Life as we KNOW it

Time has been lost in this world as we know it.  I thought I seemed always on the wrong day with just homeschooling, but now I have no idea what month it is.  I KNOW it is February, but it is snowing outside like we are back in Minot in late December!  And if it is February, that means it has been 7 months since Emmy was diagnosed with encephalitis.  Seven months would be a good thing to most encephalitis sufferers, but for us it has been a nightmare.  

Most people will have an initial attack of infection or inflammation of the brain and then some steroids, maybe a dose of chemo or anti-viral (depending on the type of encephalitis) and they go home and recover.  RECOVER their speech, balance, ability to thrive once again and even possibly rediscover their new self.  But that is not what happened with us.  We have been treading water for so long we have all become numb to the word recovery.  We live day by day with our antenna up because for some reason Emersyn's brain keeps getting inflamed and we have become very sensitive to certain symptoms.  Something is attacking her little brain and won't stop.  The neurologists have done everything they know to do with a patient who shows signs of ADEM and/or Autoimmune encephalitis.  Her immune system is suppressed by steroids and chemo, so if it is autoimmune, her brain should not be having signs of active inflammation, but it does.  She has not had any "relapses" of new lesions in her brain, but just old ones that keep catching fire.  Every day I ask why.  Why couldn't she just have had the basic round of ADEM that we were told that if you get any encephalitis "this is the one to get" because recovery is close to 85%. Recovery, there is that word again.

I would love to recap the last 7 months, but I find that it brings me to a place that almost debilitates me and puts me so deep into sadness I can't breath.  So I will just describe how our little Emmy has "recovered" so far.  

As of right now I can honestly speak two words in this deep, dark place that we seem to be stuck in, "Praise God", because Emersyn has all of her intelligence  memory, executive function and cognitive sense and awareness.  But the downside to that is that she remembers running and doing headstands and collecting bugs while running from house to house telling everyone Hi!  It is so sad to even reminisce at this point because physically Emmy is struggling.  

First are foremost is how hard it is for her to talk.  Something is effecting her diaphragm and esophageal muscles so she can't push her air hard enough to talk.  Then, when she had that relapse in November, the right side of her facial muscles quit working.  The movement has come back, but the muscles are still weak.  So this child, who talks excessively, wants to tell us everything and anything that crosses her non-stop mind but we can't understand half of it. BUT because this child is so smart and stubborn (which is a blessing) she will make us understand her if it kills US!  She will do hand motions, make us carry her to something and point at relevant objects or just continue to try to speak until we understand.  There have been many tears shed by the both of us because when she has something important to say, we work so hard to figure it out it usually brings us to tears when we finally figure it out!  

As far as the rest of her body goes, she carries all of her disability with grace.  Oh, if I could only have the fortitude and positivity that Emmy possesses!  Because of that November relapse, her perfectly functioning right side of her body is now limp and weak.  She is able to move her leg around, but while walking it doesn't want to move forward.  The right arm has a muscle disorder called chorea.  It is weak and twists and curls when she is not trying to use it.  I do see this improve if I can get her to hold onto something like a cup or handle. The left side has been the same since she was finally brought out of her medicine induced coma.  Her left leg is stick straight with her toe that pulls inward (condition called dystonia).  We do get Botox on this leg because the muscles just stay tight all-day-long and it becomes painful.  Then her left arm seems to have become looser (also has dystonia), but weaker since July.  It used to be completely pulled up tight to her neck, but now she is able to use it to hold things but she shakes like a 90 year old woman.  She is not able to raise her arm above chest level, so everything she does has to be at waist level.  With this nightmare situation of having both sides of her body disabled, she is unable to crawl, walk or sit very long without pushing backwards.  

As far as diagnosis goes, the neurologist still labels this as severe-reoccurring ADEM (because it only has attacked the white matter in her brain), but is testing her for genetic disorders.  She has tested negative for everything... EVERYTHING.  Her spinal fluid and blood are perfect!  The first genetic test for mitochondrial disease came back negative, but had some small insignificant findings, so now he is testing through an Xome test her DNA against mine and Randy's to see if that small finding is normal or not.  That test will try our patience, taking around 5 months.  As I read and read and read I just know that something kicked in when Emmy broke her arm the day before Easter in 2014, but the neurologist says she shows no sign of autoimmune encephalitis and can't imagine a child being able to function for 3 months with that kind of inflammation in her brain.  We just are lost in this guessing game and tired of not seeing the results we want.  

There is really so much to say and write that I don't know where to start or where to end.  I often think "what if this is all there is?"  Caring for a handicap child and me refusing to fill out paperwork that would get us assistance and needed resources because I still cling to the hope that one morning she is going to come running into our bedroom.  I am quite aware I need that assistance, but where to find the time to fill out 75 pages?? I feel that we have put our identities on hold and became full time caretakers, her siblings too.  They have put up with so much, have had to alter their lifestyles for her and have mostly grown for the better.  It is hard to be self-centered when you are looking at the little girl who "ran the house" just last year and then complain about cleaning up your room or having to play with your little brother because Mommy is watching Emmy and barely has time for anyone else.  I pray everyday that this nightmare will end.  I feel consumed with prayer and research.  I use so many essential oils and Omega 3's, but I get discouraged when we see another spot of inflammation.  I know that healing takes time and that God knows the purpose and plans he has for Emmy and the rest of our family. 

I will say this.  I am learning to not be moved by what I see.  I am learning to let go of the physical things we see in Emmy.  I am learning to live by Faith, which I don't think the average Christian has any idea what that feels like, because I know I didn't.  It is hard not questioning God about how such a precious child of Him could be put through so much pain and torture.  And when I say Child of God, I mean a girl who listens to worship music and will go into complete reverence and try to raise her disabled arms and just close her eyes and drink in the awesomeness of God.  She is the one who reminds us to pray for our food as we are too hurried to even sit down at the same time.  She is the one who has had me and Randy read through her Bible almost 3 times now because she just loves the stories.  She has me read my devotions directly to her.  She loves the Lord with her whole heart, soul and mind and I am looking at her in complete awe.    

So I remind myself these things daily. 

Proverbs 3:5-6 "Trust in the Lord with all your heart, and lean not on your own understanding.  Acknowledge HIM, and he shall direct your paths."  
~This is so hard for me.  I want to KNOW by seeing, by researching by witnessing something.  I want God to tell me directly what His plans are.  I see the MRIs and think I KNOW what is happening, but my understanding is nothing compared to HIS wisdom.  I shall not be moved by what I feel or see.  For I walk by Faith and not by sight!!!

Matthew 11:28-30 "Come to ME, all you who labor and are heavy laden, and I will give you rest.  Take MY yoke upon you and learn from ME, for I am gently and lowly in heart and you WILL find rest for your souls.  For MY yoke is easy and MY burden is light." 
~I now thank God everyday for this, because this family would be shattered if we did not give it to God and let HIM carry our load.  God promised that we will enter into HIS rest!  And HIS rest is what we need!