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.)

3 comments:

  1. I just love you. I'm so glad Bray is healthy and home. Praying that normalcy returns quickly. Thank you for sharing your story, HIS story of faithfulness. It's life and truth in a world that is lacking. You're Golden--He's got you. <3

    ReplyDelete
  2. I followed Brayden's story on your facebook page. I prayed SO hard for him and had tears running down my face when I saw your post that not only was he coming home but that you had an answer as to why he was sick. I admire you SO much. Throughout this whole process you had such unyielding faith. You always knew that God was with you and your family. I feel like if the same happened to my son, I would be so angry about it. I wish I could be more like you and have the faith that you have. I just want you to know I think you are an amazing person and mother. I know how the "after effects" of something like this can be. When my mother was very ill in the hospital for months at a time, after it was all over I was in a very dark place. Even though she was ok and came home, I still couldn't shake off what I had just been through. It took a long time and some very dark days but I got through it. I have total confidence that you will too, just give yourself some time.

    Thank you for inspiring me so much. :)

    ReplyDelete
  3. I am just a mess after that. I am so thankful that he is healthy and home where he belongs. I praise our Lord for His faithfulness - in healing and, THANK YOU LORD, in answers. It is not a coincidence that we are in this study ... Blessed is he who remains steadfast under trial. For when he has stood the test, he shall receive the crown of life which God promises to those who love Him.

    You love Him. You are steadfast. You are Blessed ... and you are raising a warrior for His Kingdom. Praise His Holy NAME, He shall be glorified!

    Love you my friend!

    ReplyDelete