Precious In The Sight of The Lord

Happy Heaven Day, My Sweet Ellie Kate . . . 

Psalm 116:15, "His loved ones are very precious to him, and he does not lightly let them die." TLB

Psalm 116:15, "Precious in the sight of the Lord is the death of his saints." ESV

Psalm 116:15, "Precious (important and no light matter) in the sight of the Lord is the death of His saints (His loving ones)."  AMP

It All Comes Down to One Thing

My emotions have run the gamut this past week as we face the anniversaries of Ellie Kate's last days with us. I can't help but remember all of those moments; the feelings that come along with them return to my heart and it's often been overwhelming. I'm glad though - because it means that I love my daughter fiercely, recklessly, with all that I am.  I want to feel these things so deeply.  I know many of you won't understand that, but those of you who have lost a close loved one certainly will.  

I've felt a lot of anger this weekend.  Lucy's been crying almost non-stop because of another virus she has contracted (NKH compromises your immune system so Lucy can catch the strangest things really easily).  I had to take her to OU Children's on Friday, the exact same place we were two years ago with Ellie Kate.  Why, Lord?  Why would you have us there during the same time when my heart is hurting so?  Lucy's crying has our nerves shot and I just became so angry with our lot in life.  Why does this stupid disease have to be in our family?  Why did Ellie Kate have to die?  Why does Lucy have to be so uncomfortable?  Can't you give her relief, Lord?  Won't you give our boys relief? Why do you allow this - this madness that hurts us so deeply and that brings so much stress to everyday life?  I went to bed with hot tears, frustrated and angry.    

Thankfully I woke up refreshed, although still feeling the sadness of memories and feelings that pop in and out unexpectedly (these things will take your breathe away and knock you to your knees).  The children performed a short Christmas program today at church, which took our minds off of things.  Conner carried in a banner that he had made, with a name of God on it (He chose YAHWEH). Little Lucy was an angel and was placed on the very front row next to two precious girls who took care of her the entire time.  It was sweet to watch these little girls, around 4-5 years old, patting Lucy and handing her the "chewy" during the songs.  It was a welcomed happiness that filled our weary hearts and we truly were so uplifted, hearing these children sing about the absolutely amazing Truth that our perfect God sent His perfect Son to this imperfect earth.  Christmas - celebrating the time that Jesus came to earth to redeem mankind in every possible way.  The children were SO full of joy!  If only we could see things so simply and understand the gravity of God's Most Perfect Gift. 

Lucy loved being with all of the kids!

Ellie Kate during her Christmas Program in 2010

Pastor Sam spoke about why God sent His Son to earth.  It isn't just so we would have eternal life.  Did you know that?  It's so that we would experience ALL of God here on earth.  We miss out on so much if we think that Salvation is only about being saved from Hell.  There is just so much more for the life of the Believer.  The "more" is the presence of God; feeling, seeing and hearing Him move in the world, in the lives of others, and in your own life.  It's so much more, and that "more" is the reason I can survive and get through this season.  The "more" is how I can love others recklessly.  The "more" makes it worth it all.  

John 3:16, "For God so loved the world that He gave His only son; that whoever believes in Him should not perish but have everlasting life."

John 17:3, "And this is eternal life, that they may know You, the only True God, and Jesus Christ whom You have sent.  

God’s love for us is not mainly His making much of us, but His giving us the ability to enjoy making much of Him forever. - John Piper

It's SO MUCH MORE . . . 

"All of life comes down
To just one thing
And that's to know You oh Jesus
And make You known"
- One Thing, by Charlie Hall

This was our prayer from the beginning; from the very moment of our Union as a couple before God.  Friends, it is still our prayer.  It is still my prayer.  This journey, NKH, PANDAS, death, heartaches, ups and downs, sharing it all with you along the way . . . it's worth it all if I point you to Jesus.  It's worth it all if somehow, through what we've been through, you see that salvation is so much more than only being "saved" from an eternal separation with God.  It's worth it all if somehow, through our messy life and all of our short-falls, you see that God wants so much more for you - He wants you to know Him personally and He wants you to experience every part of Him.  He is Peace.  He is Love.  He is our Joy.  He is our Provider.  He is our Healer. He is Truth. He is our Abba, our Daddy-God.  His Word is alive and you can experience it's fullness as a Believer.  

Oh, Father!  Thank you for sending your Son in human flesh!  What an incredible sacrifice for the Creator of the universe, to send His perfect Son to a world that would completely reject Him in every possible way.  But you reached out in love, Lord.  You reached out, even though you knew we would fight you and run from you.  We are worth it to you, and I'm so humbled by that.  Thank you for this priceless gift.  

Lord, bring your Joy to our hearts - the joy that can only come from knowing you personally.  Truly, all of life comes down to knowing you and making you known.  Let that be true in our lives.  Thank you for using us in spite of our failures.  Thank you for using our sorrows for your glory.  Thank you for drawing others to your side through the faithfulness of God that they have seen in our journey.  Thank you that, in the midst of suffering and heartache, I can have joy in celebrating the most amazing Gift the world has ever known - JESUS.  
-Ryan

*REMINDER!
Tuesday the 23rd is Ellie Kate's "Heaven Day"!  We would love for you to remember Our Girl by releasing balloons in her honor.  We ask too that you would send us pictures of your balloon releases as they will undoubtedly breathe life into our weary souls!  I cannot wait to see your photos!  Thank you in advance for loving Ellie Kate and our family in this way.  I will be so sad when this Month of Reckless Love is Over!  

Eternity and the "In-Between"

For those of you who don't know, Ellie Kate McLaughlin was born on December 4, 2005 and died on December 23, 2012.  Having everything rolled into one month brings many ups and downs. It's a true, violent roller-coaster that you often want to get off of.  Correction. It's a violent roller-coaster that you simply want to jump off of, and back onto the safety of the non-spinning, non-moving, predictable, stable, ground.   

The truth is that this month has been wonderful.  So many stories of reckless love being demonstrated;   excitement over the gifts for Children's Hospital showing up at our door, Christmas cards hanging in our kitchen, Christmas parties, etc . . .  and then . . . this week everything really hit me.  I'm flooded with memories of two very important times in our lives - in Ellie Kate's life - the time surrounding her birth and those intense early days, and the short time we had at home with her before she went to be with Jesus (three days).

This week I am hit with the smells of Baptist hospital where we were told Ellie probably wouldn't make it through the night.  I can smell the soap and hand sanitizer so clearly.  Bittersweet memories flow as I remember walking out of the meeting with the doctor as Ellie was placed on the ventilator. As we walked out of the PICU  I saw so many people from our church on their knees praying for Our Princess.  It was surreal and I remember exactly how I felt at that moment.  I remember the song that I would hear on the radio so often as I drove to Baptist each day (they told us we weren't allowed to stay with Ellie Kate because she was too fragile), and even the smell of the cafeteria there.

Then there is the heartache of the end and the suffering that Ellie endured.  Those last several hospital stays from September to December, almost constantly in and out.  And then at home on hospice and what we saw, what we heard, what we did, what we felt . . . it's all very real this week.  I am torn to pieces over these dark memories.  They shake me to the core, but then I also see the goodness (yes, goodness) of God in His timing in that all of our family was near.  Everyone got to say goodbye and that wouldn't have happened any other time of the year.

Very conflicting feelings.  Very extreme.  Incredibly intense.  

One day this week, when I was having trouble simply functioning, my Mom  encouraged my heart with Scripture.  In the beginning of our loss, I hated hearing God's Word.  My heart was too broken to hear anything really, but now - oh, I want to know God's heart!  I must be reminded of His goodness and His love!  I must be reminded of eternity!  And that's what my Mom helped me to focus on - eternity and all that Ellie Kate is experiencing.  No more hurt.  No more sickness.  No more time.  No more sadness.  Everything we enjoy on earth, but perfected in every possible way. THAT is what MY DAUGHTER IS EXPERIENCING!

Mom also reminded me to focus on the "in-between", and not just on the dramatic and tragic beginning and end of sweet Ellie Kate's life.  The beautiful, glorious, joyful "in-between" that made up the majority of her remarkably unique life.  Our Daughter led such a rich life! Her viewpoint was simple and happy. EK loved her life. 

Thankfully, I'm truly not used to this deep sorrow and heart-sickness staying with me for such a long time anymore.  I'm so grateful that I have been able to focus on eternity for a while now, so feeling so broken and vulnerable has caught me off-guard.  But, that's what happens when you love much, when you love deeply, when you love recklessly.  And that's how I still love My Ellie Kate. 

I'm not sure how next week will be for us, or even next year and the anniversaries to follow.  I don't know if my body will always fail me during this time, or if I will be able to rise above it all.  I am CHOOSING to rest in these things tonight:  knowing that My Daughter is in a perfect eternity, where I will one day join her AND knowing that she lived a wonderfully, happy life here on earth.   

Peace Like an Ocean

"At times I wake with a fright
only to realize it wasn't night

I hadn't been sleeping this nightmare is real
I can't even guess how my child must feel

He rants and raves screams and rages
Animals like this would be kept in cages

He cries out loud, sure that nobody loves him
His only solace is scripture about the God above him

Some days he wants hugs some days he can't be touched
He falls apart if he feels he is rushed

He hits and kicks and hurts those around him
With an age inappropriate temper tantrum

He misunderstands the tone of my voice
Assuming I am always mad at him as if there's no other choice

Underneath he's sweet and kind and has a great disposition
Curing his PANDAS has become my one mission!

I want my son back I want him to feel loved
I resent this path in life that my family was shoved

I hold my breath every time we’re around a sick child
I pray his rages and flares this time will be mild

Others don't see him the way that I do
They judge him and ridicule my parenting too

One by one doctors doors slammed in my face
As they realized a cure wasn’t something they were willing to chase

Some flat out don't believe in this disease we are living
They refuse to dispense the steroids, ivig and antibiotics we are giving

Insurance won't pay and so children suffer on
aware of the life that they had that is gone

On this roller coaster I'm going for a ride
I pray to find smiles and laughter on the other side

As the days and nights blend into one
I search for the key to cure PANDAS for my son

Prayers to all that are fighting this fight
The least we ask for is a little rest tonight"

- Suzy Dunnuck Bower, PANDAS mother and advocate

PANDAS is a very new thing for us, as most of you know.  I feel like the Lord clearly led us to this diagnosis but at the same time, it's been a bit hard to accept.  Maybe it's just hard to wrap my mind around this disorder.  Reading posts from other PANDAS parents is comforting, but it also shows me how serious this is and how much it affects everyone in the family, in the community, etc.  These sweet families devote their lives to their children and their care, searching for the best doctors and best treatments; looking for the best hospitals and options out there.  It's new and isn't studied much, so most treatment is experimental and not covered by insurance.  Does any of this sound familiar to you?  For me it does because we already live this very thing out with NKH! We've done so for nine years and there is STILL so much that we don't know.  We STILL grow weary of the NKH fight, and yet we now have another serious one on our hands.  It isn't terminal (thank you, Jesus), but it is detrimental to little Henry in ways that I can't even explain; ways that hurt him physically, mentally, emotionally, and spiritually.  

These photos are from our Destin Trip last December; it's my favorite place and brings me much peace, as it does the boys.  I wish we were there, but I longingly look back at these photos of Henry and the chaos that is going on in his heart, partnered with the beauty and peace of the ocean.  Two of my most favorite thing in one place.  Lord, thank you for this literal picture of Henry in peace!  Bring us YOUR PEACE that passes all understanding.  Only your peace will do!

This child, my Promised Child, My Henry, facing this awful thing - how do I parent it?  How do we face it together as a couple?  How to we help Conner handle it as it adds so much stress to his life?  And Lucy?  PANDAS comes in and takes over and these outbursts Henry has are uncontrollable.  I don't want to go into too much detail because of his privacy, but really and truly, people get physically hurt when the outbursts occur.  And his tantrums are like those of a toddler.  Henry doesn't deal with tics, as many PANDAS children do, but he does deal with OCD.  Henry's OCD is in the form of his thought-life; he will have something come into his mind (usually a want) and he just can't get it out of his mind.  He can't put it off like you and I, or redirect his thoughts.  He dwells on this want and works himself up over the fact that he can't have what he wants when he wants it (candy, play-dates, TV shows, toys, games, etc).  Sometimes he loses his bodily functions, although thankfully he isn't bothered at all by this or doesn't seem to understand that this isn't age-appropriate (for this I am SO grateful).  It so much more than "just" ADHD or a spoiled child.  I sometimes feel like people see Henry act out and immediately assume one of those two things, but that isn't the case.  This has also opened my mind to a new group of special-needs individuals and their families who are also often discriminated against.  

So many of you have kindly given me suggestions on how to help Henry, and Mike and I really do appreciate everyone's concern and eagerness to help. But here's the thing - I honestly just need to vent most of the time when I write or post about these things.  You can rest-assured that we are doing everything we can to help Henry with this - from doctors, to counselors, to therapists, to drugs, to oils, to prayer, to treatments, to out-of-state options (the leading PANDAS doctor/hospital is at Boston Children's Hospital).  We just need prayer and continued encouragement, which you all are so very good at doing!  

Thank you for lifting us up.  Thank you for praying for Lucy as she's faced intense ear infections this week that have had her very sick (please pray that she will be able to tolerate her feeds better asap). Thank you for praying over Henry.  God has laid it on my heart to pray for Jesus to tame Henry's heart.  I would love for you to pray the same!  And for Conner and his tender heart - that he wouldn't feel forgotten or left out in the chaos, but that he would feel treasured.  My prayer for him is that God would capture Conner's heart and show him what a treasure he is!   

Thank you for continuing to remember Ellie Kate during "In Honor of Ellie Kate - A Month of Reckless Love".  Please keep loving people recklessly and keep us posted by sharing on our Facebook page.  We do so love hearing about how you are loving and giving to the lives around you, especially with Ellie Kate in mind!  

Wearily Yours,

Ryan

On the Night You Were Born

"On the night you were born, 

the moon smiled with such wonder

that the stars peeked in to see you

and the night wind whispered, 

Life will never be the same.

For never before in story or rhyme

(not even once upon a time)

has the world ever known a you, my friend, 

and it never will, not ever again . . . 

Heaven blew every trumpet

and played every horn

on the wonderful, marvelous

night you were born."

- On the Night You Were Born by Nancy Tillman

On that beautiful Sunday night in December, when Elizabeth Kathleen McLaughlin was born, I knew it was a magical night.  It was special in so many ways; breathtaking, really.  In those moments, as I held her for the first time, I knew my world, my life, had changed.  I didn't know however, that the entire world would never be the same.  What a privilege I've been given in being Ellie Kate's Mother!  And this year, maybe more than ever, I am reminded of how God uses Ellie Kate to touch the lives of others.  Other than knowing Christ, what greater thing could we ask for as parents than for our children to be safe, to feel loved, and for them to make a positive impact on the world around them?  All three things are true for My Daughter.  

Yesterday was truly one of PEACE.  I laid in bed yesterday morning thinking of the peace I felt, grateful for it, and thanking God for each person who has been praying for me to experience His peace on Ellie's birthday. Your prayers do not go un-noticed.

Mike and I arrived at OU Children's like giddy little children yesterday afternoon, ready to hop out and distribute all of the wonderful gifts that you have given.  We met up with Cara from Child Life, who so graciously allows us to do this in honor of Ellie Kate.  Cara is a minister to these families, although that title isn't in her official job description.

We had two giant carts, full to the brim with gifts.  Books, toys, puzzles, games . . . your donations this year were incredible! The entire time we were there last night, Mike and I kept looking at each other and saying, "I can't believe we get to do this!".  The truth is, we wouldn't be able to do it on our own.  We don't have the money to buy nice gifts for so many children.  On our own, we don't have the energy to go up to the hospital, see those same Christmas decorations and walk those same
halls.

our silly candid shot - can you tell we are excited?!

This year we were able to go to three floors, and oh what a joy it was to see those sweet families and those precious children!  Their eyes popped open as they saw the extravagant gifts that they were able to choose from. These aren't second-hand gifts, they are new, amazing gifts and many of these children don't have the opportunity to open new gifts very often.

Some of our favorites were the kids who didn't have family there, either because of difficult circumstances or because they lived out of town or had other children to care for.  These children especially lit up with delight as they chose their gifts.  We were able to remind families that they are loved.  We told them that we were so sorry they were in the hospital at this time of year, and that we know how difficult it can be.  If we hadn't been through life with EK, we never would have been able to have that experience to share with other families.  Without our own journey, we wouldn't be able to tell them that they aren't alone and that they can and will survive this season in their lives.

All of the families and children were special, but a few of them really stood out.  The sweet mom who came back around to find us just so she could give me a hug and say "thank you" one more time, with tears in her eyes.  "H"'s mommy, who was tired and weary from being inpatient with her son for months at a time.  Because of the Lord and HIS strength, we were able to speak life to her and encourage her in ways that only parents of "the club" would really understand (we pray that she will come to Hope Link soon and get connected with other mommas in similar situations!).

We wrapped the night off on the 10th floor in the Transplant Unit.  That's a hard place, ya'll.  Kids can't leave their unit, so their families set up "home" there in their hospital room, glass doors and all.  Our favorite family on this floor was that of Bennett Hanneman.  Bennett is a brave little man with an infectious laugh and gorgeous smile.  He has been through so much in his little life, and now he is preparing for a bone-marrow transplant.  Aimee Hanneman, Bennett's mommy, is one of my very good friends and also a fellow Hope Link mommy.  This family has been in the hospital for several months and they have several more months to go (and that is if all goes as planned).  Would you pray for Aimee, Ben, little Bennett and big sister Adeline as they live in the chaos of hospital life and serious illness?  Pleases also pray that God would restore and preserve Bennett's life. Oh, Father, a part of my heart was left in Bennett's room!

After the hospital, we headed to my parent's house for a little family birthday celebration for Ellie Kate.  I started crying as I walked in the door and saw pictures of our Princess lining the mantle and tables.  It was decorated so sweetly and seeing those beautiful photos, along with our family gathered together . . . it just moved me in such a strong way.  We ate pizza on Hello Kitty plates, just as we did that last birthday up in the hospital with Ellie.  We sat around and talked about her - about our favorite memories, our favorite stories and about what we miss the most.  Mike's parents, My Parents and my sister, will never know how much last night meant to me.  I heard how much they all love Ellie.  To have us all at the table together, talking about Our Girl and how special she STILL IS to us . . . it was a night to remember.  

Friends, thank you for allowing us the opportunity to go and love families like ours.  We do not take your sacrifice, love and gifts lightly.  We carry each one of you in our hearts as we go and meet these families in Ellie's honor.  You help make what could be a very hard day, an incredibly special and life-giving day that we will always look forward to.  How very grateful we are.

I also want to make sure everyone ALWAYS knows that this is NOT about us.  Who knows what you and your family would be doing in this situation?  Who's to say you wouldn't be doing the same thing, or even more?!  God has given us this opportunity.  And though I don't exactly like the way He allowed things to happen, I'm sure glad that He did!  Your prayers, cards, letters, emails, texts, meals, AND gifts for these children, allow us to go out and do things like this in our Daughter's name.  It is because of JESUS and because of His work in YOU.  It will never be about us in any way, shape or form, but rather about Him and His people coming together to love the world around them.

My Dearest Ellie Kate, on the night you were born, the Heavens opened and the Angels did sing!  The Father knew He was placing a very important little person into our hands, and I'm forever thankful that He entrusted you to us. I'm overwhelmed at the gift of YOU and that He gave you to two broken people like me and Daddy. 

You, Little Love, continue to touch the world around you in big and valiant ways.  Because of you, families feel loved and they know that they aren't alone.  Children feel special, remembered and cared-for,  no matter what their outward appearance might be!  Because of your life Sweet One, thousands of people are now open to special needs children, to sick children and their families.  

You have helped others recognize the importance of loving and serving those who are forgotten.  Jesus doesn't forget people who are sick, who are hurting and who are left behind - He runs to them, and your life teaches us to do the same! You made such a difference in the short seven years you lived on this earth, Sister Sue.  You will continue to make a difference in the lives of others forever more.  Because of you Ellie Kate, life will never be the same.  

A Few of My Favorite Things

Happy Birthday in Heaven, Ellie Kate!  Today, we will celebrate Ellie's birthday - that precious day that she was born.  Because of your generosity, we will head up to OU Children's this afternoon and hand-deliver gifts to children who are currently inpatient.  We will end the day with a little family party at home, where we will talk about all of our favorite things about Miss EKM.

I've found myself quite grief-sick as of late, and today it felt hard to even move. It truly is a grief that hurts deep into your bones.  I'm so grateful that my parents live close by.  After taking the kids to school today, I headed over there and my emotions overcame me.  I sat in bed with my Momma as she held me while I cried.  It was a sweet time.  So many hard things running through my head . . . but my mom encouraged me to stop thinking about all of those hard, messy things and to start thinking on the good things.

So tonight, I'm going to focus on the precious, fun, happy, memorable, heart-warming things about My Daughter, and I want to share these things with you (warning: there WILL be a lot of pictures!).  These Are a Few of My Favorite Things . . .

• Ellie Kate loved the hospital.  Now, she may not have liked all that took place there, but she loved going there.  She spent so much time at the hospital and it truly was her second home.  She would smile when we rolled into her room after being admitted.  She really liked being there and that made our many frequent and lengthy stays so much easier!
• At the hospital, EK loved having her hair washed in the silly little hospital caps.  They are warm and cozy, and she would keep them on her head as long we would let her.
• When I saw Ellie Kate for the first time, I fell in love.  She looked like me!  Her hair and skin were dark.  I didn't ever let her go to the nursery at the hospital but instead, kept her in my arms the entire time.  I was thrilled to have a little daughter!
• As we know, Ellie was a fiery little girl and when she was six weeks old, she extubated herself, literally pulling the ventilator out of her mouth, on her own!
• Ellie was so strong.  It would take several nurses to hold her down for a procedure.  If she tackled or kicked you, you were in trouble!
• Ellie LOVED to dance - whether at church, in the car or at school.  Anytime there was music, she was dancing - and on beat, I might add.
• Ellie Kate was a ballerina.  She danced in a recital at her school, and she was so proud of herself.  They had costume changes and everything!  I loved being able to pack up her little tights, leotards, ballet slippers, and tap shoes.  It was a precious thing for me and for her.  
• She was a Daddy's girl.  From the beginning, EK favored her Daddy.  It was Mike who could put her to sleep, not me.  She loved to be held by Daddy, to wrestle with him, to be rocked by him.  They were pals.  Ellie adored her Daddy.
• Ellie loved other kids.  She didn't know she was different, and I'm so grateful for that.  Ellie just felt like a part of the group wherever she went.  And when others included her, that was even better!  
• Ellie's infectious laugh would make us giggle until we cried.  Her deep giggles would light up a room.  And though they may not have happened often, her giggles always brought joy to everyone around her.
• Big stuffed animals were Ellie's favorite toys.  She would wrestle them, kick them and cuddle them, sometimes until the stuffing started coming out!  We still have all of those big animals and they stay on top of the boys bunk beds, with easy access to us all.  
• When she was younger, Ellie Kate hated baths.  Because of sensory issues, the water literally hurt her and we would rush through bath time as fast as possible.  The older Ellie got, the more she like water.  Her last summer on earth, we spent many afternoons at the public  pool where Ellie would spend time splashing in the water.  She would sit on the edge of the pool, with her cute swimsuit and sunglasses, and she looked just like a typical little girl.  It brought joy to my heart to see Ellie Kate move so freely in the water.
• Even though she didn't always like her therapies, she always worked hard.  Whether it was PT, OT or speech, Ellie Kate let us push her to the limit, and sometimes beyond.  She was a tough cookie and was in therapy from age 6 months to 7 years!
• Ellie adored Conner.  She flirted with him and would sit and listen to every word that he would say.  She absolutely loved being with him all of the time.  
• When Henry was born, Ellie Kate wouldn't even look at him.  This was a purposeful thing.  EK was jealous of the new baby, and it took a good week before she would look at Henry and let us help her hold him.  
• Having a baby sister made Ellie so happy!  She LOVED Lucy so much, even when she was crying.  When Lucy was still in the bassinet in our room, EK would hop-hop over to her many times a day.  When I was breastfeeding or holding Lucy in my bed, Ellie would hop to my side and pull on the covers.  Her first purposeful kiss was to her little sister, and I cannot wait to see them play and love on each other in Heaven!
• Ellie really liked animals.  She loved our dog Jack, and my parents dogs and Mike's parent's dogs.  We would take her to see and pet horses, which she absolutely loved.  She acted very peaceful around animals.  I think she was a farmer-girl at heart, like her Aunt DeDe and her Grammie.  
• My Mom has made up special songs for the girls, and she would sing Ellie's song many times to her over the years.  Ellie found so much comfort in that little song.  She was proud when she heard it.  She got excited when the rest of the family would join in or sing it out at random times.  
• Every time Mike got home from work, Ellie would hop-hop over to him.  I told you - she adored her daddy!
• Whenever a guest would leave, Ellie Kate would hop them out the door, instead of walking them out the door.  It was the sweetest thing.  She had the gift of hospitality!  She even hopped out her special teachers and therapists who visited her the few days before she passed away.  
• Ellie would de-pant people quite often and would follow that with her little grin and her deep giggle.  This would usually happen in the kitchen, where she loved to hang out.  She knew a lot of things went on in there and that people like to be in there together.  She loved the kitchen and pulling down those pants!!  
• "Ellie the Explorer" should have been one of her nick-names, as EK loved to move around the house, checking things out all on her own.  I found her in my closet many times, as well as in my shower.  She would also often go into the boys room as if she was looking for them.  When they weren't home, she would sit and hang out in their room for a while.  She was such an independent little spirit!  
• Our Sweet Girl was so feminine, crossing her legs all the time.  She loved her hair bows and loved dressing up.  But she could also wrestle with the best of them!  

Oh, I could go on forever!  And how happy my weary heart is in thinking of all of these precious things.  Thank you, Father for the gift of Ellie Kate.  Thank you for letting me be her mother - I am so unworthy, God.  Thank you for opening up my heart and mind to the happy things, the good memories of Ellie Kate, even during this hard time.  You are so good, and you DO turn beauty into ashes.  I trust you to continue to do these things in our hearts, minds and bodies, Father-God.  Please give Ellie Kate a kiss from her Mommy, Lord.  And will you remind her how much I love her and how glad I am that she was born to me?  

Ryan

Ellie and Daddy Hanging Out

EKM in the PICU at Baptist

Nunnie singing Ellie her song

Conner made her giggle!

Sweet Brother

Happy Giggles

Daddy, Ellie's Hero

Working hard in her walker!

Our 7 year old Princess

Those warm hospital caps!

Wrestle time with Daddy

Conner telling Ellie stories

Ellie loved Santa!

One of her first sink baths!

Baby Lucy and her Big Sister

Ellie and one of her Big Stuffed Animals

Little Angel in the Christmas Play

They finally started liking each other!

Playing in the Thomas Tent