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.