Friday, July 21, 2017

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 feelA 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 hersTears 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 earthIt 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!

Monday, July 17, 2017

Where Is the Compassion?

This last month has been filled with incredible highs and desperate lows for my family and for many who are dear to us.  Our NKH Family lost three children in one week alone, with several more doing poorly, even close to death. 

Even more personally, I've watched several mommas whom I dearly love, make tough decisions for their medically fragile children, some facing unexpected and life-threatening set-backs within a 24hr time period.  Hope Link has four children home on hospice at this time and one precious boy on the ventilator in a local PICU. 

During this time, I've seen the most beautiful Compassion unfold before me, with people loving those who are hurting, in tangible waysI've seen friends AND strangers serving those who are hurting.  I've also seen many missed opportunities to show for Compassion, in my own life and in the lives of many around me.  Because of that, I believe God has opened my eyes to Compassion because really, apart from Him, we have none.  He's sparked within me the desire to dive a bit deeper into "Compassion" itself, and I'd like to share with you a few things I've learned along the way (I do so hope you'll stay along until the end of this blog!).


Compassion (Meriam Webster): a sympathetic consciousness of others' distress together with a desire to alleviate it.

Compassion is when one person looks upon another person's heartache, hardship or grief; all with a desire to put an end to that heartache, hardship or grief,
OR to find a solution for it

Compassion isn't just feeling pity for someone's distress; it's not only feeling sympathy, not only weeping alongside them as they endure that distress.  No, compassion means you are SO deeply moved by what you see someone else going through, that you jump to help in any way possible - leaving your own comfort, desires and plans behind.  It's giving of yourself, your time and talents, all to better someone else; to help them through and to carry a burden along with them.


Here's the Thing . . .
Every Believer; every individual who has called Jesus, "Lord",
every Follower of Christ WILL posses and even practice compassion
They will also given opportunities to practice Compassion, even on a daily basis. 

Colossians 3:12English Standard Version (ESV)
12 "Put on then, as God's chosen ones, holy and beloved, compassionate hearts,
kindness, humility, meekness, and patience".

It's my opinion that not every Believer finds compassion easy, although some really do - that is where the Holy Spirit and His giftings come in.  HOWEVER, as God's Children we are ALL called to LIVE out Compassion, He can and WILL give each of us the strength and ability to show and relay compassion to those around us who are hurting! 

  • Christian = Compassion - God will always place it within the heart of the Believer and will give them ample opportunities to live it out for fellow Believers, and for the World around them!
  • Compassion isn't just something we are called to practice when it's convenient.  Only helping when it's convenient isn't "compassion" at all.
  • Within Christ's "Compassion", we find mercy, love, forgiveness and more, just as shown in Scripture.  He calls us to "put on" or "choose" to act in those specific ways (see Col 3:12).
  •  Compassion is something we RUN toward, not away from, just as Christ in His compassion, has seen our distress and has come (and still comes) to us.
  • Compassion is a trait of JESUS. In turn, it should be a trait of EVERY Believer. 
  • Compassion is one of the main themes of The GOSPEL, and is seen throughout both the Old and New Testament.  is FULL and overflowing with examples of compassion 
Romans 12:20 To the contrary,“if your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals on his head.”

Matthew 14:14(ESV)14 When he went ashore he saw a great crowd, and he had compassion on them and healed their sick.

Romans 12:20(ESV)
20 To the contrary, “if your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals on his head.”

2 Corinthians 1:2-4(ESV)
Grace to you and peace from God our Father and the Lord Jesus Christ.

2 Corinthians 3:12 (ESV), Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.

Are you living a life of Compassion? 
Do you scroll past those lamenting, sorrowful or "needy" posts on social media? 
Do you turn a blind eye to the neighbor who needs help with her trash cans?
Do you look for ways to show compassion during your day? 
Can you think of ways you've shown compassion recently? 
Does Compassion come easy for you, or is it difficult? 


Once you see how recklessly God loves you;
once you experience His goodness, mercy and forgiveness
in radical ways, and once you've been in a position
to need HIM and ONLY Him to meet your needs,
you will get a FULL taste of how
beautiful Compassion can be!

Friends, I know the updates from family's like ours aren't always happy or full of bliss, and I'm the first to admit that must get old! Some Believers can't stand the monontany of sorrow and pain because it's uncomfortable and "brings them down too".  Others may think, "Didn't they JUST ask for help or prayer?" or, "Seriously? Haven't we heard enough about that grief and heartache!?". However, I encourage you to REACT and ACT with compassion, above all else.  If it's hard for your heart to get there, try putting yourself in the shoes of those who've been called to live these life situations. 


If you've found yourself  feeling some of the things listed above OR
Maybe your heart isn't naturally tender;
your reaction isn't always to run in and relieve or revive.
Perhaps you're afraid of taking too much time away from your
business or your family, even hobbies which are important to you; 
with a humble heart, I suggest doing the following . . .  


  • Surrender your ALL to His Lordship
    • Give Him everything you have (possessions, good name, position)
    • Give Him everything you are (personality, background/past, spiritual gifs)
    • Give Him everything you hope to be (dreams and desires)
  • Ask God to reveal His precious Compassion toward you:
    • Ask Him to clearly show you His INFATHOMABLE love, mercy and forgiveness for YOU. 
    • Pray that He would overcome you with His love, mercy and forgiveness. 
  • Ask God to FILL you with Compassion -Ask Him to fill every part of your body, mind and spirit with His Compassion, Mercy, Love, Kindness, Forgiveness and MORE!
  •  Ask The Father to give you opportunities - Ask Him to give you opportunities to practice and show Compassion, to live it out toward others. 

Surely, it's more evident now than ever before, that our world is broken. 
Our hearts are broken. 
We are broken as communities. 
We are broken as churches. 
We are broken as The Church. 

The World needs LIGHT, they need compassion, mercy, love, forgiveness, freedom, and all of the many other things Our Jesus brings to us!  The way for the World to SEE that Light is through us, Believers, Followers of Christ.  It's time to set aside selfish gain and pride, and step up and out, LIVING compassionate lives for all to see!  Let's go out there and give them the Compassion Christ so freely extends to us, every moment of every day.


I'm so grateful for the Great Compassion He has shown to me!

Ryan

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Practical Ways to Help/Serve a Family in Crisis:
(medically fragile, special needs, death, and more)

I encourage you NOT to say, "Call me if you need anything"; though it may be a sincere offer, the person in distress and crisis is already overwhelmed and deciding what they need you to do or what would be the most helpful, can be daunting. 
Instead, suggest a day and time you are already available to help, offering to do something specific that's easy for you or that you already enjoy.  For example: Hey, Susie!  I'd love to do laundry for you this week, if it will be of help!  The easiest day for me is on Wed.  May I pick up your laundry then? 
Below, there is a list of things in which you can put into practice what you've learned above by offering to do something you know you are able to consistently do or follow-through with.  It's also really fun and special to have things done without your knowledge.  May the Spirit lead you in loving and serving the world around you! 

  • meals - frozen or fresh
  • snacks - for the hospital or home
  • mow their lawn/do their lawn work (with permission or without)
  • bring up trash cans from the curb each week so they don't have to worry about them
  • babysitting
  • fellowship - offer to come hang out or invite them over to your place
  • gift cards - for groceries and toiletries, restaurants and even for places you know they enjoy
  • plant flowers in their flower beds (with permission)
  • small gifts for the children involved - helping to make sure they feel loved during this time of distress
  • and MORE:)!
 





Sunday, June 11, 2017

Dreaded Post - With A Broken Heart

This is a post I've been dreading for a little while now.  Actually, those first pits of dread and fears came sweeping in upon burying Ellie Kate in 2012.  After that, I was often reminded of a truth I didn't want to believe, face or even realize - the truth that one day, unless a great miracle were to take place - Lucy Belle would also pass awayMike and I want to share with you tonight, that Lucy Belle has been placed on Hospice Care.  WE want to tell you because there are MANY layers to this news and to this choice, so I truly hope you will stick out this blog post (even with my inevitably, heavy-handed pen), making sure you get a clear picture of where things stand. 

If you've been following Our Blog, you've noticed that Lucy's been suffering for some time now.  We've run test after test after test, mostly invasive, some in-patient and some outpatient; ALL uncomfortable and even painful for Our Sweet Girl - things we absolutely HATE for her.  We still don't have full answers on bladder/kidney pain nor on the endless, sleepless nights full of screeching and painful cries.  But, there have been comfortable times too, as well as somewhat restful nights.  Lucy's still smiling and still finds joy, still showing interest in the things that she loves like her brother, her doggies, her grandparents, her Daddy, taking walks, swinging and being outside (whenever it's not piercing hot); she still LOVES shopping with mommy, loves being in a pool, her friends and nurses, and being around other kids here at home.  LUCY IS A JOY and lives up to her name, "Beautiful Light"!

The hardest truth that's come to light is that Lucy Belle is declining, or maybe it's NKH progressing; probably BOTH.  Our doctors are aware of this and are actually the ones who've brought it to our attention, although we've known in our hearts that this decline has been taking placeAll of us have noticed the progression of the disease and the level of suffering continues to rise, despite our best efforts on all fronts. 

The MOST important thing to us as Lucy's parents, is to know that she is as pain-free as possible.  After watching Ellie Kate suffer SO greatly with pain her entire short life, we promised ourselves and Our Daughter (all of our children, really) we would do EVERYTHING within our power to keep the pain away, even fighting for them to be pain-free, consistently staying on top of the medical teams until they did what we thought needed to be done in order for Lucy to be comfortable.  It's in this light which we've made the hard decision to place Lucy on Hospice Care. 

Friends, obviously this decision hasn't been made lightly, but after visiting with trusted doctors and nurses, as well as the Pediatric Palliative Care team, we agreed with their decision that Hospice would be the very best way to keep Lucy's pain under control. You see, Hospice isn't only end-of-life care but in fact, can also serve as palliative care.  The Hospice Nurse will be able to deliver whatever meds Lucy might need, whatever time of day or night she might need them.  Also, a special pediatrician will be in charge of Lucy's care now, working closely with Hospice and the Palliative Care Team, meaning she will receive the more personalized treatment she needs - the kind we've been praying AND searching for! This knowledge gives us as parents much hope, solace and satisfaction and we know that no other service could bring this type of care, despite the heaviness of it's name. 

It may bring your heart comfort to know this, as it's brought me much comfort in remembering it . . . this is much how we ended up treating Ellie Kate's first year of life which was spent on hospice as well, and as she continued to thrive and survive despite being on Hospice Care, as she defied the doctors yet still needed close attention, including pain medication and palliative care intervention, it really was the perfect coverage and situation for Ellie Kate God orchestrated it all without us even fully understanding it at the time and now, when the choice was brought up to us again with another precious Girl, it wasn't difficult  for us to fully understand and remember it benefits, making it so much easier to make the right decision. 

I know the words sounds so tough, HOSPICE and believe me when I tell you that it's incredibly difficult for me to even udder, much less write to you tonight.  I'm crying now, because I didn't think it would be like this, and even though we've known Lucy's quality of life has deteriorated greatly.  Making these choices are sickening - even WHEN you KNOW it's the right thing, even WHEN it's the second time around.  I didn't know these years would go by so quickly, you guys.  I just didn't know. 

Something bringing us great comfort - something we want you to know -  is that Lucy is STILL FIGHTING and as long as she's still fighting in this life, WE will be fighting for her, every step of the way, just like we did with Ellie Kate. We have no plans of backing down on Lucy's treatment, nor any plans of future treatment at this time.  Also, we trust that in this, you respect us as we make our own decisions based off the Holy Spirit's leading and recommendations by our trusted doctors and nurses.  While we appreciate your own experiences, remedies and ideas, we ask you refrain from sharing those with us at this time.  Thank you in advance for understanding this important request.


"Life List" . . .

Once we knew Ellie Kate would be going home from the hospital on hospice that last time, we quickly made a "Life List" which is much like a "Bucket List", but instead is focused on things we believed Ellie Kate would want and enjoy doing before going to Heaven.  With your help, we made a few of those things happen, even though literally within only a couple of days, and we couldn't be more grateful! 

Even though Lucy is stable and we don't expect any major changes ANY time soon, we've decided to go ahead and make a "Lucy's Life List"!  We'd love to accomplish the entire list by her seventh birthday on September 26, 2018.  We're still working on this all-importance list but we know a few things Lucy would enjoy and LOVE at this time . . .
  • Going to the Ocean!  We'd love to take Lucy to the Destin area, or somewhere nearby, as Ellie Kate also spent a bit of time there and had a blast.  We took Lucy there on the first anniversary of Ellie's death but since it was unseasonably cold that time, Lucy wasn't able to get into the ocean in any way (although we have great pics of her sweet feet in the white sand!).  Feeling the warm sand and warm waves would simply be a dream come true for us and for Lucy! 
  • Going on a boat!  We'd love to take Lucy on a boat ride!  This could be at the ocean or even at a local lake!  She could ride like a typical kiddo and could even get into a tube of some sort.  She loves driving fast and had a blast on the rides at Disney and Universal, so I know she'd love an "active" ride! 
  • A pool - this is waaaay excessive, WE KNOW.  We just also know that Miss Lucy LOVES water and it calms her to be around it and in it, even though we don't have access to it much. When she is around a pool, she could stay there ALL day, soaking and floating - it's the only place where her body is free and I believe it helps with aches and pains as well. 
  • Meeting Blake Shelton (and maybe Gwyn??) - Lucy LOVES country music, although she likes the guys' voices rather than hearing the girls' (which were EK's faves).  Maybe, since he's from OK, there would be a way to make this happen?  Obviously a sort of pipe-dream, but putting it on the list, nonetheless (EK wanted to meet Taylor Swift, Miranda Lambert or Carrie Underwood but received some special gifts, some autographed instead AND received a personal, taped message from Miranda, just for 'Ellie-Girl'). 
You know, I remember holding my little one-year-old girl, her little chunky legs and her animated face; those blonde, bouncing curls, gazing on her cherub-likeness - I clearly remember, at that very time and many times immediately after, that I had at LEAST SIX YEARS before I even had to WORRY about Lucy's well-being here on earth; before I even had to think seriously of her morality.  I don't know why I thought this as there has been no promise of Lucy's life being only the length of her Big Sister, and quite the contrary as Lucy's life has been spent OUT of the hospital and has been mostly healthy and happy!  Somehow, someway, I had that "worry" timeline in my head and I think of it now as a coping mechanism in some way.   I wish it had gone by more slowly. 

Six LONG years. It's a long time, right?  But it isn't, and we all know it.  And now, Lucy will be six years old this September, which means she is inching ever-so-close to that 7-year-mark which Ellie Kate barely hit (EK turned seven on Dec 4th and died Dec 23rd).  But,  please remember along with us, that Ellie Kate was only on hospice for three, suffered-filled days.  But you know what?  That WILL NOT be the case with Lucy.  While we cannot see the future nor what each day will hold, we do know that Lucy is stable upon admission to hospice, which is very different than Ellie Kate.  We have hope for more than a little more time with Lucy, holding to the expectant hope of more memories to be made, the realistic hope of more laughter and millions more kisses! 

Ya'll.  Whew.  Thank you so much for your support and encouragement over the years.  Thank you in advance for your support and encouragement through this as well.  Thank in advance for helping us work on crossing things off of Miss Lucy's "Life List", and for praying God would work in special ways where it's concerned. Most importantly, thank you for your prayers and petitions on behalf of Lucy's health, especially now. 


With Hope in My Broken Heart,

Ryan


Friday, June 2, 2017

PRAISE-FILLED Post - the McLaughlin Summer and Adoption Garage Sale!

Zipadeedoodah, Summer Is Here!  Per usual McLaughlin Style, this first week of “vacation” has NOT been a disappointment in the area of excitement.  First up, I’ll be filling you in on our VERY important Adoption Garage Sale and then move on to updating on The Girls and then, The Boys.  Here we go . . .


Adoption Garage Sale – You may be asking, “What in the world IS an ‘Adoption Garage Sale”? The answer is simple:  it’s a garage sale dedicated to raising funds for a specific adoptionThe goal of OUR Adoption Garage Sale is to raise the final funds needed in order to make Bowen’s Adoption official!  While we DO have legal custody of our Precious Girl, we are bursting with excitement at the thought of giving Bowen Jane our last name, forever and always making her a part of our family.  So, with our goal just over the horizon, we decided to hold a garage sale which would help us clean out our home, while also focusing on this VERY worthy goal (Bowen!).  Generous friends have even come along beside us, donating their OWN items to our sale, which first took place last Saturday. Because of those donations, last Saturday’s Sale was a HUGE HIT and we raised more than we had hoped or expected!  In fact, we had SO many quality items left over, we’ve decided to extend our sale and host it AGAIN, THIS Saturday, JUNE 3rd (TOMORROW)!  Now, the forecast says it may be a bit stormy from time to time on Saturday, but we’ll host the sale come rain or shine; and, if we need to, we will hold it again NEXT weekend too! 


Even though it’s last-minute, we ae still taking donations for the Adoption Garage Sale!  If you have nice, quality items you’d like to pass on to us in order to raise funds for Bowen’s Adoption finalization, we will be HAPPY to take them!  You are welcome to drop them on our porch or in our driveway, OR you can call one of us to make alternate plans (see below for contact info).  We will also gladly accept items which could be sold online via FB, craigslist, etc.  

While Mike and I wish we had the ability to pick up every donation, we simply just aren’t able to due to many big reasons, to be honest.  We are very grateful for any items which can be brought to us!  If other arrangements are needed OR if you need our specific home address, please contact either one of us directly- Mike: 405-812-3589; Ryan: 405-923-8562. 

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


THE GIRLS . . .


Lucy’s started crawling in the form of tiny “hops”, exactly like Ellie Kate.  This is a HUGE thing for Lu Lu and although she’s just getting started, we have no doubt she’ll soon be independently mobile like her Big Sister once wasThe sounds of sweet knees dragging across our tile floors will be a MUCH-welcomed sound – it’s a sound we’ve missed beyond comprehension.


Actually, Lucy’s on a roll, having lost THREE teeth, which is all new to us seeing as Sweet EK never did lose a single tooth.  Like most special needs/medically fragile children, we think Lucy’s likely swallowed those first two baby teeth, much to my heartbreak (seriously, I’ve been wailing over this as I so want a tangible part of My Girl to keep for always - okay, ‘wailing’ could be an exaggeration, but I have been very sad and my bottom lip has continually been sticking out, hee hee).  Then Today, I had the joy and PRIVILEGE of being a typical mom, joyfully yanking a third little tooth out of Lucy’s precious mouth (yanking/pulling/tipping – not much difference, right? ha!).  Even though she bit me, locking those strong jaws around my finger, it was WELL-worth-it to have at least ONE prized baby tooth from Lucy Belle. I truly believe the Father granted the tooth desire for this momma, and I’m so grateful.


Miss Bowen is GROWING and changing, with new sounds and giggles.  She’s still trying to perfect, “mama” at her tender age of FIVE months and has now added, “bubba”.  Bowen too, is trying her hand (err, body?) at independence, and is starting to “hop” JUST like Lucy Belle.  We have this little, tiny froggie who giggles and wrinkles her perfect little nose at us just “so”, and we melt. Just last night, she started reaching for us, which is HUGE for me and Mike, and makes us feel so “Wanted”, as silly and obvious as that sounds.  

Two Darling McLaughlin Girls –

One losing teeth, One whose teeth are 

just breaking through;

Both happy, hopping, 

and soon-to-be extremely independent!


The Boys . . .
Both Conner and Henry are REALLY enjoying Summer Break already!  The eldest enjoys reading and watching, “The Office” re-runs, and is learning to mow and care for the yard.  The youngest is learning to be more disciplined and organized and has made new friends close by, which means he’s always (and I mean, ALWAYS) wanting to jump on his bike to go visit those friends.  It’s a JOY to have little men in and out of our house constantly and even though there are sticky counters, half-empty cups of juice and milk all over the house and toys they trade with each other constantly, I wouldn’t trade it!  It’s something we’ve longed for with Henry – for him to have good friends, especially in the neighborhood, and God has given Him just that!  Now, if we can just get everyone to a pool – at the same time, with all of our gear . . . no small feat!
PRAISE!!!
Ya’ll, God has done something incredible for us and we are TRULY full of JOY!  Even though we need Him to provide and many details must both be worked out, we have a plan and steps to get there, which is HUGE – things we’ve never before had! 

You may know from previous posts that we have been working very hard on getting Henry into a PANDAS facility or into an international PANDAS specialist THIS SUMMER.  We’ve felt like this summer is a timeline God has given us – a time to “make it or break it” with Henry, so to speak.  We KNOW that God WILL do BIG THINGS for Henry this summer, especially.  We just haven’t known how and haven’t had any direction, even though we’ve desperately been searching for doctors, specialist, facilities, treatments, and more.  This week however, we received a call back from a PANDAS Specialist in Washington, D.C. – a specialist who also happens to be a neurologist!  The BEST news . . . she’s accepted Henry as a patient and she’s agreed to SEE HIM in her clinic on July 24th!!!!!  Can you even believe it?!  We are still in AWE and a little shocked, to be honest.  This well-known doctor, who is featured in the PANDAS documentary, My Kid’s Not Crazy . . . THIS doctor has agreed to see Henry, with the support and recommendation of ALL of Henry’s doctors here in Oklahoma!  We are ELATED and asking the Lord to work out the details.  THANK YOU, Lord, for YOUR faithfulness!!


So, there you have it!  Thus is the beginning of the McLaughlin’s Summer 2017, with a roller-coaster ride of loose teeth and teething babies, hopping babies and independent little girls, with blonde boys riding bikes and mowing lawns!  A family preparing for a trip to Washington, D.C. while also preparing to forever and always add a Precious Daughter to our Clan, one who fits perfectly and is already Beloved more than she could possibly imagine.  We thank you for going along for the ride, for sticking it out, for watching us rise and fall along the twists and turns.  YOU spur us on to keep going and we couldn’t be more grateful.


DON’T FORGET!  
ADOPTION GARAGE SALE TOMORROW,
Benefiting Baby Girl McLaughlin
SATURDAY, JUNE 3rd at 8am
Vintage Farms Neighborhood –
off of SW 134th Street, just East of South Pennsylvania Ave.
*Follow the NEON GARAGE SALE SIGNS,
Taking you to THE BIG SALE on SW 132nd Street!


Sale items include:
·        CLOTHING and SHOES - from Armani, Cabi, Talbots, Express, Limited, Banana Republic, Dillard’s brands, and MORE! 
·        SHOES – kids, women’s and men’s, all shapes, brands, seasons and sizes!
·        ANTIQUES – furniture, dishes, artwork, décor, and more!
·        PURSES and ACCESSORIES – Coach, Michael Kors, and MORE!
·        TOYS
·        HOME DÉCOR
·        And MORE!


Most items in the sale are in great condition; most clothes and shoes are new with tags or look brand new!


Hope to See You There!
Ryan

For other ways to contribute to the D.C. trip OR to Bowen’s Adoption, please contact us directly

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