Running from God

 Recently, I’ve had a deep desire to run from God and from everything that’s been my foundation all my life.  I’ve been angry.  I’ve been hurt.  I’ve been confused.  I did not feel these things when Ellie Kate died.  I had complete peace then, even though there was much heartache (which continues in waves to this day).  These recent feelings . . . are different.

 

It’s just that it never seems to stop for us.  NEVER.  Even yesterday, Mike lost a tire and ended up having to get four new tires (thank the Lord he was kept safe); add that to the recent termite findings, the broken microwave, the house flood and needed remodel, the bloodwork and treatment up in the air for Henry, and then many hospitalizations for Lucy – WHEW, I can’t even list it all.  Literally, it’s one thing on top of another, repeatedly – for years and years and years, and I don’t understand it.  I know we are not alone.

 

I’ve wanted to run from God in the last several days.  I tried to block Him out.  I didn’t want anything to do with this Creator of the Universe who was allowing so much turmoil, heartache, and struggle to our family.  It makes me hurt for my children and for my husband, more than anything. I don’t understand, if we’ve surrendered our lives, our marriage, our children to the Lord, WHY there is constant turmoil.  Then, it hit me . . .

In His patience and kindness, God has reminded me of some important things on this, the week of our 22^nd Wedding Anniversary:

1.     I am unable to separate myself from my God.  I made a covenant with Him, and He with me.  I am tethered to Jesus – not to a religion, denomination, people group, or political affiliation.  I am forever woven in with Christ.  This was a sweet reminder that I am not alone, that all those other things don’t matter – only my personal relationship with Him. 

2.     When we married, we dedicated our lives, our future, and any ministry God would give us, over to Him.  Why should I be surprised at the “fiery darts” we face as a family, and as individuals, when we’ve given it all to Him? On the contrary, we should expect these trials when we’ve surrendered it all to Him.  If you haven’t experienced trials, if you aren’t experiencing messy-ness as a Believer, then something is wrong.  It may not be seemingly constant, like ours, but it will be on a regular basis.  God allows that so we will draw near to Him and realize we need HIM alone. 

3.     God meets me where I am; the same is true for you!  When you feel lost, confused, broken, hurt, disillusioned . . . God is okay with that!  He welcomes it!  He longs for you to come to Him in any way, shape, or form.  He just loves you and wants communion with you.  He will NEVER turn you away, no matter what you are feeling or thinking!

4.     I still don’t fully understand. It’s true – I don’t understand all this mess we’ve walked through and all we’ve walked through the last seven weeks.  It doesn’t make sense and it does make me hurt for my husband and children.  The thing is – it is OKAY for me to not understand!  There is freedom in that, for you and for me.  Isn’t that amazing?!?  He meets us where we are.  He loves us where we are.  He works in and through us where we are. 

Jesus promises to never leave us or forsake us, and I can choose to cling to that, even if I’m barely holding on. God knows.  He understands.  He still has good things for me.  As someone tethered to Him, He will still do good works through me, for HIS glory!

5.     To be clear, I don’t pretend to have experienced persecution.  Lord knows American Christians do not face the kinds of persecution other Believers do all around the world. Trials can (and will) be different than persecution. 

 

As for updates, on Thursday we will get the results from some important bloodwork for Henry.  These results will give us direction as to what comes next.  He continues to struggle with flares – we aren’t sure if it’s due to the mold found in our house (thankfully now cut out), or if it’s caused by the upheaval from all that’s going on in the house. 

 

Henry’s counselor, who has been with him for many months and has made great headway with him, has stepped aside this week, encouraging us to find a new person to take his place.  You can imagine, this is frustrating and devastating to an extent.  We need to know what steps to take next.  We need things to fall into place for our son.  Our family covets your prayers for clear answers and a direction/plan forward.

 

We hope to move into an Air B and B by next Monday, at the latest.  So, we will be packing up valuables and our kitchen items/pantry.  Thankfully, we do not have to move furniture – they will move that for us.  We may be out of our home for a couple of weeks, which isn’t ideal since school begins August 8^th.  It’s been seven weeks tomorrow since the “flood” – much too long – and we are ready to get new floors, cabinets, and a few walls.  We are grateful to have a trustworthy contract company!  Thank you for praying for a smooth transition for Lucy, our nurses, and our kiddos during this time. 

 

My hope and prayer is that this post meets you where you are and encourages your heart, mind and spirit.  There is so much good yet to come.

 

With Hope,

Ryan

Floods, Mildew, Construction and Life-Altering Blood Test Results

 The Flood (and mildew and construction): 

Almost four weeks ago, we had an extensive flood in our home.  The filter on the bottom of our fridge (bc, you know, there are somehow TWO filters) decided to literally explode in the middle of the night.  A flood of water was unleashed, shooting out, until around 3:30am, when Mike noticed it as he was checking on Lucy.  This was the same night as Bowen Jane's first sleep-over so you guessed, the 1.5-2inches of water soaked most of the floors in the house, along with ALL of the pillows, blankets, sleeping bags, plush-mellows, etc.  Mike and I looked at each other like helpless teenagers or children, "What do we do? Who do we call?  What is even happening?!".  

The Lord led us each to do what was needed - Mike picked up a wet-vac from my Dad. I called on neighbors and church friends, who graciously dropped off fans and even delivered dehumidifiers!  One friend dropped what she was doing and spent the day with me, calling her own handyman to come and fix the fridge (which eventually was fixed, after several trips to different hardware stores and other adventures).  We laid all the wet laundry, blankets, etc outside and on the trampoline, genuinely wondering how women of previous generations hung their clothes to dry on the regular. 

The insurance company was called and gratefully, we have home-owners insurance.  Unfortunately, they've dropped the ball.  Four weeks in and we are on our second restoration company.  Our floors are partially pulled up all around the house and apparently, all of them will be replaced (except in Lucy's room - the room which wasn't touched by water).  The water damage has affected the inner and outer walls and our cabinets, baseboards and more.  It's stirred up all kinds of allergens, which is making us all sneeze, cough, etc.  We hope to have more answers this week, but we know major construction is coming to our home - NOT something we hoped or planned for, that's for sure.  It's difficult, not yet having a plan or knowing what it will all look like.  

In the midst of this, Henry's had MRSA due to his obsessive picking of his own skin - a symptom of his Autoimmune Encephalopathy.  So, that's been fun.  

Life-Altering Blood Results:

Several weeks ago, I found the name of a new doctor in Edmond, who successfully treats PANDAS.  She was recommended by a mother who said, "this doctor literally saved the life of my child".  I saw videos of this woman's daughter and the changes in her since having the treatment prescribed by this new doctor.  The thought came coming back to me - why not reach out to that doctor?  We have tried EVERYTHING for Henry: Psychiatrists, Psychologists, Immunologists, Neurologists, many different counselors and therapists, different schools, inpatient treatment, outpatient treatment, out of state treatment . . . and NOTHING has stuck, nothing has worked, nothing has helped Our boy.  

Henry just turned 16yo and it's time for something to happen.  As his mom, I am tired of pushing, asking, reading, looking for help, holding out hope for the future.  I've been doing that since Henry was four years old - when his symptoms first began.  That is TWELVE YEARS.  12yrs of Henry being affected, his siblings being affected, his parents and grandparents being affected.  It is beyond heartbreaking in every way.  Truly, Mike and I would choose NKH over PANDAS/PANS any day of the week, and that is saying a LOT.  We would choose a debilitating, terminal disorder over Autoimmune Encephalopathy????  YES, any day of the week.  THAT is the extent of tortue which comes with this diagnosis.  

So, we went to the new doctor and she ran tons of bloodwork - Henry was a champ.  She saw he was struggling; she saw the scabs on his face and arms, where he had been picking, where he can't stop picking.  She could see him visibly on the verge of a panic attack, me unable to calm him.  SHE SAW IT AND SHE KNOWS IT, bc her daughter has the same condition.  I left a little hopeful and very prayerful.  "Please God . . . please . . . if something doesn't help Henry now, I don't know if we will ever find something that will . . . ".

On Friday, we met with the doctor again and received the blood test results.  I was shocked, for many reasons.  For one, NO DOCTOR, over these TWELVE YEARS has done this extensive of a blood panel.  CAN YOU IMAGINE?????  WHYYYYYY???!!!!  We now have results which explain Henry's behavior IN DETAIL, which continues to bring me to tears.  We now know HOW to treat Henry in specific ways, and it isn't with IVIG, as we had thought and done in the past (although IVIG has certainly helped him in the past).  

Henry's had lyme disease in the past as well as Borrelia (cat-scratch fever).  HHV-G has attacked his body and his brain, thus causing the Autoimmune Encephalopathy.  He's been struck with so many diseases, including strep and other things.  HOW are we JUST finding out about this????  Thankfully, God has matched us with a doctor whose daughter is in a similar situation, so she knows how to treat it.  We will be seeking a new treatment called TSO, which is very expensive and includes sending Henry's DNA to Europe.  His DNA will be used to create a personalized infusion, which will take one or two times (hopefully here in OK).  We don't care how much it will cost - we will sell everything, anything, all things in order to make our boy well.  We are just praying that it all falls into place soon, as school is quickly approaching.  

So, in the coming days and weeks, we will be dealing with constructions, tearing down of walls and tearing-up of floors within the house.  We will be moving furniture and picking out new paint colors, etc.  Hopefully, we will see Henry get the transfusions he needs to get better - to help him succeed in society, to put his mind at ease and let him rest, for once.  School will be starting and I will try to navigate that as well.  

It's a lot.  This post is A LOT.  WE are a lot, but you know that.  I wish it weren't that way.  I wish we were the happy family picture you see on the Fourth of July; that's what I dreamed of and that's what I thought happened if you obeyed and did things "right".  But, that's just not the case.  Even Job "did things right" and suffered terribly.  The Disciples gave up everything to follow Jesus and yet, they too suffered unimaginable things. I am reminded of this daily. 

Thank you for praying.  Thank you for sticking by us, for loving us through all the ups and downs.  Specifically, thank you for praying for Henry - I ask that you continue to do so as we try to figure out what is best and how to get it done. 

Holding onto Hope (even if only by a thread), 

Ryan xoxo