To The Rescue

Have you ever cried out for help?  I mean, have you felt the searing need to be rescued from someone or something?  Maybe you were lost, caught in a life or death circumstance; maybe you've needed "rescuing" on something as trivial as a chemistry final or help in your flower beds. No matter how smart, how strong, how wealthy you might be - no matter how many accolades you've received, how many rewards you've won or how well you work a room. . . 

At some time in your life, you'll find yourself in a true place of desperation, depression or oppression - in a pit, where something is taking everything away from who you are, what you have or from who you want to be.  I'm not talking about a trivial kind of need, but rather one where you are so desperate, you can't catch your breath, or can barely see beyond the horrific sights which lie before you.  

Psalm 6:1-4

Be gracious to me, O Lord, for I am languishing

heal me, O Lord, for my bones are troubled.

My soul also greatly troubled.

But you, O Lord - how long?

Turn, O Lord, deliver my life;

save me for the sake of your steadfast love.

It's a GOOD place to be, needing help and rescue from those outside of yourself.  We need each other, as friends, as strangers, as humans.  Being "needy" makes one vulnerable, which is a most beautiful place to be.  As a Believer, being vulnerable is important because we are called to live in a vulnerable stance; we are called to give our lives away to God and to others.  We're called to humble ourselves, first at Salvation and then continuously, giving our lives to God for HIS glory, HIS plans, HIS purpose, and not our own. 

Just imagine with me, for a moment- 

What happens when it's YOU who's in need of help and rescue?  

What happens when it's your family, in a constant state of need? 

What if the oppression, loss, heartache, physical pain literally won't. ever. stop?

Even when you are living a "good" life or, as the Bible tells us, an "obedient" life, surrendered to the Lord, you'll find yourself there, in need of rescue.  Even when we consistently lay ourselves before Him, asking for HE alone to be glorified - EVEN THEN, heartache, loss, sickness, desperation, depression, death, and oppression of all shapes and sizes will, at some point, show up in your life. God promises it, and I can tell you from experience, it's a lonely, isolating, exhausting place to be. 

How often my breath is taken away, weak in energy and faith, 
My Spirit just a whisper, where there used to be a strong and healthy cry, and so I will continuously say,
"God, I believe; help my unbelief".  

Mark 9:24
Immediately after, the father of the child cried out, 
"I believe! Help my unbelief!"

Think back with me now, to the most desperate time in your own life, when YOU were the most vulnerable and the most in need, as in flat- on-your-face, crying out, with moans too deep for words, sick-at your-stomach, kind of need. Remember, for a moment, those feelings, those thoughts, that agony you likely felt, the desperation in your heart and soul. . . 

Now, think of a time when someone swept in and rescued YOU, comforted you or provided, even in at your most needy state; your very lowest point.  How did it feel, knowing someone cared enough to notice where you might be emotionally, or cared enough to hear your cries of brokenness? Someone saw the horridity of the heartbreak and mess you were in, yet dove into the flames to rescue you, with no thought of themselves! 

It happened - you were saved! 

It wasn't Wonder Woman or Superman who've come to your rescue, but a regular human being.  Maybe your Rescuer was  spurred-on by the Holy Spirit.  Maybe "life-saving" is physically in their job description. Maybe they just have a heart for others.  Bottom line - SOMEONE came to your rescue.  SOMEONE stepped up and helped.  SOMEONE decided to give to you, to love you, even in the darkest of times.  

Right at this moment, there is someone in a dire situation; 

They need YOU to rescue them.  

There's a call on your life to be a, "Rescuer", a helper, someone who brings life back to another human being.  

It's YOU, Friend. 

You are the One - the one to step up and step in; the one to bring life with encouraging words, a purposeful gift, a listening ear; 
the one to bless financially, 
The one to offer physical labor or sacrifice.  

IT IS YOU. 

Your giftings, your background, 
your current position or place, 
have prepared you to RESCUE, 
at this very moment in time. 

Don't hesitate.  Don't miss out on an opportunity to feel the freedom which comes from recklessly giving of yourself.  Don't miss out on something you were created to do.  Don't let fear, distance, or awkwardness, stop you.  Just jump in.  You may bring light to someone's deep darkness.  You could be freeing someone from ruin.  Be a vessel for something good. 

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Thank you for your continued prayers for our family!  There are so many things coming up, including Lucy's 8th birthday, Conner's 16th birthday and the NKH International Conference and fundraiser, located in Boston, MA.  In the coming days, I hope to update on all of these things and more.

Right now, we covet your prayers for our Nurse E, from Cameroon, Africa.  Their country is at war and violence is very common, especially for those who have family in the United States.  Nurse E's sister was kidnapped a few days ago, and although they've recieved a ransom request, the details have still not been worked out.  

Also, a precious family prepares to say their, "earthly" goodbyes to the daughter, wife, mother, friend, sister, and (recent) grandmother. This family has been hit with cancer THREE TIMES; they've all lived through the first two fights and now, C's fight has become overwhelmingly strong.  Her physical presence with her family will soon be at an end.  Pray for PEACE and COMFORT. 

Jesus, we take so much for granted.  The world is hurting.  Our people, our friends, hurt even now.  You continually equip us to RESCUE the people you place in our paths!  There is NO hope without you, Lord.  May my life bring your HOPE to those around me.  All belongs to you; nothing belongs to me. 


Ryan

    

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glish Standard Version
Immediately the father of the child cried out and said, “I believe; help my unbelief!”

King James Bible
Return, O LORD, deliver my soul: oh save me for thy mercies' sake.
Darby Bible Translation
Return, Jehovah, free my soul; save me for thy loving-kindness' sake.
World English Bible
Return, Yahweh. Deliver my soul, and save me for your loving kindness' sake.
Young's Literal Translation
Turn back, O Jehovah, draw out my soul, Save me for Thy kindness' sake.

Morning Has Broken!

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

 

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

"Morning has broken like the first morning

Blackbird has spoken like the first bird

Praise for the singing

Praise for the morning

Praise for them springing fresh from the world" 

- Cat Stevens 

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

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

 

 

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

Romans 8:25-27

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

 

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

 

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

 

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

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

he will exult over you with loud singing".

Zephaniah 3:17

 

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

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

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

Jeremiah 29:11 (ESV)

 

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

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

I know what I’m doing. 

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

plans to give you the future you hope for.

Jeremiah 29:11 (MSG)

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

 

I Surrender, 

Ryan

 

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

BIG grin from Henry - looking up to Big Bub

 

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

Look at the smiles on those faces!

 

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

Joyous Bowen!

 

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

Happy Day at the Park!

 

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

 

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

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

Lucy - Health Update

My Precious Lucy-Girl.  I haven’t posted or shared much about Sweet LuLu in a while.  We just got home from a long afternoon/evening in the ER and we have some big changes coming up where Lucy’s health is concerned.  It’s been so long since I’ve shared about Our Sissy, I felt it was it was time.  Lucy needs the prayers and I need to rise above my fear and shame. 

The fall seemed consumed with getting Henry’s IVIG treatment, which miraculously took place right before Thanksgiving.  Then came December, Ellie’s Month of Reckless Love, and we were focused on Ellie Kate’s memory as well as spreading Reckless Love in her name.  We are humbly grateful for everyone’s support and participation during these months!  I’ve hesitated going into details about Lucy while so many of you have supported and loved us in other ways (again, with the shame and fear). 

FEAR: Laying it all out there – sometimes I feel like “the person who complains all the time” or, “the one who always needs something”.  When I share pictures of Ellie Kate or Lucy, I can feel like others may think, “Here come more pics of the little dead girl, again!” or, “If I see ONE more picture of a sick little girl . . .”.   I NEVER want to be a “Debbie Downer”, ya’ll.  It crushes me to even think that could be a possibility.  It’s a fine line, wanting to share our special journey with others, while not coming across the wrong way.  It makes me sick to think of being seen in that light, especially because I feel called to share.  

With all that I am, I feel the world (The Church, in particularly) needs to know how to better love and serve those with special needs, those who are medically-fragile and those who’ve lost children because of those things.  I must continue to share, swallowing my pride where this is concerned.  I am choosing NOT to let fear control me from sharing the not-so-pretty things about life. 

LUCY: From the beginning, Lucy has struggled with bladder issues and has suffered from frequent Urinary Tract Infections.  Those UTI’s have increased over the last few years and in 2018, Lucy had approximately 8-10 UTI’s.  After extensive testing, we know what causes the infections in Lucy – she retains her urine.  We aren’t sure if Lucy “holds” her urine on purpose or if her brain simply doesn’t give her bladder the right signals, preventing her from urinating at appropriate times.  At this point, Lucy’s having back to back infections.

Big Girl, holding one of her Christmas gifts this year!

INFECTIONS: Last Summer, Lucy suffered from a few UTI’s as well as from C-diff, an infection of the intestines.  In Lucy’s case, this infection was caused by the frequent use of antibiotics, trying to treat her UTI’s.  C-Diff isn’t something you want to have – it can be incredibly dangerous, deadly, and the more time one spends on antibiotics, the more chance one has of getting c-diff.

In the fall, doctors brought up the possibility of using a urinary catheter on Lucy, here at home.  We are NOT afraid to use a catheter on Lucy here at home, but the reality of it all seemed impossible.  She is our, “Wild Cat” and much like her Big Sister, likes to bite, kick, scream, hit, bang, pull, and anything else she can do, to stop others from holding her down for any type of procedure, especially for catheterization. 

PAIN: The infections are incredibly and understandably very painful for Lucy.  She cannot sleep well because of the pain and bladder spasms, even with medication and treatment.  She can’t get comfortable during the day time, often crying hysterically when she urinates.  It’s absolutely heartbreaking because Lucy doesn’t at all understand what’s going on with her body.  No matter how I explain it or what I might say, she cannot be comforted by the meaning of my words because she mentally cannot make sense of it all.  Lucy just knows she hurts; badly, excruciatingly at times. 

 

SOLUTIONS?: Lucy’s been running a high fever, and any type of fever is rare for her.  With the fever showing up last night, I knew something was brewing and figured it must be another UTI (we finished antibiotic treatment for the last infection just two weeks ago).   Other symptoms popped up so, after a call to her pediatrician, we decided to go ahead and take Lucy to the ER.  Per usual, they were great and got us right in, taking cultures, giving fluids and running a general antibiotic.  Sure enough, Lucy has another UTI.  No wonder she’s just miserable, bless her heart. 

We’re now faced with one probable solution: a suprapubiccatheter.  It’s something new.  It’s something surgical.  It’s something that will be an ongoing surgical commitment.  We have no experience with this whatsoever, unlike most things we’ve dealt with up until now.  BUT, we are ready and willing to learn, especially for Lucy’s benefit.  I will keep you posted on Lucy’s health and I hope to do so more often than I have been, pushing myself beyond fear. 

Daddy Snuggles on Christmas Break

PRAISE:  I am SO grateful to be able to post about Lucy in this way, to have the privilege of asking for prayers for her body and mind!  Last winter, especially was excrutiatingly difficult for Lucy as she continued to waste away, despite our best efforts.  Her body started failing and we had prepared our hearts, especially around Christmas-time.  God has SPARED our Daughter, and we give HIM alone the glory for this!  While Lucy is still far behind in weight, she has more good times than bad, the total opposite of last year at this same time. 

THE SUM:  Tonight, in the ER and now at home, I’m reminded of how precious and fleeting life truly is.  Yes, this same message is shared so often, almost everywhere we look.  HOWEVER, I encourage you to truly, STOP and take a moment to think about it.  We get frustrated and flustered, caught up in the activities of life and what we feel are urgencies, making us worry, fret, lose sleep, and lose happiness in this life.  This life is ONLY about loving God and loving others; those are the only things which are eternal - everything else .  .  . EVERYTHING ELSE will melt away, falling to the wayside, for us to never think of again.  

Whenever you have the chance (and I mean really, whenever!) reach out and give a gentle touch, give an encouraging word, give a hug; share, “I love you”, or give “pat-pats”, like EK and Lucy do to those they like.  It can be over in a moment.  It can change, drastically.  ONE MOMENT.  OVER.  DONE.  FOREVER. And all that you’ve done will be IT – the sum of your life.  Are you satisfied with that sum right now, at this very moment?  You have the power to change it.  Trust me, you won’t EVER regret showing Reckless Love. 

Ryan

A Thrill of Hope!

There have been some difficulties with my blog over the last two months; for some reason, only those who subscribe to it are able to actually see it in it's entirety.  I sincerely apologize for this and want you to know, I am working to find a remedy.  For now, I will keep blogging and sharing the link to the blog.  You can, "follow" me officially on Blogger.com and receive the updates directly in your inbox.  I will also cut and paste each post to my Facebook account, in hopes others will be able to see it there.  You've so faithfully loved and followed us since December 2005, and we want that to continue for as long as the Lord sees fit.  
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Gorgeous views on Bowen's Birthday, reminding me of Ellie in Heaven!

The Holiday Season is coming to an end.  Twinkling lights, vibrant colors and stunning Christmas carols surrounding us as we are out and about, are all being put away.  It makes me sad.  I want to hold on to this Season just a bit longer.   It's Ellie Kate's Season, the time of her birth and her death, and all of the lights, colors and music remind me of my Precious Daughter.  I miss her.  I miss everything about her.  


It's been six years since Ellie Kate took her last breath on earth - writing that even brings a heaviness to my chest.  Some would think I would be much more "over it" by now, but I assure you, I will never be "over" my Daughter's earthly death.  I will always miss the sound of her voice, although she did not speak.  I will always miss the way she entered a room, although she did not walk.  I will always miss the way she miraculously breastfed as a baby, then ate by mouth for a year before needing a feeding tube; to this day, it is difficult to set and gather around our dinner table because the obviousness that Ellie isn't there.  In our Family, someone is always missing.  

“If a mother is mourning not for what she has lost but for what her dead child has lost, it is a comfort to believe that the child has not lost the end for which it was created. And it is a comfort to believe that she herself, in losing her chief or only natural happiness, has not lost a greater thing, that she may still hope to "glorify God and enjoy Him forever." A comfort to the God-aimed, eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.” 
― C.S. Lewis, A Grief Observed

I've come to see the last six years very much as I see the Advent song, "Oh Come, Oh Come, Emmanuel" (which has been my very favorite Christmas song for as long as I can remember).  I feel the longing in the lyrics. The melodies groan within me as a people groan for freedom and redemption.  I see myself as a Hebrew, waiting for God to deliver me from Egypt. I see myself as a Hebrew, waiting for God to deliver me from the Wilderness.  I see myself as a Hebrew, waiting for God to bring my Savior.  My Savior HAS come to Earth and I relish in that incredible, undeserving Gift.  I've accepted His gift of Eternal Life and yet as Believers, we still call upon Emmanuel - we still long for Him to move in our lives.  For me personally, I've longed for Him to move us out of certain Seasons (seasons of death, seasons of constant need, seasons of fear, etc).  I've been in this waiting period for a very long time.  In fact, I vividly remember singing this song when Ellie was first on the ventilator, just a few days old.  It's a desperate cry to the Almighty and I know that cry very well.  

“Knock and it shall be opened.' But does knocking mean hammering and kicking the door like a maniac?” 
― C.S. Lewis, A Grief Observed

“For in grief nothing "stays put." One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral?
But if a spiral, am I going up or down it?
How often -- will it be for always? -- how often will the vast emptiness astonish me like a complete novelty and make me say, "I never realized my loss till this moment"? The same leg is cut off time after time.” 
― C.S. Lewis, A Grief Observed

This year, for some reason, God has changed my heart-song for this season.  I'm in awe of this change really, and wondered what God might be doing by changing my heart, moving it on from, "Oh Come, Oh Come, Emmanuel" to, "Oh Holy Night".  A Dear Friend of mine has also been moved by this glorious hymn over Christmas, although the Lord has used in to move us both in very different, beautiful ways.  He's good and creative like that.  

 "A Thrill of Hope . . . " these are the words which God has sweetly placed in my Soul this Season and as we begin 2019.  I jump in excitedly, EXPECTANTLY, now not only for my Emmanuel to come, to step in, to deliver and make things right - but because I am HOPEFUL and thrilled for all God WILL DO through our weary hearts, minds and bodies.  

"A thrill of hope the weary world rejoices,

For yonder breaks a new and glorious morn;

Chorus

Fall on your knees, Oh hear the angel voices!

O night divine! O night when Christ was born.

O night, O holy night, O night divine". . . 

HOPE - for what is to come, because of what has been. 

A GLORIOUS new dawn is seen on the horizon.

The Divine Movement of Father, Son and Spirit 

is worth falling on our knees for!

HOPE.  I speak of it often, mostly in reference to Hope Link.  What does it mean to me today, in this Season, in the now?  HOPE - to me, for this New Year, it means NEW LIFE, goodness, joy; the thick, loving and happy presence of God.  HOPE means GOD is moving me (us) on, moving forward, out of the marsh and muck and onto solid ground.  I see it as a season of safety and light. Merriam Webster definition of HOPE

Job 8:11-13 (NLB), "those who forget God have no hope. They are like rushes without any mire to grow in; or grass without water to keep it alive. Suddenly it begins to wither, even before it is cut".

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Seeing this Christmas Season through, "A Thrill of Hope has been fragile, but sweet.  Sometimes, it's hard to let yourself "hope"; I'm sure many of you know what I am talking about.  This Christmas, as in the last six, I've clung to Jesus like my toddler clings to her daddy when she's really scared, crying-out for him, even in her sleep.  He IS faithful.  He IS true.  HE is the ONLY way I make it through this life of unexpected things, and HE wants to be there with you, too.  

Jesus is God's gift to us, fully-God and fully-Man, He lived in human form, experiencing everything we do - hunger, thirst, anger, fear; He longed for friends on earth and called out to His own Father, clinging to Him when He needed Divine wisdom and help.  He lived a perfect life, for you and for me.  He gave His life, for you and for me. He died a criminal's death, a horrific death and torture, then was buried, as a human.  His earthly body died.  God the Father breathed new life into Jesus, and He came alive again, proving forever and always that God Our Father has POWER over DEATH!  

Romans 1:17 Living Bible (TLB)

17 This Good News tells us that God makes us ready for heaven—makes us right in God’s sight—when we put our faith and trust in Christ to save us. This is accomplished from start to finish by faith.[a] As the Scripture says it, “The man who finds life will find it through trusting God.”*

Precious Friend,  I want you to know about this New Life offered through Jesus Christ - Abundant Life here on earth and Eternal Life after death!  Your life can count for eternity.  When you accept Him as Savior, He promises to never leave you nor forsake you.  You will NEVER be alone, on your own.  He doesn't promise a life without problems, without loss, but He DOES promise to be with you, every step of the way.  I personally couldn't possibly get through one day of NKH, one day of PANDAS, one day of child-loss without having Jesus Christ to carry my burden.   Because of Him, I have HOPE.  He placed Hope within me, an expectant joy for how He will move in and through me.  And, because of my personal relationship with Christ, I have the assurance that I will be with Ellie Kate for eternity!  I want you to have that assurance, especially going into the New Year.  You can start 2019 off being REDEEMED, renewed and restored - there are no magic words or prayers to pray; just share your heart and give Him your everything.  



With a Thrill of Hope,
Ryan

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Oh, Father!  I am yours. Everything I have, everything I love, I lay before you.  I give you all of my dreams, my desires, my wants.  I give you my thoughts and longings, my fears and failures.  Truly, I am nothing without you.  

YOU, Emmanuel, the Great I AM, God With Us.  YOU are EVERYTHING, you've created all things for your glory and for some reason, you were thinking of us when you created it all!  For OUR good and for YOUR glory - why are you so overwhelmingly generous?!?   I am so unworthy of the blessings and redemption you've bestowed. 

You have rescued me from the Valley of the Shadow of Death.  You continue to rescue and relieve me from despair.  You carry my burden and provide for my needs, above and beyond what I could ever hope or imagine!  

THANK YOU for giving me a new song, literally.  A THRILL OF HOPE - I am entering this New Year with thrill and excitement, knowing you are with me; you light my path.  Oh, Father!  I need you for every breath, every thought, every decision.  

I choose to put my trust and hope in you, Creator of All Things, the Protector of my Soul.  Everything I have is yours - my marriage, my children, my talents, my gifts, my earthly possessions; use it for your glory in 2019, Blessed Lord.  I lay it at your feet.  

Ellie Kate's Month of Reckless Love!

Last Tuesday, Ellie Kate would have turned 13 years old but in our hearts, she will forever be SEVEN - the perfect number, the number of Completion, the number of God.  We are so grateful for the precious seven years we had with our curly-headed daughter; it's through Ellie's life that God gave us a mission as a family, as a couple and as individuals!  I never thought I would be called to the world of special needs/medical-fragility but I was, all because of MY Daughter. 

Through Ellie Kate, I have learned more about love than I ever thought possible.  Real, true, perfect LOVE - RECKLESS LOVE, a love which surpasses understanding and goes beyond rules or limits we so often set.  This Reckless Love calls us to serve, to be and to DO - even when it's least expected, ESPECIALLY when it's least expected - going out of our comfort zones, choosing to give of ourselves, no matter what the cost.  THIS is how God loves US.  THIS is how we are called to love one another, above and beyond, giving all we have, going outside our conveniences, even laying down our lives for others. 

It is with this thought, God led us to create, "Ellie Kate's Month of Reckless Love", which spans the month of December.  Ellie was born on December 4, 2005 and met Jesus face-to-face, December 23, 2012.   Although sometimes bittersweet, we choose to CELEBRATE the entire month of December by honoring our Ellie Kate with acts of Reckless Love towards the community around us.  In the past, we have hosted parties at OU Children's, collected books and gifts for that hospital so close to our hearts; we've also adopted families for Christmas and we've invited you to do the very same, joining us, every step of the way. 

Ellie Kate's Month of Reckless Love 2018 . . .

#EKMonthofRecklessLove

#EKspreadthelove

SHARE THE LOVE/LOGO/MESSAGE

• We invite you to change your FB profile page to Ellie Kate's logo, spreading the word about Reckless Love, bringing opportunities to share about Our Girl. 
• During now and December 23 (Ellie's Heaven Day), Recklessly love those around you by mowing a law, bringing a meal, dropping off a gift card, and more!  
• Share a picture of your expressions of Reckless Love, even printing off the logo to share along with your acts of Reckless Love! 

*CHRISTMAS CARE BASKETS  We invite you to come alongside OKC Hope Link, donating Christmas care-baskets, elaborately and specifically made for eight, chosen families with our Hope Link Communities.  These are families hit with the unimaginable - a child with a rare, serious or undiagnosed disorder.  Some are born with their diseases and some are diagnosed after horrible accidents.  Precious families, like those within this group, are too often forgotten by the world and by the Church as a whole.  They are isolated because of disability and overlooked because of financial, emotional and mental stressors which come along with raising an extra-special child. 
Christmas Care Baskets are to be delivered BEFORE December 20th, just in time for Christmas (we will happily deliver in your name)! 

• Adopt a basket individually OR as a book club, Sunday School Class, Life Group, etc. 
• You can donate individual items for our Christmas baskets, contacting me for clarification on gifts.  
• Baskets can be themed, such as, "A Night at the Movies" or "Christmas Love" and include the essentials for a special night. 
• We hope to include gift cards for meals, gas and groceries with each Christmas basket, as well as practical and fun gifts for those of all ages.
• If you'd like to take part, contact me via messenger or email: tullyryan@hotmail.com

The perfect example of a Christmas Basket for a special-needs family!

"ELLIE KATE'S WISHES" with NKH Crusaders
Every December, NKH families from all over the world are encouraged to apply for an, "Ellie Kate Wish".  The wishes consist of things insurance won't cover, important items the child/family needs.  This special program was started by my Dear Friend, Kristin Archibald who founded NKH Crusaders, the main fundraising foundation within (and without) our NKH Community (Non-Ketotic Hyperglycinemia).  We are so grateful to have Ellie Kate honored in this way and feel so loved, knowing other members of our NKH Family are blessed because of her life!

Two Precious, past Recipients of Ellie Kate's Wishes through NKH Crusaders!

 GRANT an ,"Ellie Kate Wish"!!  Ellie Kate's Wish through NKH Crusaders

THANK YOU for loving us by participating in

Ellie Kate's Month of Reckless Love 2018. 

You will never know, this side of Heaven,

how much it means for you to share Ellie's story,

to say her name and most importantly,

to help us spread that beautiful,

Reckless Love we continue to learn,

because of her life. 

With Hope, Love and Gratefulness -

Ryan



*OKC Hope Link reaches families whose children suffer from rare, serious and undiagnosed disorders of all kinds.  We also serve families who have lost children to those same issues.  Hope Link is a tight-knit family. We cheer each other on during the hard times and hold one another's hands during the dark days.  We are different in diagnoses but our journeys are very much the same.