feel I’ve been doing in life! Forgetting that God is painting a story here and I must loosen my grip on the details and the worries and instead hold onto today’s joy, today’s victory, today’s promise from God that He is at work and He holds the future and He holds all victory, eternally. I would have been paralyzed from fear had I let fear dictate my steps back when we first got news of River’s challenges. And you all know what an incredible story it has turned out to be.
And the truth is, we are all living in the grey area!! Every single one of us. So let’s make the daily choice to loosen our grip on this life’s circumstances and fears and instead hold them with open hands. P.s. Please show up for me like this when we actually have a code red event!!! I can’t tell you enough how much it means to me.
Friends, once again, I am humbled at the outpouring of love and care and prayer for our River and for us.
For those of you who missed initial post and follow up comment, River had an MRI this morning for (what we were hoping would be) the last time, putting a period at the end of all things related to the neural tube defect that was operated on in January. We needed an MRI result “that demonstrates the absence of hydrocephalus, encephalocele, pseudomeningocele, or subdural collection in the postoperative period.”
Our telemed follow-up appointment was scheduled for tomorrow at 9 am. As I was pulling into the driveway, I saw an alert that River had a new test result in his chart…..I was unsure of all that I was reading but I can tell you it did not look good.
Now the neurosurgeon wants to see us in person and specifically asked to see River, too (as opposed to telemed that was scheduled). So now we have that appointment at 10:30 am tomorrow.
Oh what to even say other than if God is for me, who can be against me? I’ve said it before and I’ll say it again:
Who will stand against the Lord? No one can No one will Who will stand against the king? No one can No one will
To think God cares about this boy more than I do and that he handpicked me to carry whatever burdens and blessings come with him, that’s all I need to know. I’m here for it.
Please keep the prayers ascending and ask His will be done with my child!
Part Two: Another Brain Surgery Scheduled
Here is our boy today [picture of River smiling], after an excruciating morning at the hospital after long waits and no lunch and three attempts at getting his blood for next week’s surprise surgery and a long day yesterday of being bloated and gassy after sedation, following fasting and air being pushed down into his stomach by way of a breathing tube he needed when losing oxygen. He never. Stops. Smiling.
So yeah: River now has another surgery scheduled for next Friday, June 11th. The last MRI was supposed to be just a formality, as the window of greatest risk for developing hydrocephalus had passed and we were told we were basically in the clear, didn’t even need to do the checks at home anymore (measuring head circumference). All of us including neurosurgeon assumed we were in the clear. As it turns out, he has in fact developed hydrocephalus within the last month—3-5 months after greatest risk period (which is the six weeks following surgery) and he will need a permanent shunt put in….essentially a drainage system moving fluid from brain.
Thankfully, we caught it soon enough that the hydrocephalus was not physically making him sick yet, nor did it have a chance to impact him cognitively.
Also noted in the MRI was a part of his brain (cerebellum – relating to motor function) that doesn’t look quite right…it did not before surgery, either, but we hoped it would form more properly post surgery. As that is not the case, we will be beginning some PT/OT to try to help him with motor skill development.
There was also something noted about one side of his brain not properly sending signals to the other side of his brain….but it is believed that that will sort itself out once the extra fluid is gone.
As you can see, I am lacking a clear and detailed picture of what exactly is happening, which has not typically been the case—-and there is a long list of reasons why that is. We are all doing well despite how dramatically this all changed, but I also don’t have anything poetic to say right now. The fact that I’m not doing worse is God’s hand in my life. I look forward to being in a place where I can share just how much and how specifically I am seeing His hand in all this, despite how unfortunate it may appear right now. God is so good.
I love you all and appreciate the ongoing support more than I can say.
Part Three: Day of Surgery
SURGERY TODAY! Our boy is getting a shunt put in to drain fluid out of brain for the rest of his life.
A close friend of our family’s wrote this to me:
“I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.” Isaiah 42:16
Blind, not known, unfamiliar, darkness, rough….yes I would use all of these words to describe the now but there is LEADING and LIGHT involved and the good Lord has us!!!! Please lift us up for leading and light, team River!!
Part Four: Surgery Complete and Successful
When Nate and I were waiting for River to get out of surgery, Penn asked my mother-in-law to listen to “Helpless” from Hamilton. She asked him if he knew what the song was about: that sometimes we love someone so much we feel helpless. He said “that’s a perfect song for River!”
Sure is, son. We are helplessly in love with our warrior and we are all heading home from the hospital to all be together.And that is another wrap!!!! Brain surgery #2 complete and successful, all thanks and glory to God for His healing and miraculous hand in River’s body and spirit once again, comfort and strength for Nate and me, and an unfathomable amount of support and encouragement pouring in, lifting us up. A symphony of prayers bringing us peace like a river.
Well, friends and family, last Friday the 19th, we closed a significant chapter in our lives. River’s six week-recovery post-surgery is over and there are no longer any concerns regarding brain fluid leaking, pseudo meningoceles forming, or infections developing. We met with his neurosurgeon and she wants to do one final MRI to check for hydrocephalus (the fluid buildup he was at risk of since birth due to presence of meningocele) in a few months, but she said if he didn’t develop it throughout these past six weeks of recovery, we are likely in the clear….we don’t even have to check his head circumference weekly anymore. If/when this last MRI is clear, we are done with neurosurgery completely.
It’s hard to believe and I am having trouble even finding words for what this signifies, how huge this is. In the appointment with the neurosurgeon, I kept digging for more things to be concerned about but coming up with nothing. The doctor even joked, “it’s just brain surgery.” Like, exactly!! It makes no sense! And how has it become this simple after how complex and uncertain and scary it was up to this point?
I don’t understand how God works and why things happen the way they do. Why He answers some prayer requests and not others. Why some people suffer repeatedly and why some seem to have the blessings just flowing. It’s not like I believe the more faith you have, the better your circumstances will be. In fact, if you were to read my written out prayers in anticipation of all the high-stakes tests we had, my prayers focused just as much on preparing me for hard news as it did on asking for good news. For none of us know how it will all go down when we are in a storm (or ever, for that matter), let alone why it does. What I do know is that I learned a lot about myself and my prayer process along this journey. Prayer can be challenging, can’t it? But I’ve had to rely on prayer so much throughout this past year and doing so has shown me and taught me more than I ever thought possible and it has forever changed me.
For those who are interested, here is what I learned about my process:
Be BOLD in what you ask the Lord. How much more will you be able to accept the specifics of what you are handed in life if you KNOW that you LEFT THE SPECIFICS AT HIS FEET. And then…..LEAVE THEM THERE. Leave the specifics to Him. Don’t fret over them. Do your part in being responsible of course…..you have to study for the test, not just pray for success on the test. But I recently read: “There isn’t enough room in your mind for both worry and faith. You must choose which one will live there.” Choose faith! Bring up every detail to the Lord, don’t just pray generally for help and protection. But then let it go!! Move on with your day using space in your brain that you just purged at the Lord’s feet to be a light to others and love on others. Don’t let your mind be used for worry. The people you love deserve all of you. And God will supply you with His fruits to even be able to love others when you give and leave your all with Him first and foremost. Don’t doubt what God can and will do when you stop trying to be the one to handle it all! He doesn’t ask us to. Quite the opposite in fact….present your weaknesses and He will make you strong. Just pray.
Following leaving your requests at the Lord’s feet, pray for the event that requests are NOT met! Pray for trust that God’s will is being carried out and an understanding that His way is bigger and grander, to understand that we may not understand! Now or ever. But to pray for acceptance, that we DO understand that we may not understand, to have peace with that. Our viewpoint is so tiny and our circumstances and emotions so fleeting. Pray for strength to endure the hardships you didn’t want, ask for comfort and all the right people and words to lift you up and get you through. Pray for an abolition of fear, a peace that transcends all understanding as you suffer through the trials you did not ask for and in fact, asked to be taken away. Just pray.
And then: THANK GOD. Thank God for all the good things He is doing because HE IS if you are looking. No matter how grave it gets, there is good. The more you have been praying about, the more things you realize he IS answering and making good in your life, whether in circumstances or at the very least, the attitude adjustments, the lessons, the awakenings, the awareness of others’ struggles, whatever else!! If you are continually praying, you are continually having things to thank God for, periodddd! They are there and you can see it clear as day when you start setting aside time and space to just SEE! God transforms you when you pray; believe when you continually pray, you will be changed and so will the lens from which you are viewing the initial situation, spilling out into the lens from which you are viewing many other things. Just pray.
And lastly, you’ll see when and where you are starting to get off track and you’ll readily be able to pinpoint your areas of weakness but it won’t be a bad thing. It’s a good thing. You will want to confess the ways you’re falling short and you will want to do better and you will learn and relearn how much you need the Lord in changing and you will start craving and needing time with Him to get what you need to not only survive each day and each moment but to flourish. Because you can flourish. Who doesn’t want to flourish! Just pray.
You may not know where to begin but just begin anywhere. Start setting aside time and just stumble through a prayer not having a clue what you are saying or hoping to get out of it. My prayers often start off a jumble, not knowing what I’m trying to say or what I’m trying to ask! Sometimes I’m so riled up I can’t even pray about my own hardship so I start praying for other people instead– the prayer requests of others in my life, and God softens my heart and all of a sudden I’m just automatically seeing things differently. JUST PRAY. And do that every day for a chunk of time and you’ll start to get it, experience a taste of God’s incredible goodness and power. And you’ll want more of it and you’ll start seeing who you are without God’s force and who you are with it and you won’t want to go it alone. Every issue that starts taking over you’ll just remind yourself “I’ll fret about this when I’ve given it a good week of solid prayer” and the time for fretting about it will be never, just like that. Just pray.
I ended most of my prayers with this line that Nate first brought into our prayers together: “I can’t. You must. I’m yours. Show me the way.” (a prayer borrowed from Romero).
THIS IS MY PIECE AND THAT IS A WRAP!!! THANK YOU ALL FOR YOUR PART IN THIS ASTONISHING JOURNEY!
There is so much to think about and decisions to make when it comes to how we will handle the six-week period of recovery (details forthcoming). I am reminded of the Israelites after fleeing Egypt. They wandered in the desert for 40 years before reaching the Promised Land. During this time, God provided substance for them to eat in the form of manna, a bread-like substance….he rained down this “grain of heaven” for them to gather and eat. They were commanded to go and collect a daily portion of manna each day, enough for that day only, not to try to save any for the morning. Any manna saved up for the next day in disobedience to the Lord would fill up with maggots. Oof, if that doesn’t say it all.
Lord, give us this day our daily bread. Can I get an amen?
Part Two: The Day Of Surgery
I received a text from a good friend who prays for our little River every time she comes across Scripture about rivers. Here is the one she prayed for us on this day of major surgery:
Psalm 105: 41-44 He opened the rock, and the waters flowed out, so that rivers ran in the dry places. For he remembered his holy promise and Abraham his servant. And he brought forth his people with joy, and his chosen ones with gladness; And gave them the lands of the nations, and they took the labors of the peoples in possession, That they might keep his statutes and observe his laws. Praise the Lord.
We are ready, Lord. And all of our prayer warriors are, too. Let’s gooooo!!
Part Three: After Surgery
Huge sigh of relief!!!! We have had this surgery on our radar since March and it’s a bit surreal that it’s now in our rear view mirror. Surgery went as smooth as possible and we left with discharge papers the very next day.
I was recently reading a devotional that stated Pastor Rick Warren’s revelation that he used to think the Christian life was a succession of battles and blessings, whereas now he thinks of life as being on two tracks. “At any given moment in life there are usually blessings, but also battles to face. He gives the example of the huge blessing that came to him through the publication of ‘The Purpose Driven LIfe,’ which became the fastest-selling Christian book of all time. It gave him enormous influence. But at the same time he found out that his wife, Kay, had cancer. On one track of his life there was great blessing; on the other track there was a massive battle to face.”
I see truth in this, and I personally would add that the simultaneous battles alongside the blessings is what makes the blessings feel that much greater and to be cherished. Sometimes, the greater the intensity of the battle feels, the greater the parallel blessings feel, as well. That was true in the days and months following the original hard news that our baby had so many issues that doctors said we might consider terminating the pregnancy. And it was true in the 24 hours following this surgery that occurred on Friday, as well.
The battle was intense: it was an all-consuming minute-to-minute battle trying to figure out how to keep River comfortable. We were told weeks ago that to get to the meningocele, they have to cut through the dura, which they do close after surgery but it’s not water-tight for SIX WEEKS. That meant we were to keep River from straining, which includes “pushing” (they told us to give him laxatives), trying too hard to move around or sit up, and crying fits; otherwise we risk leakage of brain fluid. That first moment he started crying after surgery, I was just cringing at the realization that this recovery was going to be an immense feat. Here he was hooked up to all kinds of wires which made it hard to hold him, and on top of that, he had this massive stretch of stitches (way bigger than we expected to see) all along his neck and back of head, not to mention they “swept” the neck muscles to the side to get to the meningocele (which causes sore muscles). Additionally, he was dealing with pain from the circumcision, gas pains from the anesthesia, and sore/hoarse throat from the breathing tube which affected his willingness to eat. The struggle was physical (he is a BIG BOY), mental, and emotional–pretty comparable in intensity between the three of these. Even between the two of us, we were having trouble meeting all of the needs (including our own) and differentiating between cries/whines, even between basic needs of babies (tired, hungry, etc) vs. surgery aftermath. And to top it all off, the hospital staff came picking and prodding and wanting tests done on him at all the wrong times (like a right time exists, though, right).
In that type of all-consuming battle, the blessings lie in EACH AND EVERY minute of respite. Each and every minute in which he was not crying or whining, each and every minute we were not feeling helpless to comfort our little bubs, each and every minute he was peaceful. Those minutes gave us pause and urged us to just be still and be thankful (theme of the year, am i right?). Perspective changes when stakes are high, when battles are intense. It really sheds light on what I consider hard when I’m not in this kind of moment, reminding me I need to reconsider what “hard” is, and that I need to buck up a bit in the “hard” outside of hospital walls.
But of course, we continually fail in whatever it is we are trying to do, we continue to fail in trying to put into practice what we learned when we were in the trenches. We continually need a Savior! Continually need God’s sovereign hand guiding us and helping us. It’s not a fail that dooms us but a fail that frees us and allows it to be transformed to victory.
One of my besties wrote to me in the thick of it. She sent an image of words stating: “As a mother comforts her child, so will I comfort you” (Isaiah 66:13). She said, “Repeat this back to yourself right now.” It’s what I needed when I was so depleted and insufficient in comforting my own child, to remember I am a child of God and I needed Him to comfort me like I was comforting mine. And unlike myself, His love is perfect and it never runs dry…. “but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life” (John 4:13b-14).
Oh trust me, I had my Psalms 6 moments…..”I am worn out from sobbing. All night I flood my bed with weeping, drenching it with my tears. My vision is blurred by grief; my eyes are worn out because of all my enemies.” Okay, it was never close to this bad but it is for some and it was for David when he wrote this! We aren’t promised a life free of pain. But on this long, hard night, I felt Isaiah 41:10 and I felt it hard, being strengthened by God and upheld with his victorious right hand.
I just want to thank you all for all of the thoughts, prayers, care, encouragement, check-ins, etc. My friend wrote this to me the night before surgery: “May the symphony of prayers of the warriors rise up to the heavens and God’s grace and mercy flow down upon you all.” I was struck with the beauty of that image and it stuck with me throughout my entire stay at the hospital. I just felt completely covered in prayer and care and as a result, I felt a peace and calm that transcends all understanding as I awaited the results. There is nothing more powerful than the feeling of being completely surrounded with love and to know there are hundreds of people praying on your behalf.
What a wild ride!!!! And it’s a privilege to have you all with me!!!
Thanksgiving night, my (Pgh) family and I sat together discussing all that has transpired with River, crying tears of joy together, remembering what God has done. I read some of my prayer journal to them that included the darkest days and darkest moments of my life, but it was followed with “but I know I won’t always feel this way. I trust I won’t. I know I will look back and feel deep in my soul how the Lord moves.” And even one week later I had written that God already was moving, that He was already changing and transforming me. And I knew he would continue to.
I recently went on a drive and listened to “Victory Belongs to Jesus.” This was a song that brought my whole extended family together (virtually) to thank God for the prayers he was answering for River. And it reminded me of all He has done in River’s life and all He will continue to do.
I look at my other two kids and I know I’ve been thankful for them and joyful in experiencing them growing up, but my journey with River has changed my lens with my other two, too, believe! How much we take for granted and just assume good things and feel entitled to them. I’m not even saying He has always answered prayers the way I have asked Him to or that He has said yes to all of my petitions. On this side of heaven, we still get let down and beat up. But he equips us. He changes what we want out of our circumstances. He transforms our perception of circumstances. He softens our hearts and grants us this present-mindedness and gratefulness and joy that doesn’t make sense and that we can’t get anywhere else. Fruits of the Spirit become natural byproducts of our dedicated time in prayer: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, self control. And for that I am a better mother to all three of my kids since relying on prayer as much as I have been throughout this past year.
Down to the River 