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."

Not a Glamorous Season

The McLaughlin's are Here, we haven't dissapeared, although it's true - I don't share as often on the Blog anymore, or on any form of social media, really.  There's a lot of reason behind that choice but mostly, I have four precious kiddos who need a full-time mommy.   Also, it's just a slow, sweet, NON-GLAMOROUS Season.

In the past, I've thrown myself into ministry, into "doing" rather than focusing on my family like I should.  Now I know how precious life is, how fleeting and bittersweet it is, even for the Believer; I want be there completely for my marriage and for my children.  That means doing and even BEING, a whole lot "less" of what I had grown so used to.  It also means focusing intentionally on My Marriage, which has been so wonderful and only from The Lord.  Pouring into My People - that's where He's placed me in this Season.

Henry has been in a flare, sleeping 

and having silent seizures on Easter, 

thus he isn't pictured with us:(.  

Last week, I found out I have the severe form of Interstitial Cystitis and another small surgery is soon to come.  This is an anutoimmune disease and I flare and when I do, it's awful.  Sometimes I can barely get out of bed.  The pain can be immeasureable, lingering like a bad sunburn, but rather inside of your bladder.  

I HATE that I have this disease, which I've likely had all of my life, but really flared since Ellie's death.  I HATE how it limits me and when I'm used to being active and physical, IC takes that away from me. I beleive it's severely flaring now as Lucy's future is still  unsure and since she will turn seven this September.  Ellie Kate had just turned seven when she passed away in 2012, and there's a weight as Lucys 7th Birthday approaches. 

I'm forever thankful for my Parents and for my Husband, who support me and do their best to understand all that is in my life right now.  I thank all of YOU who continue to reach out, help with meals or laundry, send a note or text, and more!  It lifts me up in this time when the pain drains my energy, when it feels like I'm failing bc of slowing down, when I can't always "do", even what I want to. Focusing on healing body, soul and mind - that's where He's placed me in this Season.  

Days are long but precious with a wide variety of ages in the home.  The Girls and Henry need me all the time, while Conner is more independant. Yes, it seems the diapers never end, the feedings never stop, and the comforting and teaching never truly stop. However, I can say, it is a very precious time in our home, a time of much joy and laughter, even though it means we aren't as busy or out and about (but ya'll, I do miss that).  Continuing to be available to my family and marriage - that's where He's placed me in this Season. 

Bowie and I had "extra time" together during the service 

because of her runny nose, but we got this pic out of it:)! 

).

• Bowen is a JOY, full of laughter and words.  She seriously is so smart and I am in awe I have the gift of being her Mama.  She is THE Sweetest Gift I've ever recieved!
• Conner is learning what all junior high boys must learn - responsibility.  Sometimes it's difficult to learn in real life, but we couldn't be more proud of this tender-hearted boy.  Conner loves carrying Bowen around and sincerely has fun playing with Bowen and Lucy.
• Henry's had a more difficult time, although things continue to be infinitely better since we had the IVIG treatment done last summer.  It's evident Henry needs another treatment, but we are STILL fighting insurance to get the first treatment covered.  It's a heavy burden in several ways, and we long to be FREE of it, for our Dear Ones to be freed of it too! Henry is playing soccer and has grown LEAPS and BOUNDS socially!  We are so proud of him and can truly see him stop himself and do the right thing.  He has State testing next week and we'd love prayer for him - it's a HUGE deal for him to even go.  
• Lucy has shown us more signs of life and light and we take that with joy!  Although she still sleeps most of the day, she has new energy and moves around more and even plays!  We hope to have her back in school very soon, with hopes of lifting her spirits - she loves friends, school, teachers, etc just like her Big Sister.  

          Right now, Lucy has a staph infection, but we caught it early and are administering                  antibiotics at home. LuLu had many full-body seizures on Easter, which wasn't fun at              all.  It still breaks our hearts, all these years later.  She also now has a UTI, but the                    antibiotics should cover that too.  

Thank you for lifting us up in so many ways - laying us before The Throne.  Thank you for interceding for us, encouraging us, serving us, and loving us.  

To God ALONE be the GLORY, Honor and Power, Forever! 

Ryan

Other Specific Ways to Pray:

• Pray intently for each of our children, as the Holy Spirit would lead you. 
• Pray for our Marriage and our Family as a whole - knit us together even more, Lord!
• Pray for provision for a new, more comfortable chair Lucy can use at home (she's outgrown the one shes had for several years and insurance does not pay).  
• Lucy also is in need of a new wheelchair as her's is literally falling apart.  We pray someway, we can get the ball rolling so insurance can cover the wheelchair.
• Pray for provision of the IVIG treatment for Henry, that insurance would re-imburse and we can be FREE; also pray it becomes readily available for him to recieve in the near future.
• Pray for Mike's Dad (Stan) who will soon undergo surgery in hopes of removing some of the cancer.
• If you feel so led, please pray for ease of pain for my IC.

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.

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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!)

Let Your Will Be Done - Thank You's and Christmas Catch-Up

Lucy had an extremely difficult time over the Holidays; she's been suffering and at times, the suffering is intense.  We tried to getaway over Ellie's Heaven Day and Christmas, as it's excruciating for me to be in our home and surrounding areas, especially since Ellie Kate died there, in our arms.  The Lake House which was offered to us was gorgeous and the views on the water even more beautiful than I could share!  Sunsets were breathtaking and we even had several inches of snow, which is huge for Oklahoma.

Henry's Snow Angel

Making snowballs!

Bowie Jane is the BIRTHDAY GIRL!  

God preciously orchestrated This INDESCRIBABLE GIFT to be born - 

to be physically placed in our arms - on December 23, Ellie Kate's Heaven Day!

The snow, the lake, nature, the seclusion . . . it was magical for the boys, I think; I hope.  It was supposed to be magical for all of us, but it wasn't.  Lord, when will a getaway be magical, peaceful, hopeful for us?  Disease took over Lucy's body right before Christmas, on Ellie's Heaven Day and Bowen Jane's First Birthday. Her breathing changed on Christmas Eve and she stopped voiding completely, or long periods of time.  She was showing us all signs of death so I didn't sleep - I just stayed by her side, except to play Santa and set out the gifts early on Christmas Day.  I panicked, I'm not going to lie, and reached out to three friends, asking them to pray intently, which they so graciously did, even as they were walking through their own immense heartaches.

God created gorgeous sunsets for us to enjoy during our get-away! 

By Christmas Morning, we had set Lucy up on the living room of the Lake House - I wanted her to have a view of the light and beautiful water, so we faced her toward the big windows.  She barely moved as the other children opened their gifts.  Because of Lucy's decline, Mike and I decided to go ahead and leave that morning instead of staying several more days (but man, we needed the solace of those several more days and were so looking forward to it - especially me and Mike!!).

Bowen, spending time with her Big Sister on Christmas Morning 2017

Lucy Belle meeting Bowen Jane, December 2016

Once we arrived at my parent's home, Lucy immediately perked up.  We had her on continuous fluids and feeds the entire trip and because of that, because of God's goodness and because He listened to the petitions of our friends on Lucy's behalf, Lucy AWOKE, COMPLETELY.  She enjoyed time at my parent's and even opened a few gifts in her own special way.  IT. WAS. BEAUTIFUL, and once Mike and I realized Lucy was once again stable and had color in her face, we both sighed in relief and completely crashed, mentally, physically and emotionally.  We were so grateful my parents helped watch the kids so we could go to bed early, sleep in and even nap before going back to our home.


Since Christmas, Lucy has not gone back to that deathly state, which was so frightening, however, she still isn't back to typical, happy, busy state.  In all truth and reality, Lucy hasn't been "Lucy" for a long time.  She's sleeping even more, barely waking at all most days; she's excruciatingly thin as her feedings and formula increasingly cause more pain, rejecting the feedings she receives.  More seizures, more jerking, more pain - it's difficult to watch and I struggle to even think of what Our Daughter must be going through.  Gratefully, we've had times of giggles and more times of awareness over the last 24 hours or so, although these days have also come along with more intense pain with her gut, which still isn't working correctly (by that, I mean the food isn't going through her stomach and into her intestines - it's just staying or sitting in her stomach, and we pull/draw it off her stomach through her gtube/feeding tube; many times, the formula is in the exact same state as it was when we last fed her, two hours ago, without any signs of breakdown of the food whatsoever).


Mike and I very much want to meet with all doctors involved, as well as our hospice nurse, in order to make a "game plan".  Since everyone isn't in one location, this likely will not happen.  I've asked our doctors and nurses if group email communication would be possible, so we are waiting to hear back concerning that.  We would absolutely LOVE your prayers that a meeting and/or email communication will happen, AND soon.

Thank you for your continued messages of all kinds - please continue reaching out even if we don't have the opportunity or emotional energy to respond.  Each message brings us hope and light, showing us we aren't alone in our "Community"  (we know we aren't alone from the Father!).  Also, thank you for your continued, intense and specific prayers before the Throne of God, all on behalf of Lucy's health.  We don't want her suffering here on earth - we want her to get better and come back to her old self, her gut being healed, giving us more time with her.  However, we KNOW God WILL heal Lucy, no matter what and He will do what is best for Our Girl.  I find great hope and comfort in that Truth!  He will heal her here on earth (in little ways or completely) or He will give her the Ultimate Healing, with no more gut pain, no more feeding tubes or seizures, just food which Lucy can eat and things Lucy can do . . . things which are impossible on this earth.  

Oh, Abba - Father, our Daddy-God!  Let your Will Be Done.  

Luke 22:42, New Living Translation

"Father, if you are willing, 

please take this cup of suffering away from me. 

Yet I want your will to be done, not mine." 

Lord Jesus, I believe; help my unbelief, Oh God!! 

Mark 9:24, English Standard Version

"Immediately the father of the child 

cried out and said, ' I believe; help my unbelief!'"

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Oh, My Friends!  THANK YOU for donating to Hope Link and to our Medical Account!  THANK YOU for giving to OKC Hope Link!  THANK YOU too for loving the Hope Link Families we adopted this Christmas in honor of Ellie Kate's Month of Reckless Love.  I didn't know what to expect, especially knowing it's been five years without Our Girl, yet ya'll came through and EVERY.SINGLE.NEED and want was met!  Isn't that beautiful???!!!  This happened because of YOU - because the Spirit moved you to act, give and serve, and to do so with Our Ellie Kate in mind!! I am sincerely overwhelmed with gratefulness.  

If you are still looking to help or if you missed the opportunity to give to our Hope Link Christmas Adoptions, there are still needs to be met through "Ellie's Wish" which is a program through NKH Crusaders.  As I've mentioned in previous posts, my dear friend and fellow NKH momma started this program in Ellie Kate's honor and the goal is to meet one need for a few fellow NKH families each year.  These sweet families endure so much and have no way of paying for these items on their own. These items will bless their kids and would make their lives better, happier and/or easier.  

Click on the links below for the need and wish of each family: 

Ellie Kate's Wish - NKH Family 1

Ellie Kate's Wish - NKH Family 2
Ellie Kate's Wish - NKH Family 3 (Extra Special!)

Thank you again for the December outpouring of love and service in honor of Ellie Kate!

Thank you for your patience and your understanding with us, especially during these difficult months - when oftentimes it's just too emotionally draining to post or share.

Thank you in advance for loving and supporting our fellow NKH Families by meeting their needs listed in the links above.


With so much gratefulness, my heart might burst . . . 

Ryan Elizabeth

PS:  Be watching for the next update, with Bowen's Birthday details and details of us soon needing a place to live!

The Human Beauty of Our Christmas Season (UPDATED X2)

Oh, My Friends!  We have been so very blessed by the outpouring of reckless love shown over the last few days!  I am PROUD to say, ALL of the needs AND wants of our adopted Hope Link Families have been fulfilled this Christmas!  

It brings me overwhelming peace knowing collectively, we've loved these families so well.  You've even given us the privilege of playing, "Santa" and with each gift I've placed into their grateful hands, I have most truly thought of each you who've given, donated and supported us in these efforts.

"Ellie Kate's Wish" by NKH Crusaders,

is the last major act of 

Reckless Love for this month.  

There are just a couple of wishes to cover, 
those making wishes are extremely dear to our hearts.  

These people are part of our NKH Family,

and the gifts requested will be delivered directly to their homes.  

Both of these friends have the most severe form of NKH - 

they are unable to move around like Lucy,

and also suffer more seizures and other ailments.  
*Each family was chosen because of the degree of need and the level of which the needs and wants are well-deserved, especially for their Sweet Children.  

If you've wanted to purchase gifts, but haven't been able to until now, would you consider fulfilling one of these "Ellie Kate's Wishes" for our NKH Friends (to see their needs, simply click on the links below in PURPLE). 

Ellie Kate's Wish - NKH Family 1

Ellie Kate's Wish - NKH Family 2

Ellie Kate's Wish - NKH Family 3 (Extra Special!)

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If you are looking for end-of-year giving or ways to receive those all-important tax write-offs, we would love for you to consider giving to the following: 

• OKC Hope Link
• McLaughlin Medical Fund 
• NKH Crusaders 

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As for our family, we are surviving this difficult Season and truthfully, I'm sad it's going by so quickly . . . I truly enjoy focusing on Our Ellie Kate for an entire month, knowing her name is being said, that it's being typed out, that shes' being remembered and thought of.  It's something a Mother longs for - her child's life and legacy to live on and for their name to be remembered and said, especially out loud.  Thank you for doing all of those things this Holiday Season.  

We've had some very sweet and even fun times as a family - Toby Keith and his sweet Wife came over to spend time with Lucy, and she just ate up the attention.  It was incredibly kind of Mr. Keith to do this during his "downtime", even though he is still oh-so-busy.  

We' were even able to meet Santa as a family, along with our Hope Link friends, which ended up being a precious experience for Lucy.  She stayed awake the entire time, which was HUGE for her and on the way home, she giggled and giggled as we talked about Santa and how he knows her name and knows her friends; how he made a special trip to Evan's house just to see them!  It's been precious, but we also know, after meeting with doctors, our days with Lucy are short and at this point, she's mostly sleeping.  

Lucy tremors and seizes in her sleep; I often wonder if her thoughts and dreams are full of fear or of peace.  I pray and hope the Father has sent Angels to minister to her during this time.  I know He did for Ellie Kate and I believe that for Lucy too.  When Lucy IS awake, there are many times of pain, especially as we try to feed her and keep her hydrated.  Full Comfort Care is on the horizon, but we want one more Christmas, which we didn't have with Sister.  

Mike and I have always sought "quality of life" for both Ellie Kate and now for Lucy Belle.  We've always told both Girls that we will fight for them, and fight HARD, in every way - we will do this for Lucy as long as she shows us she's still in the fight and still wills to live, just as we did with Ellie Kate.  For us, God was good in that once the hospice decision was made for Ellie, she was with Him in a mere three days, so it was blatantly clear her precious body was finished fighting here on earth and she was truly ready for her new life in Heaven!  Rest assured, as Lucy's parents, we are doing what we feel is best for her and we are doing what we feel the Holy Spirit is leading us to do.  We will continue to do this, always.  

There are so many people around us struggling, suffering, many even pleading for the lives of their children because of accidents and disease.  I encourage you this Christmas, to rise above the temptation to feel "down" or weary because of worries  -  wearies which likely pale in comparison to true struggles to most around the world.  
Leave behind the temptation to get upset because you couldn't find that "perfect gift", or temptation to "freak" because your caterer is just too booked to help with your Christmas desserts or meal.  Leave behind the temptation to pout or sulk over gifts which may not arrive on time from Amazon, J.Crew, etc. 

 Rise above.  Think of others.  Focus on others.

PRAY for others - not only for families like ours but for others around the world who are hurting and suffering.  

DO something tangible, practical - RECKLESSLY LOVE the world around you by giving and serving with your body and mind, 
with your talents and finances.  
I PROMISE - you will NOT be disappointed in sacrificially giving and serving, offering hope and love this Christmas Season.  

After all, this Holiday Season exists because of Jesus Christ, 

the Savior of the World, who came to us as a tiny, human babe.  

Jesus left riches and His perfectly royal, heavenly home, 
all because He LOVES US - 

He loves EACH and every person living on this earth, 
equally and entirely, no matter what! 

God created each person for His glory;

He longs for hearts to come to Him, completely and entirely.  

Truly, the Holy Spirit moves in the hearts of people, 

drawing them to Jesus Christ and God the Father, 

BUT it's through OUR LOVE, 

OUR EXAMPLE, OUR Sacrifice and RECKLESS LOVE - 

the same Reckless Love God lavishly pours out upon us individually - 
where which the Precious Souls of this world are drawn to HIM.  

The MOST BEAUTIFUL thing Believers can do this Christmas is to Recklessly Love the world around them, 
bringing the HOPE of Christ to everyone they encounter, 

introducing them to God's unconditional love, showing them the

Innocent, Perfect Babe lying in a manger that first Christmas.

What could be more reckless or loving, 
then to introduce others to the HOLY Baby, 
the KING who CHOSE to come to this broken earth, 

choosing to experience every heartache himself;  
this God-Man, who dedicated His life, 

who GAVE His life in the most literal way, 

in order for every human to be united with Him in body, mind and spirit.

May we follow the example of our Father-God, sacrificing His most prized, precious possession on our behalf - Jesus, His Only Son.  

May we follow the example of Jesus, 

giving all that we have and all that we are; 

sacrificing in this life so that others may have what they need so that others will feel loved, 

cherished and at peace.

May we boldly proclaim the sane Reckless Love 

Our Father, Son and Spirit long to show every person on this earth.

May WE be the ONES - the Bearers of that Reckless Love, all for His Glory.  

For, THIS;  This is the Human Beauty of the Season. 

With Love and the Human Beauty of this Season, 

Ryan