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!  

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

24 Hours

In just 24 hours, Lucy Belle McLaughlin will be SIX years old!  It's hard to believe that this Precious Little Gift-of-a-Girl was laid in my arms that long ago. Lucy is our dainty, feminine, "Beautiful Light", and I am happy to say that Our Birthday Girl is now HOME from the hospital!

We are incredibly grateful that the Lord has mercifully allowed Lucy's gut to work in this moment and that He has allowed her more time with us here on earth!  When we entered the hospital this last time, we truly did not know what would happen and even now, no one can tell us what will happen with Lucy Belle and her health or how long we will still have the joy of holding her here in our arms.


During this last hospital stay, we tried to find definite conclusions on why Lucy's seizure activity has increased so greatly, why she's had these terrible tremors, why she continually falls asleep, and why her balance is off, causing her to constantly fall from side to side.  Along with the doctors, we've tried to make sense out of Lucy's tummy issues,  searching for answers as to why, at times, she can't process her formula and medications.  We've tried to test and figure out why she's still having so many UTI's, why she's holding her urine for so long, and seems unable to void in every way.  The only conclusion we positively have is that NKH is progressing in Lucy Belle and, at this time, it's progressing much more quickly than we would like to believe.  

Lucy is home, but she isn't the same and I don't know that she ever will be.  She stays awake for only minutes at a time, then literally falls over into deep sleep. Her body tremors and twitches constantly, although it is NO where near the severity as when we last brought her to the ER.  Her actions truly remind us of those Ellie Kate's in her last days, which is strange and difficult. In fact,  looking back, Ellie Kate was struggling with many of these same things EXACTLY five years ago at this very same time, but we weren't fully aware of the short time we would have with her (less than three months).  This time, we aren't so naive and we will treasure each moment, each struggle, each day, with great value and sentiment.  We are treasuring these days, while allowing the Lord to prepare our hearts for the worst.  The physical decline is painfully evident, so we've made a few preparations for what we know will come sooner than we could ever hope. Oh, how we LOVE our LUCY!

The Body of Christ has surrounded us so beautifully, you guys and we are TRULY blown-away!  We didn't know what to expect at all, especially since we've left our Church Home of over 16 years.  Mike and I didn't expect any type of support at all during this time, really and truly - that's why the outpouring of support has been that much more encouraging!  God has lifted our spirits, renewed our hearts, and sparked our faith through the actions of His People - many of whom we don't even personally know.  It's an unimaginable treasure during a time we've needed to see Him move on our behalf - when we've felt alone and lost in so many ways.  Isn't God good to step in like He does?  It's never how WE would picture or plan and yet, it's always so much richer and more-encompassing than anything we could hope for!  Truly, I CANNOT WAIT to tell you all God has done for us through His People (but I will save that for the next post)!!

As for the Birthday Girl, since hospital stays have caused delay in celebration plans, I'm busy trying to make this sixth birthday the most happy one yet, even while on Hospice!  Lucy has finally decided on Unicorns and "My Little Pony" for the theme again, after she's fallen back in love with her ponies during this recent hospital stay.  Our plan is to try for a skating birthday party, where we can wheel Lucy around the rink in her chair.  She's pretty excited at the thought of it so far and lights up with excitement when we mention her Big Day.

We've had some questions pop-up recently concerning Lucy and our family, so I wanted to answer those clearly here on the blog . . . 

• Care Calendar - a precious friend is heading up a calendar where you can sign up to help our family in various ways.  We are incredibly grateful for everyone who is helping us in so many ways, allowing us to focus on Lucy and catch up on homeschooling for Henry!  To help, simply go to the following: lotsa helping hands care calendar
• Go Fund Me Page - we do NOT have such a page, nor are we interested in having one at this time, although we are grateful for the offers and suggestions of those wanting to help us financially during this time.  The best way to do this is through our Helping Hands account, where you can receive a tax write-off for your donation and can be assured that your funds go solely toward our medical needs.  With this organization, we turn in our receipts or bills directly, thus receiving the utmost accountability with your generosity.  For more information, please go to the the following:  McLaughlin Family Helping Hands Fund
• We still have Lucy's "Life List", but apart from getting Lucy to the beach and allowing her to feel the ocean, we really just want to spend time with her here at home.  This seems to be what her little body wants as well and we are set on listening to Lucy's body during this time, as we want whatever is the very best for her and what will keep her the most happy and at peace. 

From the bottom of our hearts, thank you for loving us and serving us during this time.

Ryan

To Everything, There is a Season

Sitting here at Lucy's bedside while she finally finds rest and peace, even though it's through the help of medication, I am reminded of her true and natural beauty.  My Daughter is breathtakingly gorgeous - with her thick, long eye lashes and her golden curls; her perfectly-shaped lips and little dimpled hands.  Lucy turns SIX on September 26th, but there's no party planning taking place right now.  Right now, I'm glued to her side as we try to figure out what's going on inside her little body, and as we are faced with decisions no parent should have to face.

Two weeks ago today, we brought Lucy into the ER for severe tremors, vomiting and constipation.  We were admitted the following day and during the next week, many different tests were done and many different specialty teams have come on board with Lucy's care.  She seemed stable on Sunday, so we were discharged all to be brought back to the ER yesterday with that awful, horrible, constant shaking of her body.  It's hard to explain what it looks like, but it is gut-wrenching, as she can't control her body parts in any way.  She has been in so much pain and tries so hard to suck her thumb (one of her only coping mechanisms), but the shaking is too violent and her body won't let her do that.

To Everything, There is a Season - earlier this summer we welcomed my brother home from Oxford and spent some wonderful, happy times together. My Little Sister got married just two weeks ago.  Family birthdays have come and gone, school activities and the like - a Season of Celebration and happiness!  Now, it seems, that a Season of Mourning is upon us, although I truly wish that were not the case.

Mike and I have been meeting with doctors and talking about the future.  We don't know why Lucy's body is seizing, shaking, etc.  We don't know why her bowels aren't working on their own, and why she isn't absorbing her feeds and medications through her gtube.  Will it change and turn around?  Will this just be a passing phase?  Oh, we surely hope so!  But, the evidence is telling us otherwise.  Lucy's body is tired and she's been in agony - NO parent wants their child to live in agony.

I've posted several video updates from the last weeks, onto my Facebook page, and you are welcome to catch up on more details that way.  For now, we are praying for Lucy to be comforted, pain-free and at peace, whatever that might look like.  While we know so many have the best of intentions by offering us remedies, solutions, vitamins, oils, and more, we are secure in the information and treatments we have at this time.  Thank you for understanding that, what we don't need right now, are remedies to help Lucy.  We just want prayer.

A precious friend has set up a Lotsa Helping Hands Calendar for our family, and the needs posted will change as this journey changes.  If you would like to help or serve, please visit the link below and find a way that will be easy for you and for your family.

Lotsa Helping Hands care calendar


We've had several folks ask us about a "Go Fund Me" page, but that's not where the Lord is leading us at this time. YES, we have medical bills and needs we are asking the Lord to provide for and truthfully, I have no idea how we would pay for what lies ahead (it's all so ridiculously expensive), BUT we know God will provide.  He is with us now and He isn't just going to leave us by the wayside, naked and afraid, without any hope.  If you would like to contribute financially, you may visit the link below.  All donations go solely toward our medical expenses and you will receive a tax write-off for your donation.

Tax-Deductible Donations through Helping Hands Ministries

Thank you for your prayers.  Thank you for your friendship, encouragement and love.  Your acts of kindness and service truly show us God's love and we are forever grateful.

Ryan

A Time for Everything

3 For everything there is a season, and a time for every matter under heaven:

2 a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;
3 a time to kill, and a time to heal;
a time to break down, and a time to build up;
4 a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
5 a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
6 a time to seek, and a time to lose;
a time to keep, and a time to cast away;
7 a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
8 a time to love, and a time to hate;
a time for war, and a time for peace.