OASIS (not the band, just for clarification)

 

OASIS (not the band, just for clarification) . . .

 

It’s no secret, this past summer has been full of wild mishaps and unplanned “adventures”, from our house flooding to Mike’s car being totaled.  I can’t tell you we’ve made it out better on the other side, but we’ve survived and I guess that’s something.  That being said, sharing the following story with all of you is something I’ve longed to do – it’s just very  emotional for some reason.  I think you will understand, as it all has to do with my generous friend, Jessica Jenkins, her friend Jenni, along with the rest of their crew. 

 

When the contractor was ready to start on home repairs from the flood (new floors, walls, work on cabinets, etc), I knew we needed to find a place to stay.  There was no way we could live in our home while the “remodel” was taking place and thankfully, our insurance was happy to help us find something (they suggested a hotel).  Where could we find a place for five family members, two dogs, home health nurses, as well as all of Lucy’s medical equipment (including a medical bed)? Immediately, I thought of my friend Jessica Jenkins, as I knew she was traveling over the summer.  Would she possibly be open to allowing us to rent her home during our remodel?  Would she even be gone during those times?  I wasn’t sure, but I reached out.  As soon as Jessica heard my request, she was on board.  I found out that Jessica and her husband had actually moved out of the house and were traveling until the end of the summer, when they would come back and get the rest of their things.  I couldn’t believe it!  We had a home to move into for the exact time we needed it.

 

Ya’ll, this isn’t just any house.  This is a home built specifically for Jessica’s boys, Caleb and Jackson who were both in wheelchairs and had extra-special needs like Ellie Kate and Lucy.  Every single doorway was wide enough for Lucy’s wheelchair – she even had her own, special bathroom!  EVERYTHING was accessible, which was SUCH a gift.  The medical bed left in the room is the exact match to the one Lucy currently has (also one Jessica gave to us), which meant Lucy didn’t have to adjust to a new bed!  There was storage galore for medical equipment and supplies, as the house was literally built for that very thing.  There was even a gorgeous, covered porch, which we all loved and a POOL that was handicap-accessible.  It was truly an OASIS for us at the end of the summer, one we desperately needed. 

 

The most precious thing about all it all is this: Caleb and Jackson passed away only a couple of years ago, just within months of each other.  Can you even imagine?  Holding one of your children as they die is excruciating.  Doing it twice . . . it’s something I haven’t yet had to do and something I absolutely dread.  The absolute strength, resilience, and courage this momma has shown by letting us use her sacred space is unbelievable.  I am beyond moved.  It leaves me breathless just to think about.  The generosity, the chosen kindness, the selflessness involved . . . I am in awe. 

Caleb and Jackson loved all things Disney and Marvel.  They loved school and all their many friends.  Caleb and Ellie Kate were in class together for a time, and the same for Jackson and Lucy.  The boys loved their dogs as well as soccer.  I have yet to see a photo of them without huge smiles and I think that’s a testament to their family and shows just how well they were loved here on earth. 

 

Jessica’s best friend Jenni has been incredible.  She’s helped organize our house, helped us keep things in order in Jessica’s absence and took care of all sorts of details (she’s still helping us).  It has brought relief beyond what I imagined and wasn’t something I ever expected.  I am just so grateful.  Jenni too must have courage and selflessness to up and help our family in these big ways, out of the blue, and to such an extent. 

 

There are so many other things I could share now that we are back home, but I wanted you to know this story.  I pray it sticks with you.  I pray and hope you remember Caleb and Jackson and their momma Jessica, who sacrificed so much on our behalf. 

We are also grateful to Amy Mikes Orange, a friend from Christian Heritage, and her team at Level Handyman Services.  Those friends who’ve graciously helped us move out and move in have been invaluable – the Goss’s, the Nelson’s, Shay Viles, our neighbors and friends with fans and dehumidifiers, as well as our Frontline Community and Discipleship Groups!!!  I’m sure I’m missing people and I’m so sorry about that! 

 

Thank you for choosing to remember Caleb, Jackson, and Jessica specifically.  Their lives mattered on earth, and they continue to make a difference.  What a difference they’ve made in and for us!

 

Ryan

 

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

Homegoing

 

Oh, the Holidays, this time of year, bring about countless emotions.  These emotions, thoughts and feelings run close to the surface at times, they show the good, the bad and the ugly – at least in me, as a mom.  I can only begin to imagine how my children must carry things; I know their emotions, memories, feelings lie close to the surface as well and I so want to give them space to feel in a healthy way.  One foot in front of the other.  One moment at a time.  As my Dear Mother reminds me, these are the magical years and I have the opportunity and privilege to make it special for my family, for my children – I’m determined to do that, even in my own chaos. 

 

December 4^th would have been Ellie Kate’s 18^th bday, but she is forever seven years old.  In a few days, on December 23^rd, we will celebrate Ellie’s Homegoing Day, the day she took her last breath on earth and her first breath in Heaven.  On that same day, during those same hours, we celebrate the birth of my little sister; we also celebrate the seventh birthday of our Beloved Bowen Jane, our gift of redemption, HOPE, joy and so much more.  How do you tie it all together?  How do you make it all make sense?  How should emotions, thoughts, feelings, memories, heartache, heart-joys all align????  How do you assist your children as they process those things?  How do you remind your precious, chosen Daughter, what a blessing she is, what hope and joy she brings, dreams she fulfills during a time she will always know we are mourning????  How do you do that?  How do I do that, as the mom, the one who is supposed to hold it together?

There are some traditions we’ve easily slipped into, like Bowie helping me decorate Ellie Kate’s Christmas tree, which hails brightly in our living room.  I hope this will be a tradition we hold dear and pass down for generations.  Each year, we seem to add more things – traditions which bring us more joy and keep us busier. Things like waiting to purchase most of our gifts until December 22^nd and 23^rd – we take Bowen out to help purchase Christmas gifts for the family, and she absolutely loves the two on one attention she receives on her special day!  We usually include lunch of her choosing, grab a hot chocolate and end the day wrapping gifts with Lucy (which happens to be Bow’s favorite part).  

Long gone are the days of pre-purchasing gifts, planning well in advanced, wrapping weeks in advance, having gifts slowly stack up under the tree in expectation of the big day.  Now, it’s more of a “survival mode”, at least for me, although I try not to let the kids in on that part of it all.  I hope it just feels more spontaneous, less planned-out, more exciting and fun, extra child-like, if you will.  I pray it will always be special and that precious memories are made. 

 

Advent is also something we are learning to fully celebrate and understand here in our home.  Playing traditional Christmas carols, hymns and songs, teaching the truth  about Christ coming to earth as a tiny, vulnerable babe.  The miracle and complexity of it all . . . it hits me differently every year; some part of the Truth and Mystery of it unfolds fresh and anew in my heart and mind, which I am eternally grateful for.  Is it the same for you?  I want it to be the same for my own family, for our children, to be able to look past our own tragedies and look toward (and forward to) THE Light of the World. 

My Precious Ellie Kate, with her beautiful, soft curls and tender, baby-like skin . . . that devious giggle we miss so much, and those “pat-pats” from our original Wildcat-girl.  While on earth, she was strong and brave and silly and goofy and GORGEOUS.  Yes, she was the most beautiful Ellie Kate of all time, and she was my daughter; she IS my daughter, and I adore her.  

It’s been eleven years and memories start to fade, pictures in my mind have started to shine a little less, and I am so devastated by it.  I long to remember how Ellie smelled, how it felt to kiss her earlobe (something I frequently did), even the heaviness of carrying her on my hip.  I miss the smell of her freshly-washed hair (I washed it everyday) and I hate that one of my last memories is touching those soft curls – but they no longer smelled sweet – they smelled of formaldehyde and that is devastating to me.  I miss dressing her and helping her get on the bus for school.  I miss hearing her make Henry mad, I miss hearing the sound of her knees sliding across the tile floor as she “hopped” around the house, so independent.  

I once told Ellie that she was my best friend, and it’s true – she was so dear to my heart, a part of me.  Ellie Kate is forever, always, a part of me, and she will be until I am reunited with her again in Eternity. 

I am so thankful for the Light of this Season and for the promises Christmas brings.  I am thankful for the HOPE of Christmas – the hope Jesus brings through His lineage, His birth, His life, His death, His resurrection.  HOPE.  I’m clinging to it this season, and I pray you will too.  If you'd like to watch Ellie Kate's Homegoing Celebration, please do so by going clicking HERE. 

 

Ryan