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.  

Psalm 143:7-8 

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)7 

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

Isaiah 43:1-43