Saturday, January 6, 2018

Let Your Will Be Done - Thank You's and Christmas Catch-Up


Lucy had an extremely difficult time over the Holidays; she's been suffering and at times, the suffering is intense.  We tried to getaway over Ellie's Heaven Day and Christmas, as it's excruciating for me to be in our home and surrounding areas, especially since Ellie Kate died there, in our arms.  The Lake House which was offered to us was gorgeous and the views on the water even more beautiful than I could share!  Sunsets were breathtaking and we even had several inches of snow, which is huge for Oklahoma.

Henry's Snow Angel

Making snowballs!

Bowie Jane is the BIRTHDAY GIRL!  
God preciously orchestrated This INDESCRIBABLE GIFT to be born - 
to be physically placed in our arms - on December 23, Ellie Kate's Heaven Day!

The snow, the lake, nature, the seclusion . . . it was magical for the boys, I think; I hope.  It was supposed to be magical for all of us, but it wasn't.  Lord, when will a getaway be magical, peaceful, hopeful for us?  Disease took over Lucy's body right before Christmas, on Ellie's Heaven Day and Bowen Jane's First Birthday. Her breathing changed on Christmas Eve and she stopped voiding completely, or long periods of time.  She was showing us all signs of death so I didn't sleep - I just stayed by her side, except to play Santa and set out the gifts early on Christmas Day.  I panicked, I'm not going to lie, and reached out to three friends, asking them to pray intently, which they so graciously did, even as they were walking through their own immense heartaches.



God created gorgeous sunsets for us to enjoy during our get-away! 



By Christmas Morning, we had set Lucy up on the living room of the Lake House - I wanted her to have a view of the light and beautiful water, so we faced her toward the big windows.  She barely moved as the other children opened their gifts.  Because of Lucy's decline, Mike and I decided to go ahead and leave that morning instead of staying several more days (but man, we needed the solace of those several more days and were so looking forward to it - especially me and Mike!!).

Bowen, spending time with her Big Sister on Christmas Morning 2017

Lucy Belle meeting Bowen Jane, December 2016

Once we arrived at my parent's home, Lucy immediately perked up.  We had her on continuous fluids and feeds the entire trip and because of that, because of God's goodness and because He listened to the petitions of our friends on Lucy's behalf, Lucy AWOKE, COMPLETELY.  She enjoyed time at my parent's and even opened a few gifts in her own special way.  IT. WAS. BEAUTIFUL, and once Mike and I realized Lucy was once again stable and had color in her face, we both sighed in relief and completely crashed, mentally, physically and emotionally.  We were so grateful my parents helped watch the kids so we could go to bed early, sleep in and even nap before going back to our home.


Since Christmas, Lucy has not gone back to that deathly state, which was so frightening, however, she still isn't back to typical, happy, busy state.  In all truth and reality, Lucy hasn't been "Lucy" for a long time.  She's sleeping even more, barely waking at all most days; she's excruciatingly thin as her feedings and formula increasingly cause more pain, rejecting the feedings she receives.  More seizures, more jerking, more pain - it's difficult to watch and I struggle to even think of what Our Daughter must be going through.  Gratefully, we've had times of giggles and more times of awareness over the last 24 hours or so, although these days have also come along with more intense pain with her gut, which still isn't working correctly (by that, I mean the food isn't going through her stomach and into her intestines - it's just staying or sitting in her stomach, and we pull/draw it off her stomach through her gtube/feeding tube; many times, the formula is in the exact same state as it was when we last fed her, two hours ago, without any signs of breakdown of the food whatsoever).


Mike and I very much want to meet with all doctors involved, as well as our hospice nurse, in order to make a "game plan".  Since everyone isn't in one location, this likely will not happen.  I've asked our doctors and nurses if group email communication would be possible, so we are waiting to hear back concerning that.  We would absolutely LOVE your prayers that a meeting and/or email communication will happen, AND soon.

Thank you for your continued messages of all kinds - please continue reaching out even if we don't have the opportunity or emotional energy to respond.  Each message brings us hope and light, showing us we aren't alone in our "Community"  (we know we aren't alone from the Father!).  Also, thank you for your continued, intense and specific prayers before the Throne of God, all on behalf of Lucy's health.  We don't want her suffering here on earth - we want her to get better and come back to her old self, her gut being healed, giving us more time with her.  However, we KNOW God WILL heal Lucy, no matter what and He will do what is best for Our Girl.  I find great hope and comfort in that Truth!  He will heal her here on earth (in little ways or completely) or He will give her the Ultimate Healing, with no more gut pain, no more feeding tubes or seizures, just food which Lucy can eat and things Lucy can do . . . things which are impossible on this earth.  


Oh, Abba - Father, our Daddy-God!  Let your Will Be Done.  
Luke 22:42, New Living Translation
"Father, if you are willing, 
please take this cup of suffering away from me
Yet I want your will to be done, not mine.


Lord Jesus, I believe; help my unbelief, Oh God!! 
"Immediately the father of the child 
cried out and said, ' I believe; help my unbelief!'"

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

Oh, My Friends!  THANK YOU for donating to Hope Link and to our Medical Account!  THANK YOU for giving to OKC Hope Link!  THANK YOU too for loving the Hope Link Families we adopted this Christmas in honor of Ellie Kate's Month of Reckless Love.  I didn't know what to expect, especially knowing it's been five years without Our Girl, yet ya'll came through and EVERY.SINGLE.NEED and want was met!  Isn't that beautiful???!!!  This happened because of YOU - because the Spirit moved you to act, give and serve, and to do so with Our Ellie Kate in mind!! I am sincerely overwhelmed with gratefulness.  

If you are still looking to help or if you missed the opportunity to give to our Hope Link Christmas Adoptions, there are still needs to be met through "Ellie's Wish" which is a program through NKH Crusaders.  As I've mentioned in previous posts, my dear friend and fellow NKH momma started this program in Ellie Kate's honor and the goal is to meet one need for a few fellow NKH families each year.  These sweet families endure so much and have no way of paying for these items on their own. These items will bless their kids and would make their lives better, happier and/or easier.  

Click on the links below for the need and wish of each family: 




Thank you again for the December outpouring of love and service in honor of Ellie Kate!

Thank you for your patience and your understanding with us, especially during these difficult months - when oftentimes it's just too emotionally draining to post or share.

Thank you in advance for loving and supporting our fellow NKH Families by meeting their needs listed in the links above.


With so much gratefulness, my heart might burst . . . 

Ryan Elizabeth

PS:  Be watching for the next update, with Bowen's Birthday details and details of us soon needing a place to live!

Thursday, December 21, 2017

The Human Beauty of Our Christmas Season (UPDATED X2)


Oh, My Friends!  We have been so very blessed by the outpouring of reckless love shown over the last few days!  I am PROUD to say, ALL of the needs AND wants of our adopted Hope Link Families have been fulfilled this Christmas!  

It brings me overwhelming peace knowing collectively, we've loved these families so well.  You've even given us the privilege of playing, "Santa" and with each gift I've placed into their grateful hands, I have most truly thought of each you who've given, donated and supported us in these efforts.





"Ellie Kate's Wish" by NKH Crusaders,
is the last major act of 
Reckless Love for this month.  

There are just a couple of wishes to cover, 
those making wishes are extremely dear to our hearts.  
These people are part of our NKH Family,
and the gifts requested will be delivered directly to their homes.  
Both of these friends have the most severe form of NKH - 
they are unable to move around like Lucy,
and also suffer more seizures and other ailments.  
*Each family was chosen because of the degree of need and the level of which the needs and wants are well-deserved, especially for their Sweet Children.  

If you've wanted to purchase gifts, but haven't been able to until now, would you consider fulfilling one of these "Ellie Kate's Wishes" for our NKH Friends (to see their needs, simply click on the links below in PURPLE). 


If you are looking for end-of-year giving or ways to receive those all-important tax write-offs, we would love for you to consider giving to the following: 
**************************************

As for our family, we are surviving this difficult Season and truthfully, I'm sad it's going by so quickly . . . I truly enjoy focusing on Our Ellie Kate for an entire month, knowing her name is being said, that it's being typed out, that shes' being remembered and thought of.  It's something a Mother longs for - her child's life and legacy to live on and for their name to be remembered and said, especially out loud.  Thank you for doing all of those things this Holiday Season.  


We've had some very sweet and even fun times as a family - Toby Keith and his sweet Wife came over to spend time with Lucy, and she just ate up the attention.  It was incredibly kind of Mr. Keith to do this during his "downtime", even though he is still oh-so-busy.  


We' were even able to meet Santa as a family, along with our Hope Link friends, which ended up being a precious experience for Lucy.  She stayed awake the entire time, which was HUGE for her and on the way home, she giggled and giggled as we talked about Santa and how he knows her name and knows her friends; how he made a special trip to Evan's house just to see them!  It's been precious, but we also know, after meeting with doctors, our days with Lucy are short and at this point, she's mostly sleeping.  








Lucy tremors and seizes in her sleep; I often wonder if her thoughts and dreams are full of fear or of peace.  I pray and hope the Father has sent Angels to minister to her during this time.  I know He did for Ellie Kate and I believe that for Lucy too.  When Lucy IS awake, there are many times of pain, especially as we try to feed her and keep her hydrated.  Full Comfort Care is on the horizon, but we want one more Christmas, which we didn't have with Sister.  

Mike and I have always sought "quality of life" for both Ellie Kate and now for Lucy Belle.  We've always told both Girls that we will fight for them, and fight HARD, in every way - we will do this for Lucy as long as she shows us she's still in the fight and still wills to live, just as we did with Ellie Kate.  For us, God was good in that once the hospice decision was made for Ellie, she was with Him in a mere three days, so it was blatantly clear her precious body was finished fighting here on earth and she was truly ready for her new life in HeavenRest assured, as Lucy's parents, we are doing what we feel is best for her and we are doing what we feel the Holy Spirit is leading us to do.  We will continue to do this, always.  



There are so many people around us struggling, suffering, many even pleading for the lives of their children because of accidents and disease.  I encourage you this Christmas, to rise above the temptation to feel "down" or weary because of worries  wearies which likely pale in comparison to true struggles to most around the world.  
Leave behind the temptation to get upset because you couldn't find that "perfect gift", or temptation to "freak" because your caterer is just too booked to help with your Christmas desserts or meal.  Leave behind the temptation to pout or sulk over gifts which may not arrive on time from Amazon, J.Crew, etc. 


 Rise above.  Think of others.  Focus on others.
PRAY for others - not only for families like ours but for others around the world who are hurting and suffering.  

DO something tangible, practical - RECKLESSLY LOVE the world around you by giving and serving with your body and mind, 
with your talents and finances.  
I PROMISE - you will NOT be disappointed in sacrificially giving and serving, offering hope and love this Christmas Season.  
After all, this Holiday Season exists because of Jesus Christ, 
the Savior of the World, who came to us as a tiny, human babe.  
Jesus left riches and His perfectly royal, heavenly home, 
all because He LOVES US - 
He loves EACH and every person living on this earth, 
equally and entirely, no matter what! 

God created each person for His glory;
He longs for hearts to come to Him, completely and entirely.  
Truly, the Holy Spirit moves in the hearts of people, 
drawing them to Jesus Christ and God the Father, 
BUT it's through OUR LOVE, 
OUR EXAMPLE, OUR Sacrifice and RECKLESS LOVE
the same Reckless Love God lavishly pours out upon us individually - 
where which the Precious Souls of this world are drawn to HIM.  

The MOST BEAUTIFUL thing Believers can do this Christmas is to Recklessly Love the world around them, 
bringing the HOPE of Christ to everyone they encounter, 
introducing them to God's unconditional love, showing them the
Innocent, Perfect Babe lying in a manger that first Christmas.

What could be more reckless or loving, 
then to introduce others to the HOLY Baby, 
the KING who CHOSE to come to this broken earth, 
choosing to experience every heartache himself;  
this God-Man, who dedicated His life, 
who GAVE His life in the most literal way, 
in order for every human to be united with Him in body, mind and spirit.


May we follow the example of our Father-God, sacrificing His most prized, precious possession on our behalf - Jesus, His Only Son.  
May we follow the example of Jesus, 
giving all that we have and all that we are; 
sacrificing in this life so that others may have what they need so that others will feel loved, 
cherished and at peace.

May we boldly proclaim the sane Reckless Love 
Our Father, Son and Spirit long to show every person on this earth.

May WE be the ONES - the Bearers of that Reckless Love, all for His Glory.  

For, THIS;  This is the Human Beauty of the Season. 




With Love and the Human Beauty of this Season, 

Ryan

Saturday, December 9, 2017

HOPE - Hope Link Christmas Adoptions!


December - the Month of Reckless Love

True, Reckless Love reveals itself in sacrificial service;
and giving will ALWAYS bless the Giver
molding their hearts in radical ways.


****************************************************
In case you have a few questions
about our Hope Link Christmas Adoption . . .

What is Hope Link? 
OKC Hope Link is the 501c3, 
which started in 2007 in honor of Ellie Kate McLaughlin.  
Hope Link serves families of children with rare, 
serious and undiagnosed disorders. 
We also reach out to families who’ve already 
lost a child to a medical disease or circumstance.  
This Organization is made up of families who love their children fiercely 
and fight intensely for the livelihood and happiness of their family. 
Being a Special Needs care-giver or parent to a medically-fragile child 
can be excruciatingly difficult – 
heartbreaking, watching your child suffer and fight through their disease
frustrating, as you watch your other children and partner 
as they so often feel tossed-aside 
in light of the heaviness of their sibling’s diagnosis
and disheartening, as you work so hard to provide,
 all to see your hard work seemingly 
melt away with endless bills to be paid.  
For more on Hope Link, CLICK HERE:  OKC Hope Link

Just a few of our Hope Link Mommas!
*********************************************************

 Who are the adopted, Hope Link Families?


 Hope Link Family, T: This sweet family has four children, 
with one now living in Heaven, healed and whole 
from the disease with which he was born – 
Non-Ketotic Hyperglycenemia (What Is NKH?).  
Family T is one of the three Oklahoma families affected by this disorder
This family has two healthy girls in the home, 
along with another little boy, also affected by the most severe form of NKH. 

Baby Braxston, Now in Heaven

This Hope Link Cutie has a trach and 
is unable to make purposeful movements.  
He’s non-verbal (he does not speak) and like Lucy, cannot eat by mouth, 
receiving all nutrients through a feeding tube. 
 He does not sit up or roll, although he is very-well loved and cared-for
He also suffers from seizures and other cruel symptoms, which NKH brings.
        Both sisters are typical, loving everything “girlie” – 
dress-up, Barbie and pink!  
As with our other Hope Link families, these sisters often take a backseat, 
especially when it comes to attention, 
only because brother needs hands-on, constant care

Mom and Dad are both Military Veterans with a strong love for Country.  
Because of Bubba’s disease, Mom is no longer able to work, 
which has added financial stress.  
Family “T” lives outside of the Metro area, 
so attending Hope Link meetings and events can be a financial burden too. 
Although they qualify for home health nursing, 
there are no nurses willing to drive outside of the City to work in their home.
*needs for this family are especially important

 To fulfill the wishes and needs of Family “L”, click HERE: 

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

 Hope Link Family, V:  This family is very near and dear to us, 
being close to our family for many years.  
The momma is an RN and has served in our home during the night,
 caring for Lucy and serving as our home health nurse.  
Family V has four children, three of whom currently live in the home.

 

The main diagnosis for this little Hope Link Man 
is Duchenne Muscular Dystrophy, are and terminal form of the disease. 
What Is Duchenne?
Other diagnoses including autism, OCD and severe anxiety 
Duchenne MD is progressive, meaning it gets worse, 
spreading throughout this Little Man’s body, 
eventually affecting every muscle, including the heart.  
Things that used to be so easy to do, 
are now physically impossible because of the disease.  
Recently, he’s become non-ambulatory (cannot walk on his own), 
and is the safest when in his wheelchair.  
He is non-verbal, but will tell you what he likes and doesn’t, 
communicating especially well with his family, whom he adores. 

Mom and Dad are both extremely hard working – 
momma works in healthcare and dad is a creative genius, 
painting murals around the State, producing unmatchable artwork 
and building many things, including a handicap-accessible bunk bed for his sons. 


To fulfill the wishes and needs of Family “V”, click HERE: 
  (this link will take you directly to the family’s Amazon Wish List) 

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

 Hope Link Family, L:  This Hope Link little girl is, Gorgeous, sweet 
and perfect in every way”, according to her adoring momma.  
She was born with a genetic mutation – 
specifically, a mutation in gene Genetic Mutation SZT2


This Hope Link Beauty is non-ambulatory, non-verbal and suffers from seizures, 
although she WILL let you know what she likes and what she doesn’t.  
Big Sister is outgoing and intelligent, 
she too adores her little sister and tenderly cares for her as well. 
Their bond is a precious thing to behold. . 

These Special Parents are both extremely hard working - 
momma has even worked all hours of the day and night 
to help provide for their family. 
  It’s such a GIFT, showing Reckless Love to this Sweet Family 
so dedicated to their children and Faith!

To fulfill the wishes and needs of Family “L”, click HERE: 
(this link will take you directly to the family’s Amazon Wish List) 

Be watching for more updates on our Hope Link adoptions.
THANK YOU for joining us in showing the world some
 "Reckless Love", bringing HOPE to those who have none.



Sunday, December 3, 2017

Ellie Kate's Month of Reckless Love - Christmas Adoption and More!


It’s DECEMBER 3rd, and we can officially kick-off,
“Ellie Kate’s Month of Reckless Love”!!!

It's the Most Wonderful Time of Year for Our Family - 
the month we’ve dedicated to Ellie Kate McLaughlin, 
our Eldest Daughter, born to us December 4, 2005, 
taking her last breaths in our arms, December 23, 2012. 
To us, December belongs to Ellie Kate.

*************************************************************
There are so many aspects of Ellie Kate’s journey,
countless things we’ve gleaned from her life.  
Chiefly, God has opened our hearts to the those within the special needs and medically-fragile communities,
as well as those dealing first-hand, with child loss. 
To be honest, we wouldn’t have chosen this specific ministry for ourselves
OR for our family and yet, it is more precious to us
than anything we could have chosen on our own accord.


Ellie Kate's Last Christmas, taken at OU Children's Dec 2012


It’s through this ministry and calling, God has clearly defined for us, what “Reckless Love” means:
Taking intentional, thoughtful action, in order to benefit the life of another, doing so without worry of consequence,
even if it brings personal sacrifice.

"Love"-  a verb; a deliberate action; it's not just a feeling, because our feelings can quickly pass and even fail us.  
"Reckless" - to be unconcerned with the consequences of an action; to test the limits, not worrying about what might happen as a result.
·          
Love is giving, even when it doesn't make sense - 
ESPECIALLY when it doesn't make sense

Love is giving, even when it takes away from 
our own needs and desires         

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


This anniversary marks FIVE years since we last saw Ellie Kate, since we last drew in her sweet scent, last touched her soft skin, and last touched her silky curls.  We know some of you don’t know Ellie Kate, with many joining Our Journey since Ellie’s death. 
No matter when you’ve come alongside us in this Journey, we ask you to join us in honoring EKM and in celebrating her life this month
In fact, we’d love for you to change your Facebook profile to celebrate this Great Month with us!




To celebrate Ellie Kate in years past, we’ve gathered books and gifts for OU Children’s Hospital, where Ellie spent her last birthday and so many days of her life.  Last year, we adopted one single family.  



This year, we’re adopting three, 
precious Hope Link Families, 
all so very well-deserving of some reckless love! 

Also in celebration, we’ll be blessing fellow NKH Families from around the world by taking part in, 
“Ellie’s Wish, a program dedicated 
in EK’s honor, through NKH Crusaders.  
Only NKH Families are encouraged to apply for one “wish”, which is an actual need for their childand we have the joy of fulfilling a few of those needs!

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

Honestly, we NEED you to play a part in fulfilling the many wishes and needs of these Precious Families this year, all whom we know and love.   
When the participation stops, 
a part of Ellie Kate stops.



Even if you aren’t able to purchase or provide 
a gift from the Amazon Wish Lists, 
there are still MANY ways you can honor Ellie Kate 
AND show some Reckless Love 
to the hurting world around you this month . . .

Ways to Participate in Ellie’s Month of Reckless Love:

·         December 1-20th:  Help us show MAJOR, RECKLESS LOVE as we adopt THREE Hope Link families in Ellie Kate’s honor! An Amazon “Wish List” has been created for each family; items are listed extensively and according to need.  Gifts are NOT limited to the Amazon Wish Lists; other gifts are very much welcome, and can be mailed to us directly (if you would like other gift ideas, sizes or needs, please let me know). All gifts will be wrapped and given to the Hope Link families for Christmas morning . . .

HOPE LINK CHRISTMAS ADOPTIONS:  
Giving can be easy and quick, as each Hope Link Family has an Amazon Wish List Made in their honor.  Needs vary among each family, and the lists beautifully reflect those differences . . .
·         Click on a Hope Link Family’s Amazon Needs/Wish List 
*click on links listed below in BLUE to make your purchase
·         Choose an item on the list to purchase/donate
·         Purchase the item via Amazon
·         The item will be mailed directly to us
·         With volunteers, we will be wrapping all gifts and delivering them to our Hope Link Families before December 20th






“ELLIE’S WISH” through NKH CRUSADERS: Giving is easy and quick, each family choosing only ONE item through Amazon.com.  Needs vary among each child, and the lists beautifully reflect those differences.  
·         Click on the “Ellie’s Wish” Amazon Needs/Wish List
·         Choose which item to purchase
·         Purchase the item via Amazon
·         Each item will be mailed directly to the NKH Family, who will be able to wrap the gift for their own child, preparing it for them as they wish. 
*ADDITIONAL DETAILS AND LISTS WILL SOON BE AVAILABLE


·         December 4th (Ellie Kate’s Birthday):  Go out and love, serve, encourage, or GIVE to one of the following . . .
·        Serve families around you who also have a special-needs child. Bring a meal, bake a cake, send a balloon, or gift card; ask the family to get together or provide a date night for the parents/caregivers – recklessly anything uplifting, letting the family know they are loved and not forgotten
·        Tangibly Bless a family who has a lost a child.  Bring a meal, bake a cake, send a balloon or card, even give an unexpected gift - anything to let the family know they are loved and not forgotten, and that their child who has died, is ALSO not forgotten. 
·        Share Ellie's story with someoneIf you never met Ellie Kate or don’t know much of her story, share about Lucy Belle or about what God has done through their lives! Post and let us know about your encounter! 
·        Share your favorite Ellie Kate memory on our FB page or Twitter, OR share with us how Ellie Kate’s Legacy has impacted your life!

·         December 15-20th: We will gather to wrap each gift and deliver to our adopted Hope Link families before December 20th.  If you’d like to be part of wrapping or delivering gifts, simply text me at 405-923-8562.  We would absolutely love for you to serve in this way!

·         December 23rd: Ellie's Heaven Day! Post pictures of balloon releases in Ellie Kate's honor. Be creative – maybe even send messages to Heaven with your balloons!  This is a real way to show our family that you remember our Sweet Girl. Be sure to share your balloon-release videos and photos on social media!

·           December 24-31st:
·        Love Your People with reckless-abandon, as if this were your last holiday on earth.
·        If you are looking for an end-of-year tax write-offplease pray about donating to one of the following reputable ministries:
§   OKC Hope Link – Reaching families whose children suffer from rare, serious and undiagnosed disorders, through fellowship, friendship and prayer.  Seeking to serve the entire family, Hope Link offers events throughout the year for its members, including Date Nights, a monthly Support Group for moms, and an annual Mom’s Retreat. 

§   The “Ellie Kate Memorial Fund” through Helping Hands Ministry a charity with immense character, Helping Hands holds this specific fund in our family’s honor.  It is used solely for our medical expenses. 
     Click HERE to donate to the McLaughlin Helping Hands Medical Account



Ellie Kate's Magical Christmas Tree, 2017

Friends, THANK YOU for remembering Ellie Kate and for honoring her life in the specific ways listed here on the blog.  I cannot wait to see what GOD will do through you for these families so greatly in need!  

You are a blessing, an inspiration and encouragement in more ways than you know.  
I look forward to posting updates on "Ellie's Month" again soon!



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