Three Little Girls

It's a sad time within our community.  The community of Moore and our own special-needs community has really suffered loss lately, and it's so hard to make sense of it all. To be honest,  I can't make sense of it, and I never will be able to; until, that is, I am reunited with Ellie Kate and I see Jesus face to face.

One of these sweet little girls died of the flu.  It seems so senseless, right?  A typically healthy girl, hit with the flu, and all of a sudden she has fluid on her brain because of an extremely high fever caused by the virus.  And then she's with Jesus.  And her family is left to find a new normal, with hardly any notice.

One little girl went to school with Ellie Kate, or should I say, Ellie Kate went to school with her.  She and her sister were popular at Wayland Bonds Elementary, with their beautiful smiles and determined personalities.  Even though this sweet one was physically disabled, she was extremely smart and knew exactly what was going on around her.  I always stood in awe watching her - she had friends.  Real and true friends.  She was completely cognitively aware and had the most beautiful curly hair (other than that of my girls, of course).

The first time I met her, I had stocked her momma.  Really I had just seen them in the grocery store when I had run in for one item.  I could see that both girls were extra special and I wanted to track down that momma and meet her.  Her girls seemed close to Ellie Kate's age and I wanted to get to know her as we had just moved from North OKC to Moore.  I'm sure I scared that woman to death as I ran up to her in the check-out line, asking all kinds of questions and talking to her beautiful girls.  It was an honor to briefly know this little one, and many of our precious friends are close to this family, and are hurting and mourning, yet rejoicing.  They are glad the earthly suffering is over.  But her sister, friends and parents are left . . . without her, to find their new normal.

One little girl is a dear friend of ours, a dear friend of Ellie Kate's.  Kelsy is on hospice and is very close to meeting Jesus face to face.  Her little earthly body is failing rapidly, and her family and friends have surrounded her in every possible way.  I have no doubt that Kelsy feels loved, safe and secure.



Yesterday, Mike and I had the privilege of going out to Kelsy's house with our precious friend, Holly Hall.  Holly runs "Ellie's Legacy",  where she takes hospice photos for children like Ellie Kate and Kelsy.  Holly did such a beautiful job capturing Kelsy and her family.  The giftings God has given to Holly are absolutely incredible, but the fact that Holly allows Christ to use her giftings to love others in this way is really a remarkable thing.  Who chooses to go out and take pictures of a dying child; especially one that they do not know?  God has given Holly the strength to do it and she does it all so bravely.

 Kelsy and her Mommy

You can never be prepared for death

Beautiful, long eye lashes

Holly and I visited today, talking about how bittersweet it is to be involved in these precious hospice pictures.  We've done this three times now, and each time has been vastly different, but also very intense.  It gets overwhelming sometimes, but it is also an extreme honor. I can honestly say that it is one of the greatest honors of my life.  Oh, Father!  What a complete privilege this is!  Thank you for using us in this way.  Give us courage, peace and strength.  May you alone be glorified in these sweet endeavors.  

Kelsy loved being surrounded by her sisters yesterday

I don't pretend to know exactly how each of these mommas are feeling right now.  I have a taste of what they have seen and heard and what they have yet to face in the days, weeks, months and years to come.  But it's only a taste and everyone's loss and journey is different (wouldn't life be miserable if we were all the same?!).  Even though I don't know exactly how all three are feeling at this moment, I am praying in specific ways.  And you know what?  YOU can pray for them in specific ways too.  Even if you've never suffered loss.  Even if you don't have a critically ill child.  You can pray for all three women, specifically.

• Ask God to heal their hearts.  
• Ask Him to prepare their hearts for the viewings, for the services, for the casket and funeral decisions that Kelsy's mom will soon make.  
• Pray that the Lord would bring extreme peace to each heart and that He would capture each thought that isn't of him.  When a mom loses a child, her mind can race in a million different directions and it can mourn a million different things at once.  
• Pray that the Lord would reign in feelings and that he would oversee every conversation, every word that is said around and over each woman.  

You can pray specifically for the families - for the brothers and sisters left behind; for those daddies who mourn not being able to protect their little girls from death (yes, that is something these daddies face).  Pray for grandparents, pray for the little friends within these communities who are affected by these great earthly losses.  I'm asking you to intercede on behalf of these families who are suffering much.  

This world has so much loss and hurt, doesn't it?  That's why we need Jesus.  And yes, Friends - He DOES give us WAY more than we can handle so that we know that we need Him.  These folks have way more than they can handle right now, I am sure of that.  And we can ask the Lord to lift their burdens.

How do you handle loss?  Who do you go to?  With all my heart and with all that I am, I encourage you to go to Jesus.  Even if you never have before, cry out to Jesus and He will meet you.  It's absolutely not religion, legalism or rules - if it were, I would be the first out the door.  What He offers is Freedom.  He is the ONLY way to eternal life and abundant life (full, rich) here on earth.  There could be nothing more wonderful than that!!  These children are in the presence of God.  Where will you be when you die?  

"And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope." 

(I Thess. 4:13)

He Gives and Takes Away

"The Lord gave, and the Lord has taken away; 

blessed be the name of the Lord.” Job 1:21

Me, Holly Hall and Jenni after a night of prayer

Today, my friend Jenni Kufahl met Jesus face-to-face.  God fulfilled the promises He had given to Jenni and to her family; it just didn't look the way we had all hoped.  God is faithful, and in times like these I can only cling to the things that I KNOW to be true; the things that God's Word tells me are true.  I am trusting that He is who is says He is - that He is the Blessed Controller of All Things (I Tim.6:15).

My heart does not hurt for Jenni.  Jenni is healed and whole and she has completed all that God had planned for her to accomplish on this earth!  She is spending eternity with her Father.  I do not pray for Jenni any longer because she is complete.  But, my heart cries out for her family as I imagine what they may be facing.  And to Jenni's momma, my Coach, my heart bleeds because I know the pain. I too have watched my daughter come into the world and leave this world, and it is sometimes too much for one to bear.

I keep thinking of my favorite memory of Jenni as we were brought together these last few years.  My favorite memory is a sorrowful time - when Jenni, suffering from stage four cancer, came up to the hospital to be with me and with Ellie Kate on Ellie's last day in the hospital.  Jenni sat with me as I cried that day, as they went over instructions on how to care for Ellie's port, which Jenni also had for her chemo.  Jenni helped me carry things down that day.  She went with us through the tunnel the nurses had made for EK, cheering her on as we left.

Jenni took a picture of Ellie and I in front of the big Christmas tree in the lobby of the hospital.  It was the last picture I have of me and a conscious Ellie Kate.  She helped me load Ellie in the van and she even waited in her car to leave until we pulled out.  I hope her family will one day know of this story because Jenni's presence that day meant the world to me.  I knew she was sick.  I knew her own body was failing, and yet she still served, loved and prayed over us.  That was a picture of who Jenni was.  Jenni was like Jesus. 

 And you know what?  God has been faithful.  Jenni would want you to know that.  Even in death, He has been faithful.  I have so many little things that I could share of how He has tied things together in beautiful ways.  I'm sure so many of Jenni's friends feel the same way!  He has brought us all together for such a time as this, and we have been able to witness a great testimony of God's faithfulness through the Merrell's and the Kufahl's.  What a great honor!

Please take the time to watch Jenni's testimony.  I pray the Holy Spirit will move in Jenni's words even now.  I pray that your heart would be moved and that you would be pointed to Christ.  Jenni knew where her eternity would be spent.  She would want you to have that security as well, Friend.  Jesus - The Way, The Truth and The Life.  No one comes to the Father, no one has eternal life, no one has abundant life, apart from Him (John 14:6).

Jenni's Testimony

Thank you, Father for healing Jenni.  Thank you that she is with you and with My Ellie Kate, complete and whole forever! Thank you that we can trust you as the Blessed Controller of All Things.  It won't ever make sense to us here on earth, Father.  We believe; help our unbelief (Mark 9:24).

Overflowing

It's been a while since I've written, and that's odd for me - especially during such a special, awkward and sacred time in our lives.  Writing here is such therapy for me - it helps me process my thoughts.  Even if it isn't read, I am thankful that I can put my words out there.

As you may know, our family has escaped to my favorite place in the world.  Only some of you know where that is, but I can tell you that a beach is involved.  Unfortunately, where we are staying doesn't have wifi (ugh!).  Nonetheless, I instantly, I felt peace upon arriving.  Peace with nature, peace with myself, peace from my Sweet Father-God.  Peace comes in His incredible creation.  So here we are, hiding out for these difficult days, as a family, while getting to see extended family and friends in the area.  It's been precious so far, even though my emotions have been up and down.

Here's a taste of where we are . . . 

I'm of course reliving those last precious days with Ellie Kate while we are here.  Some of the memories are very, very painful.  When you watch your loved one suffer so terribly, it really does cut you to your core.  How I wish I could have taken that earthly pain away from her!

Thursday, December 19th:  We brought Ellie home from the hospital on hospice.  The night before, Mike had stayed the night in the hospital so that I could get ready for Ellie coming home.  I walked in her room on December 19th and was struck with how she looked.  She had truly taken a turn for the worse.  Every time I tried to feed her, she would scream in pain.  She was already starting to bruise all over her body.  At that moment, I knew that we had made the right decision as her body truly was breaking down.

That evening was a hard one.  We had planned some fun and special things, but Ellie was already in rough shape.  I realized the plans I had made were just that - MY plans, and not what was best for my Daughter.  So, we played it by ear.  And we loved on Ellie as much as we could.

Friday, December 20th:  On this day, Ellie still had a bit of energy.  She tried to engage with us a few times.  She touched the Christmas tree. And, by God's goodness, our friend and photographer, Holly Hall, was able to come to take hospice photos. Ellie was going downhill so fast, and our minds were trying to wrap around that.  We obviously had never done hospice pictures before, and neither had Holly; but God was with us all, and He inspired this artist.  The result was precious pictures, some of which we've never posted.   We invited her therapists and teachers over to stay goodbye that evening.  She had a burst of energy that night, and I'm so thankful that we were able to watch her "hop" her friends out the door, like she loved to do with any visitors.  It was precious.  I will warn you now: For those that know EK, the following pics may be hard to see, as she is so unlike herself . . .

Saturday, December 21st: This day, Ellie was going in and out of consciousness.  I held her most of the day, except for the times of vomiting I had brought on by my nerves.  My friend Jenni Khufal came to visit, even though she was suffering (and still is) from a rare and serious form of cancer.  We received gifts from Miranda Lambert, Taylor Swift and Carrie Underwood - Ellie's favorites.  I like to think that she could still here us some, as well as the music we played her, and the prayers we said over her.

By that evening, one year ago tonight, we knew the end was near.  Nurse Mindy stayed with Mike and I.  We put her in bed with us, loving on her through the night.  It was the most precious night of my life.  See, Ellie never like to snuggle with me.  I think it was because we never physically bonded when she was an infant.  After all, she was on the ventilator for almost two months, then was in and out the hospital for most of that first year.  But that night, we snuggled like never before.

I will save the rest for later this weekend.  We so covet your prayers and blessings for us during this time.  As the end of our "Firsts" without Ellie Kate is drawing near, I find myself full of so many emotions, which I'm sure is normal.  I'm just glad to be in a peaceful place with my family, away from the normal and day-to-day, away from our home and those last hard memories.  I am SO GRATEFUL, friends.  God is infinitely good, and I'm only beginning to see the outskirts of His kindness.

Also, remember that the Month of Reckless Love in Honor of Ellie Kate is still going strong!  You still have time to jump in and participate with active, purposeful acts of kindness and love to those around you.  Here are a few ways you can still participate . . .

December 23rd: Ellie's Heaven Day! Post pictures of you and your family releasing PINK 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.  Although we do have good insurance coverage, many of the NKH meds and treatments are not FDA approved, and thus are not covered.  With Helping Hands, we turn in our receipts and they can pay they directly.  It's great accountability, which we are grateful for.  

*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. 

*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.

Overflowing With His Love,
Ryan

Not so Merry and Bright

Yesterday I attended the Life Celebration of one of Ellie's best friends - Annie.  Ellie and Annie were good friends for several reasons.  Really, I think they were destined to be friends because God had them together so much!  Annie and Ellie Kate were in the same class at school for a while.  They also spent many times in the hospital together, including most of fall of 2012.  We took them on walks together around the hospital and on little adventures to the End Zone here at Children's.  Ellie loved Annie, and she always reached out for her.  It was a precious thing to see as her mother.  My daughter had a friend!  And, I have no doubt that Ellie was there to welcome Annie to Heaven last Sunday.  How much fun they must be having running and dancing in their new bodies together!

I was struck by many things yesterday, one being the fact that so many precious doctors and nurses were there to support Annie's family.  All of those same doctors and nurses have cared for Ellie too, and many of them also attended Ellie Kate's service.  I am blown away by the love these professionals have for their patients.  I am forever grateful for tender hearts.  We are blessed to have medical teams who really want what is best for our daughters.  I'm thankful for the reckless love they showed by coming to Annie's service.

Today, a sweet baby named Gabriella Faith was born.  Today, Gabriella Faith also went to be with Jesus.  This little girl's parents knew ahead of time that their daughter would be born without a skull, and that she would not live long.  Still, they chose to carry Gabriella Faith until God was ready to call her home.  And tonight, along with our beloved friend and photographer Holly Hall, we took pictures of this sweet girl.  They will be memories and keepsakes that her family can forever hold on to.  Holly is loving recklessly through her "Ellie's Legacy", which does hospice pictures for special children in honor of Ellie Kate.  And many are loving Gabriella's family recklessly through this terribly difficult time.

As I was texting back and forth concerning baby Gabriella today, I found myself humming "Silent Night".  And then I was hit with how unfair this life is.  So much loss.  So much grieving.  Not just those who have lost little ones or are dealing with a special-needs child, although that is where our heart surely is.  I'm thinking of many people who have lost loved ones, those who have terrible diagnoses, those who feel all alone and abandoned for various reasons.  My heart truly bleeds for those who are hurting, and I long to make the world understand that we MUST rise up and love one another in word and in deed.  I long to to make the world understand HOW to love well, as I am learning that not everyone knows just how to love, or are afraid of doing it (no guilt, that is just how God has made us - all different with different giftings!).

Please friends, during this time of hustle and bustle and Merry Cheer, do not forget the lowly.  Do not forget the hurting.  Take a moment from your Christmas wrapping and decorating, from planning that big meal; take a break from putting lights up on your house, and go and love and serve and do.  Love in word AND in deed.  It's really not that hard.  I've shared with you a few ways to do just that, and I know the Lord can show you INFINITELY more than I can!  I'm asking Him to open all of our hearts to the world around us.  

Thank you for keeping us in your prayers as we are still in the hospital.  Thank you for praying specifically for Annie's family and for Gabriella Faith's family as they face the sting of death.  We love you all dearly.

Because of HIS Reckless Love,
Ryan

He Has Given Me More than I Can Handle!

Ever hear the saying, "God can't give you more than you can handle"?  Well, I'm here to tell ya' that it ain't true.  That's right.  I do NOT believe that God won't ever give us more than we can bear, more than we can take.  On the contrary, I think when God is really working in us and through us, we will constantly be faced with more than we feel that we can take.  Sometimes Friends, it is just.too.much.

Yesterday was one of those days.  We took our first family photo without our Beloved Ellie Kate.  How do you prepare emotionally for something like this?  I surely do not know.  We took two cars "out to the country", where we met our precious friend and photographer, Holly Hall.  The entire way there, Henry was talking about Ellie Kate.  I know it was weighing on his heart to know that she wouldn't be in the picture, even if he couldn't put that in words.  

I didn't have much time to mourn Ellie not being with us because Henry was acting so terribly.  Really and truly, it is probably the WORST I have ever seen him act.  I think his heart was overwhelmed and he didn't know why, so he acted out and disobeyed.  I have no idea how Holly was able to get ANY sort of good pictures, but she sure pulled it off.  Yep, she's a miracle worker.  

Isn't it lovely?  And this is just a sneak peek!  Friends, One is so obviously missing to me.  Ellie Kate is missing.  For a moment last night, during Henry's screaming, I imagined EK hoping around in the grass, laughing and enjoying the crisp air.  I guess it was good that I couldn't let my mind wander for too long, as Henry needed me.  

When we got home last night, I had a few moments to myself to break-down.  I stayed in the shower for a long time, weeping.  I walked to Ellie's closet where her clothes still hang, and I smelled her shirts.  They no longer smell like her.  With every one of those little outfits comes a precious memory - a memory of her wearing those clothes on a particular day or for a specific event.  It's just such a precious thing.  I picked out a shirt of Ellie's and held it all night as I cried.  I'm just being real folks, because the Church needs to know what real hurt is like. 

This morning, I literally woke up with my heart hurting.  I do have some cardiac issues going on, so it didn't surprise me too much to feel that heaviness on my chest.  It's more than anxiety or fear.  It is true pain, true pressure.  It's too much.  And that is why I KNOW, without a shadow of a doubt, that God has truly given me more than I can handle with the death of my Daughter.  If it wasn't too much, then I wouldn't run to Him.  Does that make sense?  

Do you have something in your life - a hurt, a constant struggle, a terrible memory, that just seems too much?  Run to Jesus.  Run to Jesus.  Run to Jesus.  That, Dear Ones, is what we are supposed to do with our heartache.  That's how God has made us - to NEED Him.  Cast your cares on Him [1 Peter 5:7]. Throw those cares to Him, throw them at Him - He can take it. Surrender them to Him as a holy sacrifice. Just give them to Him, Friends.  It's all we can do and it's the way to freedom, the way to comfort, the way to healing.  It is THE ONLY way to break-free of our hurting hearts; it's the only comfort and hope that we have.  

I am not happy that Ellie Kate is no longer here on earth with me.  I wrestle with the Lord about it every single day. However, I am grateful for the way God is using this to cause my need for Him to grow.  Would I so desperately need Him for every breath if it weren't for the heartache?

 The broken heart I have (physical, spiritual, emotional) has no hope apart from my Lord and Savior.  I give Him my broken heart at this moment, and I will give it to Him again in a few minutes when my heart gives way for the millionth time.  I will continue to do it because HE IS MY HOPE, and He alone is yours.  If He isn't your only hope, Sweet Ones - If you don't know Jesus as your Lord and Savior, ask Him in.  Ask Him to save you from this lost and hurting world.  Ask Him to save you from seperation from Him in eternity.  Ask Him to be your Lord - the ruler of your life.  It is FREEDOM, not rules or shackles.  HE is FREEDOM.  

Psalm 102: Hear my prayer, O LORD; or  let my cry come to you! 2 Do not hide your face from me in the day of my distress! Incline your ear to me; answer me speedily in the day when I call! 3 For my days pass away like smoke, and my bones burn like a furnace. 4 My heart is struck down like grass and has withered; I forget to eat my bread. 5 Because of my loud groaning my bones cling to my flesh. 6 I am like a desert owl of the wilderness, like an owl of the waste places; 7 I lie awake; I am like a lonely sparrow on the housetop.  11 My days are like an evening shadow; I wither away like grass. 12 But you, O LORD, are enthroned forever; you are remembered throughout all generations. 13 You will arise and have pity on Zion; it is the time to favor her; the appointed time has come. 14 For your servants hold her stones dear and have pity on her dust. 15 Nations will fear the name of the LORD, and all the kings of the earth will fear your glory. 16 For the LORD builds up Zion; he appears in his glory; 17 he regards the prayer of the destitute and does not despise their prayer. 18 Let this be recorded for a generation to come, so that a people yet to be created may praise the LORD: 19 that he looked down from his holy height; from heaven the LORD looked at the earth, 20 to hear the groans of the prisoners, to set free those who were doomed to die, 21 that they may declare in Zion the name of the LORD, and in Jerusalem his praise, 22 when peoples gather together, and kingdoms, to worship the LORD.23 

 Psalm 109:21 But you, O Sovereign LORD, deal well with me for your name's sake; out of the goodness of your love,deliver me. 22 For I am poor and needy, and my heart is wounded within me. 23 I fade away like an evening shadow; I am shaken off like a locust. 24 My knees give way from fasting; my body is thin and gaunt. 25 I am an object of scorn to my accusers; when they see me, they shake their heads. 26 Help me, O LORD my God; save me in accordance with your love. 27 Let them know that it is your hand, that you, O LORD, have done it. 28 They may curse, but you will bless; when they attack they will be put to shame, but your servant will rejoice. 29 My accusers will be clothed with disgrace and wrapped in shame as in a cloak. 30 With my mouth I will greatly extol the LORD; in the great throng I will praise him. 31 For he stands at the right hand of the needy one, to save his life from those who condemn him.

Ryan