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.

Ellie Kate's Helping Hands - Auction Fundraiser for Fellow NKH Families

The International NKH Medical Conference is coming up this October and we need your help!

Once again, this event will take place in Boston with portions being held at Boston Children's Hospital. Leading experts from around the United States will be in attendance, speaking to parents and caregivers, giving the latest details in treatment and the latest updates in the research.  The Grand Finale of the Conference happens Friday, October 14th, when we gather together for the big NKH Crusaders Fundraiser.

NKH Crusaders was started by my Dear Friend, Kristin Archibald, whose son Thomas has NKH. Since NKH is so rare, and since there are so few individuals affected by it, research is scarce.   Denver Children's and Notre Dame are now partnering and researching together, finding better treatment and maybe one day, they will find a cure for this terrible, terminal disorder.  The main funds for these researchers are fueled by those raised OUTSIDE of their programs, such as those raised by NKH Crusaders.  It can easily be said that research is still being conducted solely because of the efforts of NKH Crusaders and the financial support and efforts of the families affected.  It's a big deal and something we very much support!  If you want to donate to NKH research, you donate to NKH Crusaders, so you can imagine just how important this fundraiser is to ALL of us within the NKH Community.  

Shortly after Ellie Kate's death, a special fund through NKH Crusaders was created in her name.  

The "Ellie Kate Helping Hands Fund" serves our fellow NKH families from around the world.  It is the only fund of it's kind - the only one named after an NKH child, and ohmygoodness, friends - we are beyond proud and are insanely grateful that other NKH kids can receive Ellie Kate's "reckless love" through this special fund! 

"Ellie Kate's Helping Hands" allows families to apply for financial help, which assists with things such as medical equipment and other special items or services that the family isn't able to obtain on their own.  The money for this special fund will be raised this year at the NKH Crusaders Fundraiser in Boston, which will be an auction.  A table will be set up with Ellie Kate's picture and her story, as well as information on this special fund.  We would like to fill the table with beautiful items that will help raise money for this very worth cause!  During the past NKH Crusaders fundraiser, we raised $1,000 through our auction table and this year, we hope to raise at LEAST $2,000 with hopes of assisting around 15 fellow NKH families.  

This is where we need your help . . . 

• Do you have any special or autographed items you would donate to be auctioned-off, in Ellie's name, at this event?

• Do you own a small business and have extra new items on hand that you could donate to be auctioned-off?  

• Do you make or sell jewelry, stationary, soaps, etc that you could donate?

• Do you have any art, or could you create art, to be auctioned-off for this special fund?  

*Your donated items can be mailed directly to Kristin Archibald before the fundraiser and medical conference.  Mike and I really hope we get to attend and if so, we will take some items with us on the trip.  

*Items valued $200 or higher are eligible for a tax-write off

*If you are interested in helping with this October auction and if you have items you would like to donate for Ellie Kate's Helping Hands fund, please contact me by SEPTEMBER 5th so we can make plans to get your items to Boston in time.  

*Do you have LARGE items that would appeal to a GRAND audience (more than those visiting the table in Boston on October 14th)?  If so, let me know!  We plan to have an online auction later this fall and into December, to help us celebrate "Ellie Kate's Month of Reckless Love"! 

*There will be more opportunities for you to give to this special fund, so be watching the Blog for details!  

*"Ellie Kate's Helping Hands" fund is not associated with our family's account with Helping Hands International.  Helping Hands International houses our family's medical fund  and donations toward us personally.  "Ellie Kate's Helping Hands" is purely associated with NKH Crusaders and is only used in helping our fellow NKH Families around the world.  

The McLaughlin Family receives NO PART OF THE "Ellie Kate Helping Hands" Fund, but rather all of those donations go directly to NKH Crusaders. 

We are thrilled to see what God will do in and through the auction, and I know there are some very special families He wants to love and care for through this special fund in Ellie Kate's Name!  

I can't wait to hear from YOU about the items you are willing to donate for this fabulous cause - one that is so near and dear to our hearts.  

Don't forget - contact me by SEPTEMBER 5th if you have items to be included.

Thank you, in advance, for serving and loving NKH families just like ours, by donating your items to the NKH Crusaders Fundraising Auction! 

Peace Like an Ocean

"At times I wake with a fright
only to realize it wasn't night

I hadn't been sleeping this nightmare is real
I can't even guess how my child must feel

He rants and raves screams and rages
Animals like this would be kept in cages

He cries out loud, sure that nobody loves him
His only solace is scripture about the God above him

Some days he wants hugs some days he can't be touched
He falls apart if he feels he is rushed

He hits and kicks and hurts those around him
With an age inappropriate temper tantrum

He misunderstands the tone of my voice
Assuming I am always mad at him as if there's no other choice

Underneath he's sweet and kind and has a great disposition
Curing his PANDAS has become my one mission!

I want my son back I want him to feel loved
I resent this path in life that my family was shoved

I hold my breath every time we’re around a sick child
I pray his rages and flares this time will be mild

Others don't see him the way that I do
They judge him and ridicule my parenting too

One by one doctors doors slammed in my face
As they realized a cure wasn’t something they were willing to chase

Some flat out don't believe in this disease we are living
They refuse to dispense the steroids, ivig and antibiotics we are giving

Insurance won't pay and so children suffer on
aware of the life that they had that is gone

On this roller coaster I'm going for a ride
I pray to find smiles and laughter on the other side

As the days and nights blend into one
I search for the key to cure PANDAS for my son

Prayers to all that are fighting this fight
The least we ask for is a little rest tonight"

- Suzy Dunnuck Bower, PANDAS mother and advocate

PANDAS is a very new thing for us, as most of you know.  I feel like the Lord clearly led us to this diagnosis but at the same time, it's been a bit hard to accept.  Maybe it's just hard to wrap my mind around this disorder.  Reading posts from other PANDAS parents is comforting, but it also shows me how serious this is and how much it affects everyone in the family, in the community, etc.  These sweet families devote their lives to their children and their care, searching for the best doctors and best treatments; looking for the best hospitals and options out there.  It's new and isn't studied much, so most treatment is experimental and not covered by insurance.  Does any of this sound familiar to you?  For me it does because we already live this very thing out with NKH! We've done so for nine years and there is STILL so much that we don't know.  We STILL grow weary of the NKH fight, and yet we now have another serious one on our hands.  It isn't terminal (thank you, Jesus), but it is detrimental to little Henry in ways that I can't even explain; ways that hurt him physically, mentally, emotionally, and spiritually.  

These photos are from our Destin Trip last December; it's my favorite place and brings me much peace, as it does the boys.  I wish we were there, but I longingly look back at these photos of Henry and the chaos that is going on in his heart, partnered with the beauty and peace of the ocean.  Two of my most favorite thing in one place.  Lord, thank you for this literal picture of Henry in peace!  Bring us YOUR PEACE that passes all understanding.  Only your peace will do!

This child, my Promised Child, My Henry, facing this awful thing - how do I parent it?  How do we face it together as a couple?  How to we help Conner handle it as it adds so much stress to his life?  And Lucy?  PANDAS comes in and takes over and these outbursts Henry has are uncontrollable.  I don't want to go into too much detail because of his privacy, but really and truly, people get physically hurt when the outbursts occur.  And his tantrums are like those of a toddler.  Henry doesn't deal with tics, as many PANDAS children do, but he does deal with OCD.  Henry's OCD is in the form of his thought-life; he will have something come into his mind (usually a want) and he just can't get it out of his mind.  He can't put it off like you and I, or redirect his thoughts.  He dwells on this want and works himself up over the fact that he can't have what he wants when he wants it (candy, play-dates, TV shows, toys, games, etc).  Sometimes he loses his bodily functions, although thankfully he isn't bothered at all by this or doesn't seem to understand that this isn't age-appropriate (for this I am SO grateful).  It so much more than "just" ADHD or a spoiled child.  I sometimes feel like people see Henry act out and immediately assume one of those two things, but that isn't the case.  This has also opened my mind to a new group of special-needs individuals and their families who are also often discriminated against.  

So many of you have kindly given me suggestions on how to help Henry, and Mike and I really do appreciate everyone's concern and eagerness to help. But here's the thing - I honestly just need to vent most of the time when I write or post about these things.  You can rest-assured that we are doing everything we can to help Henry with this - from doctors, to counselors, to therapists, to drugs, to oils, to prayer, to treatments, to out-of-state options (the leading PANDAS doctor/hospital is at Boston Children's Hospital).  We just need prayer and continued encouragement, which you all are so very good at doing!  

Thank you for lifting us up.  Thank you for praying for Lucy as she's faced intense ear infections this week that have had her very sick (please pray that she will be able to tolerate her feeds better asap). Thank you for praying over Henry.  God has laid it on my heart to pray for Jesus to tame Henry's heart.  I would love for you to pray the same!  And for Conner and his tender heart - that he wouldn't feel forgotten or left out in the chaos, but that he would feel treasured.  My prayer for him is that God would capture Conner's heart and show him what a treasure he is!   

Thank you for continuing to remember Ellie Kate during "In Honor of Ellie Kate - A Month of Reckless Love".  Please keep loving people recklessly and keep us posted by sharing on our Facebook page.  We do so love hearing about how you are loving and giving to the lives around you, especially with Ellie Kate in mind!  

Wearily Yours,

Ryan