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

Wednesday, May 17, 2017

A Difficult Update

I've started and stopped this post no less than ten times.  There is so much to say, so much difficult news to share, that it's hard to even know where to start and where to stop.  So, I'm not putting it off any longer and I'm diving in and posting this evening, for better or for worse.  Bear with me and hold tight as my heart is raw and open, and I plan on laying it all out on the table . . .

Life has been extremely difficult.  Dark, heavy, heated, strained - we've felt all of those things and more over the last few months in particular.  Depression has come and gone in me, in Mike and the kids as we've faced some harsh realities.

Lucy has been suffering greatly.  She's lost weight and her body isn't working the way it needs to, nor the way that it should.  Lucy is often in immense pain and is up most nights screaming out in both pain and fear, sometimes seizures are involved and sometimes they aren't.  This marked decline in Lucy's health has come on rapidly and has included a recent hospital stay as well as doctor and ER visits, and the usual battery of tests.  We know her bladder is retaining urine which is causing some pain and we know now too that Lucy has bladder spasms.  My heart hurts for her knowing she's dealing with these things, as I too face those same diagnoses and they are super painful and frustrating - and that's for me as a typical adult!  How much more frustrating and agonizing it must be to have waves of pain you cannot describe or even seek help for?!

Happy Lucy with her Easter Basket!

Pure, Innocent JOY!

Our Sweet Girl has missed so much school this semester because of the pain and because of her sleepless, scream-filled and restless nights. We've even taken a break from our outpatient therapies which Lucy has been a part of since leaving the NICU at one month of age.  It's all just too much for LuLu, at least for now.  While I know she misses her friends and activities, I find great peace and in knowing I can help her in this way, by alleviating stressors and avoiding foreseeable pain. I get to be Lucy's mommy by doing this, by providing for her needs in these ways. 

It's hard to believe, but Lucy will be SIX at the end of September and the knowledge that Ellie Kate was barely seven when she died, hits me often now, taking my breath away more times than I can count.  We didn't think Lucy would follow after or pattern Ellie Kate in progression, but it's been noted that she very well may be rapidly progressing and declining around the same timeline as her Big Sister.  What do we do with that information?  How do we parent that, live and love through that and do it all well?

Lord, help my heart and capture my thoughts!  

LuLu and Bowie, all dolled up for Easter 
(Check out Lucy's pretty necklace, which he is so proud of here in this photo)!  
Lucy LOVES her some Bowen Jane (most of the time) - 
look at this genuine smile of happiness and LOVE!  


Henry too is suffering, although PANDAS is oh-so-different than NKH.  His MRI showed no changes in the brain malformations and though we are quite grateful for that good news, almost everything is overshadowed by the fact that PANDAS wreaks havoc on every single part of our lives - ALL of our lives and not just Henry's.  The mental illness it brings on, the confusion, the extreme OCD, the imprisoning social anxieties, the stifling separation anxiety and more - it's all VERY hard, EXTREMELY hard, SO much harder than what we deal with daily for Lucy, and I mean that in all sincerity.  

There is no true formula to follow with this new disease and we are still struggling to get in with the right doctors and to make the connections needed to overcome and survive PANDAS.  We so desperately want to do more than just survive - we want everyone in our family to get to a healthy place on the other side of this.

Yes, Lord, we SO DESPERATELY WANT to get on the other side of this, 
IF there is another side, a winning side, the OVERCOMING side.  




Easter Sunday, 2017

 
It looks like we will soon go out of state for treatment for Henry and while we don't know exactly where to go, we have been given a short list of doctors and facilities to possibly visit.  This is something we are praying hard about and asking God to miraculously open doors for appointments and tests, and asking the Lord to provide for it all, someway, somehow.  We need the Lord to move mountains, Friends and I say that with everything that I am, completely being open and honest.  We can't have Henry continuing to live in the stressful way that he is living now and we refuse to allow that stressfulness to so detrimentally affect the rest of our household.  It WILL NOT WIN.  We need God to sweep in and literally and save the day for Henry and for us as his family!  We need Him to supernaturally move in the hearts of doctors on our behalf, promptting them to see Henry, prompting them to treat Henry, prompting them HELP our Henry.  Would you pray alongside us for these things mentioned above?  

Oh, My Friends, it isn't ALL "doom and gloom", although I'm sure it seems like it's that way with our family sometimes (I'm so sorry for that, by the way).  Here are some of the GOOD things God has reminded me of and recent signs of His faithfulness: 

  • Henry was seen by a new PANDAS Immunologist here in OKC recently and we are anxiously awaiting results from testing he had done with her.  We are grateful to have this opportunity here near home!  
  • The New Doc has suggested IVIG treatment, which was also suggested by Henry's other specialists, so we DO have an idea of where we need to go (the direction).  This is a big deal and we are grateful to at least now have a map to follow.
  • As of this week, Henry has officially finished his work with homebound services!  This is a HUGE accomplishment as daily work has been increasingly difficult to tackle.  But, Henry did it and is set to successfully go into the third grade!  YAY!
  • God brought us a new "Gatekeeper" in the form of a Nurse Practitioner at the Sooner Pediatric Clinic, and she is gladly taking on our entire family (which is a big deal since we are so complicated!) and is helping us get connected with proper resources for each child.  
  • Conner is wrapping up his 7th-grade year and I'm increasingly grateful for his NON-type-A personality!  
  • Bowen Jane is growing like a WEED and a growing baby is a true gift - one we surely won't take for granted!  
  • Mike's job is steady and he continues to love his work AND the people he works with - that is a gift we are grateful for!
  • Hope Link continues to grow with new moms and families all the time with two fundraisers taking place this month alone - fundraisers that God brought to us!  God continues to show us favor and is making Hope Link all HE wants it to be, which is what we want too! 
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More on Conner . . . 

Our laid-back, eldest son now wears his daddy's shoes and has grown FOUR sizes in pants this year alone (we are now in men sizes for everything, ya'll).  Conner easily picks me up now and tries to carry me around the house, which must be some rite-of-passage for young, teenage boys and their mommas and truthfully, I don't mind it one bit.  Conner loyally loves his friends and is looking forward to the end of school, although he already has several books picked out for "summer reads". This boy of ours is turning into a man, right before our eyes and we are so proud of the tender-hearted, gentle, thoughtful, and kind young man Conner is growing into.  He adores his little sisters and has especially fallen in love with Bowen, and I often find him carrying her around the house, cradeled in his arms, and I often hear the trailings of his hilarious musings with her, as he tells Bown all about the world and current events, in a cute, high-pitched voice that I am SURE he would HATE for me to record (I better record it soon bc it's so sweet!).  

Although I do often wonder where those first-born traits of competitiveness, perfectionism, organization, etc are within Conner Mac, I am increasingly grateful for Conner's lack of need for all of those things.  Conner is exactly who he needs to be, who God created him to be, perfectly equipped for this unpredictable, messy, wildlife we live.  


More on Bowen . . . 

This Little Love will be FIVE months old on May 23rd and I can hardly believe it!  Oh, how healing Bowen Jane has been and continues to be, for our hearts and for our home, Friends!  
I had no idea just what a gift God was giving us with this precious little girl of ours and I am absolutely sure there will be layers upon layers of blessings where This Gift is concerned and I have NO doubt we will be spending the rest of our lives enjoying her and watching the blessings and gifts continue to unfold right before us.  


Everything has fallen into place and we are just waiting for our final date before the judge, when Bowen's last name will change to ours, forever.  That day will come soon but we have a few things that must be done first, including paying everything off as far as the adoption is concerned.  Although we had hoped to already have this behind us, I've learned that not much in "adoption world" is black and white or follows a certain timeline or checklist, especially since we are doing the adoption privately.  We hope to make it official very soon as we SO LONG to have the "official" part of it all behind us once and for all, forever!  

Bowen Jane, Easter 2017

Our Sweet, JOYFUL Girl at 4months 


Oh, Father!  Thank you for this MOST Precious Gift of Bowen Jane, 
this little girl we never knew we would have, but who we very much have always wanted!  
You knew the longings of our heart, Lord.  
You heard the cries from our innermost beings - the broken hearts of a daddy and a momma - 
and you've decided to LOVE us and HEAL us by giving us another Daughter in Bowen!! 

You've surely blessed us beyond what we deserve, 
so far beyond what we could ever hope or dream, Lord. 
 It has nothing to do with us and has EVERYTHING to do with YOU, 
as it is YOU who made this plan with us, with Bow's biological mom, 
and with all of the other players in our story.  
You connected us out of the blue, in YOUR timing, God. 
 You did it in unexpected ways and have continued to 
fulfill your promises to me through Isaiah.  

We give YOU the glory for all that is Bowen Jane McLaughlin!  
Lord, you've given us this Baby Girl in your perfect timing and 
we ask that you would officially bring her into our family in your perfect timing.  
You have provided for this from even before it all started, God (only MY God could do that!), 
and we trust you as you stand in control of it all now as well.  

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A few last words to encourage your heart . . . 

Maybe you are like me and you've recently endured a season of depression.  
Maybe you still are IN that depression and the weight on your chest seems to grow heavier every day.  God sees you and He sees the burdens too.  He knows they are too heavy for you to carry, so He asks that you lay them down and stop trying to carrying them on your own.  You CAN stop trying to do it all on your own. That's actually, exactly where He wants you to be - at the end of yourself.  Cry out to Him from that spot, Friend.  He is always open to you, always listening, always loving.  

Answer me quickly, O Lord! My spirit fails! Hide not your face from me, lest I be like those who go down to the pit. Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I lift up my soul.


Maybe you've found yourself hardened, maybe even bitter - 
bitter towards the broken world around you or even bitterness toward your friends, family or God.  
In this world of great heartache and brokenness, it's so easy to compare ourselves and our possessions;  it's so easy to get caught up in the trappings of this world which are already fading away.  Surely, our hearts can be hardened to stone over bitterness, jealousy, envy, strife, and anger. Allow your heart to be palpable by God, just like clay in the hands of The Ultimate Artist.  A soft heart is a beautiful, beating heart; a heart that desperately depends upon God for . . . everything.  

May this be our prayer, that God would place within us a new, tender heart that beats for Him - 

"And I will give you a new heart, and I will put a new spirit in you. I will take out your stony, stubborn heart and give you a tender, responsive heart". 
Ezekiel 36:26 NLT

Dependence upon God is a BEAUTIFUL, glorious, thing! 
Allow yourself to surrender to the Father, asking Him to soften your heart and breath newness in you! Ask Him to drive out the bitterness and hardness of heart and He WILL replace it with something soft, workable and tender.   He WILL do it because He loves us more than we could possibly imagine - He loves us too much to allow us to grow stagnent and hard.  He longs for a living, breathing relationship with us, one of great dependence on our part because when we are less, HE is MORE.  


Ellie Kate's Spot
Easter 2017




Maybe you are like our family, and you've been called to leave the unfamiliar.  
We've recently found ourselves without an official "church home".  
For us, God has clearly shown that our Church Family needs to be closer to our actual home, although we've struggled with this and truly put off the Lord's leading for a few years now.  It isn't a fun (or even pleasant) place to be, searching for God's best for your family, especially when you are leaving a home (church home, physical home, actual city, state, etc) which you have dearly loved.  


If this is you, please know that all of your fears and feelings are normal and God understands them because He is the one who created feelings in the first place!  You know what, though?  You and I do not need to live in fear or allow our minds and hearts to stay there, even if you are being called to live in an unknown place (whatever that 'unknown' might be for you or for your family).  As Believers, we can rest in knowing that God WILL cause All things (even the uncomfortable, even fear, even the unknown) and He will, without a doubt, use it all for His glory.  Not only that, He will use all of those things for YOUR good as well! 
 God has your best interest at heart and you can trust Him.  

1 Peter 5:7Living Bible (TLB)

Let him have all your worries and cares, for he is always thinking about you and watching everything that concerns you.



Maybe you are so broken and are so tired of heartache, sickness, trouble, and trials which seem to be never-ending.  
Oh, I can so relate!  
May it ease your pain and lift your spirit to know that you are in good company, Friend.  
Throughout Scripture, those nearest to the Heart of God, are often subjected to terrible loss of all kinds, including unimaginable heartache, pain, sickness, torture, and more.  
Think about the faithful men of the Old Testament - Moses, Abraham, Job, David
ALL of these men walked with the Lord.  
He knew their hearts and they had personal relationships with God. 
 David is even called, "A man after God's own heart", 
and He is arguably one of the most blatantly sinful God-lovers there was.  
Yes, there were great victories in the name of Jehovah, but there were great losses, great misunderstandings, great heartaches, great pains, sicknesses, and more. 

Look on to the New Testament and we see the Disciples continuing the Ministry of Jesus after He ascended to heaven to sit at the right Hand of God - these precious followers lost all they had.  They had to leave all they had, in many cases, for the sake of the Gospel and in order for the Good News of Christ to be shared around the world.  There were imprisonments, beatings, and tortures; they fell ill just like any other regular human being would in those days.  Many lived destitute according to the world's standards and many died imprisoned, even dying a martyr's death because of their allegiance to God, Son, and Holy Spirit.  

Recognize your fragile state and bring it before the Lord.  You don't have to live in that place forever.  Ask Him to help make you obedient - ask Him to show you how to choose to better obey Him, and I promise you that He will do just that and MORE.  
  • God is the ONLY true freedom and He alone is our answer to all problems and heartaches
  • It won't always be perfect - if it were, then we wouldn't need God.  
  • God has so graciously created us to need Him quite desperately, and desperately needing God, crying out to Him like a child who needs their daddy, is the best place a Christian can be.  
  • Surrender may not change your circumstances, but it WILL change your heart - I know that first hand!
  • You will be so impressed with the results of your surrendering, so freed by what He does, that you will wonder why you ever held tight to things in the first place
YOU ARE NOT ALONE IN YOUR SUFFERING, Friend.  THERE IS A PURPOSE FOR IT ALL, of that I am sure.  Trust God.  Surrender it all to Him.  Choose to obey and ask Him to give you a heart of obedience.  He will do all of these things and more, because of His great love for you!


In His Hope, 

Ryan

Thursday, May 4, 2017

Heartcry - I Don't Have It Figured Out

Literally, I have started and stopped this blog about ten times  So much to update you on since my last, long-ago post and so much share from what God is teaching me, and though it's the heartache part of it all which I don't want to bog you down with, I know in my heart I need to share where we are in a short, simple way (at least to the best of my ability).  It needs to be said and read and heard because WE are not the only ones going through such difficult, hard to understand things.  So, WARNING:  this will be an honest and brutal pen; a raw, post, to say the least.  I hope you can bear with me . . .

I wish I could tell you that we had it all figured out - for Lucy, for Henry, for the finalization of Bowen's adoption, but I can't.  We are struggling, more than ever before, and there are many feelings which have risen up with that that and really, I don't understand.
  • WHY, after 11yrs within the special needs and medically fragile community, has it not changed?  WHY doesn't it get better?  WHY does it continue to get worse?  
  • WHAT can we do to make things better for our family - to start new and fresh?  
  • WHAT's the next move for Henry's treatment and how the heck do we get there?  
  • HOW do we comfort and treat Lucy Belle?  
  • HOWdo we continue to love Our Conner Michael well?  
  • HOW do we survive this as a family because it's getting harder and harder to do.  
There are even more complicated questions too, such as have we not heard from nor seen dear friends, those we've walked through fire with, because they are tired of us?  Do once former friends and mentors now heavily sigh when they hear of our struggles because of the length of it all?  Is it "too much" to be our friends or to walk alongside us (I most certainly could understand)?  Do they question the decisions we've made or what we say on social media?  Is that the cause of the silence and what seems like abandonment in many ways?  

And, where is God in all of this?  

We have NO idea why things have AND haven't changed, despite our best efforts, despite our faith, despite our outcries, despite our research.  Why do things seem to get worse for Lucy and especially, why do they get worse for Henry when he is the child God so sweetly promised to me?  

We are desperate for God to start us fresh and new and we want big-time details and directions which can only come from God,  Will you heal us?  Will you start us fresh in every way?

Father, what's stopping us from moving forward to something BETTER or EVEN just something as easily as hard?  Different.  Just something different - something we are all longing for.   And really, Lord, WHY can't we get there - to that brand new start?  It doesn't have to be perfect; this life is so heavy and we need a break and to see YOUR face!  
The gift of relief, of joy, happiness, newness, renewal, provision and more . . . Lord, why not us?  Even Job was given a new start as well as King David, and though we are far from their level, couldn't we also be given the slightest of clean starts with our home, environment, treatment and more?  
Isn't 11 years enough?

I've related so much to Job recently (and have learned a ton from his story as well - hopefully, to post soon), and I'm infinitely grateful to know that my FAITH has NOTHING to do with the circumstances I am in nor the evils which come my way.  

Job 7:11English Standard Version (ESV)
11 Therefore I will not restrain my mouth;

I actually like the “realness” of The Message version even better . . .

Job 7:11The Message (MSG)
11And so I’m not keeping one bit of this quiet"

When I say, ‘My bed will comfort me,
    my couch will ease my complaint,’
14 then you scare me with dreams
    and terrify me with visions,
15 so that I would choose strangling
    and death rather than my bones.
16 loathe my life; I would not live forever.
    Leave me alone, for my days are a breath.
17 What is man, that you make so much of him,
    and that you set your heart on him,
18 visit him every morning
    and test him every moment?
19 How long will you not look away from me,
    nor leave me alone till I swallow my spit?
20 If I sin, what do I do to you, you watcher of mankind?
    Why have you made me your mark?
    Why have I become a burden to you?


Job too, the man of God that he was
also lamented, and did so in very outward, public ways.  
This is why I no longer cringe at the thought of sharing the heartache of a special-needs or medically-fragile life.  

If a man whom God deemed to be faithful and righteous can lament over the losses suffered likely over several months, then why can't I lament as well?


I'm having to choose, admittedly many times not-so-willingly
to do the following . . . 
  • Trust God as we start palliative care for Lucy Belle and seek help in her treatment
  • Trust God as we seek out of state PANDAS help for Henry
  • Trust God for provision of that help for Henry
  • Trust God to keep Conner safe and secure, living the most "normal" life as possible
  • Trust God to heal our family from the many heartaches we've faced
  • Trust God to bring respite and relief; a new start - a desire He's placed in the hearts of us all.  


Job 19:28 ESV

Job’s words . . .
Behold, I cry out, ‘Violence!’ but I am not answered;
But even in ALL of these things, Job ends this chapter like THIS:
For I know that my Redeemer lives,

Job knew that His Helper, the One in Control of ALL THINGSwas indeed in control, despite the circumstances and despite how he may have felt at the time.  
He knows too that in the end, once this earthly suffering DOES indeed end
and on the day of that suffering-ending,
Job’s eyes would then behold the ONE –
THE One He had dedicated His life to and all that He had.

Father, may I get to the place where Job was.  May we make it through as Job did.  May you restore us and redeem to us all that was lost, just like Job. 
 You alone are our only hope.  







  

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