the end of week five

The weather here has turned fully fall-ish and the golden hues remind me of home.  Yesterday was a chicken soup kind of day as the clouds overhead never fully released their contents, but instead misted down upon us hour by hour, with gusts of wind that reminded me of the Oregon coast.  Our bodies enjoyed the excuse to stay indoors and read books.  But even with tired and achy bodies, we are seeing glimpses of healing.

Our doctor does not expect to see changes in our symptoms for the first six weeks because it is the die-off period, the time in treatment when spirochete and bacterial elimination is occurring as Lyme loses the upper hand, and the bodies immune system grows stronger and stronger.  Already I have seen changes in Wyatt's face especially, as his eyes look less gaunt and the paleness of his face begins to fade.  Today, I was mentioning this to our doctor, and she asked Wyatt if he was feeling better.  He gave a tentative yes.  As she dug deeper and asked if he had more energy, his answer squeezed my heart.

He said, "I have bursts of energy.  More of them.  Like, before I would get a burst, but if I spent it, I would be sick all that day or the week.  Now I can spend my energy and I will be tired, but then I will get another burst.  I won't be sick."  

My heart literally hurt and I could not stop the tears at hearing this from his mouth, him so simply framing the reality of his life for the past few years...things I have tried to put into words.  He has fought hard against even admitting to himself that he gets sick after spending his energy, stubbornly trying to prove himself well and push past all the pain and exhaustion...and here he is, able to fully acknowledge the limitations his body has had because now he can see the difference; like pops of sunshine through the clouds after a long stormy season, forgetting what the sun looked like.  Hearing him talk about energy as a commodity the way we adults understand time and money as a commodity made my heart cry.  These are things a child should not need to know about. But he does.  He has had to manage his energy like precious drops out of a mostly empty bottle.

This is a window into the world of so many parents who watch their child struggle with chronic illness.  The inner wave of panic never really leaves as you struggle through doctors appointments and hold back false hope that rises every time you think you may have the answer.  Antibiotics, herbals, tinctures, neurology appointments and doctor after doctor, all the while mourning an immune system that seems to be losing the fight as said child is in the pediatric office week after week from one virus or another, bacterial infections, lab work-ups and random issues.  It is my greatest hope and prayer that we go home to a new reality and a fresh start.

Eli and Ben are both very tired but have bursts of energy as well.  Symptoms still make us sick but there are wonderful glimmers of hope!  Most days are full days which is good.  We go to treatment for three plus hours four days a week, fill prescriptions, grocery shop (another post for another day...), cook three meals a day from home (holler out to all my home-school friends who cook ALL DAY LONG!) and always swallow so.much.medicine.  Mostly it is natural medicine that works in conjunction with our doctors protocol to heal the gut, get rid of bacteria and establish balance in our body.

Today was a great day, and after treatment we all felt well enough to take the long way home, through a local park.  The sun was out and it was such a joy to buy the boys dairy-free sorbet as a splurge because it's Friday and we get to let our veins heal for two days.  (Ben informed me that he loves Fridays.)  After running about (like teenagers do at an empty child's park) we are now back at home resting.  Our bodies are tired again, but we know something is healing inside of us- I can truly see it!

This coming Monday is the start of week six and I can see the sun on the horizon, no matter what the weather is overhead.  God is so present and He is so good.  Our hearts could not be more grateful or humbled at where He has us right now.  We miss our family and loved ones but we are forging ahead!

Eli snapped this picture as unbidden tears fell from my eyes,
 opening a precious box from home.

#Brothers #InItTogether #TheyAreMoreBondedThanTheyKnow

Beautiful Schwabisch Hall

Bricks without Straw

It is chilling to read that Pharaoh was a slave-driving force that sounds very similar to the force that held the same people group captive thousands of years later during World War II.  Pharaoh made incessant demands on God's people and he made them work.  They were tasked with making bricks and Pharaoh put slave drivers over them.  So great was the Israelites suffering that they cried out to God for help.  Pharaoh even tried to kill their babies.  In all of this, the Israelites continued to multiply and stand up under the heavy load.  Yet upon request that they be allowed to travel three days journey into the desert to worship Yahweh, the request was denied and they were shamed for trying to escape working.  They were told they were lazy.  Work must be done.  WORK SETS YOU FREE is carved into heavy metal on the front gate at Dachau, one of the very first "work camps" that was opened before the war began.  How these words must have mocked them as they walked through the gates and into the enemies hands.

The enemy has always wanted to keep Gods' people in chains- captive- and tell us that we must work harder to be free.  He shames us and tells Gods precious people lies that cause grief and despair.  We become stuck in an endless cycle of trying to give ourselves our own freedom, a respite from the enemies onslaught of defeat.  But just like the day when time began, when we struggle for our own freedom the enemy entrenches us further; he drives a hard bargain.

Moses was tasked by God with the job of being His mouth to Pharaoh and the person He was going to use to bring freedom from the oppression His people were enduring.  Hope was on the horizon.  Yet when Moses asked Pharaoh to let them go into the desert to worship the Lord, Pharaoh refused, then proceeded to make the labor forced upon the Jews more severe.  He would no longer supply the straw that they used to make their bricks, yet the same quota of bricks must be met each day.  When the foremen could not succeed in this impossible task because the Israelites were "scattered all over Egypt to gather stubble to use for straw" they were beaten.  When they stood up for themselves to Pharaoh, he again accused Gods people of being lazy.  The choke-hold around their necks got tighter as he reiterated his demands: they would be given no straw, and the same daily quota must be met.  I imagine this must have been a bit like expecting construction to continue without any lumber mills.  The already almost impossible task of producing large quantities of bricks just became impossible.

How could God promise freedom for this people and yet all earthly signs point to even more hopeless defeat than before?  They told Moses, " Ever since I went to Pharaoh to speak in your name, he has brought trouble upon this people and you have not rescued your people at all."  Hopelessness.  Defeat.  And did you catch the accusation in their voice?  They had dared hope...but then sorrow crushed their hearts yet again.  How could they know that Gods ways are not their own?  How could they know that their eyes would see the mighty hand of God freeing them from impossible situations?  We know because we read ahead...but these were real people with real heartache and real battles they fought daily both physically and mentally.

Exodus 4:31 says "And when they heard that the LORD was concerned about them and had seen their misery, they bowed down and worshiped him."  What is it about the Lords great compassion for us that just undoes us?  And oh the struggle of human nature that doubts the Lords goodness when trial and tribulation overtake us...when we don't understand why the Lord would promise good but we just walk through life's storms.  We become like the Israelites stuck in captivity who don't realize that the LORD fights for us.  When we struggle in our own strength to overcome the enemy hold on our lives we forget that work is not what makes us free.  Our natural tendency to strive to become something that we can be in man's eyes, whether it be skillful or admired, powerful or be seen as good enough can become stumbling blocks as we stand in full view of the Lord.  He knows our hearts and He knows how we struggle...our God is a God of standards and He is Holy, but He is also a God of mercy.

There are battles in our life that we fight against an enemy just as real as the Pharaoh we read about in times past.  There is a war that rages for our soul, and a God who already paid the price to win it.  The enemy will always cause defeat and shame to rage unhindered in our souls... while the Lord beckons us to His side to find the forgiveness and quiet peace that only He can give.  Oh how He longs for His children to have freedom in Him and to be set free from the chains of sin that entangle.  This is the gospel message- this is the hope that is held out for us because He lived on this earth, died taking on the full dead weight of human sin of all mankind for all time, and then triumphed over the grave when he rose three days later.  This is our victory!  I hope with all my heart that if you are reading this, you know the Jesus who loves you and died to free you from your captors chains.  I hope that we who know and love Jesus as our Savior choose daily to throw off the chains and dare to walk forward in hope even when our hearts are broken and we cannot see how to walk forward in freedom...when trial overtakes us, when sin chokes us and when the enemies taunts are real enough to cause our hearts to tremble with fear.

Sometimes we wait...and wait for the Lords answer.  I don't believe that just because we are eternally saved that we will be saved from all life's trials.  Time and again we read in Scripture about hero's of the faith who went through heart-crushing times, and they had their own failures (big ones).  But time and again we see a heavenly story unfold and it tells the same tale of a God who sees, who loves, and who saves.  As the Israelites were fleeing Pharaoh and were trapped against the sea...no going forward and no going back...the Lord moved.

 "The Egyptians pursued them, and all Pharaoh's horses and chariots and horsemen followed them into the sea.  During the last watch of the night the LORD looked down from the pillar of fire and cloud at the Egyptian army and threw it into confusion.  He made the wheels of their chariots come off so that they had difficulty driving.  And the Egyptians said, "Let's get away from the Israelites!  The LORD is fighting for them against Egypt."  

Exodus 14:23-25

Our freedom comes when the LORD fights for us.  It makes me want to make sure I am striving for the LORDs battles, and not my own agenda.  It makes me grateful that through the struggle and when we are most in need, we see the Lords greatest miracles.  It makes me thankful that my God covers over all my sin, and loves me when I am most unlovable.  And he loves you, too.

"In your unfailing love you will lead the people you have redeemed.  In your strength you will guide them to your holy dwelling."  

Exodus 15:13

This is the song of Moses, recorded after the Lord threw the enemy army into confusion and then proceeded to part a wall of water, allowing the Israelite people to walk free to the other side. Tests of faith were still to come for the Israelites but they had a God who was fighting for them.  And He fights for us too.  His love is unfailing and He is faithful to lead us, His people.  He is a God of eternity who has always faithfully walked among His people and is still moving among us today, reminding us of stories just like this one to give us faith when our hearts doubt.  He is good.  He sees. and best of all- He redeems.

A peek into week four and more

Here we are approaching week four of treatment.  I struggle with knowing what to write; there are so many thoughts and emotions that compete for attention in my heart.  I am not sure I can share completely; some things are too hard for a mommy to explain.  I debate internally regarding what I should write and how much of our journey my children want in the public eye.  They don't want to be sick- they don't want to be those kids with Lyme.  These are the reasons why this post has been belabored mentally and somewhat dreaded.  I want to only share the fun things.  I would rather not be real, and just stick to the surface details - the ones that are not vulnerable to speculation and the ones that can be picked at without my heart being affected.  But that is not this journey, and after much prayer I have decided that it is not what the Lord has called me to.  So I have decided I will write truth.  Not a reckless dialogue of emotions...but a vulnerable picture into our world.

Lyme Disease is becoming more of a topic in southern Oregon, our home state.  What was not talked about ten years ago (at least I didn't hear of it) has become a frustrating and sometimes divisive topic among the community and everyone seems to know someone who has been recently diagnosed with it.  Opinions and suspicious questions abound as we all try to grapple with the idea of Lyme Disease and the shock (and denial) that our home town would be a breeding ground for it.  I really didn't believe it myself until out of exasperation I agreed to take a test.  The reality of seeing the test come back showing I was positive for borrelia spirochetes in my body cannot be expressed in words, having seen the devastating effects of it in my nephew.  When did I get it?  I don't know.  Was it one of the many ticks I pulled off myself after a full day of running through my childhood fields and climbing trees?  Back in that day, they were no more alarming than a really creepy fly (that happened to be attached) and taking one off was not worth the mention.  Times have changed and ignorance is not a luxury any more.  Knowing that I more than likely passed it to my children has been devastating and angering to my heart.  Watching my child suffer through seizures that wrack his body in pain and tears my heart apart with panic that makes it almost explode...no diagnosis available from multiple specialists...yet I have read many of the same stories like ours.  Parents watching their children be sick and seize from an unnamed disease until finally, one doctor says..."You know, I just want to do one test, to rule out Lyme Disease..." Seizures are the most devastating symptom in our family, but it is definitely not the only one.

So here we are, after my children have been up and down the freeway seeing multiple pediatric specialists for neurological disorders, endocrine disorders and working with a doctor in Portland to lower the spirochete load in their bodies after all three tested positive.  Just to be sure, we tested three times, three different tests, none covered by insurance.  We weren't looking for this to be our story.

We are here because of the success rate with this doctor.  We have heard (and seen) story after story of people who come terribly sick...some with feeding tubes, in wheelchairs and cognitively incapable of much.  This is the truth of the what Lyme can do unhindered in the human body, when the immune system can no longer hold back the tidal wave of spirochetes.  My children came sick but not near as sick as many others.  I have had the blessing of meeting a handful in the past and even several in the past week who have been healed and made Germany home.

My sis-in-law, Stephanie, Adrianna (click here for Adrianna's Lyme Fight) and I

Our days are full here.  We have treatment four days a week with a break on Wednesday.  We eat a diet for gut health and intestinal healing which has included personalized food intolerance tests. This test dials in what foods your body is testing sensitive to and causing inflammation.  Full disclosure mom moment here: I love eggs.  I cook eggs when it's dinner time and I have no plan - all the sudden it become breakfast for dinner!  Its protein and I am a serious protein fan.  I have cooked eggs so much my kids get sick of eggs.  I hard boil eggs, throw them in lunches (my kids love me for that), eat them with avocados on toast and quiche is one of my favorite dishes.  So imagine my laughter when one of the highest rated food sensitivities for ALL OF US came back as EGGS!  And imagine Levi's delight when he realized he would no longer have to contend with unrefrigerated eggs here!  God makes us LAUGH.  So, we are off of eggs.  Also, no dairy or wheat.  Along with a handful of other really normal food that we will abstain from for five weeks.  Gut health, baby!

We started feeling the effects of Lyme die-off around week two.  Knees that were achy now felt like they may break.  Feet felt like lead weights and our legs were sure they had been lifting heavy furniture all day and were about to give out at the next step.  Pain is a familiar companion and all the worst of the Lyme symptoms seem to flare as they put up a fight to survive.  My oldest and I have symptoms that track most similarly and my younger two have been holding up better than I expected.  They sleep and rest then get up and GO.  A favorite has been the freedom they have to walk down to the toy store and buy silly trinkets or just have the joy of looking and dreaming.  This I am happy to give them, as I look at tired veins that will be found again the next day.

This part is the hardest for my heart to contain as I watch their faces day after day hold out their arm for another IV.  Their bravery humbles my heart and I hold back tears at the raw parts of life they are experiencing at such a young age.  It is such a mixture of sorrow and thanks...that God made this possible...that they may be able to run and play day in and day out like their friends do.  That there will be no more headaches on the couch with blankets over their eyes and frantic parents looking for ibuprofen wondering how much worse it should get before we go in....to know that they can make it to a full day of school without falling asleep the second they get home for the rest of the night.  We look toward the day when the calendar is not a mess of doctor appointments and weekend trips to the specialists...to not watch their bodies struggle through a sport or struggle through a friends birthday party, head swimming with exhaustion and whispering in my ear that they are sick and need to go home, then tears on the way home because they are sick while their friends get to play.  To not have to measure out their days according to how much energy they can expend, knowing the next day will have to be a rest day...to know that they will not pass this disease on to their wife some day (yes, it is transmitted that way) and then watch their own children suffer the effects of it....this is why we are here.  And God is holding us so tight.

This season is such an interesting one.  I feel my heart stretched so tight like a rubber band that might break, but always there is a silent peace and even joy deep beneath the surface that holds me steady.  We have been able to drive places while Levi is here and drink in the beauty and history that is a steady normal here.  We are not a perfect family and our neighbors in the next apartment probably think we are loud.  I have made the kids wash each others feet on more than one occasion for a random "you're a dirt bag" comment made to another brother, lol.  And I probably owe them a few feet washing gigs too. But all-in-all, this has been precious to be together, even in the short spans of time that Levi is here. I can feel God knitting our imperfect hearts together in eternal ways and providing laughter daily.

One of my favorite verses is below.  I love that our God is compassionate and sees his little lambs that need His arm of protection.  I am so thankful for the God He is.

Isaiah 40:11

He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.