Greatness Requires Risk

As I lay in bed last night I had what seemed like a million thoughts floating through my head.  Every single little worry was beating at me, pounding at my resolve to have faith and trust the Lord.  My daughter explained to me yesterday how bees will bump you several times when attacking a person as a group and finally they'll sting you.  I felt that way as I tried to fall asleep, like little bees were bumping into my brain over and over.  I woke up feeling stung.  

I suppose the reason I felt the way I did as I rose from my bed was because on the eve of my son's one year anniversary of being admitted to PICU at Meritcare Children's Hospital in Fargo, ND I was about to be tested for the same syndrome that landed him there.  I didn't even think about the timing when I made this appointment.  And I guess I didn't think it'd have any emotional affect on me.  It's not like I'm worrying over just this one thing but it's a whole list of things all happening at once that I can't seem to pull out of my head and deal with.  I describe this to my husband, Don, as a ball of yarn that needs unraveling.  But it's almost like there's so much yarn that I can't find the place at which to begin.  So what do I do?  

Some of my answers came last night.  Don and I tuned into a movie called Extraordinary Measures with Brendan Fraser, Harrison Ford and Keri Russell.  It's based on the true story of the Crowley family and how the father, John, went to extraordinary means to find a cure for a disease that would take the lives of two of his children by age 10.  At one point in the story he's faced with an enormous decision; he's been offered a 40% raise and promotion in his company which also provides health insurance for his 2 sick children or he can give that up to fight for a cure which could leave him penniless, without insurance and eventually could end in the imminent death of his 2 children.  He's faced with choosing between the daring and the safe.  He chooses to walk away from his promotion, risk it all and fight for his childrens' lives.  At one point later in the movie when things are their darkest he finds himself regretting his choice.  It hit me then that striving for greatness always has its risks.  But you only achieve greatness by taking those risks.  

So, this brings me to one of those 'bees' bumping around in my head.  Ten years ago after 9-11 Don felt called to leave USAirways.  He was making good money, we had lots of nice benefits, we were happy in our church with lots of people surrounding us in our every day life and we had a nice home.  But God called us to something else.  And we knew it.  So we gave it all up and moved to South Dakota to eventually develop a summer camp.  We're in our second year now.  But again there's this call to let go of security.  Don has a 2nd job that pays well, provides insurance and every 2 weeks I know he's bringing home a pay check.  The empty PO Box isn't as awful to peek into when there's a check on the way.  And the insurance.  Did I mention I got tested for APS today?  If I test positive and lose insurance I am scared that future insurance companies will consider it a pre-existing condition.  APS can be a lot more costly than thyroid disease.  I know this for a fact as my son's bills piled up last year.  One Dr. bill for Sam was over $40,000.  God provided, yes.  But you know already that I am a worrier.  

The thing is though that ministries don't build themselves.  Supporters are based on relationship and the director of non-profits has to seek relationships with individuals and churches that see the vision and will support it prayerfully and financially.  Supporters go through cycles.  Some give for years faithfully, some come and go.  Don has to be able to reach out to new people and churches all the time in order to continue building a team of people that enable us to carry and fulfill the vision.  Right now our ministry is being carried on the shoulders of a small group of people that are faithful each and every month.  But that small group cannot carry the entire cost of what it takes to keep a missionary in the field, put kids through camp each summer and keep up on construction needs.  Don needs to fund raise.  But for Don to fund raise, he's going to have to let go of his full time job and make the ministry his full time pursuit.  I have to let go again.  I have to have faith when I feel like I have none.  Here I go worrying again.  

John Crowley had faith that the research needed to save his kids lives was correct and he fought for the funds to be provided for it.  He let go of everything for the lives of his two kids.  Greatness requires risk.  Think about how many kids on the reservation here will be impacted with summer camp each year?  How much are we willing to risk for not just 2 children but for hundreds?  And it's not just their physical lives we're talking about!  What about their spiritual lives?  How much are we willing to risk for the life of these kids who have never stepped foot into church?  Who have no idea who Jesus is and have no idea that they are loved? 

I took a leap of faith today by getting tested for APS at my Dr.s request.  I don't know if I'll have insurance to cover it if I test positive and one day need treatment.  I don't know how many empty PO Boxes I'll have to stare down from day to day wondering how we'll keep operating month to month at 1/2 our budget.  Right now, I don't even know if any churches will open their doors to hear Don share the vision of our ministry.  And maybe we're not even being asked to give up the security of that bi-weekly pay check.  I don't know yet.  I think I'm just supposed to be willing right now to let go if asked.  

Greatness requires risk.  What are you willing to risk?  I leave you with the first Bible verse that showed up on my phone this morning.  (I have verses sent via text so I'm reminded all day long!)

The LORD will fight for you; you need only to be still.” Exodus 14:14

What a powerful verse!  The greatest risk for me is to first trust.  Then let go.  

Taking a look back

One year ago today our world changed in a way I hadn't anticipated or expected.  My husband, myself and our 2 daughters had just come back from a trip to Texas where we had shared our ministry with a lovely church to find Samuel barely able to walk.  Just a few days before he had been complaining of back pain so I instructed him to alternate ice and heat and take ibuprofen.  His condition persisted and on May 5th I took him to the first of many Dr. appointments.  The first visit was with a physician's assistant who tested Sam for a number of causes for his pain but found nothing.  He determined it was back strain since Sam had helped a friend move a trailer only a few days before.  We went home and treated his condition as such but he grew worse each day.  Finally on Mother's Day he had developed a fever that we were unable to control.  I thought it might be a virus; what else could it be?  He was only 15 years old and I couldn't imagine a healthy young man having anything terribly serious.  Monday came and went with no improvement so Sam was taken in to see another physician's assistant who upon seeing Samuel, turned his care over to the pediatrician.  Sam's fingernails and toenails were blue and we had no idea why.  More tests were ordered, including x-rays, and we were sent home while our Dr. made phone calls to specialists to determine what might be the cause of Sam's symptoms.  Wednesday, May 12, became a blur.  We went back to the Dr. to hear about the test results but nothing had come in yet.  Being sent home again was frustrating and getting tiresome since Sam could barely walk at this point and we had to assist him in getting up and down stairs.  I received a call from our Dr. that afternoon telling me to get Sam up to the Meritcare Children's Hospital in Fargo, ND immediately for an MRI.  It didn't sink in that this was serious.  I think God insulated my brain because I'm not sure how I would have handled things if I really 'knew' what was going on.  He also instructed me to pack an overnight bag.  At that time they suspected a spinal injury, perhaps a slipped disk, in Samuel's back.  We packed for one night.  

Just to keep this post brief I'll give you the condensed version of the next 10 days.  After an MRI, CT scan, ultrasound and more blood work it was discovered that Sam had clots in his veins from his knees up into his abdomen.  At first they thought he had a clot in his Inferior Vena Cava, the vein that takes blood back to the heart from your legs, but it turns out it's chronically blocked.  Over the course of the next several days Sam went into surgery every day to have the clots broken up or removed by an Interventional Radiologist or vein Dr.  He was in ICU because of the powerful blood thinners and clot busters he was receiving through IVs.  On day 10 we were released but had no idea why his body had done what it had done.  Within time we learned he had Antiphospholipid Antibody Syndrome; an autoimmune disorder that attacks the blood's clotting mechanism.  He also tested positive for Hyperhomocysteinemia, a genetic  mutation that causes the interior of the veins to be rough like sandpaper.  As of this date two of my other three children have tested positive for APS as well as my dad.  I'll be tested next.  

Today I feel many emotions.  I feel sad because of how it changed Sam's life but I'm also very grateful that we had such amazing Dr.s and so many friends supporting us and praying for us.  It was also a difficult time because people that I thought were my friends and would be there for me in a crisis weren't.  At times I felt very isolated and alone but made myself remember that God was always with me and I didn't need hundreds of people surrounding me all of the time.  I knew I couldn't see 'behind the scenes' so had no idea who was praying for Sam.  I knew people were though.  It was hard bringing him home too.  I worried that I would do something wrong, something that would hurt him or even cost him his life.  I was afraid.  

This event not only changed our lives because of the news we all learned concerning our medical history and educating ourselves about APS but it also changed us as a family.  We all learned how precious and fragile life is and even if we have our moments when we're angry at one another like any normal family, we know that we shouldn't leave or go to bed with a harsh word on our lips.  For me, I think I shut every emotion off that I could while Sam was in the hospital and then I remained on autopilot for the summer since we were hosting teams and doing summer camp for the first time.  Reality has trickled in on me slowly over time since it didn't hit me all at once.  I struggled through a difficult winter with this being one issue that I had to confront.  I allowed myself to grieve even if it seemed that others wanted me to be grateful or get over it.  I was always grateful but there are other feelings to feel too when your child has just fought a life threatening battle and has been diagnosed with a chronic illness.  Life is not sunshine and lollipops all the time.  What really matters is who one looks to when life gets hard.  

God has continuously brought me to the end of myself showing me that He is the only one I can depend on and the only one I need.  I can be so dependent on people that I stray from leaning on God.  Desiring relationships with others is healthy but using them to meet our needs rather than trusting God to meet our needs is not.  I still long for fellowship, wishing that I could stand in the middle of a sea of believers singing praise and worship songs but God has me in a place that's different than my desires.  And I am learning to be content in that place.  Sam's journey has made me confront this part of myself.  The worrier in me gets anxious that I might be alone, that I don't have friends or enough friends and that when difficult times come upon me I won't have anyone there to stand with me.  But God's word says differently:

You are my hiding place; you will protect me from trouble and surround me with songs of deliverance. (Psalm 32:7-8)

The Lord is a refuge for the oppressed, a stronghold in times of trouble. (Psalm 9:9-10)

When the righteous cry for help, the Lord hears, and rescues them from all their troubles. (Psalm 34:17)

My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken. (Psalm 62:1-2)

These are only a few of the many verses that assure us of His presence and deliverance.  What do I really believe about the Lord?  I believe He'll keep His hand on my son all the days of his life and only the Lord knows how many days he has.  I believe that although my heart may fear, God will give me comfort and remind me of His steadfast love.  And I believe that God loves my son more than I ever possibly could and will guide his every step so that Sam's life will bring God glory.  

One of my favorite verses for when I get anxious over Samuel's health:

In repentance and rest is your salvation, in quietness and trust is your strength. (Isaiah 30:15)
  
I particularly like the second half of that verse.  It reminds me to be quiet, not just outwardly but inwardly and trust Him because that is when I am strongest.  I find my strength only in Him.  I have none on my own.  And He has brought us through many deep waters and treacherous storms!  Today I'm resting quietly, trusting in the creator of my son and the God who loves him enough to send His son to die for him.  Samuel was named after the Samuel of the Bible because just as Hannah asked God for a son, so had I.  Sam means "God heard" or "God listened".  I'm blessed because God not only heard me once and gave me a baby boy, God heard me twice and preserved his life one year ago.  I pray in Jesus' name that Samuel will do great things for the Lord!  Amen!  


If you are interested in Samuel's story you can read our journal on The Caring Bridge from last year.  I'll probably update it as the one year anniversary of his hospitalization comes closer and after he sees his Dr. for his one year visit.  It's found here:

http://www.caringbridge.org/visit/samuellykins