Saturday, March 31, 2012

Walking through...

Well, it's the 31st, the last day of March, and we have officially spent more days in the hospital this month than days out. Brayden seemed to be in the clear yesterday morning. He had been pain free all night and hadn't thrown up in over 24 hours, his blood pressure was stabilized. He was starving and couldn't wait to eat after his scheduled MRI that morning. Once he came out of sedation and was awake and alert, they allowed him to eat. An hour later he vomited, his pain came back, and has persisted strongly ever since. He vomited two more times last night and three times already today before it was even noon. His pain is being managed with morphine still (the only thing that seems to be giving him any relief), and as of this morning, his blood pressure is back up...his last reading was 168/109 and has been consistently high for the past hour. They are now back to monitoring it every 15 minutes, consulting with his cardiologist about treatment, and consulting with the intensivist about managing his pain. They just hooked him up to a morphine drip to manage it more effectively.

There's a heaviness that looms overhead, and it's fighting to become my new ceiling. I'm not certain it really can be lifted...not even with discharge, cake, balloons and banners. Seems there will be a permanency to it that we will just have to learn to live with. Inside that cloud of heaviness we find the reality of another episode and the worry of not knowing when it will occur. With rain expected, we must go through this life with our rain boots on and an umbrella at hand at all times. I'd much prefer to live in a place where the sun was sure to shine the majority of the time. I'll trade my umbrella in for a pair of shades, gladly. I know, you can easily say to me, "Remember, the sun is always shining...even when we don't see it, it still comes out every day. It'll break through those rain clouds." I'm not in the mood for this "sunshiney" perspective today. Bottom line...we're still in a dark, rainy place. I'm heavy.

I think I've cried more this month than I have in my whole lifetime combined. The taste of tears, too familiar. Tears generously served from a bowl of unfortunate circumstance. Even when my heart declines more of this dish, life fills my plate with seconds and thirds, till I am full, bloated, and heartsick.

We have no choice but to walk through this. Our choice lies in how we choose to react to it. The majority of me finds it easy to trust and depend on the LORD. But there are inklings of doubt and fear that keep sprouting like weeds among the fruit. I keep asking Him, "What are You calling me to do in all of this?" "How are You going to make good of this?" "What is Your plan? Your purpose for this?" "How can this be for our good? Please show me." I know the gifts of spiritual maturity and strengthened faith are priceless treasures to gain in the midst of a trial or storm. But, I kinda want a break. An earthly break. I'm struggling with settling for the fact that this may be our lot in life. Still begging Him to take this cup. And if He doesn't, how will I find the resolve to say, "it is well"...? I struggle.

Fear lurks in the caverns of my heart, poking it's head from around the darkest corners, casting a dampness on my spirit that lingers like a spring shower. So much fear and uncertainty and decisions to be made...fear for Brayden, for his current health, for future attacks...fear of the unknown that lies ahead, that we'll be back doing this again soon. Fear that i won't have the strength to endure...this is our 3rd attack in 6 months and I feel I am near running on empty. Fear that this is our life now, that we'll have to keep Brayden living in a bubble...that we will have to reconsider every time we RSVP to a birthday party, celebrate holidays or plan a vacation [the two most common triggers for an attack are psychological stress (positive and negative) and infection (cold/flu virus). However, in over 60% of children with CVS, that stress trigger is positive psychological stress (like excitement) not negative psychological stress.] How are we going to let our 8 year old boy be an 8 year old boy? We can't keep him sheltered or allow him to live a life of disappointment after disappointment because we avoid exposing him to anything fun that can cause too much "excitement." I wrestle.

And, will our insurance be able to cover this? If this indeed is our new normal, will Darcy need to find new employment that will offer greater health coverage? How can we afford to have Darcy miss work every time Brayden has an attack? Do we keep Brayden on ADHD meds? How do they play a part in all of this? Side effects include suppressed appetite and difficulty sleeping. Lack of sleep and proper nutrition are also triggers for another CVS episode. We tried keeping him off of his ADHD meds for over a month...2 weeks in the hospital last time and then the two weeks following (once he was back in school). Problems of impulsivity and focus began to manifest and become a growing concern in the classroom. It's a double-edged sword, requiring much wisdom and discernment as his parents. Back on these meds he does well in school but at home we struggle with getting him to sleep and eat well. It's torn at my heart for some time now. A perfect balance between mental and physical health, that constantly has needed tweaking and adjusting for the past year and a half. I'm tired.

Darcy and I have seriously been considering home schooling...it's something we've talked about over the past 6 months and many times more recently. At home off of ADHD meds, I can handle the impulsivity. At home there is also less exposure to germs and sickness and psychological stress. But fear grips me when I think of homeschooling. I do not have the gift of teaching. That's my husband's area. I am not disciplined or organized enough either. Anyone who truly knows me, knows I also do not possess the greatest time management skills. I don't feel adequate. I don't feel a deep desire. What little "me" time I have now will be minimized even more (yes, there is a very selfish side to me too). But, this just may be what God is calling me to do whether I like it or not, or whether I feel equipped to or not. Over my own wishes and desires, I want what's best for my kids. Their needs will always come before my own. And more than that, I want to be walking in God's will. I'm prepared to do it if this is where He is leading me. I'm uncertain.

The fear can be overwhelming. Just knowing that we are not even close to being done with this journey is overwhelming. We have a long road ahead of us and there is no easy fix or short cut. I find myself begging God to take this illness away from Brayden...and I believe He can. I'd like to imagine our story being one of His miraculous healing. But I don't know if He will. That seems "fairytale-ish" to me. Is that lack of faith or disbelief? I struggle with this. Am I doubting? James says that "The man who doubts is like a wave of the ocean, blown and tossed by the wind. He should not expect to receive anything from the LORD." (even healing). Is this a form of doubt? Perhaps it's fear of disappointment or being let down. I don't want to feel disappointed by God, so perhaps I'm not allowing myself to go to a place of belief where disappointment could result? But, then I remind myself that His Word says He does not fail. That He is love...and love always protects, always trusts, always hopes and always perseveres. I'm trying not to let my emotions cloud out His truth. I persist.

I admit, I worry about the condition of my heart and where I might "get" with God. In many ways, we are going through the grieving process. Almost like a divorce or a death, where there is an associated loss. We are beginning to grieve over the loss of the family unit and life we once knew. Perhaps not as drastic as death or divorce, but it's still loss. All things we are still walking through and trying to process, and are being prepared to adapt as needed. With the knowledge and certainty of a future episode, I worry about where this is going to take me emotionally. I don't want to get to a place where I am questioning God, His sovereignty, or His plan for us. I don't want to grow angry, or hardened in the moments of future weariness and strife. I'm saddened.

So, I am choosing to walk by faith and not by sight. One baby step and one day at a time, even in the moments I don't feel like it. I'm walking through...The fear, worry and doubt will persist, but I'm choosing to put my hope in Him, the Guarder of heart and mind, the Giver of transcending peace. The One who does not give us a spirit of fear or timidity, but one of power, and of love, and of sound mind. And I'll fight not to let the world drown out His whisper, but will seek Him first, as we wait for Him to show us the way.

And I'll keep hitting repeat on my iPod,
listening over and over to "Fly Like an Eagle," and all the others, from my trusty Hidden in my Heart CD...
where truth flows out in song and note and melody,
through air, to ear, to heart.
I'll let it rest and settle there.

"Those who put their hope in the LORD
will renew their strength.
They will run and not grow weary;
they will walk and not faint.
They will fly like the eagle,
soar through the sky,
far above the storm.
They will glide on the cool breeze,
safe from the fight...
Those who put their trust in Jesus,
those who have their hope
in the LORD."

I'm walking through...

Thursday, March 29, 2012

He speaks...

Another full day spent at the hospital. Familiarity all around, in faces, and parking structures, in rooms and routine. This is not exactly the type of familiarity that brings comfort. But, for now, it is what it is, and we are walking through it.

Brayden had a horrible night here...in pain and discomfort all night long with little or no relief. He vomited 8 times between 1am and 7am. The medical staff was trying to avoid giving him morphine at all (as suggested by medical team at Mott), as it may exasperate symptoms that are already of concern (high blood pressure, nausea). So, they attempted to give him Toradol for pain, which did nothing. Also, Toradol can cause bleeding and since he began vomiting blood early on yesterday, they stopped giving him this medication. They later tried a drug called Ativan, a relaxant/sedative that has been successfully used with kids undergoing chemotherapy (can help with anti-nausea, and relax the systems of the body a bit). At first, we thought it was helping Brayden, but later realized it wasn't effectively managing his pain and was causing him to feel funny, dizzy, blurriness, etc. So, after vomiting over 40 times yesterday, mostly every 10-15 minutes, and having no real relief of pain for over 24 hours straight, they finally gave him morphine at 10:00 this morning. And it worked. Pain relief for a good solid three hours and, although he has needed a few more doses, he has not thrown up since that first dose at 10am. He's kept down ice chips, a popsicle, ice cream, and watermelon. These are good signs that we are moving in the right direction and the duration of this episode won't be as long as the previous two.

Because of the double vision Brayden has been occasionally experiencing this time around, they are going to do an MRI tomorrow morning and make sure nothing significant is going on in his brain. The double vision may very well be a side effect of one of these two new medications they introduced, but they need to rule out anything more serious.

I must admit, I've struggled a bit today. Fighting a bit of a pity party as the majority of Michigan is getting ready to vacation their Spring Break away. While some are basking in sun and white sand upon their skin, we are cooped up in a room with fluorescent lights and white hospital sheets upon our own. Not that we were able to take a vacation anyway, that seems a distant luxury at this point in our lives...but I'd rather the pendulum not swing to the other extreme. I don't need luxury, but I'd kill for falling somewhere in the middle...how about at "normal?" All I know is that if we can't find vacation and rest and sandy beaches in this earthly life, I better have a mansion parked right outside the ocean in heaven...where rest and beauty and luxury, without worry or pain, can be enjoyed for an eternity.

I was on the brink of meltdown anyway, and fought these emotions hard. With this in mind, the GI specialist came in this afternoon and shortly into our conversation he said "Expect this every month. Most kids with this are admitted about once a month, some more." And in a kind, yet certain voice, he said, "You will be back..." The weight of his words fell like a stack of bricks upon my chest. Everything he immediately said after that became hazy, and I felt that Texas-sized lump in my throat and fought back hard sobs, desperately trying to keep my composure and carefully trying to soak in everything he was telling me. Uninvited and uncontrollable, slow and steady tears fell from my eyes throughout our entire conversation. I wiped each one away as I struggled to push these fears aside for the moment, to fully listen and comprehend all he was saying. Once the Doctor left the room I had to sneak into Brayden's bathroom just to breathe. To let out a quick sob. Or two. Or three. And recompose. My mind kept racing back to his first words..."Expect this every month." Hospitalization and this nightmare monthly? Helplessly watching my son go through this misery monthly? This unexpected, can happen "whenever and wherever and last however long" nightmare? Oh, the reality of this takes my breath away. Disheartening is an understatement. It's crushing.

Only 2% of the population has Cyclic Vomiting Syndrome. An even smaller, tinier, almost minuscule amount of this population have Sato Syndrome (a more severe variant of CVS with the hypertension and rapid heart rate component). It is believed that Brayden is in this select few. Our GI Specialist suggested that we consult with a Doctor at the University of Milwaukee. He is a leading expert in Sato Syndrome (as much as one can be...it is so very rare and research on it has been limited to the past 10 years alone). He has more experience with Sato Syndrome cases than anyone else in the country (and has at least treated 34 patients). Because this is a syndrome there are numerous symptoms that play into it...one of the contributing factors is the elevation of certain hormones. It is thought that the brain of a person with Sato Syndrome overproduces these hormones. So, beginning this evening they are doing a 24 hour urine collection to see if there is an elevation of these hormones. They also drew more blood to check for elevated hormones. Our GI Doctor is hoping that if these hormones are elevated, it'll present a greater case to bring to this Doctor in Milwaukee that substantiates that Brayden indeed has Sato Syndrome and can lead us to further specialized care.

You may be wondering why they are backtracking and testing to confirm Brayden's diagnosis. Although he was diagnosed with this at Mott, that diagnosis didn't come until the day of discharge. Prior to this discharge day, the GI department (unassuming to us) had not yet been consulted regarding Brayden's case (hence, the long period of waiting with no answers). So, the head of the GI Department at Mott made this diagnosis of Brayden based on Brayden's medical history versus actually seeing Brayden in the midst of an episode or taking further tests to confirm Sato Syndrome.

Our GI specialist here suggests that when Brayden is better we travel to Milwaukee to consult with this Sato Syndrome expert. And then perhaps we will be able to come up with a better treatment and management plan to help Brayden during episodes and in the time in between. If this Milwaukee Doctor takes Brayden's case, then anytime he has a future episode, the doctors here in Michigan will be able to directly consult with this Doctor for advice and protocol, etc.

So, we are staying put in this hospital for at least another full day or two. I'm not sure what is tougher to watch, my son suffering physically or seeing the crushing of his spirit as he begs to go home and is told it is not going to happen.

Another whirlwind of a day. Heartsick. Heavy. Numb.

And then He speaks.

A short while after the GI team left, the pediatric cardiology team entered the room. Because of the high blood pressure, they had a heart ultrasound performed today to see if there looks to be any long term damage to his heart due to this hypertension. I hadn't even had a chance to wipe down my tear stained cheeks when they began this test. The cardiologist was pointing out and explaining to us everything the ultrasound technician was doing. Everything looked perfect and he said Brayden had an "olympic heart." This is the first real good news we've heard in a while, even if we weren't suspecting there to be heart issues, it was still nice to have a positive report. The cardiologist asked us if we knew what our last name meant in German, (which we did) "Writer." How appropriate for me to attain a last name through marriage with this meaning...as writing and the passion to do so courses through my very veins as if it's as necessary to my survival as the blood that flows within.

The cardiologist then stated, "Brayden...do you know what this name means in Hebrew? It derives from the word 'bare' and it means 'healthy'...God should bless him and he should be healthy." At that moment I really felt like God was speaking to me through this Doctor (whether he knew it or not.) I told the Doctor this is exactly what we've been praying for and that God would take this illness completely away from Brayden. He told me he would be praying for this too. Did you catch this? Never before have I ever encountered a Doctor that A.) Mixes medicine with religion or B.) Out of the blue, offers to pray for me and/or my family. Before he left our room he made a point again to tell me he would be praying for Brayden. To me it felt like God was saying, I know what they are telling you. I know what you are fearing. But, I am God. I trump medical reasoning and I still remain in control despite what evidence you may hear or see before you.

And so I cling to this knowledge of truth as the world and it's logic sometimes, even without intention, tries to stifle out all hope. There is a God who is bigger than these issues. A God who knows the answers even when we don't. A God who works and moves even when we can't see Him. A God who comes, not always through rock or rose, but through people and encounters and gently reminds us that He is still here in the midst of our brokenness and chaos. He is a God who sees. A God who hears. A God who leads in, leads through, and leads out. A God who heals and turns ashes into beauty. A God who is for us.

In the middle of our whirlwind day, where medicine and science and technology try to make sense of everything, He spoke.
And I received.

Wednesday, March 28, 2012

My spirit is quiet tonight. My tongue can hardly say a word but my heart is screaming much. Disbelief that my boy is back in the hospital. I was hardly prepared for this to happen so soon. Cyclic Vomiting Syndrome. A vicious illness that plagues so few yet impacts so deeply. Many families returning to the hospital every couple of weeks. Something, even after diagnosis, I didn't think would happen to ours. Not sure I can bear seeing my son go through this again. And again. And again. Certain God will see us through, and not feeling the need for such tangible evidence of Him and His work this time because it was so gloriously shown before...in a way that destroys all doubt and confirms that He indeed is for us. These truths don't need to be relearned as they are forever engraved on my heart. But yet...this heart is struggling to smile tonight. Fear creeping in that "normal" life as we once knew it is no longer. Perhaps this is our new normal. Hospitals. Life interrupted. Normalcy taken. Nights slept in my bed alone again. Husband and son one way. Wife and daughters another. Days and nights divided. Missing my girls. Numbness. Surrealness. Family unit ripped apart momentarily. Simple things we looked forward to, being stripped away, passed over, and put on the back burner once again...like going to the gym and getting back on track physically, attending bible study and being filled spiritually, watching American Idol on a normal Wednesday night, celebrating birthdays and babies about to be born, missing out on these occasions...and girls' nights out and guys' nights out...events that refresh and allow the stress of the world to take back seat for a moment. Disappointed that this episode wasn't as short-lived as once hoped. But yet requiring hospital admittance, another pediatric intensive care unit, juggling of other kids and dance and school and drop offs and pickups. Right when I thought I was finally making my way back to normal...that we all were, I'm realizing that my plans really aren't my own. Makes me want to forget the messy house, the overdue catch up homework, the piles...and just spend this life living in the moment, without responsibilities hanging overhead, but with joy and memory-making being sought after. I can do all things through Him who strengthens me. So, tonight I will bank on that strength and the new mercies that are sure to arise with the coming of tomorrow's sun.

Sunday, March 25, 2012

what is normal, anyway?

The past couple of days have been ones marked with normalcy. Our routine is beginning to fall back into place, and we are gaining some ground on the homefront in terms of cleaning and piles. For no other reason but complete embarrassment I chose not to take a picture of our bedroom because there are probably close to 7 loads of unfolded laundry on the floor right now, and there is nothing normal about that!
But really, what is normal anyway?
We have a 2 and a half year old in our midst who wants nothing more than to be outside to blow bubbles! I can't count how many times I catch her putting on a different pair of shoes (never her own!) to go outside for a little bubble blowing fun. Earlier this week, she was sportin' her sister's soccer cleats.

And Oh Mercy! Yesterday, I got her undressed to get ready to give her a bath and before I took her up, I went out into the garage to grab something out of my car. In that short period of time, little miss put on my shoes and darted outside.
This is what I shockingly beheld:
(no worries, for your viewing eyes I covered her in fig leaf)

Yep, that's my girl prancing around outside in the middle of the day
buck naked in mommy's high heels!

Another thing she loves to do is climb into mommy's bed and lay there under the covers. She does it at least 2-3 times a day. Here is our clean yummy after her bath, giving me many of her "yummy" faces.
And yesterday, she climbed back into my bed to take kitty's temperature.
Looks like he may have to go to the "hospital,"
(a word this 2 year old uses regularly these days)
But, any sick kitty feels instantly better after a little yummy love.
Hmmm...speaking of love...
This was not one of our lovelier moments this week.
Seems this little one earned herself a little timeout here.
After drawing with marker all over the back of her brother's pillow case.
Timeout's over...
back to the bubbles!
This time...I'm rockin' brother's kicks.
And yet, another shoe change this day...
mommy's flip flops
(AKA: "fif-fox")
And today after church,
she chooses Brookie's sketchers.
And then big sister's zebra wedge flip flops.
All of this shoe changing has become our new normal around here.
And a little bit of old normal can be found below.
Flowers picked by my little boy for his mama.
I'm not certain they all came from our yard, yet I can't bring myself to tell him not to pick. It melts my heart each time he does...And the look on his face each time as he holds my bouquet behind his back in surprise and has a huge smile painted across his face is priceless.
I take a picture of these moments with my heart, and i've got quite a rolodex of them hidden in there.
This boy's a giver and a romantic.

Normal.
My three musketeers cuddling on the couch together before bedtime each night.
Some may call normalcy mundane.
But after the past few weeks we've just had,
normal is nothing short of
cherished.

I've posted this quote before, but it brings new meaning now and is a great reminder for all:

"normal day.
let me be aware of the treasure that you are."
~mary jean irion

Ahhh...normal.
you indeed are a treasure.

Friday, March 23, 2012

A journey of His faithfulness

I feel a little silly re-posting this vimeo, but I made a change to it that has much greater meaning to me- the song. While Brayden was in the hospital I listened to the "Hidden in My Heart" CD often...on the way to and home from the hospital, during a late night stress-relieving bath at my sister's house, and over and over again in the afterdays of this journey. It's a beautiful CD I've given often as a baby shower gift. It's also my "go to" CD when I need peace and to de-stress. I debated between two particular songs to use for the vimeo I put together. The one I am posting now, was my original choice... I'm not sure why I defaulted from it, I think it may have been a vimeo "timing" issue initially. Anyway, this morning I was listening to this CD again while getting ready for my day and this "I will never leave you" song played, and I knew that this was the intended song that needed to be attached to this vimeo of God's faithfulness. This is the song that I played over and over again after passing by that intersection on the way home and found that the rock was no longer there, filling me with the realization that God was with us, went with us, and goes before us...always. That He will be right where we are. This is the song that I hit replay on day after day once we came home from the hospital...that helped me process and untangle and wonder at all that had taken place. This is the song that best captures our journey, pulls at my heartstrings, resonates and best attaches itself to this experience. So, for my own personal reasons and satisfaction, I repost this new edition.

a journey of His faithfulness:






Wednesday, March 21, 2012

Count it all as joy

(Warning: This is a long one. Buckle up for the ride.)

I've really been struggling to climb my way back to "normal" after the whirlwind of the past few weeks. Brayden was in the hospital for 12 days of which I solely lived off of adrenaline, coffee, and prayer. Once home, these things all came down a notch, and with that came the emotional crash. Never before have I been so physically, emotionally and spiritually exhausted all at once.

I've also never before worried so deeply, prayed so fervently, depended so greatly, and received so fully. A roller coaster of holy highs and fear-driven lows. I've come out of this with a renewed compassion and admiration for families who endure illness...the uncertainty, the fear, of life and health, the unknown, the depletion, the waiting, the weariness, the desire for answers, for control, the knock you out of your seat worry and exhaustion, the thievery of normalcy. Ours went on for 12 days, with each day feeling like 100 days rolled into one. Some families endure this for months, sometimes even years. I can hardly fathom. But, with it, comes a new heart cry:

"All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us."
2 Corinthians 1:3-4

A lavish giving of comfort that this student hopes to one day teach, as others so generously and graciously taught me. I can honestly say, the treasures He has given us in the darkness far outweigh the struggle. The worry, fear, and utter exhaustion pale in comparison to the Mighty ways God worked, revealed, and made Himself known during these 2 weeks. All I know is His Hand was written All over this journey. For that, I will always refer to this experience as nothing less than a story of His faithfulness, our story of His faithfulness. This chapter being one of the most beautiful He's written yet.

So beautiful, I hardly know where to start. I've been stuck somewhere in the middle between "nightmare" and "normal." Feeling clogged, lethargic, unable to move, or talk much, or do much. With the onset of a cold and possible sinus infection, I mean this in a literal physical sense...but even moreso emotionally. This was singlehandedly the most traumatic parenting experience we have ever gone through. In my quietness and retreat, I am still processing and trying to find words to articulate my heart. But come up inadequate each time. Perhaps that's because when you experience firsthand, the magnitude of God and His power, provision, and sovereignty, it's impossible to attach words. There are none to justly describe. Even Webster's comes up empty. That page simply does not earthly exist.

This is extremely troublesome for a "words of affirmation" girl...a girl who has to "write to feel"...who uses words to sort, process, heal, renew, affirm, make sense of, and bring closure to tangled emotions and life experiences. My spirit has felt as clogged as my sinus cavity these past few days. Don't get me wrong, spiritually I feel sound, complete, strengthened to the core. How could one not come out of this experience with a renewed faith? Oh, He has done a mighty work of my heart. Something I hope to describe in these next few paragraphs if I could just get the emotional drain-o to begin to do it's work. This clogging is just that...more of an emotional blockage. Shocking even me with it's delayed timing in returning to normalcy. It's rendering me pretty much useless. I look around and see crumbs all over my floors and rugs, and I have piles of mail, laundry, and stuff everywhere. Yet I can't seem to tackle them. I'm three weeks behind on my Bible study, but I can't get through it without emotional distraction. We're still sleep deprived and our bodies are catching up with the stress. Both Darcy and I have been under the weather; He also has kidney stones flaring up. Brayden now has a cold too, and Brookie just came down with a stomach bug last night. It's beautiful outside, yet I can't seem to get out there to truly enjoy it (well, perhaps I would if I had a laptop). The pile I must first tackle is right before me...a messy pile of heart and emotion longing to find its way home, traveling in the form of words to pen to page, (or better yet, from words to keyboard to screen.) Until then, I'm pretty sure I'll keep functioning as a clogged drainpipe, unable to work as purposed, functioning at low capacity, desperate for release.
And so I write.

To make a long story short, we had a very sick little boy. What appeared to begin as a stomach virus, quickly turned into the nightmare we experienced six months ago with Brayden being hospitalized for 5 days with similar symptoms and no answers. This time around though it seemed worse, and we knew this was not a "fluke." Fear set in and we were desperate to find out what was causing such illness in our little boy. Over the course of 12 days, Brayden was in 3 hospitals, 5 hospital rooms, 2 pediatric intensive care units and had been air lifted by helicopter from one hospital to the next. 11 days into this we still did not have any definitive answers...even after X-rays, CT scans, ultrasounds, blood draws, urine samples, IVs, a PICC line, days on morphine, consulting with a GI specialist, a neurologist, a cardiologist, a radiologist, a pediatric surgeon, and an endocrinologist. Besides the constant vomiting and severe abdominal pain, Brayden's blood pressure began to skyrocket and was unstable. The team of doctors at both hospitals were convinced that the high blood pressure was a separate issue than the abdominal pain/vomiting. "Pheochromocytoma" (A condition in which a sometimes cancerous tumor is on the adrenal gland) became a word we were becoming all too familiar with. Although very rare, they began testing him for this illness at both hospitals as well as for several other possible metabolic syndromes. While we are still waiting on official results (since so rare, this is often not tested and needed to be sent out to Mayo and other facilities) the doctors all remain extremely confident that Brayden does not have this. On our 12th day in the hospital, we sat down with Dr. Dickinson. (He is the head of the Pediatric GI Department as well as the head of Clinical Affairs at Mott's Children's Hospital, and one of the main reasons we wanted to be transferred to Mott as he came highly recommended by several sources). Dr. Dickinson confidently diagnosed Brayden with something called Sato Syndrome, which is a variant of Cyclic Vomiting Syndrome. It includes the hypertension component, explaining Brayden's high blood pressure. It seemed like a long hard road to finally reach these answers, often times riddled in worry and frustration. I feared we would leave the hospital (like we did 6 months ago) and still have no answers, but God answered our prayers. The 2 weeks Brayden was ill we (and an army of others) fervently prayed for healing and answers, and God faithfully delivered both of those things.

With Cyclic Vomiting Syndrome/Sato Syndrome, there is no cure, and Brayden is expected to have another episode. The good news is, we know exactly how to treat him once we notice the onset of an episode. If he's treated quickly and properly, this could significantly decrease the intensity and duration of the episode. In addition, with this illness, there are no residual effects (besides fatigue) between episodes, so most kids resume back to their normal healthy selves after each one. They do say that most children with CVS miss 24 days of school on average. I'm praying God protects Brayden from this and that his episodes will be short and spread apart. Some kids have a few episodes a month. Brayden's first and second episodes were 6 months from one another. I'm also not forgetting or disbelieving that God may choose to heal Brayden entirely. Another positive aspect of CVS is that most children eventually outgrow it. Because it is an illness within the "Migraine" family (episodes often referred to or including "abdominal migraines"), there is a high chance that once Brayden outgrows CVS, he could develop migraine headaches as an adult. These are all conditions we can live with, and thank God this isn't something more serious or life threatening.

So, moving on to the details of heart. Let me try to untangle this messy pile by sharing some of the treasures God gave us throughout this experience. A few of them I wrote about in my last two previous posts...and I simply cannot write about each and every blessing now, but let me just tell you that God does not withhold His finest from us. He doesn't dish out plates of mediocracy. He doesn't hand out sides of "this is barely enough, but it will get you by." No, He is a lavish God. He dishes out the finest delicacy of blessing and the richest gifts of love when you least expect it. And His finest isn't just for now and what He can provide...although His word does promise us this:

"And my God will meet all your needs according to his glorious riches in Christ Jesus."
Philippians 4:19

His finest is here for us now to live life abundantly. But it was also given long ago, in none other than "thorn on thy brow" love...a life given on the Cross for us. And His finest is yet to come, as believers who are co-heirs with Christ...heirs to the Royal Throne.
He does not withhold.

He held us up during these past few weeks. He used others to hold us up too. It is one thing to be Christ's Hands and Feet. It's another thing to see it in action. But to experience it...to experience others being His hands and feet for you and your family is something altogether different and altogether beautiful. I get choked up now as I type because being on the receiving end of this has humbly been one of the greatest gifts our family has ever been given. These are the treasures in the darkness. From day one to day 12, every single one of our needs was met and exceeded.

We began this journey with friends stocking up our pantry and refrigerator and we ended this journey with the same...a house full of cards, balloons, streamers, food in cupboards and fridge, cake, gifts on the counter tops, on the front porch and in the mailbox. And every day in between we were brought food and meals at the hospital by family and friends. We also began and ended this journey coming home to a freshly cleaned house. Between family and friends, my girls were taken care of and accounted for daily. I missed them miserably, but found great comfort that they were in good care. It was the little things that moved me, such as my sister taking a day to bathe my ragmuffin girls, trim their hair and cut their long dirty fingernails (all things a mommy usually takes care of). Friends taking shifts and scheduling pick-ups and drop-offs and keeping Brookie throughout the week so she wouldn't miss school. Packing her lunches and helping her with her homework. I didn't have to coordinate or worry about any of this. His hands and feet stepped in and took care of it for me. My sister allowed her own life and family to be interrupted and put on hold while she stepped in and stood by my side every step of the way...again, watching my girls, enlisting her husband to watch my girls, coming up to the hospital daily, leaving with me nightly, offering strength and encouragement as each nightly departure ended in a mess of broken tears and utter exhaustion. I often ended each day completely spent and wondered how I could possibly wake up and have the energy to do it all over again. But I did. New mercies daily...delivered by God, and delivered by friends and family who prayed, and called, and prayed, and texted, and prayed, and came, and prayed. I'm moved when I envision the army of prayer warriors fervently petitioning and believing God on our behalf...whether it was my ladies Bible study all on their knees before the Lord begging for healing and answers, whether it was the prayer warrior on fb posting a prayer chain for Brayden that spread across the country like wildfire, or the warrior driving in their car, or standing in front of their kitchen sink, or waking up in the middle of the night and taking that time to pray. Thank you. He heard and He answered. I'm certain this was in response to your intercessory prayer.

When we transferred to Mott, there was a big part of me that felt immense fear. Fear of losing our safety net and being away from our church family, our home. It felt like we were being ripped away, in a sense, from everything we knew....and we had no idea how long this would continue and how long Brayden would remain in the hospital. I knew at Mott we would be closer in proximity to my family, and there was great comfort in that. I don't want to discredit how wonderful their support was to us. But, our home has been out here for nearly 8 years now. There is comfort in home. After 8 days at Beaumont hospital, albeit a hospital, we had established a routine. With routine there is comfort. At Mott, everything was new...the hospital, the room, the medical staff, the drive. A routine had yet been established and I felt bare and vulnerable, afraid of being unknown and forgotten. I drove home that first night from Mott and felt so homesick. The distance from home left a hole in my heart, that at the time, seemed a small concern compared with getting my son healthy and finding answers. But I spent some time on the phone that night with a friend, trying to articulate through tears, the loneliness and fear that was beginning to consume me. I couldn't even tell you exactly what I needed to counteract this fear...but immediately that next day, God used my friends back home to shower me with love. Again, as a words of affirmation girl, the texts and calls and messages I received that day (and each day after) were not just filled with prayer for us, but with reminders of love that they had for me and my family...and this filled that growing hole of fear and homesickness.
Love covered it.

With our current work/financial situation already strained, the outstanding medical bills from last year as well as what was accumulating before us, both cars with newly cracked windshields "out of the blue", going through half a tank a gas a day to drive the 50+ minutes each way to the hospital, and with Darcy being out of work for 2 weeks straight, you can imagine how strained we were. This in itself created more stress onto an already stressful situation. Family pitched in and helped us initially. Our church family took up a love offering for us and anonymously handed it over to us at the hospital the afternoon Brayden was being life flighted to Mott Children's Hospital. As we opened this unexpected gift, the shocking generosity and the beauty of God's provision brought me to my knees in that hospital room and brought both Darcy and I to tears. We were in utter disbelief. I type now through tears as I recall how God used others to care for us and love on us so generously and so deeply. He did not withhold His finest. Physically, emotionally, and spiritually He met all of our needs...just as in that great Philippians promise.

Do not take for granted the people God places around you. They may not all be blood relatives, but He has you in your current location at this given time because He knows what you need and He knows what's best for you. True friends and an incredible church family are not easy things to come by. Don't underestimate this blessing. You may be missing treasures around you when these gifts are overlooked in search of other things that trump one's priority list. Our church's mission statement is "Changed People Reaching People for Christ." I've always loved our church and have taken pride in it. Now, I'm in love with our church and its people. Not only is this a church that reaches the lost, poor, and broken around us...this is a church who reaches the lost, poor and the broken within. Genuine servanthood.

I must admit, my initial reaction in receiving help from others is to reject it. I don't want to burden or put any one out, I don't want to appear needy or weak. I'm sure it's a pride thing to avoid asking or receiving help. But I've been humbled. I've been humbled because I received. I see now that by refusing help, we are denying others from being blessed by being a blessing. In essence, we are rejecting God too because He is attempting to use others to be His hands and feet. When we reject the help of others, we are refusing the Hand of God. I've learned to embrace this. It makes me eager to reciprocate and extend this blessing to others. I saw how our sharing and embracing and receiving has blessed so many others spiritually as they walked the highs and lows of this roller coaster with us. They became eye witnesses to the Mighty Hand and Work of our God.
His glory made known to all.

I think back on this experience and images of a city that is in harm of flood enter my mind. I see people working together in unity to protect the city and it's people from a disaster brewing. An assembly line of townspeople throwing sandbags with frantic determination to build a wall to fill the gap between floodwaters and home. Our family was this city. Our friends and family were its townspeople. They stuffed the gap and kept stuffing and stuffing each time a hole sprung open. Before we even knew there was a new gap emerging and ready to break loose, they were there to fill and protect. A protective covering of God's provision all around us. Sealed with such love and faithfulness. His finest.

God used others to provide for us and make Himself known. He also showed up in personal and intimate ways over the course of this time. I wrote about my "Rose of Sharon" and the stars in the sky He allowed to brilliantly shine for me one night. There are other stories and evidences of Him sprinkled throughout this journey. But let me end with this last treasure He graciously blessed me with...it's a story of a rock.

For 8 days straight, each early morning I arrived at Beaumont hospital and each late night I left, I passed a rock that sat in the middle of the road at the intersection of 13 mile road and Woodward. The rock was about the size of a child's medium sized Nerf football and sat alone in the median between the coming and going traffic. The first time I saw the rock I thought to myself, "Well that sure is dangerous for that rock to be in the middle of the road!" (although it was not in a turn lane or in the flow of traffic, it still could pose some problems at a busy intersection). After a couple of days I grew surprised that the rock had not yet been removed from the middle of the road. It became a "thing" for me to purposely look for this rock each morning and each night. And strangely, it brought me comfort to do so. It was a reminder of God being my Rock. In the midst of uncertainty, that rock stood firm and unmoving. It was steady and constant, unshifting, something to expect daily and to depend on. And day after day as I passed this rock, it became a reminder for me to thank God for being mine.

When Brayden was transferred to Mott, he went by helicopter and Darcy and I followed behind in my car. We left Darcy's car at Beaumont hospital. When Brayden was finally discharged (on Darcy's birthday!), and it was time to head home, we swung by Beaumont to get Darcy's car. Darcy was driving at the time and he entered the hospital from a different entrance than I had used each day. As we were leaving the hospital after retrieving his car, I felt compelled to exit at 13 mile road to see if that rock was still there in the middle of the road. I even contemplated trying to take a picture of it if it was still there. And as we came up to that intersection, I looked for that familiar rock and it was gone. And the tears that fall now are the same tears that fell then. Isn't that like our God, to go where we go? To be where we need Him to be. For 8 days straight, He allowed that rock to be there in the middle of the road because He knew it was a daily reminder for me to know that He was there with me. From dawn to dusk. From start to finish. That He would be my Rock in times of trouble. My refuge and strength.

The removal of the rock was not because God had left, it was evidence that He went with us. That He goes before us, always goes with us, and is always present. A Rock that does not abandon or forsake. I cried fresh tears the whole way home from the hospital that day. Peering in my rearview mirror at a healthy boy in my backseat, glancing at a dried rose on my dashboard that had been a representation of God's hand with us along each step of our journey, reflecting on the sweet and beautiful answers to prayer, and thanking Him for His unshakable faithfulness and provision. These are my treasures that were hidden in darkness. I can honestly say with genuine and absolute belief and resolve, that I count this all as pure joy. It's no wonder I began a James Bible study before this all happened and had memorized the first 15 verses of James. He knew I would need it. James 1:2-4 would soon be a scripture to not only live by, but to know...and to know with every ounce of heart and mind.

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything."
James 1:2-4

I am lacking nothing.
This is a piece of our journey of God's faithfulness,
and yes, my brothers and sisters,
I count it all as joy.



(and now with all of that untangling of heart, i'm ready to tackle on some other piles...and perhaps even clean my floors.)

Tuesday, March 6, 2012

My "Rose of Sharon"

I stand in utter awe and amazement tonight at our awesome God. These past 5 days have been marked with worry and exhaustion, but also with hope and provision. I am just basking and bathing in His faithfulness as I try to put words to all that has transpired. Much is on my heart, but my fatigue doesn't want to cooperate with the writing of eloquent words and smooth transitions, so grace is required of you if you choose to read further.

I went to bed really late last night and completely spent. I woke up this morning and still felt a thick layer of exhaustion cover me. As the morning hours unfolded, so did our worry for Brayden. He had not improved but seemed to be growing worse and his blood pressure was increasingly high (a new concern). It was decided by his team of doctors that a CT brain scan was in order. The "tone" of the medical staff had changed, and fear began to creep into our spirits. I don't know if I've ever been so worried before.

Brayden has been in the hospital for 5 days and Darcy and I have traded off shifts all throughout. Today was the first day we were able to be there with Brayden together all day. I've missed my husband; I've missed my kids; I've missed our family. Before Brayden's CT scan, Darcy and I knelt down on either side of his bed and prayed over him, in tears, in earnest pleading that God, the one who fully understands the love a parent has for his "one and only son," would protect and heal Brayden...that nothing would be discovered on these tests that would be of concern. At this time still, Brayden was showing no signs of improvement. He had become increasingly lethargic and it was hard to not allow my head to travel down the dangerous road of "what if's."

Last night, while on the phone with a friend, I cried out and told her that I just wanted to feel God's presence near...I wanted another gracefall. And while I could clearly see that He was using others to be His hands and feet for us, I wanted Him for myself. I wanted to experience Him directly, personally, intimately...especially in a time such as this. Why couldn't I feel His presence covering me at a time I needed it most?

One of our friends who came up to visit us at the hospital yesterday brought a goodie bag that contained a book called "Wonderful Names of our Wonderful Lord." I flipped through it that night and came upon a page that called Him "The Rose of Sharon." To be honest with you, I don't know much about how He has received this name in the Bible or what it means to us. I've heard the term before, and was even intrigued as I came across it in the book, but didn't give it much thought beyond that first glance. But God was up to something here.

After Brayden's CT scan today, the worry and fear persisted. We were in the elevator and others joined us. There was a married couple accompanied by a medical staff person who was pushing a wheelchair that was filled with the largest floral arrangement I have ever seen. It was really beautiful. So grand...and they were mentioning that they never see arrangements like this, that these types are usually ones celebrities give and receive. And as we were about to exit, out of the blue, the woman pulled a rose out of the arrangement and stepped across the elevator floor and placed it right into my hand. I was overcome with emotion right then and there because I felt like God was saying, "Here you go. You wanted Me for yourself and here I am. I am the rose of sharon. 'I take hold of your right hand and say, Do not fear, I will help you.' (Isaiah 41:13...a verse He gave me when I walked through the darkness of miscarriage a few years ago.) I couldn't hold back the tears for the rest of the walk back to Brayden's room. I held that rose and felt like I was holding the hand of God. It's fragrance sweet; it's symbolism even sweeter. And I felt His presence in a real, tangible, and intimate way. Just as I had longed and prayed for the night before.

As soon as I got into Brayden's room, I went right to that book and searched for the page that named our LORD and described Him as "The Rose of Sharon."

"I am the rose of Sharon."
Song of Solomon 2:1

It reads, "Child of God, there is no mood of the life where Jesus fails to fit thy need; to brighten as a brilliant rose thy life. In joy or sorrow, sunshine or shadow, day or night, He blooms for thee. Behold Him, then, today, not only on the Cross for thee, not only on the Throne, but near thee, close beside thy path, "The Rose of Sharon."

Awestruck. A God so big who knows our hearts, who sees us, who hears us and is willing to come down into the tiny details of our lives to remind us that He is near, that we are not alone, that He will not fail us, but will provide for our needs and bloom for thee.

As the day unfolded, it grew even sweeter than that rose. Brayden's CT scan results came back completely normal. I couldn't stop crying tears of joy with this great news. I completely attribute this to the army of prayer warriors out there who were petitioning on our behalf and a God who listened and responded. And then it seemed that with each new hour of the afternoon Brayden seemed to be improving more and more. He first began to actually stay awake and alert and not be restless in pain and nausea. The doctors tried a new medication [one that they use to treat migraine patients because they believe that this episode could have been an "abdominal migraine," which is a variant of Cyclic Vomiting Syndrome (the diagnosis they are leaning toward)]. And it seems to be working. Brayden began to sit up on his own and come evening, he asked to go down to the children's play area. Although unable to walk, his Daddy carried him down and he enjoyed a wagon ride and put together a puzzle. His appetite returned and we began making a wish list of all the foods he was craving. The joy was blooming within me as I watched and reflected on the dramatic changes that had taken place in his favor over the course of the day.

On the ride into the hospital today I was listening to my WORSHIP playlist. One of my favorite songs lately has been "Who But You" from the album "Music Inspired by The Story." It's a song told from the perspective of Abraham and the lyrics are, "I see a star. You see the Milkey Way. I see one man counting sand, but You see generations...Who but You would ever choose to dream Your dream in me. Tell me, who but You, would dare me to believe what I can't see...You alone can do the things You promised to. You are Yahweh. I'm just a man. I'm counting tiny grains of sand. Placing every promise in Your hand. Great and Mighty God, I believe. I believe You. Keeper of the stars. I believe, I believe You." And as I was driving this morning, I sang those last chorus lines with desperate hope and resolve. I was choosing to believe.

My car ride home tonight was much different than the one the night before. I warned the girls that we would be listening loudly to praise music all way home, and we did. This ride home was marked with tears just as the night before, but these tears were fragrant with joy and thanksgiving. I remember looking up into the sky last night hoping to see stars, but there were none in sight. But tonight I looked up and the dark sky was full of them. I couldn't help but think He allowed them to visibly shine tonight just for me...as a reward for believing Him and His promises. I thought of that song and thanked the Keeper of the stars for simply being God.

And then I walked into the house...and it got even sweeter. I almost immediately noticed that a few things were added on the countertops and that all of my dirty dishes were no longer sitting in my sink. My days are blurry and at first I assumed it was Darcy who did this when he came back home to nap Berlyn during one of our shift changes...but, we were both at the hospital together all day so it couldn't have been him. And then I noticed my "loving deeply friend"'s crockpot was missing and I thought..."How nice of her. She came to get her crockpot and washed my dishes for me. What a gem!" A few minutes later I went upstairs and noticed that a book that was once laying on the floor in our hall bathroom was no longer on the floor. I walked into Berlyn's room to get her pajamas and all the blankets in her crib had been folded and there was a stack of clean folded laundry on her glider. I kinda stood there in disbelief and smiled...we moved into Brooke's room and it too had been cleaned...bed made, a basket of folded laundry on the floor, toys put away. I couldn't believe it. Brayden's room...the same deal. My room, yes...it too had been redeemed. Every piece of the probably 5 or 6 loads of clean laundry that once sat in a pile on my bedroom floor had been folded. Somebody (or somebodies) came and cleaned my house for me. I cannot describe to you the love that warmed my heart at this realization. His hands and feet, humbly serving my family and caring for our every need. With nothing but a full heart of gratitude, I am speechless.

Oh Sovereign God, You are too much for me at times...overwhelming me with Your goodness. You are faithful and worthy. The problems of life that seemed insurmountable yesterday, seem to be but a drop in the bucket today. My son getting healthy and well is all that truly matters. Seeing Your Hand in this situation just makes every other worry fade. I stand amazed at the way You work through us and in us...evidences of You are everywhere; how could one not believe? It's in Your body of believers who work on Your behalf as Your hands and feet...it's in the tangible and intimate ways you reveal Yourself to me when most needed....it's in Your creation that declares Your glory. Thank You Father, for all that You are and all that You do. You do not fail.
You are my Rose of Sharon.

Monday, March 5, 2012

As the night grew closer to morning, so did the weariness that stirred within. I cried myself through the entire ride home from the hospital tonight with a lump in my throat the size of Texas, tears that would not cease, and a pain in my heart that seemed unbearable. Sobs. The kind you choke back and try to silence because you don't want your little girls to worry and you want to stay strong for them, but inside you feel you are falling apart. Unable to see the light at the end. Feeling as if our problems are mounting with no hope at all.

And then we arrived home, to a vacant, eery, quiet house...and through tear-stained eyes, I opened the door and was immediately greeted with the smell of a home-cooked meal that permeated the air from a shiny red crockpot that sat upon my kitchen counter, courtesy of a friend who loves deeply. The countertops were decorated with bags of groceries. The fridge stocked with even more. I checked my facebook messages and found an overwhelming army of support, love and prayer that perked my spirit and put a little strength into my backbone. After putting my sweet girls to bed and spending 35 precious minutes of heart-pouring conversation on the phone with a friend, I felt comforted. I dug into a delicious meal that warmed my stomach as well as my heart and I felt loved.

I reflected on the day...the answer to prayer in finding more direction toward the cause of Brayden's illness...the unexpected arrival of my sister, niece, nephew and mom as they walked into Brayden's hospital room this afternoon...the flood of tears and emotion that too easily broke loose and rushed out of me with the simple touch of a mother's much needed hug. Comfort. Heaven's gates stormed on our behalf. Family close. Friends nearby. All available to help and aid at the drop of a hat, and I was overcome with emotion.

After a bowl of beef pot roast, potatoes, and vegetables (one of my favorite comfort foods), and a sampling of homemade soup, I started to put away our "gift of grocery" and found a bag of mini oreos, opened them, and an unexpected smile painted across my face. It took me off guard. I dug in for 2nd's and 3rd's and caught that same smile reappearing. And suddenly, something inside whispered to me "everything is going to be alright." I felt the hopelessness fading, the stress a bit relieved, and the strength slowly returning.

Feeling as if maybe God has allowed this very thing to happen to us to show us how very loved we are. Gift giving: one of my love languages. I love to be the giver, the one being the blessing. Much more humbling to be on the receiving end. But perhaps this was all part of His perfect plan. To make me mature and complete, not lacking anything. To make beauty of my soul. I'll accept and receive that.

I end tonight exhausted, depleted, yet feeling blanketed in comfort, hopeful in tomorrow, and strengthened in faith.

Thank you. For being His hands and feet for us.
Good night.