Saturday, November 10, 2012

the Dot Connector...

I am simply amazed at the way God has worked in our lives and in my heart over the past week.  As shared in my previous post, there were many things that were muddling through my heart and mind that I have recently asked God to give me the wisdom to understand.  Discernment.  Clarity.  I've prayed this over various areas of my life that were keeping me tangled up.  James 1 says He is a God who without finding fault gives wisdom generously to all who ask.  Can I simply tell you from every depth of my being that this is true.  This is a promise.  If you are confused, uncertain, needing perspective or clarity with anything, try it out.  He will deliver!

This week He delivered much more than that too.  In more than one way He showed up and blessed me big.  Through relationship...through circumstances that stress...through answers...and protection...through provision.  He has a Holy way of connecting the dots in our lives.  After months of things seeming like a giant mixed up ball of scribble and pointless, aimless dots.  He comes in with His divine marker and connects them all...marking my heart in the process, and showing me the outline of the beautiful art He's been drawing of my life.

This past Tuesday and Wednesday Darcy, Brayden, and I drove out to Wisconsin to meet with Dr. Li.  He is the CVS specialist I have mentioned before on my blog.  The best of the best.  The Dr. with the most knowledge and experience with this disease, treating over a thousand patients with this illness.  He has dedicated his life to the research and treatment of CVS, and is sought out internationally.  Next week he spends two weeks in Asia championing this cause.  I'm in awe that our Almighty God found a way to connect the dots and lead us to this doctor.  We have waited over 6 months to be seen by him and I was really praying (and asking others to pray) that our trip would be worthwhile.  It far exceeded our expectations.  There was excellence all over it.  We left there with a wealth of knowledge, perspective, a renewed sense of hope, and hearts of gratitude as we recalled and remembered all the ways God has been faithful to us over these past seven months.
Brayden and Dr. Li

I will try to explain this as concisely as I can...basically, Brayden is not a ticking time bomb as we once thought.  Although Dr. Li says Brayden is in the top 10% and his case is one of the most severe ("in the deep" were his choice words), it's not as if one simple unknown thing will set him off and trigger another episode, at any point, as we once thought.

They best described CVS by using this: "The Speed Limit Analogy."  Imagine that our bodies all have a set speed limit in which they function at their best.  Everyone's body also has a gas and a brake pedal.  The sympathetic system (our bodies fight or flight response) acts as the gas pedal.  If you were face to face with a lion in the jungle, this system would kick in full force.  Your body's brake pedal is your parasympathetic system, or your body's ability to shut down, relax, and restore itself.  In Brayden, (or any other CVS sufferer), once they hit a certain speed limit, their bodies can't find the brake pedal.  There is no turning back.  Good and bad stress won't necessarily cause an episode, but it will act as a lead foot pressing on the body's gas pedal.

So, let's say Brayden's healthy speed limit is 55mph.  If he is to catch a cold, it may bring him up to 65mph.  Then perhaps he has a soccer tournament over the weekend, and the physical exertion brings his body now up to 75mph.  On top of that, we let him have a sleepover with a friend and that puts his body up to 85mph.  If 85mph is his threshold, it will send him into a full blown episode in which there is no turning back, in which it is certain he will require hospitalization and ICU.  Brayden has been healthy for 7 months.  The severity of his illness resides in the fact that when he has an episode, they are intense and long, always requiring hospitalization.  Some CVS sufferers may have episodes more frequently, but they may only last 24 hours or a couple of days in which they do not have to be hospitalized.   So, as parents, our main goal is to try to keep Brayden's engine cruising along at a 55.  The medical staff at the clinic were very adamant that they do not want CVS to dictate the life of a sufferer or their family.  In fact, they said when weighing out various factors that contribute to lifestyle and making life choices, they want CVS to be near the bottom of that list.  They said the only time there is an exception to this, and the only factor that must not be compromised is sleep.  CVS must be at the top of the list when  deciding/enforcing matters of sleep.  We have been instructed to manage and limit his sleepovers and ensure that he regularly gets adequate sleep and rest.  I like to think of these things as "cruise control" for our boy.  We were also given a new treatment plan when/if he is ever hospitalized again, and some practical tips we can use at home to force his body to bring down his speed limit before it has gone too far. (We think some of the scares we've had over the past 7 months have been instances when his speed limit has been creeping up close to his threshold, but hadn't yet exceeded that "past the point of no return " limit).  Basically, we were told to keep doing everything we have been doing and to incorporate some new tips and practices along the way.

Did you hear that?  No more ticking time bomb, or need to be living in fear.  A new perspective can be life-giving.  (and i mean that in a physical, emotional, and spiritual sense).

More dots connected.

Another huge plus is that Dr. Li lifted every food/diet restriction off of Brayden (besides MSG...which we should all avoid anyway).  He does not believe there is a strong correlation at all to food and CVS...and if it was something that acted as a stressor/trigger to Brayden, it probably would have been noticed long before he even had a CVS episode.  In other words, if certain foods never bothered him in the past, they shouldn't bother him now or act as a catalyst to an episode.

Brayden's only question for the doctor was this:  "Will I ever be able to have ribs, pizza, and chocolate again?"  So you can imagine the shock and excitement that played out in that room and our hearts when we heard his restrictions were lifted.  Praise the LORD for this blessing! This sweet piece of news was the icing on our cake.  After our 4 hour long appointment, we went out to lunch.  I simply have no words for the joy in these moments.  Over lunch and a full rack of BBQ ribs, our boy took a breath, looked up from his plate and said, "I feel like I have a new, fresh life!"  (this mama couldn't hold back the tears).

And in that moment, I caught a glimpse of the art God's steady hand has been illustrating over and out of us.  Dots creating reason and beauty.

It was a whirlwind trip to Wisconsin.  An 8 hour drive there...with a quick spur of the moment  (characterized by an unexpected God blessing) stop in Chicago, we didn't arrive Tuesday night till after 9pm (10pm our time).  Our appointment was for 8am the following morning (7am our time).  It lasted 4 hours as we met with Dr. Li, a Clinical Psychologist, and the rest of his team.  And then we turned around and drove 8 hours home (+ stopping for food/gas) and didn't get home until after 10pm Wednesday night.  We were exhausted!  Then I had Bible Study Thursday morning and a two and a half hour training Thursday night and then co-op from 8-noon Friday morning.   I feel like I am still unwinding!  But, I have a full I keep running on that! For the first time in a very long time, I feel more like myself..and it feels really good!

My previous post I shared a lot of what I had been struggling with over these past 7 months...issues and feelings and insecurities that took me off guard, left me feeling much unlike myself.  I prayed that God would give me wisdom to make sense of this too...and with an 8 hour drive home from Wisconsin, he did just this.  Not only was our trip validating on a medical end, it was equally validating spiritually...

as God again connected more dots.

I find it no coincidence that the assigned reading homework for this past week of my Stephen Ministry Training (that's another blog in itself... I currently just finished my 9th week of a 50 hour training program to become a Stephen Minister at our church.  I'll finish mid-February.  I'd love to share more of how God worked in my heart to bring me to this ministry, but that'll have to come later.)  Thank you all who have beared with reading through this long post up to now!  For me though, these are written recollections of my joys and struggles and God's faithfulness through it all.  A galaxy of connected dots in a star-filled sky that had once been as cloudy and dark as deep night.  So, they are worth noting, even if nobody besides myself ever reads.

"By the word of the LORD were the heavens made, their starry host by the breath of His mouth."
~Psalm 33:6

So, back to that 8 hour drive and my assigned reading.  The past couple of weeks have been about crisis, boundaries, co-dependency, passive/aggressive behaviors, assertiveness and the like.  This week in particular I read in-depth about Boundaries and Crisis.  While studying CRISIS, I couldn't believe what I was reading.  It was a wrap-up of my life over the past 7 months.  It validated everything we've gone through. Everything I had just blogged about two days prior was printed in word form, in my text book, on my lap, while sitting passenger seat in my car.  

I often looked at our experience as a short term "crisis" that ended after Brayden's hospitalizations were over.  But I am learning that this was not the case.  That crisis put us in crisis mode for the many months to follow.  And because Brayden's illness can be categorized as an "accidental crisis," ("one that's caused by unexpected events that bring about threatening change, such as serious illness, and forces a person to find new ways of living and coping.") it's no wonder I haven't felt like myself in over 7 months!  There were several other areas of "stress" (good and bad) that increased our crisis score considerably.  When looking at these "stress/crises" tests and charts and scoring ours up, I again began to thank God for all of His protection and His faithfulness along the way.  It could have been a lot worse, but I am beginning to more understand why things have played out like they have, why certain roads were traveled down that perhaps wouldn't have been had the variables been different.  But, it's ok.  This is the story of our family, and God allowed each and every part of it.  And I'll praise Him nonetheless.  ("Should we accept good from God and not trouble?"  Job 2:10)

While each person will experience a crisis uniquely, there are some typical patterns of response (basically, much of what I have experienced over the past 7 months...had I known it was "normal" I wonder how much easier this road would have been).

Typical Effects and Common Patterns of Response to CRISIS (taken from "The Stephen Ministry Training Manual"):

  • Lowered Self-Concept ("Crisis often brings a sense of personal failure or inadequacy" YEP! Just wrote about that! )
  • Disorganization ("People in crisis have to deal with many challenges at once, have difficulty concentrating and take longer than usual to do common tasks.  They also may have difficulty remembering things." A state of overwhelmingness)
  • Preoccupation with Self ("People in crisis spend a lot of time adjusting to their circumstances.  as a result, they frequently have little energy left to invest in relationships with others." I think my exact words in my previous post were: the bulk of my efforts and energy hasn't left the four walls we reside in.")
  •     ("People may withdraw from normal and helpful relationships and social functions such as church."  This was more of my husband's response)
  • Irritability ("People in crisis may express strong feelings in ways that alienate or drive people away.") 
  • Shake-Up of Values ("Crises tend to shake up a person's beliefs, opinions and values.  People in crisis may find that life seems unreal to them-  the life they once new is no more. They have to find a new way." How many times have i said this statement alone on this blog?)
  • A Reexamination of One's Relationship with God ("A crisis may cause a temporary loss of faith.  People may strongly sense that God has abandoned them.  They may forget God's care,love, and forgiveness.  Even Jesus cried out from the crisis of the cross, "My God, my God, why have you forsaken me?" Matthew 27:46.  A person in crisis may experience a lot of guilt and anger as well.")
I can't begin to tell you how validating it was to read these words and feel "normal," and that I have not been "alone."  It explains why I've felt hypersensitive to all that is around me and events that have happened along the way.  It explains why life has felt like an overwhelming blur.  With a professional degree in all of this, and experience working as a therapist, you'd think I would and should have known all of this.  That it'd be obvious to me.  But when you are standing in the middle of a hurricane, it's hard to see clearly.  Perspective is skewed.  The obvious not seeming so obvious.

I have such a heart of compassion for people who have walked through long journey's of crisis.  I want to walk alongside of them.  I'm so thankful for the slow and steady support, encouragement, and friendship we received along the way.  The grace-filled "tortoises" in my life.  I'm actually grateful that all of this "textbook knowledge" eluded me in my own walk.  Because compassion grows within you when you are walking through the trenches.  When you don't have all the answers.  When you have to rely solely on God to sustain and carry you.   It's where learning, and shaping, and refining occur.  It's where the dots are connected.  And faith blooms.  In the thick of the fire.

So, Brayden's not the only one who feels like he's got a fresh start at life.  I feel it too.  Remembering  with humble gratitude the Author of Connection.  The One who has carried us through this all.

My more than faithful Dot Connector.

All praise and glory to Him!


  1. I am so glad you were able to get the answers you have been craving, in all areas. It's a good feeling to know that we are not alone, and there is hope. Brayden looks great, and I'm sure is very relieved to know that this illness does not need to dictate the rest of his life. Also, thank you so much for this information on crisis. I can so relate to all these "symptoms" and just when I thought we were coming through the other side, we may be entering crisis mode yet again. I may need to call on you for some coping skills, I'm not sure I can do this on my own! So happy for you and your family Amanda, this has been a long time coming! I look forward to hearing what the future holds for you guys!

    1. Oh Jill! I know you have had a lot of transition over the past couple of years with the adoption, change and challenges of family dynamics, the special needs, job changes, move to a new state away from family, plus homeschooling and being a nurse on top of all of that! It's no wonder you would find yourself in crisis mode! You always seem to have it all together and pull yourself through. You and Jim are a great example and you're raising an amazing family. I admire your strength and perseverance. Hang in there. If there's anything in particular I can pray about for you, inbox me on fb or at Stay strong in the Lord. He will see you through!

  2. Gracious! I would love to talk to you! I am SO happy for Brayden and for all of you for the information and freedom you were given.

    Thanks for posting the portion about "responses to crisis"...I needed to read that. I am there.

    1. Charity, I would love to talk to you too! I think about you often and you, Brandon, and Brynn are regulars on my prayer journal. I admire your strength too, and your trust in the Lord. I know that heart of yours must be so weary as you try to make your way, putting dreams and desires on hold, while your hubby is serving and away. I can't imagine the lonely you feel and the longing you must feel for stability, security, comfort, a settling in and planting of yourself and your family. You are courageous! Surely the Lord will continue to provide and carry you! Praying tonight that He lathers an extra measure of grace onto your spirit, fills up all your lonely with His love, replaces your "dreams on hold" with His peace, and gives you strength to go one more day farther. Because that will bring you "one day closer" too! Praying Brandon stays safe and that these days and weeks and months go quickly and that your day of reuniting will be here before you know it...that these holidays will bring joy even in your longing. That He will be your portion and His grace will be sufficient. I love you Charity! I can't imagine what you're going through...but I pray. And I love you. Call me anytime. My number hasn't changed. Do you still have it?