My servant leader

(Reading books with Daddy on one of our days home from the hospital)

It's Sunday morning and again my husband Rick heads for church with his heart in multiple places.  In the past seven weeks he's had his heart torn between the church family he loves and his personal family that is struggling but in his own words, he's made the right choice to be where he cannot be replaced..HOME.  In the past few weeks he's looked more like Jesus..humbly serving where no one sees, than anyone I know.  He started this year wanting to focus more on prayer in his own life and God has seen fit to draw our family to our knees in utter dependence on Him for the life of our son Cameron,  Rick has preached while his son was being medflighted to St Louis with my blessing as we knew it's one thing to say you trust God..it's another to declare HE IS GOOD when you are faced with what we did that day.   He stayed with us for days in the hospital knowing that we both were needed to fight for Cam.  We both cried together the night we thought we'd lose him and we prayed.  He has preached after 3 hrs of sleep and long nights in the ER knowing he had my blessing to continue preaching while we left without him for the hospital again.  He trusted God's plans for Easter which is one of the big events on any church's calendar..even when there could be no plans for great dramas or great musicals this year when his heart was torn because our family was separated.  He has been a source of mercy and strength to each of us..continuing his role as Dad (which often includes talking to Corey's stuffed animals or helping talk the kids through different issues they were facing).  He has supported me in new roles as a nurse and kept me focused on just doing whatever I could to keep Cam going and encouraged me to let other things go.  His hugs and listening ear have helped all of us to process really difficult emotions as we've walked through this journey.

Every night for seven weeks Rick has slept near a monitor for Cam, often sleeping on the hard floor of Cam's room so that now his back is in pain often.  He has set his alarm to be there to watch Cam for dangerous air bubbles and back ups of blood in the tubing that would endanger Cam in the night.   He has lovingly gone to answer any calls in the night..every night for many weeks.  When I became ill with a fever there was no question in his mind that he would work from home that day to be there to support me.  I have never felt such love in all my life..such giving over and over again unseen.  He will probably never get his doctorate or write a book but I know God sees and He has great plans for my shepherd husband and for his church family as well through this.

When Rick took the job as senior pastor here God used his love to show me the love of the Father in a way that I had never known.  I learned through Rick that God loves us unconditionally and is for us..not a judge who sees our shortcomings all the times..but who sees us through a righteousness that is not our own..but that of Christ himself.  In marriage the picture is given of Jesus Christ and the church and I can honestly say that I'm married to a man who has looked more and more like Jesus than ever before in this trial because he has laid down his life for his family.  When he graduated from Seminary they gave each of the graduates a towel and told them the importance of being servant-leaders.  Some are called to do this in other places but Rick has been called to do this in his own home.  I pray that others can see and that God may use his example to lead other dads to consider their families' needs and be there for them in this way.

A child's illness can separate a family and a marriage but because Rick has quietly continued to lay down his life for all of us, God has kept us together and strong.  I am honored that he is my husband and my pastor.  I pray for my daughters to have young men who would sacrifice for their future families in this way and that my young men will grow up to be like their Daddy who strives to be like Jesus.  I love you Rick..I can't thank you enough for what you've taught me about God's love being never ending and never dependent on what I could do for Him.  Thank you with all my heart.

The ROCK that I can continually come to

Psalm 71:3 "Be to me a ROCK of refuge to which I may continually come; you have given the command to save me, for you are my ROCK and my fortress"

Just 48 hours after our 3 day hospital stay and PICC line replacement, on Wednesday night at 1am, the alarms sounded on Cam's pump and the line and tubing were filled with blood.  We called home health and our on call nurse at the pump company and after repeated attempts to flush the line but no success we determined the line was again clotting.  Around 2 am Rick made the decision after we spoke with infectious disease doctors in St Louis to go straight to the ER there hoping they could maybe save the PICC line as they had done once before.  At 3 am Cam left me screaming..that was a hard moment to be the one staying instead of going and realize how hard separation is for him.  We all only slept a few hours that evening.  Rick and Cam arrived in St Louis in the early morning hours and thankfully they were able to flush the line, reconnect him to his pump and even change the PICC dressing which had been causing extreme itching for Cam (due to an allergy to the adhesives that he is developing).  They arrived back at 1:30pm and we thanked God for his help as this was the first time things really turned out better than we had hoped!

That afternoon I became increasingly ill with fever and bronchitis symptoms but God provided a warm meal for my family and we had already arranged respite care for Corey.  Corey had also started attending our local Christian school three mornings each week this month til the end of the school year.  We applied for emergency respite funds through our state and were approved this week which was a blessing too as we now have Corey in good hands a few hours each day for this month so that we can continue to focus on getting Cam stronger.

On Thursday night Cam's pump backed up with blood again..only this time I was probably too sick to handle it so Rick woke up Caleb and they both took care of it. Thankfully were able to flush it before any clotting occurred.  Yesterday was still rough as we sought answers for our pump problems and I spent most of the day on the phone.  In the late afternoon they sent a courier directly to our home with a new valve that would hopefully prevent the problems Cam is having (which we believe are due to increased pressure in his heart that works again the interim times between dosing when Cam is still getting medicine but at a lower rate).  Last night..EVERYONE slept!

This week has been a hard one for me..I really feel like I hit a wall in every possible way.  I'm glad God promises to be a ROCK and not only that ..but that we can continually come to Him.  Each night in the night I pray that I will trust Him and know that He is near.  I do find myself asking now at times..how long O Lord..but I know He hears each plea and that He cares and is close to us.

In the past few days I've thanked God for warmer temps, for sunshine, for birds and budding trees that remind us winter will not always last.  I'm thankful for meals that keep coming in George Mueller style..just daily bread...for my kids having a moment to work together to build a square foot garden, for Cam being strong enough to ride his little bike with training wheels, for all of my kids and the ways they pull together and support each other, for Rick and his unending love and devotion to us as a family.  I'm thankful for sleep, for less fever, for cool breezes and ice water.  God is my ROCK..this is hard..crushingly so..but I can continually come and I will..to Him.

Easter Reflections

After 7 hrs in our local ER trying to save Cam's PICC line which had alarmed as high pressure and refused to flush, we transferred to St Louis on Saturday evening before Easter.  Cam and I spent our Easter in a hospital room far from our family.

I wrote this to a friend to describe my thoughts on Easter:

Easter is about Jesus..the power of the cross isn't just for salvation although that would be enough if it were..but it's God's sustaining POWER and the HOPE that you can have knowing He has conquered and there is nothing here that can separate us from his LOVE.  My favorite song through this is I Will Rise by Chris Tomlin (although ultimately not a happy song on earth..because it mentions that death is not the end..and not something I want to contemplate right now..but it truly does cross my mind every day that I might lose Cam).  It's the words: there's a peace I've come to know, though my heart and flesh may fail, there's an anchor for my soul..I can say IT IS WELL...Jesus has overcome..and the grave is overwhelmed..the victory is won..he is RISEN from the DEAD.  I've identified with the power of the cross this year more than ever..I've identified with a Father who watched his child suffer for me..who is not far off nor uncaring but who truly understands my tears and my fears..I've identified with a Savior who kept walking..when he knew what he was facing and I"m in awe and ask Him for that same sustaining power to keep walking a road I wish I was not on.  So maybe that's better than a family picture or a ham dinner or singing He Arose together in church as a family which is our norm.

God answered my prayers for peace even in that hospital room while Cam and I waited for Monday morning to come when he would have surgery again to put in another PICC line.  There were Easter egg hunts and prizes to encourage the kids at the hospital.  Cam opened up a gift from us.. a book I made with Shutterfly to tell him how much God loves him and how HE will help him in the hospital.  There were pictures posted on Facebook by my sweet daughter showing me how they all looked in their matching outfits even though part of our family was not there.  God was with us..giving strength and reminding us as one of my nurses and I talked..about our "core"..the true meaning of Easter.  He sent a few compassionate nurses who helped us get some rest the second night. He sent a friend in St Louis on Easter who willingly brought me some Starbucks to keep me going and her presence made me smile :)  We skyped together on Easter and it was nice to have that connection.  He sent Caelyn and Rick to arrive just as Cam had gone back for sedation on Monday morning and this time Cam's surgery was in a place where they could give him "happy meds" before it which made for a delightful Cam instead of me watching him scream and go limp as previous procedures had been. God gave us peace as we met with the heart surgeon who sat on the end of Cam's bed and explained the procedure for the open heart surgery and we knew we were in the right place.  God is good...Easter is about suffering and YET hope.  Because He lives, I can face tomorrow.

Lincoln, Love and Letting Go

How's that for alliteration? :)  We had a rough rough week adjusting to all kinds of problems with the pump and having home health come daily.  We were able to get some help but it was honestly exhausting and overwhelming thinking of how Cam might end up in the hospital for his daily infusions if we could not find a solution to the air bubbles and things that were happening with the pump.

Then God sent some dear homeschooling friends to help me out.  They met just for encouragement but ended up cleaning our bathrooms and offering to make meals to extend the meals that our church had provided.  I'm so glad God let me humble myself and say yes because our weekend turned out a little crazier than anticipated.

On Saturday night Cameron suddenly spiked a fever.  We called home health who put a call into the emergency line of infectious disease in St Louis.  Cam ended up with back pain as well so we went to our local emergency room.  After five hours and bloodwork and consultations with St Louis, it was decided that Cam needed to transfer there.  It was 2 am on a Saturday night and we knew Rick had to again preach in the morning but were praying about what to do.  He texted our church secretary and friend and as God ordained it, she could not sleep and was up reading a book and agreed to meet me at 7am.  We attempted to pack and get some sleep but soon after we arrived at home, Cameron's pump kept alarming.  We could not get it to stop and then realized that the PICC line would not flush with saline.  I was so overwhelmed and kept praying that God would help me trust Him.  I feared what was going on with Cam and also the loss of the PICC line.  After one hour of sleep I got up to finish packing and Cameron and I left at 7am for our three hour journey.

We arrived in St Louis and Cam started having severe stomach pain.  It was a very scary time for us but eventually he had times when he felt better. By a miracle of God, they were able to save the PICC line and begin to use it again to draw blood and to administer antibiotics.  We thanked God as it should not have been possible after 8 hours of non-use.  Rick arrived at 5pm and God gave us peace and just the knowledge that Cam was in good hands and safe, made us feel better.  We spent the next two days doing testing to make sure his leg was still not a source of infection.  Cameron was on isolation so that made life interesting as we tried to entertain him in his hospital bed for many hours each day! Eventually the doctors determined it was just a virus but being in the hospital allowed us to work on some of our pump issues and also to help the doctors from various specialties for Cam to nail down some dates.  We left with the knowledge that IV antibiotics were going to continue until April 13th and open heart surgery would now be the 16th.  Just having things coordinated made life better and having moose pancakes and a 48 hr break from babysitting the pump helped (although the lack of sleep in the hospital was HARD this time!)

We were thankful to arrive home on Tuesday evening and a dear friend brought Cam a present.. A new betta he named Lincoln:

I recently told a friend that I'm a mess (and she says "no you are just real now")...I no longer attempt to pull off "together"...I've had to let go of alot of the way I want things to be..I've had to humble myself as say through tears that I needed help and couldn't do basic things like make dinner or scrub a tub...I've had to pray more for wisdom and accept that there were things I thought were "up to me" but really they never were..they were God's domain.  I don't have the lessons learned quite yet but it's freeing in many ways to let go and trust God and stop pretending that as mom I had to be the answer, the perfect example and the protector of my children.  Those things were always God's jobs.  I am so thankful for the ways He is holding us up and sending help..going before us and providing whether it's meals I didn't know I'd need..or keeping a friend up at night so she'd get our cry for help at 2am.  I'm thankful for Lincoln the fish because he makes Cam smile :)  I'm thankful that because God loves me and His plan is greater, I can trust Him and let go of many things.  I need prayer..it's hard to change and stop trying to control and rest.

Blessings in the Valley

As Easter approaches each year, I try to think through what the Easter story means to me with what I am facing that year.  This year two things have really been a blessing to me...to think our Heavenly Father KNOWS firsthand what it is like to watch his only Son suffer...brings me hope and encouragement.  Second, I know we've been chosen to walk a hard path and that suffering is a chance to walk in the steps of Jesus and so I'm grateful.  We often want to KNOW him and the POWER of his resurrection but don't want to WALK in his sufferings.  Although this is not a place I willingly go (I've been known in the past to refuse to sing the old Steve Green song "Refiner's Fire" because I couldn't ever say honestly it was my sole desire...) it is a good place...a place that fits in well with Easter.  I have a Savior who understands the road of suffering...and a Heavenly Father who knows just how hard it is to watch your child struggle...I am grateful this Easter.

Life in the valley is quiet..it's simple...sometimes it's sweeter.  You no longer feel inspired by the latest blog article to get up early and be productive, because you are busy realizing life is a gift..so you walk hand in hand collecting stickerballs on a Sunday morning before church.  No one expects you to be doing everything..so you spend time resting, praying, just being because you know the valley is about to possibly go deeper.  You aren't afraid..because you know the GOD who goes before you..but's like a separate reality that is very different than the life you used to live.  You have to pray for a shift in priorities...you have to realize that emotions aren't reliable here...you have to look around you and choose thankfulness because God is sending His love each day through so many people.  And all the time I can relate to my Savior in a new way...and wonder what LOVE would compel Him to keep walking knowing what He knew on the road to Calvary.  Thanks Father for giving us a high priest who would understand our weaknesses and be our example.  Thanks for being with us in the valley..it's quiet..it's different here..but without all the extras I can hear you more clearly.

Home Sweet Home

Cameron came home on Thursday!  We were so excited to have his PICC line and all the things in order for him to return to home.  These pictures are adorable because it's his first time in "real clothes" in almost 2 weeks and he was glad to be free from IVs for a few hours as we made the journey home.

We found out from the cardiologists before discharge that they were going to bump up Cameron's open heart surgery so that was a bit hard to hear.   Now days later we have learned how to run and disconnect IV pumps from home that give him continuous antibiotics to help heal the infection in his body (and now his heart) and have a tentative heart surgery schedule for April 10th.   Cameron has started physical therapy and we have a home health nurse that comes twice a week for dressing changes for his IV as well as blood draws.  We have several follow up appointments in St. Louis over the next few weeks and are putting together a more solid childcare plan for the upcoming surgery.  It has been nice to be home in our own beds, to snuggle and spend time providing some stability for everyone.  Our church family has supported us in so many ways and this week they are providing meals..I'm so grateful because learning to be a nurse at home has had its challenges and this is one very practical way to relieve some of the pressure for our family.   God is good and He sustains us.  He has called us to walk this path but always walks with us.

Lessons from the 10th Floor: Never Alone

 

Cam and his Bruce the Moose cookie

On Sunday night we made the difficult decision to have Rick return home to our other children..we felt that Corey needed one of us and that Caelyn was becoming ill and in need of a doctor's visit.  It was a hard moment for me to let Rick return and to trust God fully being three hours from home, with no vehicle and not really sure what would happen from day to day nor how long this week might be.

God never leaves us alone even when we have no one..He is there.  I can't begin to recount all the ways in the past two days that He has provided.  After many days of difficult blood draws, due to a new antibiotic that requires frequent monitoring of blood levels, the IV team put in a special IV for blood draws that makes it painless for Cameron (so thankful as tonight we need a 4am blood draw and they can do it while he sleeps!).  God sent someone with an ipad to help Cam play Angry Birds (and even Mom got a bit addicted in that 5 minute time frame) while they worked on him and I had no other hands to support but God was there.  He gave us an amazing night time nurse who would be with us for three straight nights..providing support and continuity and whose main goal seemed to be to watch over the IVs closely so all of the night time medications would not wake us.  We have had the best sleep these nights since Daddy went home.  Cameron became stronger almost overnight and decided he could walk to the playroom instead of using a wheelchair (which might have been impossible for me to navigate with an IV pole by myself).  God sent my St Louis new friend to come with toothpaste at just the time when I was in the downstairs playroom and needing an extra hand to carry some things back to the room.  Then when we returned to the playroom that evening, a volunteer I had met earlier in the day was right there and helped us get there safely.  At the end of our time playing, Cameron wanted to take the Chutes and Ladders game upstairs and again another person helped me.

Tonight we were ready to embark on another playroom outing and a woman showed up at my door saying..you know me but we've never met.  It turns out she was an adoptive mama from our adoption board who knew about Cameron and unfortunately her son was also here and she walked down with us to the playroom.  It's as if each time I took the step of faith outside this room, God was always there sending help.
Today a member of our church was on her way to St Louis and Rick asked her to stop and drop off a present of chai for me.  She called as we were playing and I wasn't sure how to meet her.  Well then a staff member mentioned Wii to Cameron and said she'd take care of him for a few minutes while I went outside.  So thankful for the little things God is doing to send me help and encouragement..I am not alone.

Of course the BIGGEST thing we've seen God do this morning is negative cultures!  We were all praising Him out loud and praying through this day that they would remain.  God sent us a nurse today that will also coordinate all the steps needed tomorrow for the procedures for Cam's heart and the installation of the PICC line.  It's now 37 hours and we are so close to being cleared that we can see the finish line..the hope is that Cam will leave the hospital on Friday!

We had a fun day playing, laughing, reading, watching a movie...I love this kid!  Tomorrow Dad is coming for a visit (and I'm sure Cam will talk to him again about how he wants a real glow fish like the one in the fish tank here).  Praying now.. the hospital staff is putting everything into place as if we are really doing these procedures tomorrow.  I am not alone..thank you God for walking with me and sending people at the right time...for knowing what I needed and meeting that need even before I could ask.

Cam's drawing of a fish tank with a fish inside and his list from the Moose Menu here for breakfast today