Bad Dreams, Disappointment and Ellie Kate's Month of Reckless Love

This week, I had a beautiful dream but first, let me fill you in on a few key things so you can really get the jest of it all . . . 

As you may know, to celebrate Ellie Kate's home-going the past three years, we've created Amazon Wish Lists full of books, games and toys for patients who were staying at OU Children's Hospital.  YOU would purchase items directly from the Amazon Wish Lists,and those items were sent directly to our home.  Mike and I would hand-delivered those gifts to patients at OU on December 4th, Ellie Kate's birthday.  After all, Sister Sue spent that last birthday inpatient, where we had a simple little party for her in one of the waiting rooms.  That place, those halls, those rooms are sacred to us and it has been a JOY and delight to hand out gifts to patients while sharing Ellie Kate's story and legacy of Reckless Love; a legacy we want to live out for the rest of our lives. 

Hopefully you've heard that God wanted us to do something different this year. He clearly told us to adopt a small family as part of celebrating Ellie's Month, with the idea of us all coming together in honor of EK, loving, serving and providing for this little family.  The Father literally gave us the perfect family, who's needs are great.  God has also told us to provide for fellow NKH Families around the world,  affected by the same rare and terminal genetic disorder as we are.  We've been led to partner with NKH Crusaders to further "Ellie Kate's Helping Hands", providing wishes of both needs and wants this Christmas.  

So, now that we're all on the same page, let's continue with 

that beautiful dream the Spirit gave to me . . . 

THIS DREAM:  You know the kind, when it's so real you could hear, touch and smell during it's entirety; where you wake up bursting with JOY, grateful for God's faithfulness?! 

Oh Friends, I do so hope you've experienced this in your lifetime!  

In this particular dream, I FELT God's faithfulness, goodness and provision. I was closely watching the Amazon Wish Lists for Ellie Kate's Month of Reckless Love.  In this vivid dream, I literally saw the list for the family we've asked you to join us in adopting this Christmas. I also physically saw the NKH Christmas Wish Lists through NKH Crusaders.

At first in my dream, I saw the Amazon Wish Lists, with the many pictures of items these Sweet Families so desperately need, along with a few little items they want.  Big tears filled my eyes as I realized NONE of the gifts had been purchased and Christmas was almost here! The dreamy tears  flowed and turned into dreamy SOBS.

Out of nowhere, it was as if the Father sweetly lifted my face with His finger.  He had been standing there, looking at the lists with me the entire time and all of a sudden, in some ultra-speedy way, people started purchasing the gifts from the lists!  "PURCHASED!" popped up over and over and over again, and Mike and I were filled with JOY and excitement!

In my dream, I kept praising and thanking God for His provision, for clearly stepping in and fulfilling the needs of families HE alone laid on our hearts.  I praised Him for allowing us to physically SEE His provision, knowing EVERY wish had been granted, knowing EVERY need had been met, knowing EVERY gift would be delivered in time for Christmas morning.  In the dream, I worshiped God as Jehovah Jireh, "the God who provides", and that's when I awoke, still filled with JOY and THANKSGIVING!

Yesterday (Thanksgiving Day), I excitedly looked 
at those same Amazon Wish Lists and I was shocked.  

My dream was coming true - when looking at the lists,  

I saw NOTHING has been purchased off of ANY of our lists. 

Unfortunately, I realize I haven't posted or promoted our lists like I have in past years. Even so, I am terribly disheartened, and being raw with you, I'm sick to my stomach thinking about our Adoptive Christmas Family and our fellow NKH Families, for at this point, NONE will receive the items they need, nor the items they long for this year. 

At this time, our families will not have a single present under the tree in honor of Ellie Kate's Month of Reckless Love, and the mere thought of that breaks my heart into a million pieces.  

Questions flood my mind . . . 

• What have Mike and I done wrong to make it so no one has participated so far? In years's past, most wish lists have been filled and sent to our home for wrapping by this time! 
• Did changing our giving "focus" for the Month of Reckless Love bring too much confusion? Instead of handing out gifts to patients at Children's Hospital, we've clearly felt led to provide Christmas (wants and needs) to a precious, local family in need.  We've also decided to support our fellow NKH families in need, filling their wishes for the "Ellie Kate Helping Hands Project" through NKH Crusaders.  We know God told us to do this, but where is His faithful proof?
• Has it been too long now since Ellie died? Have people just simply, innocently, forgotten about Ellie Kate and The Month of Reckless Love we do in her honor?  It has been four years this December 23rd, and it's completely understandable if people forget, or no longer feel the urgency in supporting these efforts which to us, keep Ellie Kate's name and legacy alive.

As I said, this December 23rd marks FOUR YEARS since Ellie Kate's passing.  FOUR YEARS since I last held her, since I last felt her heartbeat or kissed those gorgeous, pink, full lips and those sweet little earlobes.  To us, it's like yesterday and at moments, like a lifetime ago.  I have learned to never, ever expect people to really "get it".  I don't expect people to understand or remember the anniversaries, birthdays or hard days such as holidays, family celebrations.  Only those who've truly lost a child of their own, whom they've raised, birthed, then buried - only they can bear witness to the type of pain, heartache;  the waves of grief we've tasted too frequently.  Only they know the sleepless nights (like Thanksgiving Night for me), the grief-sickness, and everything in-between.

The holidays are especially rough as you see those close to you happy, continuing to make memories with those they love; you realize again that there are no more memories to be made with your child. There's a sting when walking by that section of clothes where you used to shop for your daughter.  No more Christmas wish lists for him or for her.  There won't be any presents for them  at the Family Holiday Gathering, and why should there be?  They are gone, but the feelings can be ever-so-tender.

This is when the dagger-thoughts start creeping in, "Do they even realize she's gone from the Kid Table? That there's one less place setting again this year?".  "Do my parents, my brothers and sisters, even the cousins - do they remember his/her laugh and mannerisms?".  We often wonder, especially during the holidays, "Will anyone say her name? Will they share a memory (esp without me having to instigate it)?" or maybe, "When we go around the table saying what we are thankful for, will anyone mention My Child?  Or has it simply been too long for everyone else but us?".

It's during this most difficult time that our family needs encouragement from the Body of Christ - from our friends and family around the world.  Is it selfish to shout your needs to the world? Well, I believe the Lord wants me to share my needs and brokenness with you and with those around me, because He wants others to see Christians (true followers of Christ) hurt, mourn and question during life's most tragic times, just like any other human do.  The Body of Christ is called to share each other's burdens and most of the time, I won't know your burden unless you share it with me.  It's what we're called to do; it's in our nature, in our calling as Followers of Christ. Jesus called His Disciples to sell all they had to give away so that they could FULLY follow Him.  He gave them mandates to love, serve and give to the hurting, the widowed, the poor (physically poor and poor in spirit), and the same is true today. Friends, because of the Holy Spirit, we are fully capable of loving these same ways! 

I wish I could explain how important it is to our family that Ellie Kate is remembered, that her legacy continues through others who've known Ellie Kate personally; by those who have known OF and ABOUT EK  and by those who've known and experienced reckless love 

because of her precious life!

Dear Friends, thank you for sticking with me this far on this post.  Let me wrap it all up here below and although I know it isn't a spotless package wrapped perfectly and without flaw, I DO invite you to still open it, to still take part!  

Read here until the very end and click on the links 

to see how you can give, what you can give and who you can give to.  

Christmas Family Adoption 2016

 Our Christmas adopted family  is in great need of almost everything, as they hardly have any possessions of their own. They sleep on beaten-up mattresses, laying directly on the floor.  Their furniture (given to them or taken from out of dumpsters) has holes from cigarette burns and are covered in stains.  They sleep with little blankets and mom wears the same pair of jeans each day.  All three family members share a little flip phone, even though the daughter is in high school and the son is in 2nd grade.  They also do not have a car or computer.   

Although momma especially is incredibly clean and keeps their little home immaculate, she can only use the washer and dryer at the apartment complex.  This only happens when they have detergent and quarters to pay for the machines.  Father/husband is out of the picture and isn't responsible for any financial help at this time (he physically is unable to assist for the foreseeable future).  

Our Adoption Family is just Mom, her teenage daughter and their little son, desperately trying to figure out how to survive, how to find a job while not having a car to get to and from work, etc.  

Would you please consider purchasing an item off of the Adopted Family's Amazon Wish List? 
(click on the link above to see the family's lists) 

 Remember, this Amazon Wish List gives you great ideas (and sizes too), but you do NOT have to order only from Amazon.  You can purchase these items, or even similar items!  There are items from all price-ranges, too!  It was difficult to get the family to list items other than just socks, underwear and groceries, which is further proof of how humble and genuine they truly are.  I had to prod and poke them to choose things for an Amazon Wish List, and I encouraged them to "go big" and put a few extravagant wishes on the lists as well.  You never know what the Lord might lead an individual or Community Group, Life Group, Small Group, Sunday School class, Church, or even one individual to give this Christmas season!!! 

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

"Ellie's Wish" for fellow NKH Families from around the World

As part of the Ellie Kate Helping Hands Fund through NKH Crusaders (which is the main organization supporting NKH families as well as NKH research around the world), these special Amazon Wish Lists were created specifically for individual NKH families.  These particular families were chosen because of their background within the NKH Community and because 

of the needs their children with NKH have at this time.

  Families were encouraged to choose items that would bless them this Christmas - gifts for their special AND typical children, as well as needs for their disabled child(ren), 

which aren't currently covered by insurance.  

Would you please consider purchasing an item off one of our NKH Family's Wish Lists (click on the link below to see each Amazon Wish List)?

NKH Family 1

NKH Family 2

NKH Family 3

NKH Family 4

God truly IS faithful and I BELIEVE He WILL fulfill each and every one of these lists!  I believe He will meet the needs of these precious people whom He has laid on our hearts, whom He has told us to share with you.  I believe the dream He gave me will come true, and ALL of us will see the Father at work as Jehovah Jireh, the God Who Provides!  

Thank you for taking part of this most important time of year for us; for remembering Our Daughter and through that, breathing life into our hearts once again.  There are many other good and happy things happening and we cannot wait to share them with you!  We will do so very soon, especially since the gifts will start coming in and our hearts will be at peace, knowing you remember and care!

With Gratefulness, Expectation and Love,

Ryan

Hard To Love - Results, Heartaches and Dreams

First off, I want to say, "God Bless".  Seriously, God bless you RICHLY for reading this blog.  May He exceedingly bless you for following our family through these ups and downs, and twists and turns.  There are so many that I have a hard time following them all.  And some of you have been there from the very beginning of our roller-coaster ride - that's a whopping ten years, people.  GOD BLESS, and I mean that with the most sincerity.

There is always that family in your community, in your church or in your town . . . you know the one I'm talking about - the family with the non-stop calamities.  The family who seems to always be stuck in the middle of some sort of terrible muck; the ones always facing hardships, illnesses and loses.  The natural thing to do, when you know of a family like this, is to want to run far, far away.

You don't want to get involved because there is always drama.  You don't want to step in because you could become emotionally drained - heck, you could end up being drained emotionally, physically, mentally, and everything in between.  You think, someone will step in.  They know lots of people.  Lots of people know their story.  Or, you've helped for a while and think, "it's time for someone else to step in and care for these hurting people".  You are not evil to think this way.  It is a true, raw, human response to a train-wreck of heartache.

Oh my goodness friends, I did not want to be "THAT" family, but that is exactly what we are.  I know it and I am learning to accept it, because quite obviously, it is what He wants us to be - at least in this season.

I thought that season would be short and that once we figured things out with EK and got back on our feet, things would settle down and we wouldn't "need" so much from others.  Then, I realized that season would last a bit longer because Ellie was so sick for so long, and then Mike lost his job and we moved in with my Parents for a long time (that's when we moved to Moore).  Then God gave us our beautiful home (He gets all the glory for that and for everything in our home as well bc it is ALL from Him!), and the boys' school was just down the street and we were just a few blocks away from my parents, and we finally were in our own home again!  And then Sweet Lucy came along, and our lives drastically changed and became even richer than we ever thought possible.  We went through a very difficult time of Ellie being so sick, and Lucy also being in and out of the hospital.  The season felt so heavy and more difficult than any before.  Then Ellie passed away, and that has been the hardest season of all.  Now . . . well, now it is a different type of season, but it is still hard, exhausting and we still mourn Ellie Kate's death while also dealing with new and unexpected things.  

Last week, Henry had an EEG, as you may remember. Today, we received the results of that EEG, and they were not good.  The results are not what we expected.  The results could change a lot for Henry - even impacting his future.  Other test results for Henry came in today as well, and they too are confusing and complicated.  We are still trying to take it all in. The Lord is good and He has given us a great peace.

When I picture how I am feeling (I am a very visual person), I feel like I am standing inside of a giant tornado that is angry, swirling, with tons of big things flying through the air around me, spinning and spinning and spinning.  So much unkown, so much that I keep forgetting to do, so much that I want to do and need to do . . . and yet, I am standing still in the middle of it, with peace.  I'm not panicking.  I'm at peace.  But I am still overwhelmed.

Maybe God has made us "That Family" to humble me, to humble Mike - heck, maybe He will use it to humble our extended family too (the Lord knows that they didn't sign up to have us in their family).  I am a "Mercy" person, so I have no problems loving on families that may be labeled as difficult, but being here ourselves gives me more perspective and grace for those who always have things going wrong in their lives.  Maybe God just wants me to have a bigger heart for those hurting in different ways?  I don't know.  I don't know why you stick with us and why some of you have continued to give, love and serve us for these ten years.  

Good things have happened this week too!  God ALWAYS does good in the midst of the bad.  We have to remember that and sometimes even look for the good in it all.  We found out that Lucy will be at Wayland Bonds Elementary until she is junior high!  We get to stay in that wonderful, welcoming, warm school and we couldn't be happier.  That news shifted things for me and Mike and even more confirmed our thoughts of moving.  We were hoping to wait a little longer and save more.  However, we know now that Henry will be on an IEP next year (and likely through elementary), so he will officially be in the special education program as well.  Our DESIRE is to have Henry and Lucy both at Wayland Bonds where they can be at the same school, see the same therapists, and be in the same special ed programs (although they are VASTLY different bc Henry's disabilities are not intellectual disabilities).  Henry LOVES WB as he was in Pre-K there.  Every time we take Lucy to school, he tells me how safe he feels there, how much he loves it, and how he wants to go back.  I want to do that for him - for him to feel safe at school again.  

Tonight we saw the absolute house of our dreams; a house we could stay in forever.  And guess what?  If we were in that house, the kids would go to Wayland Bonds Elementary School!  This house is handicap-accessible, ya'll.  It was custom built for an officer here in Oklahoma City, who became paralyzed and then was tragically killed in an accident.

In this home . . .  Every single doorway is accessible.  Every bathroom is accessible.  The room that would be Lucy's is directly next to ours and it has it's own bathroom, big enough for Lucy's wheelchair.  She could have her own bathroom for her bath chair and her nurses could have privacy! Would you believe that the rooms has pink and white stripes on the walls and a chandelier as the main light fixture?!  It is already made for a Princess!   There is a ton of storage for equipment and formula and equipment (can you tell I am excited?!), along with a therapy hot tub INSIDE the house (not very extravagant, even though it sounds like it).  Lucy could get in, anytime of the day, anytime of the year, and move her muscles!  She could have therapy in the pool.  Henry is also having trouble with severe aches and pains in his legs due to the things he is going through.  We've been giving him hot baths daily, but how much better would a hot tub be - one that is specifically made for therapy?!

This dream is just a dream right now.  We are thrilled to know that something like this is out there - something accessible for people like us.  And it's brave for the family of this officer to sell the house, especially after suffering such a great loss.  God would literally have to move a mountain for us to move in and even MORE mountains to make it happen before school starts.  Our God owns the cattle on a thousand hills.  But I also know that He may not want this for us now, or ever, so I'm not getting my hopes up.  It's just an exciting way to end a very hard day full of not-so-fun news and I dare to say that it gives us hope, in a strange way.  Lord, we trust you with this.  We give you our home and everything that you've given to us.  We give you this dream house and the dreams of ours that come with it.  Guard our hearts.  Give us clear direction.  If it be your perfect will, if it would be the best thing for our entire family, please open doors and move mountains.  We trust you and we rest in the fact that you are all-knowing.  


I admit it - we ARE that family, Friends.  Part of me just wants to apologize to you over and over again for having to go through this with us, for having to know us and be witness to so many heavy things.  Yet, I cannot apologize for my life, my family, our struggles because God is Sovereign, and "there but for the grace of God go YOU (it could easily be you on this journey bc there certainly isn't anything special about us)". I know God wants me to continue to document our ride, our story.  I truly believe that we need to learn from each other - when we see, when we know, then we learn.  We've learned to love deeper, serve with purpose, give sacrificially, and so much more through our seasons, and our prayer is, that as you read our journey, God will teach you the very same things and even more!  

God Bless,
Ryan