Morning Has Broken!

My heart is overcome with gratefulness, spilling over with joy!  No, we did not win the lottery or fall into some lofty inheritance.   Mercy who has brought me to this place, allowing heavy, dark concrete to fall off my body, mind and spirit at this moment in time.  This joy isn't because of anything I've done, but I am more grateful for these moments than years of "thank you's" and praises could ever express!  

 

The Spirit speaks to me so often through song. Some may remember the old ballad of Cat Stevens' about a breathtaking morning, the peace so tangible, it dances like a mist over the meadow; the delicate birds begin to sing the songs God placed inside them. 

"Morning has broken like the first morning

Blackbird has spoken like the first bird

Praise for the singing

Praise for the morning

Praise for them springing fresh from the world" 

- Cat Stevens 

For the last thirteen years of our roller-coaster Journey, one desperate song has continually played in my mind, body and spirit.  God placed words in my mouth at the beginning, when Ellie Kate was in the PICU as a newborn, as the doctors told us she would likely die that very night.  I had no words - groanings too deep for words.  Some of you know exactly what I mean.   I only remember the chorus, but maybe that's all I'm supposed to have stamped upon my heart . . .  

"Oh, Lord Jesus, Come quickly to me!" 

 

 

But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.

Romans 8:25-27

At times in recent years, I've felt empty and broken, as if a piece of me were missing - a piece I needed to keep going.  During the trials and heartaches of this life, every single one of those feelings is normal.  Every feeling is okay to have, to FEEL.  Don't be ashamed of those feelings - there is nothing to be ashamed of, Dear One.  You are human; God made you with feelings and created you in a way to express them. 

 

There are no magic words, no specific Christian book to read or Study to go through; your heart and mind won't change when you hope or "wish" it away.  No, it comes in the Lord's timing.  He may give you this joy and freedom DURING a struggle, or He may do so in between the seemingly constant trials.  All we can do, all we MUST do as Believers, is SURRENDER - surrender over and over, our hearts always bent before God. 

 

Your Father WILL sweep in and show Himself in your life, even in the midst of the heaviest trial.  He is, "Mighty to save", continually moving mountains on behalf of His beloved Children (even if we don't see them).  

 

 "The Lord your God is in your midst, a mighty one who will save; 

he will rejoice over you with gladness; he will quiet you by his love; 

he will exult over you with loud singing".

Zephaniah 3:17

 

Our God continually PROMISES to make ALL things work out for YOUR GOOD (and the good of your children, spouse, family), and for HIS GLORY.  As followers of Christ, what more could we want in this life than for God to be glorified through our lives and the lives of our children, AND for Christ to get the glory for everything?!? 

 For I know the plans I have for you, declares the Lord, plans for welfare 

and not for evil, to give you a future and a hope.

Jeremiah 29:11 (ESV)

 

This is God’s Word on the subject: “As soon as Babylon’s seventy years are up and not a day before, 

I’ll show up and take care of you as I promised and bring you back home. 

I know what I’m doing. 

I have it all planned out—plans to take care of you, not abandon you, 

plans to give you the future you hope for.

Jeremiah 29:11 (MSG)

 
Oh, Father!  Thank you for this glimpse of happiness, joy and sweet expectation!  Thank you for relieving my heavy burdens, even if only for a moment!  How grateful I am to breathe so lightly, to rest so deeply and freely, knowing I can trust YOU with everything.  Life will always be difficult.  I will continue to live in survival mode because of our circumstances, however, YOU are there.  I find hope and peace, knowing you are using all of this for the good of my children, my family.  How humbled I am that YOU would be glorified in me, a broken and sinful human.  When I'm next in the darkness; if the heaviness of these trials once again dims my spirit, may I remember the feather-weight of these days.  

 

I Surrender, 

Ryan

 

CONNER is enjoying his freshman year at Westmoore and is working hard, playing on the soccer team.  High school is a whole new world, but we are incredibly proud of the young man Conner continues to be - tender-hearted, affectionate, witty, helpful with his sisters and patient with his brother. His life brings peace, balance and LAUGHTER to our Home.  I'm so grateful for Conner (or, 'Boy' as Bowen calls him). 

BIG grin from Henry - looking up to Big Bub

 

HENRY has been initiating his schoolwork and chores, showing more and more of the "Real Henry" we know and have missed.  He's growing more responsible and even more affectionate, hanging on to every verbal affirmation that comes his way.  Henry has changed for the BETTER since his IVIG treatment last fall, and we've seen a HUGE difference in his life.  His life is more calm and steady, without as many highs and lows.  He is able to eat and has gained back the weight lost last summer due to PANDAS symptoms.  Henry's playing soccer again this year and has played every game in it's entirety (without taking a mental break , quick walk to calm his mind, not even a break for reassurance from me!  This is HUGE.  I hope to update more on Henry soon.  In the meantime, THANK YOU for praying for our Sweet Boy.  Thank you for giving, helping to provide a way for him to go to D.C., paying for his IVIG treatment - a treatment which has clearly changed his little life for the better! 

Look at the smiles on those faces!

 

BOWEN is a light and complete JOY!  Speaking in sentences now, we take great delight in hearing her speak, which happens to be quite often.  Bowie is athletic and is now obsessed with our "mamboleen" (trampoline).  She's small for her age, which just adds to the fun for me, as I want her to stay a baby as long as possible:).  Bowie Jane is just as strong-willed as our other kids, and has recently said, "Mommy, YOU MUST obey me!", "Mommy, PLEASE, no talk, no sing (I like to hum and sing around the house)".  She's graduated from "Bubba" to "Enry" (Henry), although she still goes back and forth on those.  My parent's dog is named, "Duggah" (Sugar) and Lucy's name is not only "Sissy", but also, "Juicy" (Lucy).  She enjoys singing, "Lucy, My Belle" with me - a favorite of "Juicy's", which PawPaw Stan would sing to her often.  Mike and I can't imagine life without Bow, and the boys often say the same.  

Joyous Bowen!

 

LUCY is growing, which is wonderful!  A year ago at this time, Lucy was so still ill and thin; she barely had energy to move at all on her own, something she loves to do.  Now, she's weighing heavier than ever, which is a MIGHTY blessing!!  Her energy level amazes us, although she still literally falls asleep anytime, in any place, in any position (she's a flexible pretzel due to the affect NKH has on her muscle tone).  She's moving more and more on her own, pulling herself up to her knees.  We haven't seen Lucy this happy and have not heard her giggle this much, since she was an infant.  It is a GIFT we don't take for granted.  

Happy Day at the Park!

 

Mike and I have counted approximately 30 urinary tract infections, which Lucy has had in her seven short years on earth.  This is heartbreaking to us and, through many tests over the last several years, we know Lucy retains her urine and the retaining is only worsening, instead of getting better.  The medications we've tried have not worked.  Lucy's still often in pain and at times, in her own way, can show/tell us what's hurting.  I know how excruciatingly painful my Intercystial Cystitis can be, and I fully believe that is how Lucy feels, likely even worse.  I can't imagine a child in such pain.

 

Even though Lucy is on Palliative Care, we have decided, with her specialists, it would be best to place a permanent catheter.  Most of the time, surgery wouldn't be done on someone on Hospice or Palliative Care, but we all agree this step is a MUST for keeping Lucy as pain-free and happy as possible. The catheter will allow us to drain Lucy's urine as needed, preventing retention, which in turn, helps to prevent bacteria growth, which in turn, eliminates or limits the amount of infections, which in turn, makes a happy and healthy Lucy Belle!  She will have to go "under" and be placed on a ventilator during the surgery, something we are extremely nervous about, as there is no assurance Lucy will wake up from that state.  We've never chartered this territory before; EK never had bladder issues, so it will be a new learning experience for us all.  Surgery is set for the end of April.  

Thank you for praying.  Thank you for loving.  Thank you for supporting us, in so many ways. We'll keep you posted.

Fear and Hesitation

My heart is beating quickly, in anticipation of something big and exciting, although I cannot truly foresee what that might be.  What I HOPE for it to be is the miraculous provision of Henry's IVIG treatment, which will help to cure and calm his PANDAS.  I'm in an expectant place because I know we NEED this; HENRY needs this in order to survive and in order to keep his faculties in check.  He needs this if he wants to become a contributing member of society and I do not say that lightly.  We know God has gifted Henry in multiple ways, ways that can and will bless the world around him but right now, PANDAS suffocates ALL of that.  It steals the good.  It blows thick, heavy smoke over the bright like a heavy, black cloud, preventing Henry from seeing clearly and preventing others from seeing Henry clearly, for who he truly is.  

IVIG and PANDAS (click on purple link for more information)

If you look at Henry from the outside right now, you can see the affects of PANDAS - he has lost weight and is dehydrated because he's afraid to eat or drink certain things (hysterically afraid); this is a newer symptom of his disease.  Henry's skin is pale and weak,  those big, brown eyes of his are sunken-in, with dark circles underneath.  Henry isn't sleeping - PANDAS isn't letting him but rather, it's making his mind go on overload almost all the time.  Last night, Henry showed me a picture of this new item he really wants.  He ended up showing that photo to me 27 times and finally, he apologized and said he "couldn't stop showing it" to me because his "mind keeps telling me to look at it and show it to you".  Imagine having those types of thoughts, especially as a child - uncontrollable thoughts, constant thoughts about the same thing, and those thoughts wake you up in the middle of the night; those thoughts hit you when you are trying to rest or when you just sit down to attempt school work.  He cannot control the invasive thoughts and it's tearing him up.  He's hungry but won't eat, tired but can't sleep, needs to do school work but cannot focus - understandably, all of this causes anger and resentment and all sorts of negative feelings, "WHY CAN'T I JUST FEEL NORMAL?!".

20/20 Story on PANDAS (click on purple link for more info/to watch video)

US News Report on PANDAS (click on purple link for more info/to watch video)

HESITATION: I've hesitated writing this post - I've put it off for so long and although I have posted on Facebook a bit, I still feel as though I'm holding this tightly to my chest, in a corner, slightly hiding from everyone.  I am so tired of asking for help (which I will get to at the end of this post)  I mean that with all of my heart.  Our Journey started in December 2005 and literally since that time, we've been sharing our story with you and you've been supporting us in so many ways - too many to mention, really.  I know many have "compassion fatigue" where our family is concerned and I hate that - I hate that we've driven you to that place of being tired/overwhelmed by the sorrows and needs of others. 

A "SEASON"?:   Yes, this may only be a "season" for us but, it has been an extremely long season, 13 years to be exact, and some of you have been with us from the beginning!  I need you to know, when we married, our goal was to love and serve others - that was our dream.  Our dream was NOT having others love and serve us.  YES, we ALL go through seasons of need and all of us get to a point of being humble and broken, in need of relationship, love, grace, prayers, and more.  I want you to know, I often cry-out to the Lord and wonder WHY our "season" has taken so long, wondering if this "season of need" is meant to cover our entire lives?  I surely hope not, Lord!  I cringe at sharing the deep, the dark, the needs anymore bc of that fear in my heart - fear of causing even MORE compassion fatigue, worried that by sharing again,  others will leave and walk away because it's "too much" or because they are tired of hearing all of the bad.  


TRUTH:  I love having the opportunity to share our Journey with others.  I do NOT like sharing when it seems to always be bad or dark.  However, the Lord reminds me now that I cannot help if this Season He has called us to, the one which He has kept us in for a Divine Purpose, is often full of heartache, loss and need.  I think of Job - I'm sure Job grew weary of his own journey being so "bad"and sad.  I know, part of the very reason of our journey IS indeed, for me to share - I'm to share the good, the bad and the ugly of this special-needs, medically-fragile, child-loss, life of a Believer because the World (and the Christian Community) NEEDS to see this part of life and needs to know how to go and love this people group with the love of Christ.  
So, I will choose to continue to share not only for  our family, but so these groups of people, these special individuals and their families will also be loved well and served, provided for in all sorts of ways, with the reckless love of God, through fellow Believers. 

I choose to believe God has a continued purpose for our continued Journey.

I choose to believe and recall the TRUTH, that God has allowed this Journey, 

He has placed us here for Divine Purposes.  

I choose to share, even if I feel uncomfortable; 

I choose to put-away my earthly fear in order to fulfill His purpose within me.

I choose to remember and cling to the fact that I am not responsible for how others interpret what I share; 

I realize not everyone will always know my heart nor 

always see where I am writing from.  

I choose to believe God will cause ALL 

of my sharing to work for MY good and for HIS Glory. 

I choose to believe God will use ALL interpretations of what I share, for HIS Glory.  

GO FUND ME:  Stepping out with the Lord's confidence, I share with you our Go Fund Me page, which was set up by two dear friends of mine - friends who have physical struggles and diagnoses of their own, yet still wanted to help our family.  Some of you have already seen this page on Facebook.  Please, feel free to share the entire link, however you see fit, with whomever you see fit.  Sharing the page alone will bring awareness to PANDAS and to Henry's struggle.  We know not everyone can give and we certainly don't expect that.  Please, only give and share as the Lord would see fit.  As you can read on the page, there is also a way to give and receive a tax-deduction, if you are interested.  Paypal can be an option as well.  

Go Fund Me for Henry McLaughlin (click on the purple link)

After meeting with Henry's doctors again this week, we KNOW he needs IVIG immediately.  That won't happen in Oklahoma (the 'immediate' part)- it's a ton of red tape, all the way around, even without insurance paying.  If we go to D.C. and receive treatment from Dr. Latimer, a leading PANDAS specialist who administered Henry's first treatment,  we know exactly who would be giving it, where it would be given, how, etc. If we do make it to D.C., that IVIG formula would only require one more infusion, IF that.  No matter how or where we do it, IVIG treatments will each cost approximately $13000.  

Thank you, Dear Friends.  Thank you for taking the time to read through this message, thank you for educating yourselves not only about NKH, but also about PANDAS.  Thank you for loving us and serving us as the Lord has led you, all of these years.  Please join us in praying the Lord will provide for Henry's IVIG treatment and if that means going to Washington, D.C, pray He would also provide a way to and from.  We are forever grateful for you.  I am forever grateful for you.  

Love Comes from God

I John 4:18

…17In this way, love has been perfected among us, so that we may have confidence on the day of judgment; for in this world we are just like Him. 

18There is no fear in love, but perfect love drives out fear, 

because fear involves punishment.  

The one who fears has not been perfected in love.    

19We love because He first loved us.…

With LOVE, Amidst My Fear - 

Ryan

Happy Bowen Day!

Today was a Beautiful Day, in every sense of the word, and even though humidity was at 115%, we spent the day overjoyed as a family - a family now of SIX.  Tonight, we take deep breaths of peace, drinking in the hope and absolute JOY God has richly bestowed upon us through our most recent addition - this unexpected, but SO desired and wanted Gift who is now officially, Miss Bowen Jane McLaughlin!  Today was Bowie's adoption finalization and it has been declared before law and God, forever and always, that this Princess is OURS to cherish.  Truly, Mike and I are in awe at the undeserved gift God's given, allowing us to be her mommy and daddy!

Lucy wore one of Ellie Kate's hair bows (seen slightly here),

while Bowen wore a matching bow which belonged to Lucy Belle! 

Last year at this time, Bowen wasn't even a thought.  We had dreamed of adopting a typical baby girl, but we felt it was so far off, possibly even a dream that might never be fulfilled. How in the world would it work out, especially with OUR life? Though God had laid specific things upon our hearts such as open adoption and going through a private attorney, we had NO  idea how things worked and we certainly didn't know God was already planning this Most Precious Life which is Bowen Jane.  Below is some of Bowen's Story . . .

A year ago in December, just after Ellie Kate's birthday, God heavily laid adoption on my heart and I hesitantly shared it with Mike.  I knew life was heavy and we were still struggling with loss and even depression, so I knew it might sound crazy to bring this "a" word up to him however, it was so heavy on my heart, that I just had to share with Mike, and so I did.  I told him, all I knew was that the Holy Spirit was laying that word, "adoption" on my heart and I felt that someday, somehow, we were to adopt.  To my surprise, Mike quickly agreed with those thoughts and said that he too believed we would adopt someday, although his thoughts were that we would adopt several years down the road and I had no certain timeline in my mind or on my heart.  We decided to pray and focus specifically on this BIG, possibly life-changing topic for our family and God quickly answered and again laid the same things on each of our hearts, including guidelines, of sorts for what we would do and how we would do it.  Here are some examples . . .

• We truly felt God would bring a birth mom/bio mom TO us directly.  We knew we wouldn't have to put out an ad, spend time searching, etc. in finding this special woman who would carry our child. 
• We knew God didn't want us to go with an agency.  We have no ill-will or bad experiences with agencies and in fact, have several friends who have successfully adopted through agencies they love!  We just knew that wasn't how it would be for us.  We didn't have the finances to adopt in this way (agencies are more expensive), so it was a clear, automatic closed-door to us and we didn't think anything about not having an agency to lead.
• We knew we wanted a girl and we knew God would give one to us.  It could sound selfish and may be hard for many to understand, but since we've faced so much with our children's health,  and since Our Girls both were born with terminal diagnoses, we had a desire for a Baby Girl who was relatively healthy (our perfect desire was for an absolutely healthy baby).  If God so granted, we would love to experience all that comes along with a typical healthy baby girl, and we've longed for our boys to experience that as well!

What's sweet is that Mike and I had talked about adopting early in our marriage and it was something we were very serious about before we became pregnant with Sweet Conner.  Even then, around 15 years ago, God had already stirred us both for this adoption adventure. 

After hearing from the Lord and after praying and studying on adoption, we decided to go ahead and "randomly" post something on FB - I would just throw our desire out for the world to see in hopes that somehow, someway, people would spread the word and, at some point down the line, a birth mom would get in touch with us, be it months or years later (we were thinking more of the latter).  The conviction to post about the adoption that December was incredibly strong and even though I felt silly sharing that, especially during Ellie Kate's Month of Reckless Love.  After posting though, I felt a HUGH sense of relief and a remarkable sense of PEACE, which can only come from God. Truly, I am FOREVER grateful that I did because the word of our desire to adopt DID spread from there and without that post, we may not have been connected to our Bio Momma!

Toward the end of August 2016, I was contacted by one of Ellie Kate's former home health nurses who asked if we were still interested in adopting.  Of course, my answer was open and honest, "YES!", we were interested and longed for it, but it was such a hectic time with school starting, and Henry was hurting both physically and emotionally.  Mike and I weren't sure about the situation, but it sounded like the birth mom, an aquaintence of Ellie Kate's former home health nurse, was on the same page as we were on details.  Mike and I told both the Nurse and Birth Mom that we would wait to make any moves until we found out the sex of the baby, and to tell you the truth, we really thought it would be a boy and surely thought God would shut the door right then and there!  To our AMAZEMENT, we received the happy message that this baby was indeed a girl, and our eyes and hearts started to wonder in excitement!!

It's true - our family has a lot going on with a medically fragile child born with NKH, a terminal diagnosis.  We are also parents of child-loss, a mom and dad to a typical son as well as a younger son, who also has special needs in PANDAS and epilepsy.  To many, it seemed that we would be biting off more than we could chew.  We were weary of that too in the beginning and from the very moment we heard about this little New Life, we asked God to clearly open and close doors for us, even if that meant in tangible ways. 


Friends, we ONLY have wanted what HE has wanted for us and for our family because we well-know that life is just too short to waste apart from Him.  We've been through too much to think we could do it on our own.  So, after asking some close friends and a few  Church Elders to pray, and after seeking wisdom from our doctors (and the kids' doctors, counselors, etc), we had confidence that we were in fact, supposed to step out and seek this New Life; we WOULD move forward until He told us not to.  Mind you, we FULLY expected God to close and slam doors early on, BUT HE DIDN'T, and our hearts grew and opened as we became close with the Birth Mom. 

God's Promises have been evident and recently, He's

tangibly reminded us of His Faithfulness through many  gorgeous rainbows!

I had the absolute privilege of taking Birth Mom to doctor appointments weekly (medically necessary in her case).  It was a JOY getting to know this gorgeous woman I wouldn't have otherwise known, if it weren't for her willingness in allowing US to raise HER biological baby girl, as our own.  From the beginning, Birth Mom told us she felt as though she was simply a "vessel" for Bowen to come to us.  This Precious Woman truly loved her baby, and yet she believed that her baby was destined for US, for OUR family.  So, she carried Bowen in her womb, caring for the baby on our behalf.  It is unbelievably humbling and too precious, too tender to fully be explained in human language. 

When we found out  Baby Girl was to be born in January, we sensed even more confirmation from the Lord that this was something completely and utterly from HIM.  Was it true?  Was God allowing us to receive this Unspeakable, Unbelievable, Most Precious Gift of Life during the SAME time we would be celebrating Our Ellie Kate's birthday and Heaven-Day?  Truly, it felt too good to be true and I found myself crying before the Lord as I knew I wasn't worthy of such a gift.  In reality, I wasn't expecting God to heal our hearts in such a precious way, to bring restoration to our minds and spirits, although He does promise to do such things for those who surrender to Him.  Still tonight, I am in sheer awe and wonder at the thought of just HOW and WHEN God brought this all into place!  I'm so underserving and He is SO

able to do ABUNDANTLY MORE than anything we could imagine!  Truly, God has turned our Season of Mourning into a Season of Dancing.

God's plan was to place godly people along our way so that we WOULD be prepared; so that I in particular, would be prepared for the physical, mental and emotional things which could creep up along the journey.  I'm thankful for willing adoptive mommy-friends who literally have come to my house and answered questions, cried with me, served me with gifts, and most importantly, have prayed with us and for us (thank you, A, D, K and S!).  The Lord clearly and fully spoke through these women, and I will continue to glean from their wisdom and friendship from here on out.


On the morning of December 23, 2016 Birth Mom and I went in for her early doc appointment and were both SHOCKED that labor was here.  It looked like Bowen Jane could actually come on Ellie Kate's Heaven Day!  I had imagined that scenario before that moment, but wasn't truly sure how I would feel.  A Momma who has lost a child never wants to stop mourning for their Precious One and I wanted December 23rd to continue on as a "Holy" Day for us, where we recognized God's movement and nearness as we relived Ellie's life.  However, God clearly reminded me that He is a God of RESTORATION and THIS was a way He would restore my heart and the hearts of everyone in our family (extended family included).  He reminded me that this date was bigger than just me and my feelings - it was about my living children, my marriage, my parents and in-laws; and it was definitely about my Sister, Rachael who's birthday happens to be December 23rd as well.  God was restoring things for THEM and not just for me (imagine that!)! 

So, when the doc asked me if it was okay that we had a baby that day (he was aware of our situation), I could say with full PEACE, "Yes!" .  Yes! This is the day I wanted to see God move on our behalf and once again, everything about the life of a little girl was completely out of our control.  It was an honor and relief to sit back and watch God at work - with His perfect timing on detail, every medical personnel we came in contact with, even schedules and the fact that Mr. Henry was there for Bowie's arrival. 

It was (and IS) one of the greatest honors of my life, holing the hand of a beautiful, selfless woman who had chosen ME to raise her child.  I will never get over the gravity of that choice.  Bowen arrived late that evening and she literally was THE most beautiful newborn I had ever seen.  I didn't know what to expect - Bio Mom and I hadn't planned out exactly what would happen next, but as soon as that doctor pulled Bowen out and held her up, Bio Mom told ME, "Congratulations, Momma!" and I immediately hugged and kissed this brave woman who's entrusted me with so much of herself.  Oh, how humbled I was and will forever be by her words and actions that night!  They gave ME the gift of cutting the cord, then Bio Mom instructed the doctor place Baby Bow directly on MY chest, rather than hers.  Tears will forever flow freely at the mere thought of that moment.

The rest of the hospital story was truly a Dream as we were able to have a room there, just as if I had given birth.  On Sunday morning, we loaded the car and said goodbye to Bio Mom and her beautiful teenage daughter.  WHOA.  The gravity of it all was so strange to wrap our minds around, but we hugged and kissed and thanked each other and then we were off! Bowen Jane came home on Christmas Day. 

Since that time, Bowen has only brought LIGHT, LOVE, JOY, and PEACE as well as a HOPE that had been lost inside of me at the death of Ellie Kate, and in the time following.  Bowen is a HAPPY baby and loves everyone!  She lives up to her name and is petite and victorious, hitting all milestones far in advance (which is new to us).  She is Our, "Glorious Gift of God" and He has brought a tangible healing to the hearts of everyone - both boys, Lucy, me, Mike,
our parents . . . Bowen is the fulfillment of desires we almost were afraid to dream; she is a sign of Restoration to us as individuals and families.

Our lives have happily changed, becoming more busy than ever, but they are so rich and full and Mike and I stand in awe as we watch the Boys talk to Bowen or carry her around (with permission, of course).  They kiss her and help me and often say, "Mom!  I didn't know a baby could do that!", because to them a baby's abilities have been limited because of NKH.  Our dreams have expanded and although we want Bowen to be and do all that she wants to be and do, Mike and I can't help but dream about dance class and tee-ball, kindergarten and sleepovers; hobbies and passions we get to watch unfold before our eyes.  This Gift if not accepted lightly, of that you can be sure. 

Please don't be worried that we've somehow tried to replace Ellie Kate with Bowen Jane.  If you read through the story again, you will see how we instigated none of this, and that's another way we know it is absolutely from the Lord.  HE worked it out in every detail, knowing the dates and times, as He is the Creator of every living thing; the One who puts planets into motion!  It is impossible to  fathom the thought of trying to somehow "replace" a child and that has never been, nor ever will be, our intent in adopting our Sweet Girl. 

Ellie Kate and Lucy Belle are unique, wonderful Gifts from God - the MOST perfect gifts, better than I could have hoped for, because they've taught me the depths of Christ's love for me and the intimacy of the Holy Spirit.  Because of Ellie and Lucy, God has given me desires and opportunities I never thought I would have.  The Lord has sweetly refreshed my heart and opened me up to a deeper, fuller love for those around me - in my family, my community, and beyond.  It's all because of the work HE has done, all because He chose to do so in and through MY Precious Girls.  And you know what? Bowen Jane's life will have an equally important impact on my life and because of her, God has already tendered my heart toward so many things I didn't even know existed!

December 23rd will always be Ellie Kate's Heaven Day - the day she met Jesus face to face; her last breath here in our arms, was her first breath of eternal, perfected life in Heaven!  God has chosen December 23rd as the Day Ellie Kate would meet Him again face to face, and we continue to trust  His infinite wisdom, causing ALL things to work together for our good (EK's good as well!), and for His glory.  Ellie Kate will always be my first-born daughter, the One I hoped and dreamed about since childhood, with her most perfect lips, perfect green eyes, full eye-brows, long eye-lashes, gorgeous skin which glistened in the sun, and those perfect little curls that would bounce as she did, all around the house.  I will always have a deep longing in my heart for My Ellie-Girl as I continue to try and smell her sweet scent on everyone of her items still treasured in our home, as strain to remember and hear her deep giggle.  I will forever yearn for the day when I will run to her upon reaching Heaven and scoop her up in my arms, never to be parted again.

December 23rd will always be the day Bowen Jane McLaughlin took her first breaths here on earth.  It will forever be a day of promises fulfilled by our Covenant-God, who promised to restore all that had been lost, including our hope, joy, light, and laughter which have already been reknewed.

We will continue to celebrate life and death and yes, we will celebrate it on the same day.  I don't know how, but we will and we'll continue to honor Ellie Kate's life and legacy of Reckless Love - the unconditional, compassionate love we learned by loving her and living with her during her short seven years on earth. 

No, Bowen Jane won't be compared to her Big Sisters, but she will know them from the stories will tell and the pictures we share. 

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UPDATES . . .
Lucy's still struggling with severe pain and although we now have heavy meds on board, she still screams out, many times for hours on end.  When she's not screaming, she's often sleeping, her body worn-out by the thrashing and crying out she's done so much of each day and night.  We long to see Our Lucy, who smiles and laughs and loves to be tickled; the Girl who loves music and her brothers, even her new baby (she loves to give Bowie kisses and even allows her in her be sometimes).  We long to see Lucy healed here on earth, with us but we also want what's best for her and admittedly, we don't always have that knowledge. 

• Please pray for pain to ease in LuLu, for doctors to have wisdom as they treat her and wisdom as they learn to care for her. 
• Pray for her home health nurses, that they would have strength and that they wouldn't grow too weary of the screams and the scratches and bites which often come with it. 
• Please pray for the Tully's as they care for Lucy while we are with Henry at his next big appointment, that there will be clarity in every direction given, peace in every moment (for Lucy and parents), for protection from all illness and harm, especially while we are away.

Our Van tapped out last week and is STILL in the shop (a full week later - ya'll, that isn't good!).  We hope to have it out soon but are also praying for a vehicle which can fully air and cool those in the back seats, including (and especially) Lucy and Henry who tend to seize in heat. The need for air is actually HIGH out-ranking the need for handicap-accessibility, which we could actually now do without. Go figure.  Would you believe it??!!!  Dear Friends loaned us their new van (non-handicap accessible) and it works Perfectly!  It has changed our minds as far as what future vehicle we desire, especially with all of the air conditioning capabilities!  We would love for your prayers alongside ours, that these special friends who've offered such a gift, would be richly blessed for doing so and that God would sweep in near to them as they too walk the roads of medical fragility and special needs. 

Henry's appointment with the PANDAS/Neuro Specialist is MONDAY, and we are so excited  to be gifted this medical trip!  Even Mike, Conner and I are ALL able to go, which will be so fun and we are truly blown-away at God's goodness in giving us this special time with the boys.  Somehow, someway, we are able to spend special time with just the boys, each and every summer and I know it's something they will remember and treasure always. 

• Please pray for clarity for the doctors and wisdom ahead of time. 
• Pray too for peace for Henry during the entire trip. 
• Our hope is that we receive life-changing direction during this visit with the Specialist, direction which will allow Henry to feel comfortable among his peers and have the ability to function among society as he grows. 
• We are SO desperate for God to move during this trip! 

Conner is our Brave Bubba, who lovingly dotes on Bowen almost non-stop.  He's grown a couple of inches this summer already which makes for sleepy days and sore muscles (growing pains).  I cannot believe how grown-up he is with his deep voice, long legs and hairy armpits:)! 

• We are GRATEFUL for Conner and ask that you would pray for any and all depression and defeat to be lifted from him
• Please pray with us, that the Lord would run in and capture Conner's heart in ways he cannot even fathom at this time. 
• We want to see God move in Conner, causing a spark that can only come from God! 

Thank you for joyously celebrating the addition of Bowen Jane to our family!  Thank you too for continuing to pray for us,  encourage us, support us, and love us as you are led.  YOU make a difference in our lives and in the lives of those around you and we are eternally grateful!