Deep Calls to Deep - At My Wits End

Oh Friend, is your heart heavy? Are you at your wits end? Do your tears flow, day and night, wondering where God is in your turmoil and distress?  Do you wonder how God will provide your needs, and does it seem impossible to do so?   If you are any of these things, I AM WITH YOU.  For Ages, Believers have felt this very same way.  Look at the Disciples with their trials.  Look at the tribulation Jesus experienced in the Wilderness.  

Psalm 42:5-9 TLB

My soul is cast down within me . . . 

Deep calls to deep at all your breakers and your waves, 

the roar of your waterfalls have gone over me.  

The Lord commands his steadfast love, 

and at night his song is with me,

a prayer to the God of my life.  

I say to God, my rock:  “Why have you forgotten me . . . ?

Psalm 107:27-28, 

"They were at their wit's end.  

Then they cried out to the LORD in their trouble, 

and he brought them out of their distress."

"Wits End Corner"
By Antoinette Wilson

Are you standing at “Wits End Corner” Christian, with troubled brow'
Are you thinking of what is before you, And all you are bearing now'
Does all the world seem against you, And you in the battle alone'
Remember at Wits End Corner Is where God’s power is shown.

Are you standing at “Wits End Corner” Blinded with wearying pain
Feeling you cannot endure it, You cannot bear the strain.
Bruised through the constant suffering Dizzy and dazed, and numb
Remember at Wits End Corner, Is where Jesus loves to come.

Are you standing at “Wits End Corner” Your work before you spread?
Or lying begun, unfinished And pressing on heart and head.
Longing for strength to do it. Stretching out trembling hands
Remember at “Wits End Corner” The burden bearer stand.

Are you standing at “Wits End Corner” Yearning for those you love,
Longing and praying and watching, Pleading their cause above,
Trying to lead them to Jesus Wondering if you’ve been true'
He whispers at “Wits End Corner” “I’ll win them as I won you.”

Are you standing at “Wits End Corner” Then you’re just in the very spot.
To learn the wondrous resources Of Him who faileth not!
No doubt to a brighter pathway Your footsteps will soon be moved
But only at Wits End Corner Is the God who is able, “proved.”

When Ellie Kate was born the song, "I will Praise You in this Storm," came out.  I remember my Precepts teacher playing it in class, singing it over me and physically holding me close.  With all of my heart and soul, I believed our "Storm" would soon pass.  I was realistic, of course.  My Daughter had a terminal genetic disorder but, I was sure the Storm wouldn't last forever.  And yet, here we are, still in what feels like the very middle of the storm, not anywhere close to the end; not anywhere close to the shore, to calm waters, to the day when the heaviness is all-together lifted.  

I don't understand why the "Storm" still lingers.  In my weakness, when my heart is weary, as it has been these last weeks, I find myself wondering if it truly will ever come to an end.  YES, God provides.  YES, He is still God and He provides and holds us; yet, the Storm continues to rage and it's so easy to get lost in the sorrow, heartbreak and unknown of what that is.  I know I am not alone in feeling this way.  I cling to this knowledge: God too has tasted such Storms, in the human form of His Son, Jesus.  Even Jesus asked His Father to "take this Cup from me . . . " knowing the brutal beatings, crucifixion and earthly death would be too much for Him to bear.  

Lord, brand this TRUTH on our hearts . . . 

• Until He brings us out of our distress and heartache, He has promised to be with us and to never forsake us.  The GOD of Creation, who knows the number of hairs on your head, has promised not to let you walk this heavy road alone.  To me, what's even better than that, is the promise God will draw us closer to Him through the deep waters, no matter how long they last.  

• It is THERE, in the deepest of deep, in the hardest of hard, when there seems no end to heartache and distress, where GOD draws us ever-so-close to HIM.  It doesn't happen when everything's going right or when you don't have reason to depend upon God.  It doesn't happen when you are in "control" of your schedule, finances, and plans.  It happens when you walk through the DEEP, when you cry out to God for His intervention.

Even if the Storm doesn't stop, even if the Storm doesn't seem to ease up immediately, or gets worse . . . we CAN trust Him.  I am learning to CHOOSE to trust and CHOOSE to believe, even when it feels impossible.  In these times, may we ask Our God, "I believe, help my unbelief," Mark 9:24.

Jesus, your ways are always higher than mine.  You know my past and future; you know what is best for me, for my marriage, for my children.  YOu've felt human heartache and you know it deeply.  I choose to give you my Storm and I ask you to be in control, to take it and use it for YOUR glory.  Father, I ask you to use our Storms to take me deeper with you, to develop my character and the character of my family.  I ask you to be glorified, for that is the main purpose of your Children here on earth - to know you and make you know.  Even when I don't understand, even when I fight against the plans you allow and cause, I CHOOSE to believe you will cause it all for OUR good and for YOUR glory.  

May our storms and lives bless you, even if we don't understand!
Ryan

Psalm 107:27-32 The Message (MSG)

23-32 Some of you set sail in big ships;
    you put to sea to do business in faraway ports.
Out at sea you saw God in action,
    saw his breathtaking ways with the ocean:
With a word he called up the wind—
    an ocean storm, towering waves!
You shot high in the sky, then the bottom dropped out;
    your hearts were stuck in your throats.
You were spun like a top, you reeled like a drunk,
    you didn’t know which end was up.
Then you called out to God in your desperate condition;
    he got you out in the nick of time.
He quieted the wind down to a whisper,
    put a muzzle on all the big waves.
And you were so glad when the storm died down,
    and he led you safely back to harbor.
So thank God for his marvelous love,
    for his miracle mercy to the children he loves.
Lift high your praises when the people assemble,
    shout Hallelujah when the elders meet!

All the Hurts - Crying Out

"And now, my soul is poured out within me; 

Days of affliction have seized me.  

At night, it pierces my bones within me, 

and my gnawing pains take no rest." 

Job 30:16-17

Grateful for a Life Well-Lived . . . 
It's been a blur, these last few days and weeks.  Last week, Mike's Daddy died.  It's hard to take that in.  It's hard to believe it, to be honest.  Stan was diagnosed with Stage 4 cancer last October.  He underwent treatment in Norman, Oklahoma but after visiting several cancer centers, he and his wife Jayme (Mike's Momma) decided to seek treatment in St. Louis, MO.  Drew, Mike's little brother, lives in St. Louis with his family and they assisted Stan and Jayme as they moved and began treatment there in Missouri.  

Stan underwent surgery where they took out part of his tumor and reversed the ostomy bag which was placed last October.  So, unfortunately, Stan became septic and also contracted c-diff, a serious infection in the intestines.  He was moved to a wonderful hospice center on a Friday and died just a few days later, his wife by his side.  

Mike was able to drive and be with his daddy during those last days.  The day following my minor surgery, I was able to fly out to St. Louis, also spending a few days with Stan.  Henry went with me, taking care of me on the trip.  He truly was exceptional and I think it was a gift to Jayme and Stan to have him there.  Mike's sister, Jenny was also able to come in with her husband, Greg.  Every one of Stan's children was able to talk to him, laugh with him and cry with him.  Stan's sister and brother also drove in from Oklahoma and were also able to spend time with their brother.  It was a bittersweet time as we watched the natural give way to the supernatural.  

What brings me hope is knowing Stan has the promise of eternal life through Christ.  He's now with his Momma, who passed away just a couple of years ago, as well as with other friends and family, including Ellie Kate.  Ellie LOVED her Paw Paw and, OH!  How I wish I could have witnessed their reunion!  It makes me so happy, knowing Ellie has her dear grandfather now with her.  A celebration of Stan's life will take place this Thursday, May 3rd at 11am and will be held at Bridgeway Church in OKC.  
Below is a tribute I wrote for Stan, whom I dearly love . . . 

Stanley Wayne McLaughlin

Obituary by Ryan McLaughlin

Stanley Wayne McLaughlin was born in Las Vegas, NV at Nellis Airforce Base to Joy and Sterling McLaughlin. After a valiant battle with cancer, Stan left this broken world in St. Louis, Missouri, with his faithful wife, Jayme by his side. Because of Stan’s personal relationship with God, he had no fear in death, having full assurance of a perfect, peaceful, eternal life with his Creator.

“Stan the Man” is survived by the Love of his Life, his wife of 45 years, Jayme Gresh McLaughlin; sister Jill McLaughlin Bougie, husband Larry Bougie and family; brother Steve McLaughlin and wife, Brenda and family, all of Northeast Oklahoma. Stan also leaves behind three children - Jennifer McLaughlin Sutherland (husband, Greg Sutherland) of Dallas, TX; Michael McLaughlin (wife, Ryan Elizabeth Tully McLaughlin) of Oklahoma City, OK and Andrew McLaughlin (wife, Elizabeth Benoist McLaughlin) of St. Louis, MO. Stan was the perfect “Paw Paw” to his many grandchildren, who would follow him like the pied-piper. He was their endless playmate and will be terribly missed. Stan’s grandchildren include Aimee, Scott, Sam, Gabe, and Emalee of Dallas; Conner, Henry, Lucy, and Bowen Jane of OKC and Andrew, Matthew and Molly of St. Louis.

Stan is preceded in death by his mother, Joy McLaughlin, and father, Sterling McLaughlin as well as his beloved granddaughter, Ellie Kate McLaughlin. We have no doubt, their heavenly reunion was more precious than we, on earth, could imagine!

A natural athlete, Stan played basketball at Nathan Hale High School and went on to play at the University of Tulsa, graduating with a B.A. in Marketing and Management. While his children played sports, Stan served Midwest City high school by filming games for the team. During his time on earth, he worked as a salesman for Kraft, and in most recent years, worked as a Realtor for Keller Williams, partnering his wife, Jayme. He loved being a realtor and excelled at making friends and selling homes. Stan never met a person he didn’t like and was always quick to make others feel comfortable, especially with his gentle-giant countenance and silly humor.

Stan McLaughlin loved the Lord Jesus with his entire being, having surrendered his life to Christ at an early age. He had a deep desire to study God’s Word and spent years involved in extensive Precept Bible Studies, also leading various Precept classes at Bridgeway Church in OKC, where he and Jayme faithfully attended and served Communion, over many years.

Along with a great love for OU Football, Stan Musial, and The Beatles, Stan’s life and example lay out a beautiful legacy of faith in Jesus Christ and a sincere love for others. Stan leaves a breathtakingly beautiful legacy of marriage with his Bride Jayme, who is his very best friend and finest confidant.

“Faithful” - when we think of you, Stan and share your stories and say your name, we will remember you as this... Stan: a faithful friend, faithful worker, faithful Christ-follower, faithful husband, faithful father, and faithful son. Your example of faithfulness in your happy marriage will live on for generations to come. Your dedication and hard work are things for which we will strive, and we will instill them in future generations. We will continue to work tirelessly, by your example, finding and adding humor to every part of life. We will say your name. We will remind your generations of the Covenant you made with God and the promises He gives us as His Children. Until we are One Day reunited, we hold you close to our hearts, never forgetting the legacy, which in your absence, now defines you.

While flowers are obviously welcomed, as an alternative, in lieu of flowers, we ask you to support one of the following organizations in Stan McLaughlin’s name . . .

OKC Hope Link, A Not-For-Profit Corporation
228 West Hefner Road
OKC, OK 73120
http://www.okchopelink.org/Give.php

Crying Out to God for Extension of Life . . . 
When I landed in Missouri that Saturday, I received a message from my Dear Friend, Julie Haller., which took my breath away.  There had been an accident with her son, Rye who is one of Henry's very best friends.  Rye wasn't breathing.  He didn't have a pulse when he was found.  He was on his way to OU Children's and Julie was calling on friends and strangers alike to pray for a miracle.  Since that day, Rye has been on the ventilator and in the PICU.  Doctors have not given much hope and in fact, those with organ donation came in early on to speak with the family (which, in my opinion, was premature).  As Julie explains, Rye's in NOT a traumatic brain injury like someone in a car accident. 

Rye in Mexico on a recent family trip (from Julie)

This week has been hard for my friends, although I do not pretend to know or understand at all, what they are facing.  A lively, active, typical, athletic, happy little boy - all of a sudden, in an accident, where his oxygen was cut off for presumably 30-40minutes - how do you even BEGIN to wrap your mind around it?  I've been going to visit my friends at OU when, so many times, they've come to visit both Ellie Kate and Lucy.  The pain they must feel is immeasurable BUT their HOPE is in GOD, the Creator of the Universe, the Creator of Rye, who knows the ins and outs of every single thing going on in his brain and body.  

Recent photo at OU (from Julie)

Henry, Conner and Rye 

Would you please pray for our friends and their precious son?  

Pray specifically for all his momma asks below in the following update . . . 

"After six days of unresponsiveness to hourly neurological checks, it was very encouraging to see Rye’s eyes open yesterday and for Rick to witness him appropriately responding to pain inflicted purposely by the doctor. That means that the doctor pinched his shoulder and he reacted by moving that shoulder. Sometimes brain injury patients would respond to that by kicking a leg, for example. That would be a reaction but not appropriate. We appreciate the many of you have shared encouraging stories of people recovering from brain injuries, even though the doctors would be quick to point out that traumatic brain injuries are very different from Rye’s situation. He went without oxygen to his brain for a prolonged period of time causing cell death. Although Rye was not declared brain dead after the MRI, he was not far from it. We were preparing ourselves to begin the donor matching process today because his physical signs (which the doctors seem to weigh as equal indicators of brain activity as MRI results, etc.) have no proof of any basic abilities. We are greatly relieved that God answered our prayers yesterday for a clear sign that Rye has not yet reached the predicted end. We celebrate that doctors agree that we should wait and see what happens next. That alone is a miracle to us. Seeing Rye’s eyes again today was precious to this momma. Even though the doctor reminded me that this is “all we may get,” it was more than we had expected. God will have the final word on the number of Rye’s days on earth. Until then, we continue to cry out to Him, THE WORD through whom all things were made in the beginning, to remake and heal His child mentally, emotionally, spiritually, intellectually, physically and socially so he “shall not die, but live, and declare the works of the Lord”. We know God can, we pray He will". - Julie Haller

This life is hard - indescribably difficult.  It doesn't make sense, no matter how hard we try to make the puzzle pieces fit.  There are great joys and bliss, but there are also heartaches and pain too deep to describe with words.  The World needs GOD.  I NEED GOD.  I need to know that there is purpose - a BEAUTIFUL purpose and plan for what many times, feels like chaos.  God is with us in the chaos.  Even when you can't feel Him there or sense Him there, He is present.  Even when you can't hear Him or see Him, He's still there.  I do not believe God causes ALL things to happen, but I DO believe He is WITH US through ALL THINGS.  He is our Abba, our Father, and He can be trusted even though our prayer may often be, "Lord, I choose to believe!  Help my unbelief!".  

The Lord is all-knowing.  He is the Creator of life.  

He is, "The Blessed Controller of All Things".  He knows the number of our days, from conception to death.  Stan knew this and his family clings to this Truth now as they mourn.  Rye's family knows these things to be true and they cling to this now as they cry out to God on behalf of their precious son.  

Thank you for your encouragement and love, Friends.  Thank you for praying for our family and for Rye and his family too.  I'm grateful today, knowing God hears our cries.

Ryan

Psalm 39:7, "And now, Lord, for what do I wait?  My hope is in you."
Ephesians 3:20-21, "Now to Him who is able to do exceedingly abundantly above all we ask or think, according to the power who works in us, to Him be the glory in Jesus Christ for all generations, forever and ever, amen."

An Upcoming Milestone and Movements of the Heart

So, it's been a while since I've posted an update on our family.  I will certainly do that here on this blog but as usual, I want to share some things God has laid on my heart.  You see, I'm on the verge of turning 40 - yes, 40 - later this month!   I've been settling my heart on so much lately.  I'm focusing more on my family and less on social media and the world around me.  

My passions are still the same, loving and advocating in the world of special needs, disability, and child-loss, but I've found IMMENSE JOY and PEACE the last few weeks, staying away from "noise".  

While I can hardly believe I'm about to hit this 40th milestone, 
and as the stun of it all slowly wears off, 
God graciously reminds me of His Unwavering Faithfulness, 
and He's done this away from the noise.  

Last weekend, I spent time with my best girlfriends from college (who are still close friends of mine today).  It had been too long since we had all been together, breaking bread and talking about life and even longer since we had been in college (20 years of friendship!).  The main theme which kept coming up was GOD.  Suddenly, amidst our conversation over yummy wine, I was taken back to my college days, days that were full of a lot of personal heartaches as I struggled to find out what I believed on my own, as I struggled to find out who I was apart from what I had accomplished up until that point. 

It was a scary time in many ways, as I left an extremely protected environment at home, released into an environment that was unlike any other I had ever experienced before.   I absolutely admit to making many wrong choices and many times, I didn't like who I was or what I was doing during that time in my life. Of course, it's totally normal for young people to go through this at some point - some go through it during high school, some during college and some even later on in life.  All of us must face the BIG things - who we believe, what we believe, why we believe it and it's taken me up until now to really sort those things out.  No, I don't have everything figured out in any shape or form, but I AM more grounded and I know who I am more than ever before; I know what I believe and I feel more secure than ever, for which I am extremely grateful for!

90's Girls, For Sure! 

So, back to the dinner with friends - I remembered all of those feelings from 20 years ago and how this group of friends stuck by me through ALL of the ups and downs, the messiness and wonder of life at that time.  Our bond has never broken because of our FAITH in the Lord Jesus Christ - knowing He is the Lord of each of our lives, knowing He is the Lord of each of our families, knowing He allows or causes all things in each other's lives, in the lives of our children, and more!  It was so beautiful to look around the table that night, knowing we've walked through children in the hospital, rare diseases, catastrophic diagnoses; troubles in our marriages, job changes, big moves, and more - God has brought each one of us through all of it.  Sweetly, He's allowed us to walk through it together.  He had a purpose for all of the ups and downs and brought us closer to His heart!  He has made us better women, better mothers, friends, wives, sisters, daughters, and Believers and only HE can redeem all of it for His glory!

I think back to some lonely times when I had no idea what God would do in my life or with my life; how would my life even turn out?  And just as He has walked with me and with my friends together, through life and death and everything in between, He has FAITHFULLY walked me HERE, to where I am now at 40 - this beautiful, messy, broken, happy, intense, journey with Mike, Conner, Ellie Kate, Henry, Lucy, and Bowen Jane.  And while I wouldn't always have chosen the hard places, the dark places, and broken places, HE has a purpose for it all and I can TRUST Him.  He has allowed things and caused things to happen, for OUR good and ultimately, for HIS GLORY!  

Young Mamas (notice a pretty-in-pink Ellie Kate on my lap)

Now, we sit as mothers and wives; made up of two counselors, a teacher, children's ministers, and two speech pathologists. Two of us have ministries going on in Africa, two of us have started non-profits and two of us have adopted children.  We have a total of 18 kids amongst us, ranging from ages 1-18 (which is crazy and fun) and our children proudly come from a rainbow of backgrounds including Hattian, Hawaiian and Hispanic!    Seriously, if you would have told us, back when we were in college, that THIS is where we would be, living THESE beautiful lives, entrusted with THESE precious Beings . . . I don't think we would have believed it.  It sounds too good to be true, in many ways!  But GOD has been FAITHFUL, going above and beyond what we could hope for or ask!

How precious is it that the Lord truly IS faithful?!  

I can SEE it and I KNOW it from my life in the past.  

I can trust that it will continue to happen in the future, 
always and forever, because of HIM. 

It reminds me of a song I learned in childhood; 

one I still find myself singing to this day . . . 

"My Redeemer is Faithful and True,

Everything He has said He will do;

Every morning, His mercies are new!

My Redeemer is Faithful and True."

Remember, especially if you are struggling or in a place of doubt or despair . . . GOD IS faithful and true!  

He will do everything He said He will do and SO much more - 

more than you could ever dream up on your own.

Ask Him to remind you of His faithfulness, 

just as He has so sweetly done for me; 

I know you won't be disappointed.

1 Corinthians 1:9 - God will do this, for he is faithful to do what he says, and he has invited you into partnership with his Son, Jesus Christ our Lord.

Numbers 23:19 - God is not a man, so he does not lie. He is not human, so he does not change his mind. Has he ever spoken and failed to act? Has he ever promised and not carried it through?

Hebrews 10:23 - Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.

*******************************************************************************

Family Update: 

LUCY: Sister Sue's had two hospital admissions since I last posted and continues to have good days and bads days.  One of the hospital stays was due to a severe staph infection and we are seeing signs of that returning tonight.  I will be calling the doctor first thing in the morning to see what we need to do.  Obviously, it isn't too concerning at this point but I have no idea how they will want to proceed since the first infection was so intense.

HENRY: This Little Man continues to respond well to the IVIG treatment he received this past summer in D.C.  We are STILL struggling with the payment, which was made upfront on our behalf.  We are still trying to get it approved by insurance and at this time, we are thinking of other ways we can find the funds to pay this large bill off.  IVIG has been LIFE-CHANGING for Henry, in the very best way!  In fact, he needs another round of it now.  We are absolutely choosing to trust the Lord in this as we have NO idea how the initial payment will be paid OR how to pay for another treatment, much less a trip to D.C. for the specialized treatment.  We've been working hard with our doctors here in OKC but at this time, there is no immediate chance (nor chance in sight) of receiving the needed transfusion here.

CONNER: He astounds us each and every day, showing us what a wonderful big brother he is to ALL of his siblings!  Conner doesn't have an easy job, we know that as his parent and yet, he joyfully plays and loves his siblings so well.  He proudly pushes Lucy's wheelchair to this day and now, even proudly pushes Bowen's stroller as well (not at the same time, of course). Conner will be in high school this fall, which is hard to believe for ALL of us (him included), so we treasure each day we have with our son, protectively overseeing all he does.  We are beyond proud of Conner and pray God will set goals and godly desires deep within the heart of this young man who has been entrusted to us.

BOWEN: Bowie Jane continues to be the light of each day for me, each moment, even.  All of us have fallen head over heels for this Little Girl who proudly knows each of our names (and says most of them correctly;)).  Each morning, she wakes and immediately says, "Momma!  My Momma?!", and her busy little self is all around the house each and every moment, never slowing down except to sleep.  This GIFT is not lost on me - we are ALL very much aware of this rare blessing we have in Bowen Jane.  Truly, she is a Gracious Gift of God!

Forever and always, THANK YOU for your continued love, support, encouragement, and prayer.  

I say it often, but not nearly enough, we live off your words of life - 

God gives them to us through you, just like manna.  

So, even if we don't respond or are very late in responding, please know that each message, 

text, and voicemail truly mean the world to us!  

I'm praying this week, for God to richly encourage your heart 

the way He uses you to encourage mine.  

Ryan Elizabeth (the soon-to-be 40-year-old!)

Kisses to Last a Lifetime

The true question which fills my heart and mind is this: 

How many more kisses will I get to give 

before Lucy takes her last breath on earth? 

How long do I have to study her face, her hands, 

those most perfect lips and movie-star eyelashes?  

When will be my last time to see and kiss on those 

 cute little earlobes and dimpled hands!

 I don't have enough time left on earth 

to give My Lucy Belle ALL of the millions of 

kisses I truly long to give her in this lifetime. 

"Time" is a true thief; it steals the most precious of things, and I know you can relate.  

I find comfort in this:  God's infallible Word,  offers Eternal Life awaiting ALL children, all of those with profound disabilities AND all of those who've surrendered their life to Christ, asking Him to the be the King and Lord of their life!  

Even in knowing Lucy will soon meet Jesus and come face to face again with Ellie Kate (can you even begin to imagine what that will be like?!), My human, broken and motherly-heart still wonders and wails in so many ways.  Even as a Believer who knows where I will spend eternity, who KNOWS where my Daughters will spend eternity and that they will be completed, perfect, whole, without any pain, without any sickness, without any fear or tears or hunger or confusion . . . even still my heart cries out . . . 

Would you give me MORE and MORE and MORE times with Lucy

and special opportunities to hold her, love on her and sing to her, 

telling her stories about Heaven?

Will you go before us and provide in supernatural ways?

Will you comfort Lucy even now, preparing her heart, body and mind - her Most Precious Spirit for what YOU have in store, Lord?  

We see the signs and know them too well.  We told Lucy we would fight for her life as long as her body told us to keep fighting but now, just as Ellie Kate's body did, Lucy's is showing us how tired it is and how incapable it is of working correctly.  Hardly any wet diapers.  

No bowel movements, even with Senna (laxative given twice daily) plus daily enemas).  Almost constant state of sleep.  Twitching and seizing and muscles moving in a bizare fashion.  Her food and medicine doesn't go through her belly well and isn't absorbed.  Still, she screams and cries, even with pain medication.  Still, she screams when she even sees me bringing a syringe of formula over to her because she's anticipating the hurt.  

How much longer, Oh Lord will the suffering endure?  
Will you take it out of our hands?  

 Truly, My HOPE is in YOU, Lord from where my Help comes from!  
You reign in Heaven and on Earth and I am so unworthy of your goodness, your mercy, your provision, 
and your gentle hand with Lucy and with the other children.  

Please continue your mercy, Most Holy God.  Please continue to pour yourself out to us in this busy time, this confusing time, 
this space in time which is hard to understand - 
a space in time which I thought would be so far away, God. 
 I don't know how it can be, but I CHOOSE to trust you.  
I CHOOSE to take your cup and drink it. 
Not MY Will but YOURS be done!

 Oh, how I want to kiss Lucy's sweet, tiny feet (which are almost as big as Bowen's)!  I want to kiss the nape of her neck a million times over, to get a little kiss and breathe in her heavenly scent.  I want to kiss every dimple in her hand and then do it again a thousand times over! 

Those perched lips - perfectly shaped and perfectly pink when all is well - I want to kiss them a trillion time over again and put Lucy's "make-up" on her again and again until the dryness is gone.

This life is full of things we just don't understand and sometimes we will never understand what happens to us, through us, because of us.  Tonight I find solace in knowing there is NOTHING God does not allow - there is nothing that can be done without Him knowing and approving, just as we've learned from Job.  

And 

Tonight, I also find solace in His Word - 

the ONLY true and trustworthy thing in this life . . . 

Isaiah 55:8-9

8 This plan of mine is not what you would work out, neither are my thoughts the same as yours! 9 For just as the heavens are higher than the earth, so are my ways higher than yours, and my thoughts than yours.

Isaiah 54:10-14 

10 For even if the mountains walk away and the hills fall to pieces, My love won't walk away from you, my covenant commitment of peace won't fall apart." The God who has compassion on you says so.

11 "Afflicted city, storm-battered, unpitied: I'm about to rebuild you with stones of turquoise, Lay your foundations with sapphires, 

12construct your towers with rubies, Your gates with jewels, and all your walls with precious stones. 

13 All your children will have God for their teacher - what a mentor for your children! 

14 You'll be built solid, grounded in righteousness, far from any trouble - nothing to fear! far from terror - it won't even come close!

Care Calendar:  practical ways to assist our family

Helping Hands account: financial support

Sometimes, It Goes Downhill So Quickly (Lucy Update and More) . . .

Psalm 34:18 (ESV)

The Lord is near to the brokenhearted
    and saves the crushed in spirit.

There's much to update, especially since I haven't blogged in a while and haven't been very consistent in updating these last many months.  This has been quite intentional, as the Lord made it blatantly clear that my family needed my attention more than ever, which has recently proven itself to be true many times over.  I won't lie - today has been incredibly difficult for us all, and while I've felt a pull to post recently, I know after today's events, it is important for me to do so tonight (err - this morning).

 Please bear with me as I try to briefly but sufficiently cover several things, including Lucy's declining health, Henry's IVIG update, DC trip info and more . . . 

Lucy Belle:  Our Girl turns SIX next month, and it's so hard to believe that much time has passed since we were preparing for her arrival and even MORE hard to believe that it's been so long since Ellie left for Heaven.  I vividly remember thinking then, "if Lucy follows Ellie Kate, I at LEAST have SIX, FULL more YEARS of life with her and I will drink in every moment!".  I know that sounds twisted for some, but it is an honest picture of my mind at that moment.  Lucy has been a life-line for me in Ellie Kate's earthly death and she has saved me as I long to be a good mommy to her and to the boys, especially through all of the seasons we face.  

One of our Favorite Summer pics of LuLu - 

feminine and sweet, with her hair growing so long!

Our Sweet LuLu yesterday, snuggling with Mommy

Miss Lu Lu (aka, 'Lullie') has taken a turn for the worse, although she is stable at home tonight.  As many of you know, Lucy went on hospice a few months ago and while we knew she was declining, the main reason for choosing hospice was for palliative care, meaning we could better address Lucy's immediate issues (most definitely including her intense pain) while receiving the attention and other various benefits hospice provides.  It was at that time a few months ago, several of Lucy's doctors at OU told us they thought she was following "her sister's life-pattern" and because of that, they encouraged us to leave the regular Sooner Pediatric Clinic and thus, we are now seen outpatient at The Children's Center.  This was a HUGE decision for us, but we have not doubted it one bit (other than missing our favorite nurses and folks in the SP Clinic).  

Our new pediatrician specializes in medically-complex children and cares for many of our Hope Link friends, and he is on the Board for our current hospice service.  We've been SO blessed by Russell Murray Hospice and never could have prepare nor guessed that this same hospice, these same precious nurses, would soon be caring for FIVE of our Hope Link friends at the same time - walking with two of our dear families as their babes recently left this earth.  

In recent months, weeks and even days, we've noticed Lucy's seizure activity increasing, which we had addressed accordingly.  Right now though, her neurological state and seizure activity is changing SO quickly that we can't really keep up with it.  All along, especially in this decline and in light of what we went through with Ellie Kate (or rather, what Ellie Kate endured in her pain and suffering), our main concern has been that Lucy NOT be drugged and "out of it", but that GREAT efforts be made so that she may be at peace, her body and mind at ease and without pain. 

This week, despite some rough recent days, Lucy started school.  She even made it an entire FULL day this week and YA'LL, that's HUGE!  We are SO incredibly proud of Lucy starting kindergarten and we are forever grateful for her teacher, Jana Neisent and the staff in her classroom, who could NOT be MORE precious, sincere, intentional, kind, and even prayerful.  Though Lucy was able to attend some school, she still has experienced great pain, the source really unknown, and she's needed pain medications to keep her calm and happy.

This morning after an unusually good night with Nurse Emma, Lucy rolled over and vomited and let out a strange cry - all unusual for her.  Emma yelled out for me and once I got to the room, Lucy was completely and absolutely unresponsive in every way.  NOTHING was waking her and we noticed her breathing was labored.  She started taking some deep, strange and struggled breaths so we immediately called hospice, who joined us shortly after.  Lucy's BP has been low, her heart rate extremely high, her temp normal, but shes's chilling and shaking then sweating (unlike her completely).  Even in doing vitals, she didn't wake or stir for many hours this morning, so Mike came home and MiMi (Mike's Mom) ran over to get Henry and Bowie (Conner was at school).  Lucy stirred a couple of times throughout the day but never has been back to herself, back to "baseline".  Tonight, when she has been awake, she's been screaming hysterically with no way to comfort her, and we aren't sure if it's pain or something neurological.  


We know this much about Lucy: 

• Lucy's issues today aren't bc of an overdose of pain meds or meds in general 
• Lucy's gut hasn't worked well for a while; absorption and processing has been slow AND
• We know the gut issues seem to be getting worse by the day. 
• We know Lucy is no longer having bowel movements, even with "help".   

Our Fears for Lucy:  By far, the gut issues are the MOST frightening, as Ellie Kate's life ended when her gut eventually completely shut down, and it looked much like this.  Holding her listless body today as she was taking those labored breaths, so reminded us of Ellie Kate and her last days. Unfortunately, it does look like NKH is progressing rapidly in Little Lucy but we should soon know if new meds may play some sort of part, esp because of her metabolic issues.  Our hearts hurt and although we've known from even before we ever held our blond-haired girl, this would one day happen, it doesn't make the sting any less harsh or the thoughts any gut-wrenching.  

The Future for Lucy:  We don't know what will happen with Lucy; she could wake up tomorrow completely back to her normal, and if that's the case, we will dance up and down the streets in praise to God (I will even take video)!  But if she doesn't bounce back quickly, or if she doesn't bounce back at all, we will continue to huddle in as a family and drink in every moment.  

Our Current Feelings on Lucy's state:  Sincerely, we feel grateful in that we get a SECOND chance to walk the road of child-loss, and what I mean by that is, we already well-know what we WISH we would or could have done towards the end with Ellie Kate, but we GET the chance to do it better and accomplish all of those wishes and regrets as Lucy's NKH progresses.  Truly, Friends - we see this as a comfort and gift from God and once again, Ellie Kate's life has made Lucy's sweeter, easier, less-complicated and SO much more!  
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Adoption Finalization . . . On the last Monday in June, we officially and legally welcome our youngest into the family before the State of Oklahoma.  Bowen Jane is now a McLaughlin and we cheerfully have added, "Bowie Mac" to her list of nick-names.  We are BEYOND grateful for this unplanned, life-changing GIFT from God (which is one meaning for her name) and although the timing has been mysterious at times, we see Bowie as SUCH a healing balm to us ALL.  Watching the boys, Lucy and even both sets of grandparents enjoy such a joyful, happy, delightfully growing baby girl within our home brings us endless laughter, even during uncertain times. God's timing is ALWAYS best, even when (and especially when) we don't understand or expect it. 

Bowie Jane Mac and MiMi awaiting the finalization

It's Official!  Professional photos coming soon.

I couldn't hug him tight enough that morning, waiting for the judge to call us in.  

My heart is SO grateful for our New Baby Girl!  

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Henry's IVIG . . .The Saturday after Bowen's finalization, we flew to D.C., much to the courtesy of the Isaiah Stone Foundation here in OKC.  There was NO way we could have financially made the trip, even with Mike's excellent, steady job and paycheck (which we are beyond grateful for).  Our family spends over 20% income on healthcare each year, so a trip like this would have been difficult, especially after trying to settle and pay adoption fees.  GOD provided a way for both boys, Mike AND myself to go and we even toured the Capital a bit before and around Henry's appointments for his PANDAS.  What a GIFT!  

It's "Darryl" from The Office!  

Conner was thrilled - 

 my boys love them some Craig Robinson!  

Did you know that Albert Einstien never learned how to tie his shoes?  That's a familiar thing to Henry, so he made a cool connection!  

Henry's legs were hurting too badly to walk the museums 

(PANDAS can do this, much like Lyme Disease), 

so we used the wheelchair while "adventuring" together. 

The Air and Space Museum was a HUGE hit! 

      Tour Buses were our friend!

Sweet Boy, Taking it all in

We met with Dr. Latimer, one of the three PANS/PANDAS specialists in the U.S. (her words), and we were blown-away.  Dr. Latimer confirmed everything we felt and thought about Henry as parents and supported all of the test and blood results taken over this almost four-year adventure.  She collected ALL of Henry's info and studied each part, getting to really know him and US.  Dr. Latimer told us more about WHY Henry acts the way he does - ex: she noted Henry's chorea movements (which we barely notice), and some tics which also had not jumped out to us much.  She also physically pointed out Henry's reflexes aren't working in the normal way (he is hyper-tonic).  She read through the EEG's, as she's also a renowned Neurologist, and was able to give us insight there.  Dr. Latimer also told us more about those with PANDAS, who only get approx 3hrs of REM sleep every 24 hrs, so they are always tired in every possible way.  This gives way to extra crankiness and confusion, which can trigger the already heightened "fight or flight" response.  It's a recipe for disaster without sleep but there is no cure for that part of it, or for any of it, at this time.  

After visiting with us for several hours, Dr. Latimer suggested IVIG treatment, which is what we expected and hoped she would do.  Our doctors here in OKC have recommended it but it's rarely done here for PANDAS - that isn't the case out of state and it's an especially normal thing to do in that part of the country.  We hoped she would invite us back for the treatment sometime very soon, but to our SURPRISE, Dr. Latimer suggested we come in immediately for IVIG treatment.  Mike and I already knew this was what Henry needed.  It's the last-effort treatment, the best and most-effective treatment, for severe versions of this disorder.  It's not the quick or easy decision you hope it to be, as the cost is due in full upfront and in the clinic, was $12,500 without ANY assurance it would be covered immediately (or soon) by insurance (in hospitals it runs anywhere from 40-60K). Mike and I spoke in closed doors before leaving the doctor that day, and although we KNEW Henry needed this, there was NO way we could pay (We are still paying off some of Ellie's bills and of course the all-expensive law school (seriously ya'll, think about it before you go- tongue in cheek)).  

That night, we walked around D.C, staying out late (I admit to being somewhat down, wondering when and how God would provide, why He had given us this opportunity to just send us home, and more).  We literally, physically ran into Paul Ryan (surrounded by secret service but at least we got a smile and nod!) - of course I couldn't say a word except his name (why couldn't I have given him some friendly, special-needs momma advice the night before the big healthcare vote:)?).  Before bed, we received a text from some very dear and generous friends whom Mike had randomly filled-in about the treatment for Henry.  Ya'll, these friends offered to PAY FOR HENRY'S TREATMENT IN FREAKING FULL, with no pressure on us to pay them back in a certain amount of time, which means we can work hard with insurance and fight for coverage if needed (although we haven't yet heard from insurance).  WHAT?! WHO DOES THIS type of thing?!  I CRIED in JOY, thanksgiving and relief, amazed at God's provision yet again for our family.  He ALWAYS provides what we NEED!  I excitedly called the doctor early the next morning and made plans for the IVIG treatment to take place over the next two days, just in time for us to leave straight from the office to catch our flight home (yay for Uber!).   

Happy Henry during IVIG

Pals receiving treatment the same day!

Henry took it all on like a champ.  We didn't know what to expect, but there was another little guy receiving his second day of treatment our first day (it's a 5/6 hr treatment over two days), which provided Henry a true playmate for the entire day of treatment - we couldn't have planned it better.  It also provided solace and peace for us as parents, as we could connect and share stories and in sharing, there is HOPE.  We saw NO signs illness or reaction to the IVIG (reactions can look like that of chemo), although they loaded us with the proper meds and made sure Henry received plenty of fluids for the flight home.  It wasn't until we got back that Henry suffered set-backs and vomited with severe headaches, for over a day or so.  We know it could have been so much worse and are sincerely just grateful we could even have the chance to do it!  

The ultimate test will be in four months, about six months out from the treatment, when we should see the height of the IVIG success.  Folks have asked, but until recently, we had not seen many changes in Henry.  Now though, he is doing SO much better - making better decisions and increasingly choosing to do what he needs to each day, many times even on his OWN. It's still a daily struggle and I continue to believe this journey is much harder than dealing with feeding tubes, pumps, suction machines, seizures, and wheelchairs. We hope the benefits will be even MORE clear this coming week as Henry starts at Epic Charter schools, with a special-education teacher and principal.  OUR God has provided this trip AND this treatment so clearly, so neatly, to timely, I have NO doubt that He's actively at work on behalf of Our Son!

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Oh, Friends - thank you for staying with me throughout this long update.  I'm sure you get tired of my words and the length of the blog, but you will never know how much your endurance and friendship means to us.  

While we do face struggles 

in other areas at this time, 

our current prayer requests are listed below.  

Thank you in advance for championing 

and interceding on our behalf!  

• Please pray for my Little Sister Rachael, who gets married later this morning (it's Sept 1st now!).  Ellie Kate died on Rach's bday and although Bowie was born on that same, precious and ordained day, it's still bittersweet for her.  While we do not believe Lucy will go to Heaven this weekend, I hate the thought that tragedy once again mars my Baby Sister's life and on one of her biggest days yet - her wedding day.  Prayers for peace, understanding, hope, and JOY are much appreciated!  
• Please pray for provision for the IVIG medical bills so that we can reimburse our friends, who so willingly GAVE that Henry could RECEIVE (they love him dearly).  Please pray too for those insurance issues to settle easily, quickly and peacefully, all in a Divine Way. 

• Please pray for Lucy's complete comfort and healing.  We pray she would be healed here on earth, but we want what is best for HER, always and forever, no matter what that may look like.  

• Please pray for all of those involved in Lucy's care - hospice, home health, doctors, specialists, and more; that God would open eyes and hearts and that He would guide every decision on Lucy's behalf, especially during this time of uncertainty.

• Please pray for us as Lucy's parents - that the Lord would UNITE me and Mike together, binding us tightly, and that He would draw us to Himself as well as to each other.  Please pray healing for us in ways God understands and we ask that He too will give us the Divine wisdom and direction we need to make every move.

• Please pray for Henry as his IVIG still "sinks in", so to speak.  Pray for HEALING here on earth for Henry - body, soul, spirit, and mind and that God would be preparing Henry for school starting next week.  Pray that things would fall into place with school, despite what's happening at home, and that Henry will once again be able to thrive and gain confidence in that.

• Please pray for Conner as he's started the BIG 8th grade - and we all know how difficult and scary that age can be. Please pray for Conner's heart to be engulfed by the Spirit and that the Lord would capture him even now and amidst the hardship surrounding our family.  He so often gets understandably angry and frustrated with it all and yet he carries it in ways I can't begin to understand or imagine.  We only have about four more years with Conner at home and we want those to be HAPPY, HEALING years. 

• Please pray for our families - our parents, in particular, as they struggle and hurt when their children AND grandchildren hurt.  Pray for strength, provision and availability for them to be with us as we need them and as they want to be.  

• As always, please pray for great peace and comfort as we face unknown days ahead - like so many of those dear to us are walking through now.  

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We BLESS you tonight, and as a united family, 

thank you and pray God's peace be upon you and your family and that He alone would meet your needs in the above ways as well.  

Psalm 34:1-4

I will extol the Lord at all times;    his praise will always be on my lips.
² I will glory in the Lord;
    let the afflicted hear and rejoice.
³ Glorify the Lord with me;
    let us exalt his name together.

⁴ I sought the Lord, and he answered me;
    he delivered me from all my fears.

Ryan Elizabeth