Sunday, November 30, 2014

The Month of Reckless Love





December is now upon us, and thus begins "The Month of Reckless Love in Honor of Ellie Kate".  This Thursday, we will celebrate what would have been Ellie Kate's 9th birthday.  I wish I could say that I'm writing this post with the utmost of joy and anticipation, but to be truthful, my heart is in a million pieces.  
I've been told that losing a child is the hardest thing you will ever experience.  I don't have much to compare it to, but I tend to agree with that statement.  I cannot imagine anything more difficult than losing a part of yourself - a little life that you were ordained to love and care for.  Those sweet giggles and smiles and hugs, gone forever until you are reunited in eternity.  A little person that you didn't have the privilege of watching them grow up. God's plans were ever-higher than mine for Ellie Kate, and I trust His timing and His purpose, but that doesn't mean that it doesn't rock me to the core.  And sometimes the sting is so fierce and the pain hits you, wave upon wave.  

While my heart is deeply grieving and mourning already, I am sweetly looking forward to celebrating Ellie this month, and particularly this week at OU Children's Hospital.  So many of you have sent gifts to be given to patients there.  So many have shared details of Ellie's Month with others.  Your participation in this shows us support and love - I just cannot stress that enough.  In participating, you show us that Ellie Kate is not forgotten.  You remind us that there is purpose in her suffering, and in ours.  Watching you give, serve and love lets us know that Ellie's life is having a ripple effect, and that the reckless love we learned from her is continuing to touch the lives of those around the world.  



Today, in our church service, Pastor Sam spoke on "Nowhere Else to Go".  It sounds a little strange for a sermon, but it spoke straight to my heart today.  In John 6:60-70, the disciples had started doubting Jesus and his words.  They said, "This is hard teaching.  Who can accept it?".  And you know what? It IS hard teaching - calling one to lay down his life, to make Jesus Lord and King of their life.  Complete and total surrender.  That isn't exactly the kingdom of God on earth that the disciples likely imagined.  Many of the disciples decided to leave and Jesus asked His twelve if they wanted to leave too.  But Peter answered him, “Lord, to whom shall we go? You have the words of eternal life.  We have come to believe and to know that you are the Holy One of God" (John 6:68-69).  

You see, like Peter, and like all true Believers and Followers of Christ, I have no where else to go.  How do I get through this?  How do I face another day?  How do we survive as individuals and as a family?  It's because all I have is Jesus.  I have nothing on my own.  I fail in every possible area, but He is my portion forever.  And this isn't a sad thing; not a desperate thing.  This is an amazing thing for me to proclaim and cling to - Jesus is all that I have.  That is more than enough, and I am clinging to this truth right now.  

Now on to celebrating Our Girl . . . 

What do we mean by "Reckless Love"?  What we mean is this (and it's very much a 'Mike and Ryan definition'):  
  • "Love" should be a verb, an action; it's not just a feeling, because our feelings pass and fail us.  
  • "Reckless" means to be unconcerned with the consequences of an action; to test the limits and not worry about what might happen, be it good or bad.  
Reckless Love is taking intentional action in order to benefit the life of another
without worrying about the consequences. 
It's stepping up and out and loving, even if it feels awkward, 
even if it causes a stir in your household, community or place of work.  
Ellie Kate taught US to love others with reckless abandon - to forget about the rules and the limits or how it "should" be done.  Her life taught us to love who the world sees as unlovely.  She taught us to give even when we didn't have enough. She taught us to serve even when it hurt, even when it was costly in time, energy, etc.  Ellie Kate taught us well, and we want to teach the world to love in the same reckless way - the very same way that Jesus loves each and every person on earth.  Our sincere prayer is that your lifestyle will become one of Reckless Love, and that in some small way, our Ellie Kate opens you up to loving, giving and serving like you never thought possible. 


We have an entire Facebook page dedicated to A Month of Reckless Love, and my hope is that you will freely post ways you are loving and serving others with reckless abandon.  Posting won't be a boastful thing; it will be an encouraging thing to Mike and I and to our entire family.  Your posting will also encourage others, and I pray it will spark those who see it to move and do. In Honor of Ellie Kate - FACEBOOK PAGE


Ways to Participate in the Month of Reckless Love:

1. Purchase items on our Reckless Love Wish List: All interactive toys and books donated will be given to ill children at OU Children's Hospital on December 4th.  As a family we will be delivering these items as we celebrate Ellie Kate's birthday:  In Honor of Ellie Kate - AMAZON WISH LIST

2. December 1-31st: Start loving those around you in reckless ways! Give to those in need, purposefully reaching out to those who are hurting, including those with special needs and families who have lost children. Share on our page how you have loved others in Honor of Ellie Kate (see the definitions and explanations above).

3. December 4th: 
  • For Ellie Kate's birthday, we ask that you love, serve, encourage, or give to a family with a special-needs child OR to a family who has a lost a child due to any circumstance.  Bring a meal, bake a cake, send a balloon or flowers - anything uplifting to let the family know that they are loved and not forgotten.
  • Share Ellie's story with someone you come in contact with.  Post and let us know about your encounter. 
  • Share your favorite Ellie Kate memory or story on our FB page
4. December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing balloons in Ellie Kate's honor. Send messages with your balloons and be creative! This is a way to show our family that you remember our Sweet Girl.








FOR WAYS TO GIVE while receiving a tax write-off: 

*Give to the Ellie Kate Project through Helping Hands Ministries - This is the family medical fund, and giving goes directly to Lucy Belle's medical costs.


*Give to OKC Hope Link OKC Hope Link- - a ministry we help lead; Hope Link reaches families of children with rare, serious and undiagnosed disorders.


*Give to NKH Crusaders and help us find a cure for this terrible disease which causes GI issues, epilepsy, extreme developmental delays, mental retardation, and more. 

 
I will never be able to express to you what this celebration means to me as Ellie Kate's mother.  For Conner and Henry to grow up knowing, that each December, people will come together in honor of their sister, going out to love the world around them with reckless abandon - it is a priceless treasure.   With all that I am, I thank you with a heart that is grateful beyond words.  - Ryan


Wednesday, November 19, 2014

Our Pioneer Woman

Ellie Kate recently welcomed her Great-Grandmother Tully as she entered Heaven and left this broken world behind.  Colleen Patricia McFarland Tully passed away on her farm, just as she wanted.  She poured her heart, soul and life into that farm and the house that they built on their land, so long ago.  I can only imagine the reunion Ellie and Grammie must have had!  It brings me so much joy to think about.  

Grammie's death holds some uncertainty at this time, which hurts my heart very much.  I think everyone would agree that they want their loved ones to pass peacefully.  I always imagined Grammie meeting Jesus in her sleep, but that isn't the way her life on earth ended. But now . . . none of that matters.  She is with her Lord and Savior, Jesus.  And she has been reunited with her beloved dauther, Deidre, who passed away from cancer at the age of 22.  And My Sweet Ellie Kate . . . can you even imagine??!!  


I imagine Ellie's "welcome" smile looked something like this


I'm so grateful that we were able to spend time with my Grandmother while she was living on earth.  Mike and I would take the boys out to the farm and we would have lots of adventures there, making memories all along the way.  Each time, the boys would leave with some little trinket, rock or shell that Grammie gave them as a special treasure.  Conner and Henry went down quite often to visit Grammie with my Dad.  They love her and always looked forward to picking up a hamburger and Dr. Pepper for their Great Grandmother.  The boys truly felt safe in her home, and they absolutely love being there.  I'm glad they knew my Grandmother well.  I'm glad that Grammie knew and loved them so much, and also loved Ellie Kate and Lucy so dearly.  She would hold and hug on the girls, even when they were wiggling and kicking, as they often do/did.  They both have her green eyes.  Grammie buried her daughter as well, and she had given me a few pieces of wisdom during the times since Ellie passed, which I hold dear to my heart.


Henry and Grammie at Braum's


Summertime Fun with Grammie 
(photos by Henry)


Colleen Tully is my Grandmother, and I am proud that I'm in her bloodline - part of this large, crazy, fun, loud, opinionated, loyal, and stubborn family! She was brave, strong, heard-headed, intelligent, caring, and stubborn (did I mention that already?).  We call her the "Pioneer Woman" because she loved living out in the country, fixing her home and raising animals. I have memories of baking oatmeal raisin cookies with her and picking berries off her farm.  She would let me ride her tractor with her, and she even let me stay with her for two weeks one summer.  I had so much fun and remember her teaching me to drive, with TWO feet, back when I was only twelve.  

One of my most treasured memories is when Grammie came up to Ellie Kate's dance recital at school.  I was able to get a picture of Ellie, Grammie and Lucy - it's the only one I have of all three of them together, and it's precious to me.  That was one of Ellie Kate's best days - really, one of the happiest days of her little life, and my Grandmother was there to witness all of her smiles and was able to see her on stage.  It makes me proud.  



What a Special Day!




I truly will miss my Grandmother.  I will miss her hands, I will miss her voice.  I will miss her hugs, although I'm thankful that she is no longer confined to that precious, little frail and thin body.  I will miss getting to call her on the phone, taking her a burger and piece of pie from Hamburger King, and of course, bringing her Dr. Peppers!  I know my boys will greatly miss her too - in so many ways, as they were all so close.  

Please pray for my Dad and his siblings as they handle all of the many things that come up when a loved one passes.  There is so much to do, along with facing the loss of their mother.  They know she's alive and they know where she is, but I know they will be drained in every way possible.  I would also love prayers for our boys as this all sinks in for them.  I asked Conner tonight if he was okay and he said, "I'm okay, Momma.  I've just lost so much, you know?".  It hurts my heart, and Mike and I desperately want to parent well through this season.  


"May the God of hope fill you with all JOY and PEACE in believing, so that by the power of the Holy Spirit you may abound in PEACE." Romans 15:13



PEACE.  JOY.  HOPE.  He still reigns and I will worship.  

Ryan

Saturday, November 15, 2014

Peace, Hope and Joy

The Christmas Season brings so many feelings and emotions to us all.  In a previous post, I mentioned the fact that I feel that this is a season of Peace for our family.  It's a word that God has given me for this time in our lives.  Everywhere I look though, I have a hard time finding "peace" decorations and ornaments!  Hope, joy and Santa are just about everywhere, but I've been looking for PEACE - figuratively and physically.

A sweet ornament I unrwrapped last night from my friend Amy!

An amazing thing has happened over the last two weeks and it truly is nothing short of a miracle, seeing how burdened my heart has been.  God, in His goodness, has not only given me a craving for peace - He has actually GIVEN me peace!  He has also placed JOY and HOPE in my heart, and those are things that I truly did not think would be in my heart, or in my mind, at this time of year.  I  wasn't sure if I truly would ever again feel those things during Christmas time . . . Ellie's Month, ever, ever again.  But Jesus has changed that for me, and even if it only lasts for a bit, I am relishing in it, basking in it, and dancing in it, as one would dance in the rain!

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 

How beautifully He ties it all together!  

The joy and hope in my heart have made me excited to decorate for Christmas.  To us, this is now "Ellie's Month", so having the house decorated early for Christmas just means that we extend the time of celebrating Our Girl!  It's been so fun and freeing to get things ready around the house.  In a strange way, I feel as though I am still parenting Ellie Kate by decorating.  I hang her ornaments just as I hang those of the other children.  




This Month of Reckless Love truly does give me the opportunity to feel as though I am parenting and sharing My Daughter's life with others.  I know it sounds strange and I wish I could explain it better, but it's just so hard to put into words.  That is one of the many reasons that it means SO much to have you participate in the Month of Reckless Love!  And, there is now a special way for you to support OKC Hope Link when you make your purchases on Amazon.com. You can go to Amazon Smiles and choose "Hope Link" and a portion of your purchase will be donated to OKC Hope Link, the non-profit that is so dear to our hearts.  Also, be sure to "like" our official Facebook page under "In Honor of Ellie Kate McLaughlin - Living a Life of Reckless Love".

Ellie Kate's Month of Reckless Love Wish List  - REMINDER - all gifts will be donated to OU Children's Hospital and will be delivered on December 4th (Ellie Kate's 9th Birthday)

It is truly a rich relief, distraction and solace to have these feelings flooding our hearts and home at this time.  Mike and I are even looking into getting a new puppy for the boys this Christmas!  New, hopeful, joyful, full of peace . . . He is SO faithful.


With Peace, Hope and Joy,
Ryan


  




Monday, November 10, 2014

A Critical Diagnosis

This post is extremely important, as we have recently learned more about Henry's behavioral issues.  We have spoken with him and asked if we could share with all of you a little bit about what has been going on.  Outgoing as always, Henry is more than happy to share, as long as I post some pictures of him, of course.  What I want you to know is, though this information is very serious and we understand the need to protect Henry and his interests, we also want to share with those who have been walking this journey with us.  So, here we go . . .

Our sweet Henry was born with a smile on his face.  Well actually, he was technically smiling when I first held him the day he was born.  He was a laid-back baby that has always been full of joy and life.  When Ellie was so sick and shortly after Lucy was born, Henry's behavior started to change.  It really deteriorated after Ellie Kate died and of course we blamed his behavior on all that Henry had to deal with in his little heart and mind.  He was only 3.5 years old, and that's a lot to take in for a little man.

My Sweet Smiling Boy!

One Year
 
Happy Henry


Since that time, Henry's behavior has worsened, although we have desperately tried to help him in every way possible.  Henry has been in individual counseling and group counseling.  We also did PCIT training with him, which is quite intensive.  We've worked with counselors and doctors and nurses, all trying to help Henry.  Last summer we finally resorted to a psychiatrist. 

Henry missing Ellie Kate

You may remember that we ended up being assigned to a precious physician who once attended Bridgeway Church with us, and had also watched Ellie Kate so we could attend the service.  Upon walking into that psychiatrist office, all of my fears melted away as I realized that the Holy Spirit had brought us there - that the Father had navigated and set things into motion better than I could have hoped or planned.  With our physician's help, we started Henry on a plan and he also eventually received several diagnoses.  Again, this isn't far-fetched by any means, seeing that Henry has faced so  much in his young life.  With the prayers of our physician, we were continuing on with our treatment, although we weren't seeing much of a change. 

One of Lucy's therapists heard me talking about Henry's behavior and had some suggestions and asked a few questions.  She told me about PANDAS, a rare auto-immune disorder that affects children and causes drastic changes in their behavior.  She had mentioned this to me a year or two ago, but we didn't get very far with it.  It is rare and a fairly young disorder, and not much is known about it, so not many doctors are very knowledgeable about it. 

PANDAS had entered my mind the last few weeks, although I kept thinking about how we didn't get far the first time I mentioned it.  But then again, this therapist has known Henry since before he was born, and she has seen his drastic change in behavior.  She had seen how hard we tried and knew what all we had tried, all to little or no avail. 

Early last week, the Holy Spirit had PANDAS burning so hot in my heart and mind that I couldn't stop thinking about it.  I researched it as best as I could.  I prayed about it, and I KNEW without a doubt, that God wanted us to test Henry for this rare disease.  I called our physician in the psychiatrist office, and she ordered the blood testing right away.  I picked up the orders and took Henry in for his blood work two days later, and on Friday we received the news . . . Henry DOES have PANDAS. 

Now, what the heck IS PANDAS??? 

"PANDAS/PANS is an infection-triggered autoimmune condition that interferes with normal neurologic activity.  In PANDAS/PANS patients, antibodies recognize and mistakenly attack normal receptors and antigens found within the brain.  This molecular mimicry-based attack can be directed against dopamine receptors, lysoganglioside, tubulin, and other neurologic targets located within the brain.  Binding can interfere with, or cause over-stimulation of neurologic activity.  This can contribute to a whole host of movement and neuropsychiatric disorders, OCD, and abnormal neurological behavior.  Often, this condition may be treated only symptomatically with neuropsychiatric drugs, but the underlying basis is an infection triggered autoimmune disorder attacking the brain".  - Moleculara Labs

And get this, Henry has almost ALL of the PANDAS/PANS symptoms!  Do you know what this means for our Little Man?!  It means that, as far as we know, it has been this autoimmune disorder that has been causing his behavioral issues!  It means that he truly hasn't been able to control himself.  It breaks my heart to know that Henry really has been telling the truth - that he can't control his thoughts and actions, but I now have hope in knowing we have a diagnosis.  And while there is no cure, there are things we can do to help Henry and his symptoms.  Can you imagine the freedom this will bring to Henry?  To our family?  I just cannot even tell you!!!  And to think, it was the Holy Spirit who told me to ask that Henry be tested!  God is so good to help US take care of Henry in the way that he needs to be cared for. 



We have started the new treatment for Henry and have already started seeing a difference (we had the results on Friday and our physician started his treatment that day!).  Mike and I are SO relieved, even though PANDAS is a serious neurological condition.  Henry is relieved to know that something is going to help him and he is also relieved to know that he won't be getting in trouble as much, bless his heart. 

The leading PANDAS/PANS doctor happens to be at Boston Children's Hospital and just "happens" to be the same neurologist that presented at our NKH Conference this past October.  I met him there as he was talking about NKH and now I hope to visit with him about Henry and PANDAS.  God works in such intricate ways, doesn't he? 



I want to thank you ALL for praying for Henry in specific ways.  Thank you to everyone who has and is loving Henry no matter what - even when it is hard physically, mentally and emotionally.  Thank you to those who have made life-changes in order to accommodate Henry (Eastlake Elementary,  Bridgeway Church and Bridgeway Kids).  Henry will struggle with this his entire life, unless the Lord delivers him from this.  He will have ups and downs and flares, and we still we need some extra help and extra grace.  However, we just couldn't be more humbled and grateful for the ways you have loved and cared for our son thus far.  Knowing that he hasn't been excluded and hasn't felt left-out, even with his troubled behavior, has been a priceless and precious thing. 

Please continue to pray for our Precious Boy and for our entire family, school family and church family as we learn how to live PANDAS out with Henry. I know the Lord will connect us to the right organizations, the right doctors, the best information and hopefully He will connect us to some other great PANDAS families! 

For More Information on PANDAS:
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispandas/

http://www.moleculera.com/research/

Youtube Video Description

Friday, November 7, 2014

Lifted and Loved

With the kick off of Ellie's Month of Reckless Love, my longings for Ellie Kate were getting pretty intense. One evening we had my parents over for dinner and I just broke down.  All of these hard days are coming up so quickly - faster than I want them to; faster than I'm prepared for them to come. 

I sobbed as my parents both held me.  It was really a special time.  Mike had the boys in the other room happily watching a cartoon, so for once in a long time, I was able to let the tears flow and I was able to share my feelings of loss with someone other than Mike.  Those feelings run deep, not just for EK, although that obviously is where my heart has been struck the most.  Over the past several months, baby Kylee, Ellie Kate's friends Makenna and Alyssa, and my friend Jenni all went to Heaven within days/weeks of each other.  My heart has been full with questions as to why God does what He does and why He does it when he does.  I know He is Sovereign, but when you are mourning, the Truth sometimes flies out the window.  That's why you have to grab it when you see it, and hold on to it with all that you haveOur feelings change but Truth does not.  Jesus is Truth.

This same week I was contacted by an old and dear friend who, along with another friend, wanted to help our family in specific ways.  I was overjoyed at a renewed friendship more than anything, and I was truly encouraged in realizing that God had forgotten about us.  I mean, I know He hasn't forgotten about us, but sometimes it feels that way, and sometimes it feels like He forgets the little things we need or desire.
 
Within a matter of days we were blessed with Henry's first ever REAL bedroom furniture (and it is gorgeous, family heirloom pieces)!  The boys BOTH have their first REAL mattresses! Not only that, but the boys were able to order their very own bedding sets, which is a first for them.  You should have seen their faces as they scrolled through the choices online.  The medium Tumbleform feeding chair, which we needed for Lucy to safely sleep in at night while on continuous feeds, was mailed straight to our door; an extravagant gift that the Lord used His people to lavish upon us. 

My spirits and my heart have been lifted in knowing that I am NOT forgotten by my God.  He sees our needs and those special wants we have in our hearts.  He bestows them upon us just when we need them - physically, spiritually and emotionally.  Yes, My God is concerned with my emotional and spiritual well-being too! I'm so incredibly grateful that God used these two families to love on us this way. I mean, who gives family heirlooms and furniture sets??  Who orders special-needs equipment for another family (it's costly, ya'll!)?!!  THAT is some "Reckless Love". 

Speaking of reckless love - the first gifts from our "Ellie Kate Wish List" came in this week!!!  In the last two days, we've received seven packages full of wonderful things for http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdfthe patience at OU Children's.  It feels my heart with joy to think of handing out these gifts on Ellie Kate's birthday, December 4th.  Here's the list in case you want to check it out:
 In Honor of Ellie Kate McLaughlin - Amazon.com Wish List

Our Very First Packages for the Month of Reckless Love!!

I'm happy to say that my joy inspired me to put Ellie Kate's Christmas tree up this week too.  I was so excited about not being forgotten about by friends and by the Lord, and I was so excited to have a tangible reminder of My Girl up in our home, that I just couldn't wait any longer to get it up!  I unwrapped each packed ornament with care and I was struck with the sweet memories that flooded my heart with each and every one.  The tree is so special as it holds ornaments that Ellie made at school, a few she's made at her birthday parties (she IS a December baby, after-all), along with things that remind us of her - Tinker Bell, Hello Kitty, ballet dancers . . . there are even a few ornaments from special friends that were sent to us last year that now have important places on the tree.



 I hope these pictures bring you joy, Friends.  I hope you remember that the LORD remembers you and your needs, your wants, your desires, down to the very detail.  He gives us above and beyond and does so when we least expect it, always where He alone can get the glory.  And remember - our feelings will fail us but the Truth of God never will.  Go out and love recklessly today! 












Saturday, November 1, 2014

Hope Link Halloween 2014

Last night was our annual Hope Link Halloween Party! As usual, it was a blast and we had friends in and out of the house all night long. We wouldn't have it any other way!





The girls far outweighed the boys this year, and as you can imagine, we saw man Elsa and Ahna's. I still sit in bed this morning dreaming of how darling Ellie Kate and Lucy would have been dressed as Elsa and Ahna - they are perfect for the parts! And I just know that Ellie would adore "Frozen", just as Lucy does, just like every other little girl in America. I wonder if The Father will allow Our Girls to dress up like this in Heaven - just once, even if if its just for their Momma. I know, I know - many of you are saying, "we won't even worry or think about those things in Heaven!" But you know what? God does place desires in our hearts and Heaven will be the fulfillment of all things good and perfect here on earth. To me, it isn't out of the question that My Girls may run around Heaven a bit in those
costumes (Please no theological debates)!







We had several Transformers, a Kevin Durant, a cheerleader, a princess, and of course our own Lucy Belle as Cinderella! I think the costume winners were the Haas Children who dressed as Elsa, Ahna, Olaf, and Svelt! They were all just too cute. And my favorite part? That EASILY was watching
Lucy's eyes and face light up with joy the entire night! She adored having her friends there in her home, in her space. One of her favorite friends, Emory was there and she was dressed as Elsa - Lucy's favorite. I'm telling you, these little girls have a very special bond!'






From hot dogs and chili to gourmet pumpkin pie and salmon - everything was yummy and a good time was had by all. I'm so grateful that we have a home that we are able to open up to others. I'm grateful that my parents taught me hospitality. I'm grateful too that Hope Link families have the chance to visit and enjoy the community bond that we share. It's all just so priceless.







IMPORTANT: we are very quickly approaching the month of December, Ellie's month. We will once again be doing Ellie Kate's Month of Reckless Love, so be sure to watch for updates in the coming days. This is truly one of THE most important things to us as a family. I promise to update more as soon as my computer gets back from bring fixed (hopefully).

With Hope,
Ryan

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