Thursday, April 5, 2012

Reason to sing...

Of all the 3 cases of CVS our pediatrician has seen in his 30+ years of practicing medicine, Brayden's is the most severe. Of all the cases the medical staff at the hospital has seen of CVS, they too have never seen a case so severe. At least that's what they say. Have I told you this is a viscous debilitating illness? Well, it is. In Brayden's spiraling down days, staff would come in and have nothing to say, except "I'm sorry." I'd have nurses come into my room and just give me a hug as I sat on a chair near Brayden's bed and just cried. Dismay covered those hospital room walls like dingy wallpaper...a holder of pain and secrets untold. I hate those walls.

Our pediatrician came into Brayden's hospital room one day last week and told Darcy that he could not believe how well we were handling this as parents. Little did he know that at that precise moment I was outside in my car cursing and screaming at the top of my lungs, yelling and declaring to Satan, "You do not have authority over this situation! In the name of Jesus Christ, you do not have authority over this!" It was our worst day yet at the hospital and a day too heavy for me to bear. Probably the worst, darkest, heaviest day of my life. I will not chalk it up as coincidence that after that screaming match I arrived home that night and received a very surprising phone call from my son (who had not talked in three days and had been suffering in severe pain for days with no improvement). He was happy, being silly, and I could hear life and joy in his voice. It was the best phone call I think I've ever received, and it ended a heart-wrenching day with a glimpse of hope on our horizon. No, did not and will not have authority over this situation. You may roam the earth hungry to devour, steal, kill and destroy...but you will not have this family.

Thursday I woke up with a dull ache in my heart, and a shallow pit in my stomach. Not enough to debilitate, but enough to allow my mind to wander. And for fear to take ahold of it like a jackhammer spiraling down deep into my spirit. The thought of Brayden being discharged should have brought much joy. I should have been happy. But fear sucked it up before it even had a chance. What if he's not better and we get home and he takes another turn for the worse? How do we go back to "normal" when nothing really feels normal and nothing really is normal anymore? How do I fake my way through that? I hate this. He will have another attack, but we have no idea when it will happen. A few days from now? A couple of weeks? A month? It's like he's a ticking time bomb, and we need to handle him with delicate care because we don't know yet what his triggers are, or when detonation will occur. Most CVS sufferers spend years discovering their triggers, and then years discovering the best concoction of medicine, treatment and lifestyle that best fits their illness and the management of it. It is not a "one size fits all" illness. We know we have years of work ahead of us.
It seems daunting.

Brayden was discharged from the hospital Thursday. When we left, my words were few. There was a heaviness upon my heart, like I was walking chest deep through water...knowing that there were still miles ahead to trudge through. I felt like a toddler in the midst of a tantrum. Wanting to dig my heals down deep in utter defiance, protesting the reality of what was before us...while equally desiring to succumb to the helplessness and loss of control by falling limp and boneless on the floor. We arrived home to the "welcome home" banner we had yet had a chance to take down from our living room wall from the prior hospitalization. It greeted us with an ugly and eery familiarity.

Here we are now 2 days post-hospital. We're already making some major lifestyle changes. Starting with our diet/eating habits. There are many foods which have been known to trigger CVS episodes. Our gastroenterologist has advised us to keep Brayden on a strict diet and avoid these certain foods (cheese, chocolate, citrus fruit and their juices, MSG, pork and all pork products, beef extract, yeast extract, peas, broad beans, game, name a few). Did you know there is yeast extract in chicken nuggets? And vegetable soup? At least in the ones found in our house.

So, in an effort to make this a positive family lifestyle change, we took a trip to Trader Joe's yesterday (with all three kids). It was interesting as we fumbled our way through the store reading labels and trying to keep the kids from running in all directions. We were "that" family...the one with loud kids taking off left and right while their parents stood by clueless. They have kid-sized grocery carts there for the tiny shoppers who want to get involved. All three of our kids grabbed one and we made our way through the aisles, each with our own cart in hand. It was loud, chaotic and rather comical. At one point Brayden felt so fatigued he had to crawl into the back of our cart because his "legs were so exhausted." ($150 later we had a few groceries, not sure exactly what though?! And someone please tell me why eating healthy has to be so expensive?)

When we left Trader Joe's, Darcy and I loaded the kids and the groceries into our car, closed the doors, stopped and stared at each other in the parking lot, in disbelief...with slumped shoulders we both let out a big sigh at the same time...and laughed. Is this our new normal? When we got home it was even more of a project putting all of the groceries away...making room for them, and reading the labels and removing all of the food that had once fit so comfortably and safely within our cupboards. We also kept pulling out groceries from our bags that we didn't even realize we had bought. That's what happens when kids have their own carts and you blast through a grocery store in a whirlwind. We ended up buying about 12 cliff bars and protein bars without even realizing it.
We are learning as we go.

Today I woke up and my spirit seems lifted. I feel a bit more strengthened. Instead of walking through engulfing fear with a few moments of peace in between, I feel a shift...there are more times where I am walking in peace with a few moments of gripping fear that struggle to take ahold. But, I am refusing to live a life of fear. I am, by nature, not a worrier. So, moving into a place where fear taints every area of my life is foreign to me. I press on. We have no choice but to walk full force through this fear, whether we like it or not. There have been moments where I have cried out to God and told Him, "I hate this journey." And I do not use this word lightly. I've despised each step I have had to take and have told God I am unqualified to take this walk. There must be another route. Is this how Abraham felt when leaving "home" and all he knew? Did he feel this gripping fear and disgust when asked to sacrifice his son Isaac? How about Esther...was she riddled in fear when approaching the king unsummoned and uninvited? Or Moses when ordered to free his people and lead them out of slavery into the unknown? How about Joshua fighting Jericho? Or David before Goliath with nothing but a stone and a sling? Did they all feel as ill-equipped and unqualified as I do? Lord, give me the faith of these old testament heroes for this journey ahead.

We've read a few research articles that have suggested that chiropractic care has been helpful for some CVS sufferers. In addition, a diet of certain vitamins, minerals and natural supplements has been beneficial. Our whole approach to modern medicine is changing. I've always been intrigued with holistic medicine, but never put in a position where we were desperate to find healing and wellness and willing to do all we could do to attain it. We have a couple of holistic doctors we will be calling next week to see if they can help Brayden. This morning our breakfast included smoothies of kale, flaxseed, carrot, coconut milk and fruit...uncured beef bacon, whole grain pancakes, and kale, broccoli and mushroom omelets. I didn't realize our "magic bullet" would ever be so handy.

We've also decided we are not sending Brayden back to school. I am jumping in, feet first, into home schooling. Yes, I am now a home schooling mom. Wow. Just saying that makes my chest tighten up a bit. Changes. A journey we had not planned or foreseen. All happening so abruptly. Most people have months to prepare for this...and may even spend years in prayer preparing their hearts for this. Time is not a luxury we have been given.

I've said before that it feels as if there has been a death...a death in the life we once knew. And as I look outside, and watch a squirrel trot across our sunkissed backyard with nothing but walnut in mouth and carefree speed, I am reminded of life. Life will go on. My prayer and belief is that with the death of our old life, God will redeem and resurrect new life into our family. Life abundant. Many of these changes are things that have tugged at my heartstrings for some time. I just never had the courage or conviction to go through with them. Perhaps God is allowing this to happen because He knows this will be the best thing for our family...Homeschooling, healthy/natural eating lifestyle, holistic medicine. And perhaps He knew the only way for us to get here was to walk through this, even if it meant walking through fear and inadequacy.

These changes and this illness showed up on our front porch like an uninvited, unwelcomed guest. Yet, in the midst of this dark journey I am finding reasons to sing. Sometimes they just appear out of nowhere, and sometimes I have to go searching for them. Sometimes it flows out in full song, other times it's just a chorus, or a chord...and in other moments it's all I can do to barely whisper a single note. Some days, my voice sings loud and clear, and on other days, it can't muster a sound. My mouth stays shut, and only my heart is able to open wide and lift up song. But I know He hears. And my life lyrics through this darkness and fear, and through light and triumph, will always be "blessed be the name of the Lord."
That is one thing I am resolved not to change.

We are all home together now. And with this, full song is lifted. The past two nights in a row I have had the blessing of holding my son snuggled up against me, and softly rubbing his little head until he was fast asleep in my arms. I could've rubbed that sweet head until my fingertips were numb. My poor guy doesn't quite understand all of this. All he keeps hearing is, "No, you can't have pizza. No, you have to put that piece of chocolate back. No, we cannot go to your cousin's birthday party Friday. No, we cannot drive out to celebrate Easter with my family today as once planned. No, you may not jump on the trampoline. No, you cannot go on your class field trip. No, we cannot go to the zoo with your Grandma and cousins today either, etc." It would not be wise for us to travel a far distance and spend time in an environment that brings too much excitement, germs, or the need/desire for much physical excursion. It's just too risky. So, we sit in disappointment and offer new suggestions for engaging in safe "fun" as we work to get him strong and healthy again. He cries and says, "I hate this illness." I understand son. I do too. He says, "I feel like I've done something wrong," as he blames himself and struggles to understand that our "no's" are not out of punishment, but out of love for him. In a spiritual sense Brayden, I sometimes struggle with this too. It seems cruel that the child who said "mom, the flu is the least favorite illness i like" is cursed with an illness that is plagued by chronic uncontrollable vomiting and pain.

Today's devotional talked about how Jesus, while dying on the cross, still found resolve to pray. "Father, forgive them, for they do not know what they do." Luke 23:34. When darkness consumed Him and He hated each step of His journey, He still looked to His Father. "Neither the weakness of the past nor the pain of the present could prevent Him from continuing in prayer...He continued in His heart crying to His Father, and no pain and no weakness could silence His holy supplication." And so we use the example of Jesus to continue on in this journey. We look to Him for provision, guidance and healing for all that still lies ahead of us.
And we pray on.

These moments of singing amidst storm seem as mismatched as a steady rain shower that appears unexplained and persists through a sun-filled sky on a mid-summer day. Sun and rain. Not what we would expect. Son and reign. Not what we deserve. And yet, that's what we've been given. No other time of year sings so loudly of LIFE as this. Easter weekend...where death was dark and hope was dim on one day. Yet, around the corner of tomorrow, Life and Hope are redefined. And while fear still colors our path, I'll keep walking forward with an open net, ready to catch hope and life in new ways revealed.
And this gives me reason to sing.


  1. Your words are powerful. Thank you for sharing your heart, laying it out bare for the world to see. It's a testimony of God's faithfulness, even when it doesn't seem like he's being faithful. Keep writing, because your journey unfolded will resonate with others--he doesn't allow us to go through such trials without bringing glory to himself through them. (Romans 8:18) I love you friend, and I'll be there for you each step of the way.

  2. Do you know that you can write off the cost of the food for your taxes because of his medical condition? Do you know you can also write off air filtration systems and such because of illness. Do you know that you can ask the school district to provide you a teacher because he has a medical issue? You'll have to fight, but it can be done. D0 you know that my magic bullet also gets a lot of use? Do you know how much your family is loved? And do you know how much we will be there to help? And do you know I used to be a teacher? Call if you need help.
    I'm just a yell away.

  3. I love you. Teri & Vicki said it all ... but I need you to KNOW that I love you. Alot . A LOT, a lot. Like, so very much.

  4. i love you. i was so eager to hear how you've been doing the last few days...i kept checking facebook to see (i figured you'd be too busy to update your blog...but i can see you've been 'writing to breathe' as your process through this). now, with my few free moments today it has been my delight to peek into your heart and read for the last half hour how you are coping. thank you for sharing in the details. i feel like i know better how to pray.

    my own head is cloudy & fatigue steals any hope of elegant words (haven't slept much since sat. caring for sick big kids and a newborn inbetween). but in all inelegance, i just want to say that He WILL color your world beautiful each day. sometimes living in the tension of broken pain and joyful hope is one of the most difficult things in the whole world. some glorious days the veil between this world and His Kingdom come becomes so thin, and all our pain and suffering & his working it together for our good briefly appears like a rainbow in the sky...and it all makes sense. but most days, most days we walk in cradled hope, clinging to him. and on the worst days, we beg for him to give us the faith to just abide cause without it we fear we may slip from his grasp, the weight of our pain crushing in.

    you walk in this tension with resolve. and it brings a big honkin' smile to my face to picture you cursing satan out in your car. i may try this next time.

    as far as homeschooling just wait. you are going to find your groove and it is going to fit. for as long as its supposed to. you never know the permanence of this season. as quickly as it has come upon you, you may be released from it. but for now, take it one day at a time. day 2 made me want to cry for you. those days feel like slow drowning with anxiety and "Lord HELP ME not to SNAP" sucking the air right from your lungs. i hate that feeling.

    deep breaths & big sighs. he gets it.
    and if it makes you feel any better, i haven't had the chance to put a bra on OR shower yet today either. and i smell like sour milk. and diarrhea. and vomit. now that i think of it...haven't even brushed my teeth.
    my poor husband.

    you keep looking for those reasons to sing...and one simple note at a time, you are making His praise glorious, inviting him in to "take brokeness aside & make it beautiful".
    he WILL (and is) doing it. believe it. and sing on.