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'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...


  1. Amanda, I am so sorry you guys are going through this again. I hope this episode is shorter lived than the last one. I think giving homeschooling a try would be an excellent idea. It will be an adjustment, but I think you all will find the relaxed schedule a relief. The ADHD symptoms and the CVS symptoms will likely both subside with the lower stress environment. You would be a great HS Mom, I am confident that you can do it! You all continue to be in my prayers.

  2. I agree with Jill, you would be a great HS mom.

    Praying for Brayden's health and for answers regarding school. Missed you tonight, but enjoyed the time with Brayden and Darcy.

    XOXO, MamaJo

  3. i cry tears for you & my heart aches with you.

    but it is good to hear your heart. to listen in as you process...because even in your wrestling and grieving, i hear a daughter trusting in what she KNOWS is true about her God. and that makes all the difference in how you walk through this.

    i so appreciate your authenticity in this post. sometimes our world is filled with darkness and pain and it presses in so heavy that we wonder if we will suffocate from the weight of it all. david poured out these themes time and again in the psalms. and as he penned in psalm 27, I believe it is true for you, for darcy, for brayden:
    "I am still confident of this:
    I will see the goodness of the LORD
    in the land of the living."
    14 Wait for the LORD;
    be strong and take heart
    and wait for the LORD.

    It is okay to grieve, to hurt for your son, to ask all of the questions you are asking. God's heart for you is not threatened by your pain, by your need. Bring the weight of ALL of this to him. You weren't built to bear the weight of tomorrow's looming uncertainties. One day, one moment at a time.

    Remember to abide in the vine. His strength sustaining & nourishing you. Your strength & your resolve & your faith may fail, but he will not. ask for HIs filling, for his power made perfect in your weakness. He will not turn you away empty handed.

    As far as homeschooling goes...that sounds like it could be a really great solution for balancing the adhd & cvs triggers. i understand your fears about it...but I can't imagine anyone MORE equipped to teach Brayden than you. you may struggle with time management, but from what I hear, as you get into a groove with homeschooling, often it only takes a few hours a day. it may be end up being a HUGE blessing for your just can't see the gift wrapped as it is. i'll be praying for you as you weigh your options and consider it. it may not be for you. But I am sure if God were leading you in this direction, YOU would be an AMAZING teacher for your boy.

    we love you all so much. keep walking, just one step at a time, moment by moment.
    praying & believing You will perservere & You WILL see the goodness of the Lord in the land of the living,

  4. Oh, sweet girl, my heart aches for you. I am crying out - BEGGING - our God to heal that sweet boy. And, in the mean time, bring you peace.

    Your words are raw and bleeding and I cannot imagine the depths that they are pouring from. But, I know this, they are REAL ... and God only asks that we bring our REAL to Him. He is a Big Boy and can handle our frets, fears, tears and even anger. He knows. Remember, HIS Son hurt too. He KNOWS your heart.

    And He knows you trust Him.

    And He will not let you down.

    He is HE, even in this.

    He is I AM, even in this "is".

    And, sweet thing, He loves you so. And Brayden. Brayden was His first. He loves Him so.

    I will not stop praying. I will not stop believing. I will not stop KNOWING, He will come.

    Love you sweet friend.