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

Show Some Reckless Love!

Thank you for your faithful prayers for our Lucy Belle.  She is still in the hospital and isn't up to full feeds just yet.  That means she isn't tolerating her feedings through her feeding tube (g-tube), and thus isn't getting enough calories on her own just yet.  We still don't have an answer to the tremors either, which have now moved to her head and are affecting her entire body.  The good news is that Lucy's bowels are working much better now!  This is a HUGE praise.  We just want our girl to get better so that she can come home healthy and we can head out on our trip!

This week really has been one of peace and joy.  Our Father has been so gracious, and so have you!  I have been loved on each day, and I am so grateful for that.  Thank you for stepping out and loving our family well. 

Today I was a little more emotional that I have been during this hospital stay.  For various reasons, I ended up in the lobby/atrium several times today.  There stands the giant Christmas tree and the sled that Ellie and I took our picture in front of last year, thanks to my friend Jenni Khufal.  It's a special memory. 

I started crying today as I saw a sweet momma wheel her teenage daughter over to that tree and take a very similar picture.  It was precious.  Her daughter had several pumps going, meaning she was on fluids and meds.  Her hair was covered, and I assume she was a cancer patient.  My eyes filled with tears as I saw that precious mom and her daughter take their picture there in front of that special tree.  Would this be the last Christmas they would spend together?  Regardless of the situation, I know that picture will be something special to them both.

In my typical fashion, I later went over to the momma and hugged her.  I think I scared her terribly - especially because she didn't speak English.  But, that sweet daughter did, and I was able to thank her for sparking a special memory in me.  I told her very briefly about my EK and how we had taken that same picture last year.  I hugged her too, and told her "Merry Christmas".  To be honest, I think she was a little scared of me (who wouldn't be scared of a crying stranger coming up and hugging you in the hospital?!).  But, I was glad I shared nonetheless.  Thank you, Jesus for reminding me of that picture of Ellie Kate taken by dear Jenni (who is now fighting for her life).  He is just SO GOOD. 

What have you been doing to love on others?  How have you stepped out of your comfort zone to love recklessly?  Our family wants to know your story!  If you've done something in honor of Ellie Kate, please post on our FB Event Page, or even send it to me privately.  We want to see how God is using Ellie's life to love on others this year. 

And, it's not too late to change your Facebook Profile Pic either!  Check out possible options.  Of course, you are also welcome to use a photo of our Sweet Girl as well:

 

 

 

Thank you for loving and for participating in this experiment of reckless love!!

Ryan

Weakness

"But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.  For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities.  For when I am weak, then I am strong." 

2 Corinthians 12:9-10, ESV

Oh, Friends.  I am a weak, weak human. God didn't choose me to be the parent of my children because of anything I am or anything I've done (good or bad).  I'm just me; and I mess up, doubt, lash out, question the Lord - the list could go on and on.  Thank goodness I serve a forgiving God who loves me the same no matter what I do or say.  That's right, as a Believer, He loves me the same no matter what I do.  I am precious in His sight.  

You see, when we are open about our weaknesses, about our human-ness, God will use that for His glory.  It's important for people to know that everyone deals with sin, with heartache, with worry.  It's just what life is as we live in a fallen world, because of the sin of Adam and Eve.  We live in a broken world, and we are all broken.

So tonight, I gladly share just SOME of my weaknesses.  Today I have been worried about Lucy Belle.  I have doubted the Lord.  I have questioned His timing, His sovereignty.  It's been hard not to let my mind wonder, and I've purposefully have had to turn my mind on other things.  

You see, Lucy is acting much like Ellie Kate today, but not in a good way.  Her tummy isn't tolerating feeds, and I'm having to keep my mind from rushing to conclusions - is this the beginning of the end for Lucy too?  Is it the same GI issues that Ellie constantly dealt with?  Is this a sign of things to come - hospital stays and major GI issues?  Is there something I am doing to cause this in my daughters?

Lucy Belle did so great overnight with partial feeds.  But every time we tried to feed her today, she screamed just like Ellie used to.  Even the meds hurt her tummy.  So, we are back to square one (almost) and are on continuous pedialyte and loratab for pain.  We are praying that this is just part of what we hope to be the tummy bug that Lucy has experienced recently.  We are so grateful in God's timing as our Attending happens to be our Pediatrician, whom we love and trust.  God has prepared the way for this stay, and He knows what is going on with Lucy's little body.  

Would you pray that we would all get to the bottom of Lucy's tummy pain?  Pray that the answers would be clear and that there would be something we can do about it quickly.  Pray for wisdom for our team of doctors.  Also, we planned to go out of town next week until Christmas, as being home surrounded by hard memories just seemed too much to deal with this year.  Would you pray that we would still be able to go on this trip?  We are longing to get away to a special place with family and friends, and we've been looking forward to it for so long.  Obviously we will stay close to home if Lucy is still ill, but we really would love to go on our trip (which also serves as our Christmas to our family this year, and the boys in particular will be so disapointed).  

I'm choosing to boast in His goodness tonight.  I am boasting in my weaknesses, because I know they give Him a chance to be stronger than I can imagine.  These calamaties, heartaches and trials will all work together for MY good and for HIS glory.  My God is amazing like that.  

Friends, we thank you for your love and prayers!

Ryan

Really, Lord? Lessons in Trust

Really, Lord?  I mean, really.  Why do you do the things that you do?  Questions flood my mind tonight as we are faced with many things, much like many of you.  Sometimes it's hard to understand God's timing, God's plan, God's Sovereignty.  But truly, He IS worth trusting.

Tonight, I sit in the hospital room once again, as Lucy has been admitted for what appears to be a stomach bug (which can prove to be quite serious in kids like her).  I haven't slept since she had her surgery on Friday because I was nervous that she would get sick in the middle of the night and that I wouldn't hear it.  I'm tired and worn.  This time of year, Lord?  We have to be admitted this time of year again?  With all that we have going on, we have to be here and Lucy has to be sick? Honestly, even with all of this, I am flooded with His peace.

On Sunday, Ellie's close friend Annie went to be with Jesus.  They loved each other and went to school together.  They often were in the hospital at the same time, and we would have them spend as much time as possible with each other during those hospital stays.  They enjoyed their time together so much.  And now, Annie is gone from this earth.  Lord?  You take her almost a year from when Ellie Kate left this world?  Because He is good, I see His sweetness even in this.

My God is faithful, and even though I don't want to be in the hospital - especially at this time of year with all of the fresh memories of Ellie's last days, I am grateful. I am grateful for the memories the Lord is giving me - good memories of past hospital stays.  Ellie really did love it here, and being here brings me some comfort tonight.  His peace is with me.

His timing is Perfect, even though it seems cruel that Jesus would take Annie home during the same month that Ellie passed away, also on a Sunday, almost at the same exact time.  His timing is perfect because Annie had accomplished all that God had wanted her to.  His timing is perfect because He was ready to heal Annie once and for all, forever.  And that is what He has done!

So, while it is true that my flesh wonders "why?", my heart, spirit and soul truly feel His peace; the Peace that passes ALL understanding.  I'm choosing to trust His timing, to trust Him with Lucy, to trust Him with my family.  I'm choosing to trust Him with Annie's family and the hurt they are now facing because of deep loss.  I trust Him for little and big things that we need and that we are longing for.  I trust Him because He IS FAITHFUL.  

You too can trust Him, Friends.  Trust Him with your whole heart.  When it all doesn't make sense, choose to trust Him.  Give Him your life, your soul, your body, your spirit; give him control of your life, your family, your money, your circumstances.  Jesus is worthy to be trusted.  

Trust Him.  Pray for those who are hurting, including Annie's family as they face unimaginable loss.  Go out and love recklessly, and look for His goodness and faithfulness in the things around you.


Ryan

A Very Happy Birthday

I'm writing from the comforts of the eighth floor of OU Children's Hospital.  God was so good and allowed us to be admitted tonight for Lucy's surgery early tomorrow morning.  It's an easy surgery - just new ear tubes and adenoids taken out, but since Lucy's considered "high risk", we will stay at least a night after the procedures.  We covet your prayers.

As for yesterday . . . well, let me just tell you how special it was!  From beginning to end, it was a wonderful day.  I never thought it would be a good day, to be quite honest.  I didn't know what my attitude would be like, nor what my emotions or my body would be doing.  God was truly gracious.  His Spirit was with us, without a doubt.

I was grateful to have Mike at home with me yesterday, and after we got the kids to school, he and I set out to Ellie's spot.  On our way we stopped for some birthday balloons.  Many tears were shed in the store as I stood in line with those balloons.  The sweet woman behind me said, "Oh!  Some little girl is getting some special balloons to make her happy today!".  It broke my heart, although her words were precious to me (she later asked me if I was okay, but I was unable to get any words out).

The wind was blowing hard at Ellie's Spot, and it was quite cold.  We tied the balloons tightly to the vase on her headstone.  Michael held me and we prayed, thanking the Lord for the honor of being Ellie's parents.  Immediately I was taken back to that first night in the hospital with Ellie Kate, when we gave her to the Lord as Abraham gave up Isaac.

From there we ended up at OU Children's, surrounded by several of my girlfriends who sacrificed their day to spend with us.  We excitedly set up for the party.  It looked beautiful, and everyone was so welcoming, including Cara and her Child Life Team (how blessed OU is to have this group!).  Delia, Nina, Meghan, Julie, Laura, Mary, Mom, Dad, Conner, Henry, Mindy, Chelsi, Amy, Meagan, Rachelle - you all amazed me with the reckless love you showed our family and the children in the hospital!

The turnout was great, even though it's flu/RSV/pneumonia season and many children are confined to their rooms.  Child Life said it was the best turnout they've add for an event this time of year!  We felt so blessed to be able to really and truly talk to the mommas, dads and kids that came through those doors.  And ya'll, you would not believe the God connections that were made!  My friends whose children have the same diagnoses as children who attended; my friend Julie (who is fluent in Spanish) speaking for hours to a few families who had no other way of communicating.  It was all just so beautiful.

One of the best parts of the day was getting to go door-to-door with Mike, Conner and Cara from Child Life.  Families were able to choose both a toy AND a book (some took a few), thanks to YOUR generosity!  Some of them couldn't understand why we would choose to be here doing this.  It was so precious and we definitely were in our element.  Conner did such a good job talking with the patients and helping them pick their gifts.  I was so very proud of him.  And thankfully Nunnie and Poppie took Henry home, Mindy took home Lucy and Mary picked up Jack from the emergency vet (long story).  I teared up a few times, as did Mike.  We especially cried as we walked through the waiting room on the 10th floor where we held Ellie's little party last year on that very night.  We came home exhausted, happy, grateful; our hearts are STILL full.

You played a huge part in us feeling so blessed last night.  You have made us feel loved.  Your actions loved others in deep ways and touched the hearts of many hurting people.  Cancer patients who are stuck up here for weeks on end, children whose hearts are broken over new diagnoses, families who are here and are hours from home.  YOU have made an incredible impact by your reckless love in honor of our Ellie Kate.  I know she would be so blessed to know all the people that are being helped through you!  By the way, we had so many donations that your gifts were not only used on the floors of the hospital and at the party - they have been used at Jim Thorpe Pediatric Rehab (where Ellie and Lucy have spent countless hours), as well as the Wonderfully Made room, Ellie Kate's former classroom, and even the Fostering Hope Clinic at OU Children's Hospital.  That's what 800 books will do!  And every item is marked with a sticker telling them about Ellie Kate, and letting them know that they are loved and not forgotten.

And a happy story to leave you with . . . tonight I went down for a coke in the cafeteria and ended up behind one of the boys who attended the party yesterday.  He was standing in line with his momma and he was holding the ball that he picked out last night.  It brought tears to my eyes, seeing him carrying that ball around.  I talked to him, and his momma told me that he even slept with that ball last night.  See how special you made this young man feel?  And many more like him!  All because of your reckless love.  Keep it up, Friends.  The Month of Reckless Love has just begun!

He is Faithful,
Ryan

A Precious Birthday

Today was a good day.  It was a VERY good day.  I want to fill you in on all of today's events - the smiles, the laughter, the tears.  But that will have to wait until tomorrow.  Today, I want to focus on My Daughter - On MY Ellie Kate McLaughlin.

I've been flooded with precious emails, texts, phone calls, and FB messages.  I think I counted roughly 80 of those today, so forgive me if it takes me a while to get back to all of you!  I can tell that you love Ellie Kate and that you love our family by the ways you have reached out to us today.  Thank you so much.  I wish I could express how much your support, words and encouragement mean to us.  I trust that the Father will fill you with the realization of the impact you've had (and continue to have) on our lives through loving us well.  

Thankfully, the Lord has filled my heart with sweet memories from Ellie's birthday last year.  As you know, Ellie was in the hospital on her 7th birthday.  It was a warm day, a happy day.  I woke up and went and bought Ellie Kate a giant doll out of the gift shop.  I had contemplated buying that giant doll over and over in my head.  It was so expensive, but I was so drawn to it.  Ellie loved giant animals that she could hug, hit and snuggle with.  I am SO grateful God provided a way for me to get that big doll for her.  She absolutely loved it, and it now sits in Lucy's room.   

Ellie's nurses sang "Happy Birthday" to her many times that day.  She felt so special.  Everyone who came in went on and on about her beauty and what an incredible little girl she was.  The Child Life girls hung a birthday banner and many of the nurses and doctors signed it (I treasure that today!).  Maegan, one of Ellie's nurses since the beginning, went and bought her a darling OU outfit for her birthday.  We gave Ellie a bath together and just like always, she loved that warm hair-wash cap.  I scrubbed her hair extra long that day because she loved it so. Her lips were breaking down, and I covered them in her "lipstick" (Burt's Bees chapstick that I had specially bought for her).  Maegan and I dressed Ellie together that day, in those cute clothes Maegan and so kindly bought her (she will never know what a gift that sacrifice was to me).  I sleep with that little OU shirt from time to time even now.  It is precious to me as I remember that happy day.  

My friend Nina brought lunch to me, and we took Ellie Kate outside to enjoy the warm weather.  She loved it!  Many smiles came across her little face as she hopped around the play-yard and sat in the big chairs.  So many sweet memories.  I took her for a walk by myself later in the day, and we checked out all of the Christmas decorations.  We found her favorite tree (the one on the sixth floor, flocked white with bright-colored decorations).  I took her picture by the tree.  I took her again outside, and relished in the fact that she was enjoying the outdoors.  She hopped a bit before becoming too tired, but she sat and enjoyed the sunshine for a long while.  I will never forget that time together.

That night we decided to have a special family birthday party at the hospital.  Oh, how grateful I am that we had that little party!  Thanks to Nina, we had pizza and even a personalized cookie cake.  We even had Hello Kitty decorations, just like we had planned with her regular birthday party (which we hoped to have once she was released).  Dr. F, our favorite pediatrician, stopped by the party too.  Ellie felt so loved and was so excited to be with her family, which she adored. She laughed at her brothers as they fought over toys and she smiled as we sang "Happy Birthday" to her once again.  We had her party on the 10th floor waiting room, and I walked through that very room tonight in tears as we delivered gifts to children in her honor.  

When we got back to her room that evening, Maegan had decorated the entire room for Ellie Kate!  It was perfect, and it made me feel special, as well as our entire family.  Even if Ellie Kate didn't understand it's significance, I know that she loved it.  A little gesture made a huge impact on us all.  

I kissed Ellie Kate goodbye that last birthday.  My Dad stayed the night with her as I went home to be with the other children and with Mike.  I wish I had stayed, although I know the time she had with Poppie was very special.  I wish I had been the last one to talk to her on her last birthday on earth.  If I had only known.  

That day, I had written Ellie Kate a letter, which I posted on her Carepage.  Little did I know that she would be gone in just days, and that letter would be used at her funeral and even in her obituary.  Oh, how fleeting this life is!  I leave you with this letter to My Girl, as I think it speaks volumes of her life and of our love for her.  

More tomorrow, My Friends . . . 

To My Ellie Kate, On Your Seventh Birthday:

I will never forget the day that you were born. One of my biggest dreams came true - I had a daughter! You were gorgeous, and although I didn't see your eyes for a long time, I knew they would be perfect. Your dark hair, your dark skin - I finally had a baby that looked like me! And, you were (and forever will remain) our Princess; feminine as ever from the very beginning.

We've been on this journey together now for seven years. It seems like yesterday and yet these seven years have come to define our lives as individuals and as a family. Seven years of joy, of pain, of sorrow, of gratitude, of pure love; all of which have been full of precious moments. I do not regret one day with you, Sweet Girl. I do not regret one thing we have endured together, because it has brought us to where we are today.

The night you were born, Daddy and I sat in the hospital room and gave you over to the Lord, as Abraham gave up Isaac. We had no idea what God was really calling us to do, but we gave our Little Princess entirely to Him. Our prayer was that He would use your life for His glory. Oh, Little One, how He has exceeded my feeble expectations!

Ellie, you are a joy. You have changed my life forever. I love better because of you. I serve better because of you. I even hurt better because of you. I am BETTER because of you.

You lead me to Christ, to our Father, to the Spirit. You lead people across the globe to the One True Light. You are a Missionary. You are a Worship Leader. You are an Artist.

I bless you today, on your seventh birthday, Dear Girl. I pray that God showers His goodness and mercy upon you. I pray that you always feel His presence and see His angels around you. I pray that you will know how much you are loved, and I pray that God will continue to use you for His glory – whatever that might look like.

Always and Forever, Little One –
Mommy

Ellie's Birthday Party - Tomorrow!

This flyer was made possible by the talented and giving Katee Bailey!  Also, details on the flyer have been changed and are not accurate at this time.  This is the flyer that will be handed out to the children and staff at Children's this week in preparation of the party.  I wanted you to see how darling it is!

I can't believe that Ellie's birthday is already upon us.  I remember her seventh birthday so vividly; it truly blows my mind.  I'm so very grateful for the many offers of help with this celebration. I'm not in an emotional state that would allow me to handle all of the details right now, so I'm so thankful for my friends who are stepping in and taking care of those things!

This won't be a typical birthday party like the ones we've had for Ellie in the past with many friends and family members.  Because of hospital rules, we are very limited on many things (understandably so).  Below are the rules, as were explained to me today:

• Because of it being "sick season", no one who has been sick within the last 24 hours can attend.  This includes those who have been in close contact with sick loved ones and friends.  This will help assure that the children who attend don't have a chance of getting even more  ill.  
• Only 20 people are allowed to serve as volunteers and attend.  This is because of space, and because we want the focus to be on the children in the hospital, rather than on Ellie Kate.  We already have close to 20 committed to coming, but if you know in your heart that you want to join us, please message me and we will try our best to add you to the list!  
• Only our family alone will be handing out gifts to the various floors, going door to door.  Understandably, this will help cut down on confusion.  Also, everyone who steps foot on the floor MUST have had a flu shot, which our immediate family has had.
• No latex balloons are allowed.  Many children have serious latex allergies, so all balloons that are donated, or given must be mylar.  
• Each volunteer will meet at the designated time and will sign releases for HIPPA laws and such (again, contact me for more information).  

Thank you for understanding these rules, Friends.  If you aren't part of the special-needs or medical world, I know these all may be hard to understand.  We agree with the rules that have been set for us, and hope that you will understand.  It isn't that we want you NOT to be at the party!  There are other ways you will be able to show the Ellie Kate love, and I will be sure to highlight those things very shortly.  

Since many won't be able to attend tomorrow, I will be sure to write a detailed post and include lots of pictures!  All of you have been so kind in giving SO much with the book drive, and I want you to see what an impact you are having on these sweet children.  

Speaking of the book drive, we now have had approximately 800 books and toys donated.  Can you believe that?!  My jaw drops at the thought!  I see the books piled up in bins in our dining room, and it is truly a vivid picture of your love for our daughter and for us.  Through your donations, you are not only making a sick child feel loved, but you are also making us feel loved, treasured and remembered at such a difficult time.  You will never know the impact of your actions this side of Heaven, I assure you.  

Check out the book plates donated by Sarah Morgan!  Each and every book and toy donated will have these stickers on them, reminding the children that they are loved and telling them a bit about Ellie Kate.  What a beautiful legacy!  

Thank you too for the many texts, emails, encouraging words, and prayers that you've sent us this week.  I don't think we could do this without you, and that is exactly why God has surrounded us with such a great and supportive community of friends.  You spur us on and remind us that we are not alone, which is a treasure unlike any other.  

With Hope,

Ryan