When God Shows Up

Today I was going to write a very solemn column (that totally rhymes) about when to give up the high tales of dreaming and hoping and just start accepting life as it is.  In other words, when do I just look at Emmy and say, "All right, if this is what it's going to be like forever, lets start living without our heads in the clouds, trying to get her to walk countless hours a day, give up the incentives to crawl and every other dauntless task I do daily".  But then God showed up.

We went to the hyperbaric chamber, like we do every day, and I took the boys with me since we were going to pick up my in-laws right after.  The morning started normal, the "dive" was almost like every other dive except I wanted out like crazy 40 minutes in.  We completed dive number 25 and rushed out to make our way all the way to Newport News from Norfolk, when our favorite puppies stopped us.  A veteran brings his dogs every once in a while, and they adore Emmy.  So we played and I instantly felt compelled to just share with the guy about oils that support brain health.  He has been doing dives and acupuncture, but he is still is so foggy brained that I thought a couple oils might help him.  So after spending 5 minutes loving the pups, we headed out to the car.  The boys jumped in and I put Emmy in her seat and walked to the back of the car to put the wheelchair away and I heard the most clear sounding "church" music ever.  It sounded like a loud speaker was playing right over my head.  So I turned and there was a man, I have never seen before, just walking around.  I asked him where the music was coming from and he pointed to his little bluetooth speaker hanging from his jacket.  I told him it was such a great sound and then he proceeded to teach me about this cool thing called bluetooth and how the phone just magically syncs up with the speaker!  He then very boldly asks what is wrong with Emmy, so I tell him the quick and gritty story in 2 minutes and then he tells me that he is there putting his father in the HBOT for early onset of Alzheimer's.  I then, once again, boldly tell him about some oils that support the brain and he jumps in my car next to Everett and tells me to take down his phone number so I can share what information I have found over the past year on the brain.  And then he suddenly looks at me and asks if he can pray for Emmy.  Can I just say that no one asks to pray for Emmy anymore.  People loved praying for her when she was in a coma, just out of rehab or when she relapsed in November, but really not since then.  I truly believe in prayer and Randy and I pray daily for our baby, but when he asked to pray I instantly said yes and bowed my head.  

His Prayer.

Made My Heart Sing.

He prayed that Jesus would heal her and let her dance again.  That's all I needed to hear. Oh, to see Emmy move her graceful moves and swing her little arms in a way that only she 



 ' 'is my heart's desire.  So just as I was giving up hope, God showed up in a bold way. 

Then Emmy said, "I love that man"!  Even she loves to be prayed for!  Even if by a complete stranger.

I also heard back from the mama who said her daughter, who also suffered from ADEM, is now one of the fastest runners in her college running team.  She told me her daughter was paralyzed, lost all memory and went back to "toddler"stage.  The doctors told her to not even try to help her, the therapists lost all hope, but they DIDN'T GIVE UP.  AND Her brain NEVER HEALED.  Every single lesion what right where they started.  But her brain totally rewired itself.  Oh, the feeling of joy when I heard that.  Not because I expect Emmy's brain to not heal, but that case after case I find that brains can rewire and take over for places that doctors think, "If it's a main area (like the basal ganglia) that is damaged, there is no way it can heal" BUT it CAN and it WILL"!!  This, of course, is after the doctor Monday said I should start thinking about Deep Brain Stimulation again since her muscle tone is not completely gone.  I don't even think it is dystonia anymore.  It resembles more of high muscle tone, like cerebral palsy kids.  And I know that there is actually a few things that are really quick and not really invasive that takes care of muscle tone, so I am not even thinking DBS is an option.  

So even when I feel like I have hoped all the hope there was left to hope (tongue twister), God keeps giving me extra doses and gives me the energy to make it another day.  PT is on the calendar to start sometime in September and oxygen therapy will continue to 40 dives, then taking a couple months off and starting again.  This whole thing is still surreal and I pray everyday for Emmy to walk, talk and play again.  I don't really pray for healing as much, since I believe she is healed, the disease is gone, but now I am praying for her body to start doing what God created it to do!  Our bodies are magnificent and I am in awe every day, like today, I see Emmy do something that shows me she is still moving in the right direction.  She was laying on her tummy and pulled her legs up to her chest and pushed up with her arms, putting her in the crawl position.  For both arms and legs to move at the same time, at the same pace is amazing.  Her right and left side are so uncoordinated and I love seeing that both sides of the brain are finally talking with one another!!!  

Thanks for praying and lifting Emmy up!  She starts school in 2 weeks (along with Everett and Eli), so maybe pray for me!!! 

(June '14, right before encephalitis)

The Race We Run

Running is my prozac, my release, my quiet time that I can pray and just think clearly.  But with one child with a disability, three others that need attention, a husband who needs companionship and a house that needs cleaning, running takes the back seat.  How does one find "me time" when it seems trivial and down right selfish?  I ran three times last week.  Once because I was "kicked" out of the house and told to go run!  The other two because I feel that Emmy is getting that much better and our house is running a little more smoothly.  

Women have a hard time finding "me" time.  We always put others ahead of ourselves, which is our job.  It is in our DNA to take care of others, but why doesn't it feel good to give ourselves 30 minutes a day?  I thought it was hard carving out that time before Emmy became sick with homeschooling, but now it is almost impossible.  But I NEED it.  I crave it.  I am calmer, more patient, and less distracted when I run.  I sometimes break into a run and feel such release. I hear God talking to me, not ME always asking him questions and begging for miracles.  Listening is a skill that I have to remaster.  The distractions are deafening.  But when I run, there is nothing to distract me (besides Gumbeaux, if I take him with me).  Getting Emmy better seems to be my biggest distraction, but I am learning to finally put my attention back into "normal life" again.  Instead of one moment at a time, I am up to planning one day at a time (Lord, Jesus!)!

And another reason why I need to run is because I find myself living in fear.  Fear is the absence of Faith.  And conversely, Faith is the absence of Fear.  I have noticed that for us, we want to have faith, but fear would overshadow the unknown of Emmy's future, our future.  We weren't seeing Emmy get better and that kept us living in fear.  And what I realize now, and so understand what people go through, they just need a glimmer of hope to pull them out of the grips of fear and back into the beaming light of Faith.    And we have been seeing those glimmers of hope lately and it is giving us so much more Faith.  And the funny thing is, when we started operating in Faith and Hope, Emmy would show even more signs of recovery.  Our attitudes and behaviors really do change the circumstances around us.  Maybe I am running more because I am finally operating in Faith instead of fear!

Emmy has completed 18 oxygen therapies.  Before she started she couldn't do any of the following things:
Hold her breath under water
Crawl up our stairs
Stand, flat footed, for longer than a minute
Crawl more than one step
Talk in sentences with more than 3 words
Roll over in the bathtub and help transition herself out
She had NO short-term memory, and now wakes up reminding me what we are going to be doing for the day!!!

This is huge for us, it isn't the end-game, but it is movement in a positive direction.  It is the race that is set before us.  Others have races that may involve overcoming addictions, stopping abusive behaviors, being a better parent, being a better wife/husband, witnessing more, doing whatever is on their hearts, but ours is getting Emmy well and our family back to a place of peace and rest.  And believe me, we will not rest until Emmy can walk again, which she reminds us about every day!  

I love reading Hebrews 12 because it reminds me to have joy no matter the circumstances and to keep my eyes on Jesus.  Joy does not mean I am happy with what is happening to our family, to sweet Emmy, but Joy that all will be made whole one day.  It reminds me to set a pace of endurance, which at first we had no idea we would still be carrying around a 55 lb girl over a year later.  But setting our pace is paying off, none of us are broken. Which then reminds me of the song by the David Crowder Band.  I feel like we have been so beaten down, but we aren't broken.  And every time the clouds pass, we are just immersed in His glory and affection!

How He Loves

He is Jealous for me, 

Loves like a hurricane, I am a tree, 

Bending beneath the weight of His wind and mercy.

When all of a sudden, 

I am unaware of these afflictions eclipsed by glory, 

And I realize just how beautiful You are, 

And how great your affections are for me.

So maybe I will get to run this week, maybe not.  But I do know that we will all be running the race set before us, getting Emmy to therapy, preparing Ella for her first day of High School (gulp) and keeping the boys occupied so they don't get lost watching minecraft youtube videos!  

You can read about hyperbaric therapy at the health center Emmy goes to at www.hrhyperbaric.com or even help us raise money to pay for the rest of her oxygen therapies by visiting www.youcaring.com/emmystrong  I will leave you with the verse that reminds me to keep running and to remain #emmystrong!!!

Hebrew 12:1-2 Therefore, since we have so great a cloud of witnesses surrounding us, let us also lay aside every encumbrance and the sin which so easily entangles us, and let us run with endurance the race that is set before us, 2fixing our eyes on Jesus, the author and perfecter of faith, who for the joy set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God..

Emmy had some much needed "friend" time last week!