A Solemn Dance

It's a Solemn Dance,  with"Mourning" and "Thanksgiving" as the Partners.  It can be confusing, frustrating, and oftentimes, the unknown of it all can make you physically sick.  

At points, this Dance is intensely precious, passionate, and beautiful - so much so, you want to hold on each part, every picture in your mind, hoping to fully grasp the intense feelings it can bring.  You may not fully understand, but you know it is Holy and can only come from God.

This Dance - the coinciding of these intensely genuine, human emotions, awkwardly trying to find balance; giving and taking, back and forth, fighting to make something beautiful . . . 
THIS, is Suffering for the Believer.  

Thanksgiving was a sweet time of reflection and gratefulness for our family and we were blessed by the presence of Mike's Parents, Stan and Jayme.  As you may know, in October, Stan was diagnosed with Stage 4 Cancer, which has metasticized.  He is determined to live-out more days on earth with his family, yet the chemo and cancer have started to ravage his body - this tall, strong man who played college basketball; the Paw Paw we cheerfully call, the "Pied Piper", because the grandchildren follow him around like little ducklings.  He is kind, a gentle-giant, and it hurts our hearts to see him struggling.  What a GIFT it was to be in Stan's presence this Thanksgiving! 

Lucy and Paw Paw, 2014

Sweet Lucy slept most of Thanksgiving Day, but we did have some sweet moments when she was lucid and awake.  Her body is brutally thin, her hair starting to fall out.  She hardly has any energy at all, yet there are times when we hear her precious giggle and laughter, even in the middle of the night.  Last evening, Lucy started throwing up with each feeding, no matter how small the amount that was given.  She's been weak, pale and often trembles, but on Thanksgiving she joined us in the living room as we sat around, sharing all we were thankful for.  At the top of the list: Thanksgiving for another Holiday to spend with Stan and Lucy.  

Last evening, we had the honor of decorating Stan and Jayme's home for Christmas, which was a special request from Stan.  Tonight, we start decorating my Parent's house, mainly with Lucy in mind.  Something about the warm glow of the lights, the colors all around the house, the smells and sounds that come with it all - it brings comfort, love and a familiarity that is . . . HOME.  It's something we all want during the Holidays, especially for these family members who are suffering so in the physical realm.  I cannot wait to see Lucy's face when she sees the lights and the tree!  

Oh Lord, Why Now?  

Why would you allow all of this suffering AGAIN, 

during the same Holiday Season? 

 Isn't one time enough, 

with Ellie Kate's death, December 23rd? 

 It's been five years since we buried Our Girl and now, 

TWO more members of our family 

firmly face earthly death, 

if not for a complete miracle for God.  

My heart grows weary and cries out often. 

Oh, Ya'll!  It's hard not to despair completely, knowing these Precious Ones suffer so!  And on a MUCH-lower level, I find myself tempted to despair over my feelings of loss and heartache, as well as anticipation of what I KNOW is coming.  It's compounded by feelings of not having our own space, as we are selling our house, and continue to live with my Parents (who so graciously have allowed us here).  I long for our own space, especially this time of year, as silly as it sounds.  Admittedly, this is THE very hardest time of year for me, personally and for our family - Ellie Kate's birthday on December 4th, leading up to her Heaven Day on December 23rd, followed by the festivities of Christmas Eve and Christmas Day.  Of course, our Dear Bowen Jane's FIRST Birthday ALSO falls on December 23rd too.  There are many mixed emotions flooding my heart, mind and body; intense thoughts and memories.  Sometimes it feels my emotions swing like a pendolum, back and forth, from one extreme to another . . . and right now, it  compounds the feelings of knowing nothing seems to have it's place. 

When God has done SO MUCH for us, providing miracles for Our Family through precious people, many times, it is still a battle to overcome the sadness, the sorrow, and the mourning for the future and for what we know will come. 

The Holidays can be BRUTAL, 

and not just for Our Family. 

 I know so many of you are in similar circumstances, feeling similar things this Season, many fighting depression and darkness; hopelessness and despair.  

You KNOW God has been incredibly good and yet, 

at times, the circumstances surrounding you seem too heavy to bear.  

You aren't alone.  

It's during these times, I am drawn to God's Word; 

the Precious Words of Life, 

the ONLY never-changing Truths 

in this broken, scarred-filled World.

Rest in knowing you aren't alone: 

for Ages, Fellow Believers have joined us in this very longing . . . 

Romans 8:23 ,"And even we asChristians, although we have the Holy Spirit within us as a foretaste of future glory, also groan to be released from pain and suffering. We, too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us—bodies that will never be sick again and will never die".

Rest in knowing there is Purpose in Suffering:

 Romans 5:3,4  . . . "We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame".

Romans 8:17 ,"And since we are his children, we will share his treasures—for all God gives to his Son Jesus is now ours too. But if we are to share his glory, we must also share his suffering".

Rest in knowing God comforts Us in every Season:

2 Corinthians 1:3-5,"What a wonderful God we have—he is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials. And why does he do this? So that when others are troubled, needing our sympathy and encouragement, we can pass on to them this same help and comfort God has given us. 5 You can be sure that the more we undergo sufferings for Christ, the more he will shower us with his comfort and encouragement . . . "

There is Purpose in EVERY 

heartache and suffering, Friend.  

For Centuries, Believers everywhere have experienced deep disapointment and loss, 

somehow intertwined with joy and thanksgiving; 

surely, we too can move forward 

in Faith as they did.  

Through every Season, even in those which seem confusing or all-too-heavy, 

HE IS OUR COMFORT.

God is with us every step of the way, 

always and forever.  

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December 1st is upon us, and "Ellie Kate's Month of Reckless Love" will soon begin!  It's an entire month, Ellie's Month, dedicated to loving and serving others in reckless, unexpected, over-the-top ways.  I cannot wait for it to begin!  FIVE years - it just doesn't seem possible that we've spent FIVE Christmases without Our Eldest Daughter, our Brown-Haired-Beauty, whose green eyes glistened with every giggle.  

This year, in honor of Ellie Kate and in celebration of her month, we'll be adopting THREE Hope Link Families.  Hope Link is the Foundation (501c3) birthed in 2007, when the Lord first revealed our Pre-Destined Mission as a couple, as a family, and as individuals: loving and serving families within the medically-fragile and special needs communities; families like ours.  Hope Link seeks to serve families of children with rare, serious and undiagnosed disorders.  Several of our families have already lost children to their rare diseases and disorders as well.  It will be a JOY to bless THREE of our families with Christmas this year and I hope you make plans to participate!  

Also this year, in celebration of Ellie Kate's Fifth Heaven Anniversary, we will be fulfilling, "Ellie's Wish", which reaches to our extended NKH Family, all around the world.  Families apply for specific things their child with NKH may need and YOU will have the opportunity to help grant that wish!  "Ellie's Wish" joins NKH Crusaders in blessing and providing for these precious NKH children, and I cannot wait to see their needs met.  

Thank you in advance, 

for preparing to participate in 

Ellie Kate's Month of Reckless Love. 

 It means more than you could know, 

especially on this milestone anniversary 

of EK's Heaven Day. 

More information will soon be posted, 

and I pray you will be watching 

in excitement and anticipation, 

ready to love and serve with Ellie Kate in mind.

In Mourning and Thanksgiving, 

Ryan

The Goodness of The Lord in the Land of the Living

Psalm 27:13-14Living Bible (TLB)

¹³ I am expecting the Lord to rescue me again, so that once again I will see his goodness to me here in the land of the living.

¹⁴ Don’t be impatient. Wait for the Lord, and he will come and save you! Be brave, stouthearted, and courageous. Yes, wait and he will help you.

Clear, blue-green waters upon the horizon;  sugary-sand under our feet; warm sun kissing our skin,  with the taste of the salty sea upon our lips . . .  
an absolute dream come-true! 

We recently returned from a beautiful trip to Mirimar Beach, Florida.  Our Dear Friends, Jeff and Bonnie Hinkle, invited us to stay with them in their beautiful home, which sits right on the ocean!  Selfishly, I admit that this was a dream of mine – I longed to have each of my children enjoy the Florida Gulf as I did.  Miraculously, Lucy was pretty pain-free and able to go with us, so we marked one of the biggest things off her “Life List” with taking her to the beach and letting her experience it to the fullest.  My cousin Kellyn, an RN and also beloved family member, went with us as Lucy’s nurse which was a HUGE blessing and delight! 

Lucy absolutely LOVED every part of our time away, even the riding in the car for over 14hrs!  I can’t fully explain the intense joy I felt watching My Lucy breathe in that salty air, feeling the warm sand between her toes.  She enjoyed grabbing the sand with her hand and dipping her dainty, pointed toes in the ocean.

Conner and Henry also enjoyed the beach, each with their own new hobby – for Conner, it’s paddle boarding!  We were elated that Conner felt secure and confident enough to go out on the board alone, evening standing up on his own accord!  He spotted dolphins in the distance and paddled out to see them up-close.  Conner got to see dolphins swimming under his board which is absolutely a memory he will forever hold!  Boogie boarding is what Henry chose this trip, and he was in the water from daybreak to sunset each day (and would have gone out more if we had let him).  Henry was made for the water and ran out to the beach with pure glee.  Bowen Jane also LOVED the water and the sand!  She had no fear whatsoever and immediately crawled straight for the water.  Bowen loved splashing in the water and the salt didn’t bother her one bit!  Our “Little Moana” in her true form, coming back with the darkest tan of all. 

It was such a JOY to watch our family relax and enjoy God’s rich creation and I am truly humbled He saw fit to bring about this trip for us and it was well-worth the sacrifices made in order to make it a reality. 

Lucy’s all-important, “unicorn/pony party” was the Sunday before we left for Florida and we were AMAZED and THRILLED at the turnout we received for this Celebration!  

We had approximately 90 people at Lucy’s skating party, so it was good we had the whole place to ourselves.  The owners were gracious and super accommodating to Lucy and our other fellow wheelchair-bound guests.  Truly, we were astonished by the outpouring of love and support we felt by so many friends there to celebrate Lucy while she is still with us.  Although we didn’t ask for nor expect any gifts, we were blown-away by the generosity of those who came!  There were so special presents and each is truly an absolute treasure.  We will CHERISH this day forever and ever and ever, Ya’ll. 

For everyone who attended – THANK YOU for taking the time out of your schedules to come celebrate Our Daughter!  For everyone who served and assisted that day (Delia, Melissa, Donna, and Julie), THANK YOU for your precious servant-hearts!  For those who wanted to attend but weren’t able to – please don’t worry one bit!  We know it’s hard to make these events, especially on a Sunday.  Donna Castleberry – the party wouldn’t have come together without YOU.  We will always remember and appreciate the time, energy and creativity you put into it all, making it special for our entire family, especially for Lucy. I’m not sure if I will ever get the many thank-you notes out, BUT I want all of you to know, we are beyond grateful and do not take any part of that special day for granted.  It was so special because YOU were there! 

Now, for a Lucy Update . . .

While Lucy did amazingly, surprisingly well on every single portion of the trip, she crashed when we arrived home.  I know she was exhausted from the excitement and from expelling so much energy while we were there.  She also loved looking out the window on the long drives, so she didn’t get much sleep to and from our destination.  Even so, we are sad to see her back to sleeping most of the time and even wanting her bed so often.  We get her out, even though she’s so sleepy, each taking turns with her on the couch, our bed and even on the living room floor.  Ultimately though, Lucy winds up crying and fussing and I don’t really blame her.  It’s pretty loud and boisterous around here, as we are still living with my parents, and you can’t blame a girl for wanting her temperpedic mattress and specialized bed, either!  

As I posted on FB tonight, Lucy’s kidneys and bladder aren’t fully functioning and she’s been fighting a bad UTI since we returned from FL.  We decided tonight,  the antibiotic must not be working, so there will be another round of tests and urine samples and I’m guessing we will just start a different antibiotic.  

Sweet LuLu Belle, This Evening

Ellie Kate was home on hospice for three, agonizing and suffering-filled days, so this long-term decline is totally different.  I don’t know what I would choose, if I could.  Both seem equally as tortuous as we know Our Daughter is suffering and in pain, and we also KNOW the realness of Heaven and all that is waiting there for her upon her last breath here.  It’s such a strange place to be – longing for Ultimate Healing while simultaneously hoping for more time with Lulie Belle. 

 I don't know about you, but at times, I get overwhelmed by the mere thought of all the good AND all of the bad, not only in my life but also in this world.  The Good and The Bad - life is made up of both, although it often feels as though the “bad” wins out.  

As Believers (Followers of Christ), it's hard to see God's goodness when there is so much obvious darkness around us.  I know this is true in my own family as we look at the outside world - threats of nuclear attacks, church shootings, terrorism plots, and more, and it’s true as we look inside as well – with Lucy's declining health, the recent Stage 4 Cancer diagnosis for Mike's Dad, and what often feels like this giant list of other things, none of which even possibly seem or feel “GOOD”. 

From the outside, I think many would look upon the lot of The OKC McLaughlins, believing the BAD certainly must outweigh the GOOD, and although it may feel that way to us sometimes as well, that isn’t the truth.

Now, I’d be lying if I told you there weren't times I wallow in the, "why me, why us" questions.  Child loss, special needs for three children, severe disability and medically fragility for two girls, years full of hospital stays and separate among our little family . . . the knowledge we will likely outlive Lucy, and that Henry is a carrier of the disease; my own mother with medical fragility, and in being diagnosed with several autoimmune disorders myself . . . even job changes and losses along the way, financial ups and downs, the heartache and ever-changing PANDAS rollercoaster, depression diagnoses for four out of the six of us, marital trouble, and on and on and on . . .

Absolutely, and no matter how you put it, we have a lot “on our plate”, “so much entrusted to us”, “many trials and tribulations” and how I see it, we been given so many, CONTINUAL reasons why we MUST have God as Lord of our lives and why we must cling to Him, always.  It gets super complicated and sometimes foggy, especially on the bad days, and I’m guessing many of you can relate. 

Here’s what I absolutely KNOW to be TRUE:

•       God created me in intimate ways, with certain giftings, all for a Specific Purpose.  He knows me inside and out, better than anyone on earth possibly could.  He knows my heart and my thoughts, my limits and my failures, yet He still chooses to love me the same, no matter what I’ve done or will ever do.   I can trust Him because of this Truth. 
•       God has created each of my children in intimate ways in which HE designed.  He knows every part of their being and genetic make-up, even how everything works, even when no one else can figure it out.  I can trust Him because of this Truth. 
• ·         NOTHING, absolutely NO-THING can happen without God’s approval.  Satan has no power God does not allow (as seen in Job).  He created me, He knows me, He loves me unconditionally forever, AND He OVERSEES ALL that is thrown my way.  I can surely trust Him because of this! 
•       No matter how bad it gets (and ya’ll, it can get bad - as you well know!), God will show me GOODNESS, just as He promised.   I can trust Him because of this Truth, Friends. 
•       God always wins, GOOD always wins - for Believers, we can take comfort in knowing how this life ends . . . with God on the Throne. That certainty can take away my fears, my questions and my anxieties.  Truly, I can trust Him because of This Truth. 

Although I won’t always FEEL like trusting Him, I can look back on these Truths and CHOOSE to trust Him, shutting down my own thoughts of fear,anxiety, hopelessness, and despair. 

Today and everyday, whether you are facing a giant mountain, where you don’t know how you can possibly survive and you can’t even see through it; or if you are facing a season of hope, fulfillment and happiness, I strongly urge you to CHOOSE TO TRUST Your Father. 

That’s what I’m doing, even now.  Why don’t you join me?

Psalm 27:13-14Living Bible (TLB) - I am expecting the Lord to rescue me again, so that once again I will see his goodness to me here in the land of the living. Don’t be impatient. Wait for the Lord, and he will come and save you! Be brave, stouthearted, and courageous. Yes, wait and he will help you.

• PS:  Watch for new updates on Ellie Kate's Month of Reckless Love, which starts the first of December, as we celebrate her Sweet Life throughout the month by loving and serving others!