Monday, December 28, 2015

The End is Upon Us

The end of the year is almost here and the end of Ellie's Month is upon us.  I dread this time, when the celebrations end.  The focuses are no longer on the Savior and His miraculous birth, nor on the Little Girl who is celebrated by so many near and far.  Decorations are put away and the music stops - that beautiful music played everywhere you go, preparing the way for the Baby who would save the World.  Life goes on; it moves on into another season.  The grocery stores are already stocking Valentine's gifts and decorations!  Seasons are fleeting, but I rejoice in knowing that next year, we will once again celebrate Ellie Kate with you beside us - and in some strangely mysterious and beautifully crushing way, once again, we will have the awesome privilege of celebrating Ellie Kate's life and death along with the birth of The Savior of The World.  

We do so hope that you will end Ellie's Month of Reckless Love in a strong way - giving, serving and loving in some radical way before that Ball drops and Ole' Lang Sine is sung.  Will you do me a personal favor?  Would you tell us about those last few actions of reckless love this month?  We would LOVE for you to text, email, message or post on Ellie's FB page, letting us know what doors God opened for you!  It truly would mean so much.  Many of you may not be comfortable in sharing, but I assure you - this isn't boasting; this will be encouraging to our hearts as Ellie Kate's parents.  Seeing your posts will stir others on to go out and do the same!  I cannot wait to see (and read) all the ways God moves through you and your family these last few days of December.  


Several Sweet Friends have asked about ways to give as the end of the year approaches.  All three of the things listed here are important to us, and I've provided a small explanation beside each one.  If you are still looking for ways to give and receive tax exemptions, you can do so by donating to any one of these organizations which are very dear to our hearts (you can click on the links in BLUE):    

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


*Give to OKC Hope Link- - a ministry 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. 


Thank you for your faithfulness during this past month, Friends.  Your participation, your support, your involvement, your love, the way you've remembered so tenderly . . . it has lifted our hearts and our spirits more than I could ever share - my words could never do it justice.  We love you dearly.

With Hope,
Ryan

Saturday, December 26, 2015

A Heaven-Day fit for a Princess

It's hard to believe that it's been three years since I last held My Little Girl in my arms - three long years since I last smelled her hair, kissed her mouth, touched those dimples in her hands.  I can't believe we've made it this far - that we have survived THREE years without Ellie Kate.  There were many times when I didn't think that was possible!  Gratefully (and ONLY by God's grace), we are still here . . . and we are okay; better than okay, really.  We are GOOD.  Even though there are very bad times and very bad days, even when my heart feels like it will physically burst over the loss of Ellie Kate, God has allowed me to be happy and joyful.  




Thank you for the many ways you supported us this week.  The pictures and videos you've sent us of your balloon releases in Ellie's honor have lifted our spirits, just as those beautiful pink balloons flew up to the sky.  Thanking you is just not enough for me and for Mike, so we are asking the Holy Spirit to come close to each of you, allowing you to taste our great love, respect and deep gratefulness over the many ways you've honored Our Daughter this week.







Balloons were let go all over the world, including this last bunch, sent from Spain! 


One last thing we wanted to leave you with tonight - Our friend, Rose Michael wrote a book called, "The Secret Place". God gave Rose this special picture of Ellie Kate in the "Secret Place" of Heaven, very shortly after her death.  The first time I read it, it was breath-taking to me and I am eternally grateful for the peace God has brought me through the message of this little chapter of the book.  I hope you enjoy the words and the pictures God places in your mind as you read this excerpt:


"THE PRINCESS"
by Rose Michael

We passed by many walls of testimony and I was so surprised to see so many names I was familiar with in the Bible next to a mother believing for a lost child or a young man trusting God for provision for his family.  They all had one common thread, their faith in God.  The wall of testimonies was the Hall of Faith.  Just like in Hebrews eleven all were there by faith.  

 As we were standing in front of a large stone wall, I saw a beautiful little girl dancing and twirling and laughing in the center of the room.  She looked like a little princess.  When she saw the Lord, she ran up to Him and jumped into His arms.  He began dancing with her, singing a song to her as they danced.  She was delighted to have His full attention and nothing seem to matter but the two of them.  I watched as the Lord carried her in His arms holding her tightly as they danced, telling her how much He loved her.  I had sat down on the bench waiting for them and read the name Ellie Kate written on the wall in front of me.  Just then they walked over to me and the Lord said " Let Me introduce you to My special friend, Ellie Kate."   Before I could say anything she reached up to me and hugged me tight and kissed me on my cheek.  Then off she went skipping and singing, ready for her next adventure.  
 "She is one of My favorites",  He said with a twinkle in His eyes.  I knew He truly meant it.   I started to ask why her name was written down on the wall of testimony but He spoke before I could ask,  "Let's read her story together".

 "My darling daughter Ellie Kate was born December 4, 2005 and graced us with 7 years of life before returning home to the Lord.  She was born with a rare and terminal genetic disorder that prevented her from walking or talking or even eating as we do.  But that did not prevent Ellie Kate from lighting up a room and touching everyone's lives that she came in contact with.  She had a special relationship with Jesus and drew people to Him.

I am constantly reminded of how close to the heart of God she really was on this earth and how she is experiencing His presence in a way I can only dream of.  Through our little girl's life God has given my husband Mike and I our calling in life - to reach out to families with disabilities. So many doors of opportunity have opened up to us because of our precious Ellie.  It is not something we would have chosen for ourselves or for our daughter, but nonetheless we have allowed the Lord to use for His purpose and His glory.

 She touched the lives of everyone she came in contact with, anyone who saw her picture, even anyone who heard her name.  All without a word ever spoken!  What an honor and privilege it has been to be Ellie Kate's mother.  Through the heartache and  happiness and sorrow and complete joy of this journey, I stand in awe of the beautiful tapestry woven by God."


I could feel the love the Lord had for this little girl and her family.  I could not speak, but waited on Him.  He cupped my face with His hands and looked deep into my heart and spoke, "My perfection was completed in little Ellie Kate".  No more was said. I understood.  He inhabited her completely.  Her body may have not worked as we think it should, but her spirit was perfect and pure and whole.  No wonder people were drawn to her.  He dwelled in her with nothing interfering with His holiness.  Only a little princess made to praise the Lord!"


 Your testimonies I have taken as a heritage forever, For they are the rejoicing of my heart.
 (Psalms 119:111 NKJV)

He who has received His testimony has certified that God is true. 
(John 3:33 NKJV)





Tuesday, December 22, 2015

T'was the Monday of Heaven Week

I believe I have run out of words - the right words to encourage you to go out and recklessly love those around you; the right words to tell you what we are continuing to face as a family.  I don't have words intricate enough to express my feelings for this week that I dread, the anniversary of Ellie's death. The only thing I can say, is that our wounds are still fresh and our groanings truly are too deep for words.  There has been great beauty though, as the Lord has drawn me to Himself this Advent - hope, newness, providence, and peace in the midst of pain.  

I do have one request: on Ellie's Heaven Day, December 23rd, we would love to see pink balloons released in her honor.  If you are able to do that, please post or send us pictures.  If that isn't possible, please go out of your comfort zone to love on someone you normally would not.  You can post that as well as an encouragement to us, knowing that "reckless love" IS being done this month in honor of EK (we haven't had many posts about it this year).


Since appropriate words escape me this evening, I'd like to leave you with quotes taken from,"The Greatest Gift - Unwrapping the Full Love Story of Christmas", by Ann Voskamp.  Did you know that Advent is a Love Story?  It truly is!  A Love Story for us as Believers, and it all started with this wonderful gift that changed humanity and eternity forever -  the Gift of Jesus Christ, who himself fulfills Love's true meaning.  

I pray that you read these quotes with Christmas, with Advent, with the Gift of Jesus in mind . . . 
"Strange, this familiar Father of prodigals
whose love, too much for one lifetime,
wills that we shall share the 
feast of forgiveness and joy
in the epilogue of eternity."
J.F.Wilson

"He was created of a mother whom He created.  He was carried by hands that He formed.
He cried in the manger in wordless infancy.  
He, the Word, without whom all human eloquence is mute".
Saint Augustine


"It was not suddenly and unannounced that Jesus came into the world.  He came
into a world that had been prepared for Him.  The whole Old Testament is the story
of a special preparation . . . 
Only when all was ready, only in the fullness of His time
did Jesus come".
Phillips Brooks


"A prison cell, in which one waits, hopes . . . and is completely
dependent on the fact that the door of freedom has to be
opened from the outside, is not a bad picture of Advent".
Dietrich Bonhoeffer


"I am more sinful and flawed than I ever dared believe, more loved
and welcomed than I ever dared to hope".
Elyse M. Fitzpatrick


"Assurance grows by repeated conflict . . . When we have been 
brought very low and helped, sorely wounded and healed, cast down and raised again . . . 
and when these things have been repeated to us and in us a thousand times over, 
we begin to learn to trust simply to the word and power of God".
John Newton


"God is coming!  God is coming! All the element we swim in this existence, 
echoes ahead the advent.  God is coming!  Can you feel it"?
Walter Wangerin Jr.



PRAYER:

  • Tonight, while getting suitcases out of the attic for our get-away trip this week, Mike fell out of the attic.  He fell backward from the top of the ladder, landing first on his ankle.  It is now swollen to the size of a soft-ball and he is in a lot of pain.  Mike had osteomyelitis in that very ankle when he was a teenager.  His fall busted open that giant scar, but only in a small part of it (no stitches needed).  We aren't sure if we can even make it to our get-away spot, even though it isn't far.  Having things up in the air isn't exactly how we wanted this "peaceful" time to be.

  • It's the toughest week of the year for me, which means it has the propensity to be a hard week for the rest of the family.  Praying in specific ways, as the Holy Spirit leads, would be wonderful.  I am weak and have been having grief-sickness (this is something that hit me during Ellie's hospice time and continued on and off until now; it feels like you've been hit by a truck matched with extreme nausea.  I DON'T want it this week.  I want to be happy for My Children.  I want to make it special for them!  

  • We desperately want the children to be happy and to feel special, without much sadness at Christmas time.  We want to focus on Jesus' birth and not solely on Ellie Kate's death.  Henry is struggling and we've encountered the above situations to boot.  



Saturday, December 19, 2015

"Remember When"

Last weekend, Mike and I had the absolute joy of attending a special annual Christmas party.  It's a party with some precious people, whom we dearly love.  It's something all of us look forward to every year and it's extremely life-giving, FUN and meaningful.


One of the main reasons we love this get-together is because, at the end of the night, when our bellies our full, we open some bubbly and share about what God has done.  We're talking deep, intimate sharing with community. Maybe it's the low-lights and Christmas tree.  Maybe it's the fire in the fireplace or the fact that our taste buds are still reeling from an incredible, four-course meal.  I believe that it's because of the presence of the Holy Spirit for as, when two or more are gathered, there He is also!  It doesn't have to be at church.  It can be everyday conversations or annual gatherings with friends.


Each year, our Host leads and asks us to share - sometimes it's about what we are thankful for; sometimes it's what we are asking Him to do in the New Year.  This year, we talked about "Remembering" - remembering what God had done, especially over this past year.  I must admit, it was HARD for Mike and I, and neither one of us jumped in to share.  Remembering the goodness of the Lord over the last year?  He has done SO many good things, but we had just left our home where Lucy is still having diarrhea, Conner is still feeling left out and forgotten - worrying that he won't get that computer for Christmas, and of course, Henry.


In all honesty, we had gone to the party, just knowing our cells would ring, causing us to drop everything and head home to a Henry who's PANDAS was once again causing him to be out of control.  After all, we were wrapping up the WORST week Henry had EVER had, thus one of THE worst week's WE'VE ever had as a family (barring the loss of Ellie Kate).  Our hearts were heavy and they didn't immediately turn to gratefulness.  Have you ever felt that way, Friend?


The most beautiful thing happens when we gather together and start sharing their true hearts, without holding back . . . we spur each other on!  We gain courage by hearing the stories of others.  As Believers, our faith is sparked by hearing about God's faithfulness playing out in the lives of other people - especially when you hear about God's intimate faithfulness, His Providence, within the lives of people who are precious to you.


So then, after everyone had shared, it was our turn . . . 

REMEMBER - I remembered back to the last few years when we were sitting right there at that very table, so bruised and bloodied; we were cut to the very core and it felt as if every bone in our bodies had been broken.  Our Daughter had DIED, and she had DIED during a time where people were being light-hearted, out spending money, wrapping gifts, singing songs out loud and even humming (I DO realize that much of it is a facad and that many people are hurting during this time of year, but you get the picture).  At the party the first year after EK died, there were times I just wanted to run out of the house because I didn't want to hear about vacations, or happy children, or upcoming Christmas parties, gifts, etc.  None of that computed with me, and sometimes (many times) it still doesn't (that is normal and okay - for those of you who are mourning).

I also remembered our friends crying with us at that very table, sobbing over us, praying over us, laying hands on us as we cried out loud over the loss of Ellie Kate and as we shared our hearts. This is important:  I remember sitting there in desperation, wondering how I could go on - how WE could go on as a family, because it just didn't even seem possible, ya'll.  You cannot prepare for death, in any way, shape or form, and we were gutted at the earthly loss of EK.  I was gutted right there at that table, especially that first year and I truly wondered if and HOW we would be able to come back to the table for Christmases in the future.  


God has been FAITHFUL, and even though we have been through the trenches, we are STILL HERE.  Even when we haven't been faithful (and that has been many-a-time), God HAS been.  We have survived, and I think we have even thrived!  God has brought us closer to each other and closer to HIM.  He has brought us closer to our children and closer to our parents.  WE HAVE MADE IT.  HE HAS BEEN FAITHFUL!  And though I have always known that in my head, I KNOW it now in my heart . . . He will ALWAYS be faithful, no matter what.  This is not a fake report or response, I assure you.  This isn't a cliche that I'm writing about.  This is TRUTH, from my heart.  GOD.  HAS.  BEEN.  FAITHFUL.  And we are still here, and we are happy.

 This basket contains letters and cards we received immediately after Ellie's death.  I left them out the entire first year as a reminder of the impact of Ellie Kate's life.  I got them out this week to remember the encouragement, love, kindness that they represent to us.  Just seeing them on the table makes my heart leap with hope, knowing we are loved.  I remember reading them, sometimes in a heap on the floor, and yet God continues to bring us through it, three years later.  
He is faithful and He never leaves or forsakes us.  



If we can go through the worst possible thing that can happen to a parent, we can face anything, as long as we have the Lord Jesus Christ.  The best part is, once I've asked Jesus to be my Lord and Savior; when I've asked Him to take over, believing that He is the ONLY way to eternal life . . . there is NOTHING - NO THING - that can separate us from His Love, His protection, His faithfulness!  Jesus will ALWAYS be with us.  God will ALWAYS be for us.  Holy Spirit will ALWAYS be with us, protecting us.  He will NEVER leave us.  He will NEVER forsake us, and even if it doesn't feel like it, He truly is there in the hardest, darkest of times, holding us close. 


 I tell you this because I have lived it;  I LIVE it day in and day out.  I could NOT live, I could NOT survive, I could NOT thrive, I could NOT have any sort of happiness or joy, if it were not for the gracious love, protection and faithfulness of the Lord Jesus Christ.  


That's what I shared on Saturday night at our large table, with our precious friends who have walked through the valleys with us.  I remembered God's FAITHFULNESS and even though I came to the table down and worried and frustrated about Henry, finances, doctors, etc, etc, etc,  - God reminded me that, if He carried us through the death of Ellie Kate; if we lived, survived and thrived and had made it once again back to the feasting table with friends . . . He WILL do it again with this set of circumstances we are now facing.  


Remembering is a GOOD thing and I challenge YOU to do it today.  How has God been faithful to you in the past?  What has He carried you through?  Is there a time in your life that you didn't think you could survive?  If you are reading this now, you DID survive it, My Friend!  

Do you know Jesus as your personal Lord and Savior?  It isn't a gimmick or trick.  Do you want to experience His faithfulness to you and to your family here on earth?  Do you want to be able to "Remember", looking back over your life to see the many ways God has stepped in to protect and provide for you?  Do you want to spend eternity with God, with your child, with loved ones who knew the Lord?  Oh, Friend!!!  What do you have to lose?  All you have to do is talk to Him!  There are NO magic words, despite what anyone may tell you, and you only have to ask Him once and for all, forever!  Ask Him to take over.  Believe He IS who is says He is - the Son of God, the Savior of the World, the Only way to Heaven.  HE IS LOVE and SO much more, and apart from Him, I could do nothing, I would be nothing.  Apart from Him, I could NOT live this life I've been given.  What better way to celebrate Christmas, the birth of Christ, than to give your life completely over to Him?  My heart longs for you to know Him - not just head-knowledge, but heart-knowledge. 

 If you have any questions, please just message me or call, text me anytime.  It would mean so much to know that the Lord has moved in your heart during Ellie Kate's month and that He captured your heart, making you forever His during the "Month of Reckless Love".  


Go out today and remember what God has done!

Ryan






Monday, December 14, 2015

Season of Hope

Would you do me the honor of watching this video? It was created by our dear friends, Brian and Allison Dalke.  It so beautifully captures what the mission of Our Family is all about. 

Video: https://www.youtube.com/watch?v=6yiRlKVNcag&feature=youtu.be

Hope Link is the non-profit we started in memory of Ellie Kate. Along with Scott and Amy Haas, we started growing into a support group for mommas of kids with rare, serious and undiagnosed disorders.  Since we began, we've added new groups, new events and new opportunities for entire families to be involved. We support our Hope Link families in many ways, such as scholarships to medical conferences, and like this year, adopting a few of our families who most need assistance this Christmas.  It's beautiful to watch what THE LORD has done.  He alone gets the glory, ya'll.

Hope Link is BEYOND important to us, Friends.  It is our life as a family.  It is our mission as a family.  We try to live it out on a daily basis.  It's a ministry God dropped into our laps once Ellie Kate was born - once we were thrown into the world of special needs.  It's an entirely different world with entirely different heartaches and struggles.  We have different goals and aspirations.  The life of the special-needs family is unlike most families you see because, even though we want to fit in and participate, we will always, somehow be different . . . a person in a foreign land.   Hope Link gives special-needs parents a place to speak the same language.

If you weren't able to purchase gifts in time for Ellie Kate's Month of Reckless Love, please consider buying a gift for a Hope Link family member this Christmas.  Ten families have been adopted and this amazon wish list contains each and every gift that was listed by each family member.  We ensure it will get to the family in time for Christmas, all wrapped and pretty, making them feel extra special and loved this Christmas.

Amazon Wish List: http://www.amazon.com/registry/giftlist/1O32SS218DBC9

Thank you for letting me share a part of Ellie Kate's legacy here with you tonight.  HOPE, it's also part of Advent.  Isn't it beautiful how The Lord intertwines so many things, working them into a beautiful, ornate picture, that on our own, we could never dream up?

Jesus, bring us HOPE this year.  Bring it to my friends. Bring hope to all who read this blog.  Bring your hope to the lost and dying world, Father.  Help us BOLDLY share your hope with others this Christmas.  

*THANK YOU to all who have been praying for Henry.  We still don't have appointments or new connections, but we are praying that those things will happen soon.  Will you pray that along with us?  Henry went back to school today (he was out all last week), but he still isn't back to himself yet.  His OCD is still very high and he has terrible separation anxiety, not wanting to leave my side.  Please pray for the flare to settle, for his little brain to settle, for his heart to be completely comforted by the Holy Spirit.  Your support means the world to us - you have NO idea how much a card, phone call, text, email, kind word means to a family like ours when we are in the "trenches".  - Ryan






Wednesday, December 9, 2015

Prayers for Henry



Friends, we covet your immediate prayers for our Sweet Henry.  Henry is in a PANDAS flare and has had a terrible "episode today", which lasted from around 10am-5pm.  Henry finally fell asleep and has stayed in deep sleep since that time, and we couldn't be more grateful. 

 "Thank you" to everyone who has been praying specifically for Henry this afternoon - you have know idea how much it encourages MY heart as Henry's momma.  When I was holding Henry as he was biting and kicking me, I got a glance of the responses to my FB post about it, and my heart was instantly lifted.  God has surrounded us with such an amazingly loyal group of friends, family and even strangers who so faithfully stand by our side.  The Lord knows we couldn't do this without such a great support team, and that includes all of you.  


Please continue to pray for Henry.  Things got pretty serious today, VERY serious in fact.  My Dad was over helping and Mike had to come home from work.  It was intense, scary, maddening, frightening, discouraging, and caused us all to run straight to The Throne to surrender it all, including our Precious Boy (the Lord keeps putting the image of Abraham and Isaac in my head).  We don't know what's going on inside of Henry's body or mind, but God sure does.  It isn't just something people say, folks - it's absolutely true.  God knows every single cell in Henry's body.  He knows what is functioning and what isn't.  He knows the quirks and mis-fires, and we are asking Him to show us where they are as well.  


Ways to pray: 

1.  For ease of Pain for Henry - his brain swells in a PANDAS flare and he has severe headaches.  His body is on sensory overload as well, meaning that every little touch is multiplied by a thousand.  What feels like a brush of the arm to you or me can feel like someone trying to BREAK his arm.  I know it may sound out-there, but I assure you, this is the state in which Henry has been today.  

2.  Pray for PEACE - specifically, peace over Henry's little brain.  He is so intelligent, so smart, excelling in every subject at school - but in a flare, he cannot think straight and his thoughts are mis-firing all over the place.  His mind has no peace and neither does his body.  He cannot stop moving and that isn't an exaggeration.  Henry will become enraged and start throwing things, breaking things, etc all bc his mind is crying out for PEACE.  

Please pray for PEACE over our home as well.  Peace is my favorite word and theme for this time of year, Ellie's Month.  I long for peace to take over during this difficult month, and I'm longing for it even more now!  I want the peace to be so heavy that we FEEL it when we walk in the door.  

3.  Pray for protection - Henry has been involved in some dangerous things today.  He could have been very hurt in a multitude of ways, but thankfully he wasn't.  We want that protection to continue over Henry.  That angels would surround his every coming and going from our home and that he would be protected from every car, from every person, from every object that could cause harm.  

4.  Pray for wisdom and guidance - we are DESPERATE for guidance, ya'll.  I mean, truly desperate.  We don't have one doctor to spear-head Henry's PANDAS at this time, but that isn't because of lack of effort on our part.  We need to know what to do and we need to trust the person telling us what to do.  Of course the Holy Spirit will lead us, but we need medical professionals who are as concerned about H as we are!  We have been incredibly dissapointed and even let-down by his current psychologist, which of course hasn't help this situation in the slightest.  Should we try IVIG treatment?  We need a doctor to approve that and we would need Henry to be admitted asap.  Should we "wait it out"?  Do we immediately take him to a specialist out of state, and if so, how will God provide for that??  

Please pray for Henry's other caretakers, including his teachers at school.  Would you pray that God would put the right words in their mouths, for just the right times, just for H?  Would you pray that He would lead their actions to be those that would ONLY benefit Henry?  Would you pray for endurance and hope for each of them as well?  

5.  Pray for Conner and Lucy - Conner already has expressed that we must give a lot of attention to his brother and little sister, and for the very first time, he's starting to feel left out and left behind.  Please pray against these feelings in Conner.  Pray for confidence in himself and confidence in us as his parents.  Pray that Conner will feel well-adjusted and extremely loved; safe and sound, wanted.  We do our very best to show him this, but lately H and L truly HAVE demanded all of our attention.  Lord, please lift burdens off of Conner's heart and mind!!  


Thank you for praying.  As always, you will never know how much it means to us - at least this side of heaven.  Thank you for standing beside us and with us, especially through the roller coaster loop of PANDAS and all it entails.  


Choosing Hope because of Christ -
Ryan

*********************************************************************************
For more information on "In Honor of Ellie Kate - A Month of Reckless Love", please visit the following blog post:  http://www.thewonderfullymadelife.blogspot.com/2015/12/a-month-of-reckless-love-its-only-just.html

FOR WAYS TO GIVE while receiving a tax write-off (simply click on the links in blue): 

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

*Give to 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. 

Saturday, December 5, 2015

A Month of Reckless Love - It's Only Just Beginning!


December, THE MONTH OF RECKLESS LOVE!  Don't worry, Folks - there are still plenty of ways for you to still participate and to continue Ellie Kate's legacy of love.  I will get to more of that here in a moment, but you can start right now by changing your Facebook Profile picture and even your background photo as well!



Yesterday would have been Ellie Kate's TENTH birthday!  This ten-year mark has been quite emotional for me, as I still remember the sites, sounds and smells surrounding the hospital and her birth in such a real way.  In our minds, Ellie Kate will always be SEVEN, for that is the age she was when we last saw her.  A beautiful, happy, joyful seven-year-old girl with gorgeous green eyes and light brown, curly hair.


I must say - I didn't want yesterday to end!  It was just such a happy day and Mike and I were smiling, laughing and remembering with joy, the entire day.  He was able to take off of work this year, which was a huge gift to me.  Late Thursday night, I dug through Ellie's "Precious Box" and found so many treasures - endless school projects with Ellie's fingerprints and handprints, school pictures, artwork from Wonderfully Made at Bridgeway Church . . . the photo albums seem to be the most precious though, marking milestones in Ellie's life, along with everyday things as well.  Happy days, sad days, hard days, triumphant days - they are all there, documented in photo form for us to remember, always.  I am so grateful to have these tangible reminders.

"Ellie's Spot" decorated for her Birthday and for Christmas

Something so sweet happened and it was just too precious not to share here with all of you . . . as many of you know, we are incredibly grateful for Mike's current job at Ascent Resources. Mike works in oil and gas, which is a very tough industry right now.  All of the low gas prices take a HUGE toll on companies like my husband's (side note - those in Oklahoma need to pray for prices in oil and gas to rise because so much of our state depends upon this industry).  Mike's company has been supportive of our family in every possible way, loving us through hospital stays, ER visits, last-minute emergency calls from me, when I've needed Mike to come home and help with Henry during a bad flare.  These same folks donated gifts in Ellie Kate's honor - gifts to be delivered to Children's.  They also gave us birthday cards for Ellie Kate, including precious messages from each co-worker.  I've never seen something so thoughtful, especially from such a large group.  It took my breath away to see Ellie's name written on the cards and to see the prayers and encouraging words, especially when most of these people never even met EK.  As her mother, I felt honored and touched that, even after three years, My Daugther's story is still being shared to new people and new people are learning to recklessly love because of all that Ellie Kate endured here on earth.  Thank you, Lord for this most unexpected, tender gift from you!  




One of our MOST favorite parts of Ellie's Month of RL is delivering gifts to OU Children's Hospital in her honor.  Yesterday was the day we took gifts door to door, along with our friend Cara from Child Life.  These are the gifts YOU donated and purchased through the Amazon Wish List!  We were overwhelmed that, after THREE years, you would still be willing to give - you would still be willing to take the time to get online and purchase gifts in Ellie Kate's honor.  Some of you brought gifts to our house or brought gifts to Mike's office.  We also delivered darling parent packets this year - "Thirty One" bags full of comforting items to make their hospital stay more bearable.  Knowing that sacrifices were made on behalf of little ones at OU Children's, and that they were made in honor of OUR Daughter . . . it just means more than you could ever possibly know or understand, although I do pray God will give you a taste of our gratefulness!  

Our Annual Pic before the Big Delivery of Gifts!
This picture doesn't do justice to the many things that were donated this year!  There were SO many gifts given out last night and we were also able to share Ellie's story and encourage the hearts of families like ours!

Each gift, each item had either a special letter included or a darling "Reckless Love"  sticker, which were made by Jay Lohman at Boss Printing Design.  Jay and his sweet wife Sarah donated these cute stickers and got them ready in less than 24hrs!  What a gift!

Stickers include our blog address so that people can read Ellie's entire story!

There are many of you who've contacted us, wanting to contribute in some way or give gifts in Ellie Kate's honor.  Even though we've already delivered our gifts to Children's Hospital, there are several ways you can still give - even by purchasing gifts for children who are sick or suffering from serious and rare diagnosis like Ellie Kate.  Hope Link, the non-profit we founded in EK's honor back in 2007, assists families who are in similar situations as us.  There are several aspects to Hope Link and we are incredibly proud of all that God alone has done in and through this sweet ministry!

This year, Hope Link has TEN families who have been adopted for Christmas.  Each family was chosen by Hope Link leadership and is deserving and in need of assistance. Each family has at least one child who is living with a serious disease or disorder.  In several cases, families have multiple children with serious diagnoses.  Medical bills pile up, even when you are blessed with good insurance coverage and a great support system. Our goal in adopting our Hope Link families is to lift the burden of purchasing gifts when they are trying to make ends-meet.  This allows the entire family to focus on what's really important this Christmas - the birth of Jesus and time with each other.

 We've asked each family to choose three items for every family member.  There is a Hope Link Amazon Wish List  - you can easily go here and buy a gift for one of these family members.  It would mean the world to us for you to bless a Hope Link family in Ellie Kate's honor!  So, if you didn't get to order from Ellie's Wish List before her birthday (yesterday), if you are just now joining in on the blog OR if you are looking for another way to go out and recklessly love others this Christmas . . . click HERE and purchase one of these Christmas gifts. By doing so, you will bring so much joy to these families whom we so dearly love!  


Thank you for continuing to pray for us as we face the ups and downs that this month brings.  We covet your encouragement, love, prayers, texts, cards, calls and everything else that Reckless Love leads you to do.  Please do let us know how you are serving and loving those around you! 



With HOPE in Christ,
Ryan

*********************************************************************************
FOR WAYS TO GIVE while receiving a tax write-off (simply click on the links in blue): 

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


*Give to 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. 




Tuesday, December 1, 2015

In Honor of Ellie Kate - A Month of Reckless Love!



It's here! It's here! It's here!  December has arrived, and with it comes Ellie's Month - the Month of Reckless Love.  It's the month we celebrate Ellie Kate's birthday (December 4th) and her heaven-day (December 23rd), and we will celebrate her everyday in between by actively loving and serving those around us who are too easily forgotten.

Gifts have been pouring in - gifts YOU have given in Ellie Kate's honor.  These books, toys and therapy items will be given to children who are currently inpatient at OU Children's Hospital in Oklahoma City.  Mike and I have the privilege of going door to door, along with Child Life, allowing kids to pick out a toy and/or book of their choice.  Can you imagine the joy and excitement that comes from that?!  You are sick in the hospital, stuck in your room because it's flu/RSV season AND it's Christmas-time . . . talk about being down in every possible way!  Trust me - we've spent so many holidays in the hospital with the Girls, and we know first-hand how heartbreaking and defeating it is to be up there when the rest of the world is out celebrating, shopping and going to Christmas parties. By giving in this way, we are doing something that WE know will means SO much to these children AND to their parents.  Some of them won't have much of a Christmas, yet because of you, on December 4th, they will get to choose a wonderful new gift.  The child will feel loved, the parent will feel loved.  They will know they are NOT forgotten.

Going to the hospital wouldn't be the thing we would selfishly choose to do on Ellie Kate's birthday.  She celebrated several birthdays there, including her last birthday.  We had a small family birthday part for her that night, Hello Kitty decorations, pizza, cake and all!  No, it isn't easy to be there on that day, but we choose to act, stepping out of our comfort zone, to love and serve others in honor of EK.  We choose to love others and serve through our pain, as Jesus leads us to do.  We don't do this because we are super-human (trust me, we are anything BUT!), but because we want to love as we learned to love Ellie Kate - with reckless abandon.  That's how she loved those around her as well.  This is what we are calling you to do this month in her honor . . . show some "Reckless Love": 

  • "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. 

So, go ahead and change those Facebook profile pics to one of Elizabeth Kathleen McLaughlin, and feel free to use our cute specific "Reckless Love" photos shared here on the blog today.  Three years later and ya'll still encourage us, support us and honor Ellie Kate by participating in this special month of heartache and unspeakable joy.



For those of you who want to purchase a gift, but weren't able to order one in time for it to get here before December 4th - there are still some BIG ways you can participate!  Hope Link, the non-profit we started in Ellie's honor, has adopted TEN families for Christmas this year.  Each family has a child with a rare, serious or even undiagnosed disorder or disease.  Each family has been given the precious responsibility of raising, protecting and providing for children with many extra needs.  Life can be overwhelming, and when it comes to Christmas and adding extra costs to an already strained budget . . . well, sometimes it's just too much.  You MOST DEFINITELY will be recklessly loving in Ellie's honor by purchasing gifts from the Amazon Wish Lists for the families (Hope Link ensures that each family will receive their gifts before Christmas):  http://www.amazon.com/registry/giftlist/1O32SS218DBC9

There are other ways to give and participate, and we welcome and encourage you to jump in with both feet - giving until it's uncomfortable, loving until you are out of your comfort zone, giving when it becomes a sacrifice to your family (see below for details).

THANK YOU for loving the world around you in honor of Our Precious Daughter.

In His Hope,
Ryan

WAYS TO PARTICIPATE AND GIVE:

1. Purchase items on our Amazon Reckless Love Wish List for Children's Hospital: All interactive toys, movies and books donated will be given to ill children at OU Children's Hospital on December 4th, Ellie's birthday (Ellie spent most of her birthdays, including her last earthly one, there at OU).  

2. Purchase items from the Hope Link Amazon Wish list, providing Christmas for families whose children suffer from rare, serious and undiagnosed disorders: http://www.amazon.com/registry/giftlist/1O32SS218DBC9

  
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
Sissy's 7th Birthday at OU

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.

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