Dreaded Post - With A Broken Heart

This is a post I've been dreading for a little while now.  Actually, those first pits of dread and fears came sweeping in upon burying Ellie Kate in 2012.  After that, I was often reminded of a truth I didn't want to believe, face or even realize - the truth that one day, unless a great miracle were to take place - Lucy Belle would also pass away.  Mike and I want to share with you tonight, that Lucy Belle has been placed on Hospice Care.  WE want to tell you because there are MANY layers to this news and to this choice, so I truly hope you will stick out this blog post (even with my inevitably, heavy-handed pen), making sure you get a clear picture of where things stand. 

If you've been following Our Blog, you've noticed that Lucy's been suffering for some time now.  We've run test after test after test, mostly invasive, some in-patient and some outpatient; ALL uncomfortable and even painful for Our Sweet Girl - things we absolutely HATE for her.  We still don't have full answers on bladder/kidney pain nor on the endless, sleepless nights full of screeching and painful cries.  But, there have been comfortable times too, as well as somewhat restful nights.  Lucy's still smiling and still finds joy, still showing interest in the things that she loves like her brother, her doggies, her grandparents, her Daddy, taking walks, swinging and being outside (whenever it's not piercing hot); she still LOVES shopping with mommy, loves being in a pool, her friends and nurses, and being around other kids here at home.  LUCY IS A JOY and lives up to her name, "Beautiful Light"!

The hardest truth that's come to light is that Lucy Belle is declining, or maybe it's NKH progressing; probably BOTH.  Our doctors are aware of this and are actually the ones who've brought it to our attention, although we've known in our hearts that this decline has been taking place.  All of us have noticed the progression of the disease and the level of suffering continues to rise, despite our best efforts on all fronts. 

The MOST important thing to us as Lucy's parents, is to know that she is as pain-free as possible.  After watching Ellie Kate suffer SO greatly with pain her entire short life, we promised ourselves and Our Daughter (all of our children, really) we would do EVERYTHING within our power to keep the pain away, even fighting for them to be pain-free, consistently staying on top of the medical teams until they did what we thought needed to be done in order for Lucy to be comfortable.  It's in this light which we've made the hard decision to place Lucy on Hospice Care. 

Friends, obviously this decision hasn't been made lightly, but after visiting with trusted doctors and nurses, as well as the Pediatric Palliative Care team, we agreed with their decision that Hospice would be the very best way to keep Lucy's pain under control. You see, Hospice isn't only end-of-life care but in fact, can also serve as palliative care.  The Hospice Nurse will be able to deliver whatever meds Lucy might need, whatever time of day or night she might need them.  Also, a special pediatrician will be in charge of Lucy's care now, working closely with Hospice and the Palliative Care Team, meaning she will receive the more personalized treatment she needs - the kind we've been praying AND searching for! This knowledge gives us as parents much hope, solace and satisfaction and we know that no other service could bring this type of care, despite the heaviness of it's name. 

It may bring your heart comfort to know this, as it's brought me much comfort in remembering it . . . this is much how we ended up treating Ellie Kate's first year of life which was spent on hospice as well, and as she continued to thrive and survive despite being on Hospice Care, as she defied the doctors yet still needed close attention, including pain medication and palliative care intervention, it really was the perfect coverage and situation for Ellie Kate.  God orchestrated it all without us even fully understanding it at the time and now, when the choice was brought up to us again with another precious Girl, it wasn't difficult  for us to fully understand and remember it benefits, making it so much easier to make the right decision. 

I know the words sounds so tough, HOSPICE and believe me when I tell you that it's incredibly difficult for me to even udder, much less write to you tonight.  I'm crying now, because I didn't think it would be like this, and even though we've known Lucy's quality of life has deteriorated greatly.  Making these choices are sickening - even WHEN you KNOW it's the right thing, even WHEN it's the second time around.  I didn't know these years would go by so quickly, you guys.  I just didn't know. 

Something bringing us great comfort - something we want you to know -  is that Lucy is STILL FIGHTING and as long as she's still fighting in this life, WE will be fighting for her, every step of the way, just like we did with Ellie Kate. We have no plans of backing down on Lucy's treatment, nor any plans of future treatment at this time.  Also, we trust that in this, you respect us as we make our own decisions based off the Holy Spirit's leading and recommendations by our trusted doctors and nurses.  While we appreciate your own experiences, remedies and ideas, we ask you refrain from sharing those with us at this time.  Thank you in advance for understanding this important request.


"Life List" . . .

Once we knew Ellie Kate would be going home from the hospital on hospice that last time, we quickly made a "Life List" which is much like a "Bucket List", but instead is focused on things we believed Ellie Kate would want and enjoy doing before going to Heaven.  With your help, we made a few of those things happen, even though literally within only a couple of days, and we couldn't be more grateful! 

Even though Lucy is stable and we don't expect any major changes ANY time soon, we've decided to go ahead and make a "Lucy's Life List"!  We'd love to accomplish the entire list by her seventh birthday on September 26, 2018.  We're still working on this all-importance list but we know a few things Lucy would enjoy and LOVE at this time . . .

• Going to the Ocean!  We'd love to take Lucy to the Destin area, or somewhere nearby, as Ellie Kate also spent a bit of time there and had a blast.  We took Lucy there on the first anniversary of Ellie's death but since it was unseasonably cold that time, Lucy wasn't able to get into the ocean in any way (although we have great pics of her sweet feet in the white sand!).  Feeling the warm sand and warm waves would simply be a dream come true for us and for Lucy! 
• Going on a boat!  We'd love to take Lucy on a boat ride!  This could be at the ocean or even at a local lake!  She could ride like a typical kiddo and could even get into a tube of some sort.  She loves driving fast and had a blast on the rides at Disney and Universal, so I know she'd love an "active" ride! 
• A pool - this is waaaay excessive, WE KNOW.  We just also know that Miss Lucy LOVES water and it calms her to be around it and in it, even though we don't have access to it much. When she is around a pool, she could stay there ALL day, soaking and floating - it's the only place where her body is free and I believe it helps with aches and pains as well. 
• Meeting Blake Shelton (and maybe Gwyn??) - Lucy LOVES country music, although she likes the guys' voices rather than hearing the girls' (which were EK's faves).  Maybe, since he's from OK, there would be a way to make this happen?  Obviously a sort of pipe-dream, but putting it on the list, nonetheless (EK wanted to meet Taylor Swift, Miranda Lambert or Carrie Underwood but received some special gifts, some autographed instead AND received a personal, taped message from Miranda, just for 'Ellie-Girl'). 

You know, I remember holding my little one-year-old girl, her little chunky legs and her animated face; those blonde, bouncing curls, gazing on her cherub-likeness - I clearly remember, at that very time and many times immediately after, that I had at LEAST SIX YEARS before I even had to WORRY about Lucy's well-being here on earth; before I even had to think seriously of her morality.  I don't know why I thought this as there has been no promise of Lucy's life being only the length of her Big Sister, and quite the contrary as Lucy's life has been spent OUT of the hospital and has been mostly healthy and happy!  Somehow, someway, I had that "worry" timeline in my head and I think of it now as a coping mechanism in some way.   I wish it had gone by more slowly. 

Six LONG years. It's a long time, right?  But it isn't, and we all know it.  And now, Lucy will be six years old this September, which means she is inching ever-so-close to that 7-year-mark which Ellie Kate barely hit (EK turned seven on Dec 4th and died Dec 23rd).  But,  please remember along with us, that Ellie Kate was only on hospice for three, suffered-filled days.  But you know what?  That WILL NOT be the case with Lucy.  While we cannot see the future nor what each day will hold, we do know that Lucy is stable upon admission to hospice, which is very different than Ellie Kate.  We have hope for more than a little more time with Lucy, holding to the expectant hope of more memories to be made, the realistic hope of more laughter and millions more kisses! 

Ya'll.  Whew.  Thank you so much for your support and encouragement over the years.  Thank you in advance for your support and encouragement through this as well.  Thank in advance for helping us work on crossing things off of Miss Lucy's "Life List", and for praying God would work in special ways where it's concerned. Most importantly, thank you for your prayers and petitions on behalf of Lucy's health, especially now. 

With Hope in My Broken Heart,

Ryan

Our Pioneer Woman

Ellie Kate recently welcomed her Great-Grandmother Tully as she entered Heaven and left this broken world behind.  Colleen Patricia McFarland Tully passed away on her farm, just as she wanted.  She poured her heart, soul and life into that farm and the house that they built on their land, so long ago.  I can only imagine the reunion Ellie and Grammie must have had!  It brings me so much joy to think about.  

Grammie's death holds some uncertainty at this time, which hurts my heart very much.  I think everyone would agree that they want their loved ones to pass peacefully.  I always imagined Grammie meeting Jesus in her sleep, but that isn't the way her life on earth ended. But now . . . none of that matters.  She is with her Lord and Savior, Jesus.  And she has been reunited with her beloved dauther, Deidre, who passed away from cancer at the age of 22.  And My Sweet Ellie Kate . . . can you even imagine??!!  

I imagine Ellie's "welcome" smile looked something like this

I'm so grateful that we were able to spend time with my Grandmother while she was living on earth.  Mike and I would take the boys out to the farm and we would have lots of adventures there, making memories all along the way.  Each time, the boys would leave with some little trinket, rock or shell that Grammie gave them as a special treasure.  Conner and Henry went down quite often to visit Grammie with my Dad.  They love her and always looked forward to picking up a hamburger and Dr. Pepper for their Great Grandmother.  The boys truly felt safe in her home, and they absolutely love being there.  I'm glad they knew my Grandmother well.  I'm glad that Grammie knew and loved them so much, and also loved Ellie Kate and Lucy so dearly.  She would hold and hug on the girls, even when they were wiggling and kicking, as they often do/did.  They both have her green eyes.  Grammie buried her daughter as well, and she had given me a few pieces of wisdom during the times since Ellie passed, which I hold dear to my heart.

Henry and Grammie at Braum's

Summertime Fun with Grammie 

(photos by Henry)

Colleen Tully is my Grandmother, and I am proud that I'm in her bloodline - part of this large, crazy, fun, loud, opinionated, loyal, and stubborn family! She was brave, strong, heard-headed, intelligent, caring, and stubborn (did I mention that already?).  We call her the "Pioneer Woman" because she loved living out in the country, fixing her home and raising animals. I have memories of baking oatmeal raisin cookies with her and picking berries off her farm.  She would let me ride her tractor with her, and she even let me stay with her for two weeks one summer.  I had so much fun and remember her teaching me to drive, with TWO feet, back when I was only twelve.  

One of my most treasured memories is when Grammie came up to Ellie Kate's dance recital at school.  I was able to get a picture of Ellie, Grammie and Lucy - it's the only one I have of all three of them together, and it's precious to me.  That was one of Ellie Kate's best days - really, one of the happiest days of her little life, and my Grandmother was there to witness all of her smiles and was able to see her on stage.  It makes me proud.  

What a Special Day!

I truly will miss my Grandmother.  I will miss her hands, I will miss her voice.  I will miss her hugs, although I'm thankful that she is no longer confined to that precious, little frail and thin body.  I will miss getting to call her on the phone, taking her a burger and piece of pie from Hamburger King, and of course, bringing her Dr. Peppers!  I know my boys will greatly miss her too - in so many ways, as they were all so close.  

Please pray for my Dad and his siblings as they handle all of the many things that come up when a loved one passes.  There is so much to do, along with facing the loss of their mother.  They know she's alive and they know where she is, but I know they will be drained in every way possible.  I would also love prayers for our boys as this all sinks in for them.  I asked Conner tonight if he was okay and he said, "I'm okay, Momma.  I've just lost so much, you know?".  It hurts my heart, and Mike and I desperately want to parent well through this season.  

"May the God of hope fill you with all JOY and PEACE in believing, so that by the power of the Holy Spirit you may abound in PEACE." Romans 15:13

PEACE.  JOY.  HOPE.  He still reigns and I will worship.  

Ryan

Peace, Hope and Joy

The Christmas Season brings so many feelings and emotions to us all.  In a previous post, I mentioned the fact that I feel that this is a season of Peace for our family.  It's a word that God has given me for this time in our lives.  Everywhere I look though, I have a hard time finding "peace" decorations and ornaments!  Hope, joy and Santa are just about everywhere, but I've been looking for PEACE - figuratively and physically.

A sweet ornament I unrwrapped last night from my friend Amy!

An amazing thing has happened over the last two weeks and it truly is nothing short of a miracle, seeing how burdened my heart has been.  God, in His goodness, has not only given me a craving for peace - He has actually GIVEN me peace!  He has also placed JOY and HOPE in my heart, and those are things that I truly did not think would be in my heart, or in my mind, at this time of year.  I  wasn't sure if I truly would ever again feel those things during Christmas time . . . Ellie's Month, ever, ever again.  But Jesus has changed that for me, and even if it only lasts for a bit, I am relishing in it, basking in it, and dancing in it, as one would dance in the rain!

Romans 15:13 May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. 

How beautifully He ties it all together!  

The joy and hope in my heart have made me excited to decorate for Christmas.  To us, this is now "Ellie's Month", so having the house decorated early for Christmas just means that we extend the time of celebrating Our Girl!  It's been so fun and freeing to get things ready around the house.  In a strange way, I feel as though I am still parenting Ellie Kate by decorating.  I hang her ornaments just as I hang those of the other children.  

This Month of Reckless Love truly does give me the opportunity to feel as though I am parenting and sharing My Daughter's life with others.  I know it sounds strange and I wish I could explain it better, but it's just so hard to put into words.  That is one of the many reasons that it means SO much to have you participate in the Month of Reckless Love!  And, there is now a special way for you to support OKC Hope Link when you make your purchases on Amazon.com. You can go to Amazon Smiles and choose "Hope Link" and a portion of your purchase will be donated to OKC Hope Link, the non-profit that is so dear to our hearts.  Also, be sure to "like" our official Facebook page under "In Honor of Ellie Kate McLaughlin - Living a Life of Reckless Love".

Ellie Kate's Month of Reckless Love Wish List  - REMINDER - all gifts will be donated to OU Children's Hospital and will be delivered on December 4th (Ellie Kate's 9th Birthday)

It is truly a rich relief, distraction and solace to have these feelings flooding our hearts and home at this time.  Mike and I are even looking into getting a new puppy for the boys this Christmas!  New, hopeful, joyful, full of peace . . . He is SO faithful.

With Peace, Hope and Joy,

Ryan

  

Lifted and Loved

With the kick off of Ellie's Month of Reckless Love, my longings for Ellie Kate were getting pretty intense. One evening we had my parents over for dinner and I just broke down.  All of these hard days are coming up so quickly - faster than I want them to; faster than I'm prepared for them to come. 

I sobbed as my parents both held me.  It was really a special time.  Mike had the boys in the other room happily watching a cartoon, so for once in a long time, I was able to let the tears flow and I was able to share my feelings of loss with someone other than Mike.  Those feelings run deep, not just for EK, although that obviously is where my heart has been struck the most.  Over the past several months, baby Kylee, Ellie Kate's friends Makenna and Alyssa, and my friend Jenni all went to Heaven within days/weeks of each other.  My heart has been full with questions as to why God does what He does and why He does it when he does.  I know He is Sovereign, but when you are mourning, the Truth sometimes flies out the window.  That's why you have to grab it when you see it, and hold on to it with all that you have.  Our feelings change but Truth does not.  Jesus is Truth.

This same week I was contacted by an old and dear friend who, along with another friend, wanted to help our family in specific ways.  I was overjoyed at a renewed friendship more than anything, and I was truly encouraged in realizing that God had forgotten about us.  I mean, I know He hasn't forgotten about us, but sometimes it feels that way, and sometimes it feels like He forgets the little things we need or desire.
 
Within a matter of days we were blessed with Henry's first ever REAL bedroom furniture (and it is gorgeous, family heirloom pieces)!  The boys BOTH have their first REAL mattresses! Not only that, but the boys were able to order their very own bedding sets, which is a first for them.  You should have seen their faces as they scrolled through the choices online.  The medium Tumbleform feeding chair, which we needed for Lucy to safely sleep in at night while on continuous feeds, was mailed straight to our door; an extravagant gift that the Lord used His people to lavish upon us. 

My spirits and my heart have been lifted in knowing that I am NOT forgotten by my God.  He sees our needs and those special wants we have in our hearts.  He bestows them upon us just when we need them - physically, spiritually and emotionally.  Yes, My God is concerned with my emotional and spiritual well-being too! I'm so incredibly grateful that God used these two families to love on us this way. I mean, who gives family heirlooms and furniture sets??  Who orders special-needs equipment for another family (it's costly, ya'll!)?!!  THAT is some "Reckless Love". 

Speaking of reckless love - the first gifts from our "Ellie Kate Wish List" came in this week!!!  In the last two days, we've received seven packages full of wonderful things for http://www.ocfoundation.org/uploadedFiles/MainContent/Find_Help/PANDAS%20Fact%20Sheet.pdfthe patience at OU Children's.  It feels my heart with joy to think of handing out these gifts on Ellie Kate's birthday, December 4th.  Here's the list in case you want to check it out:
 In Honor of Ellie Kate McLaughlin - Amazon.com Wish List

Our Very First Packages for the Month of Reckless Love!!

I'm happy to say that my joy inspired me to put Ellie Kate's Christmas tree up this week too.  I was so excited about not being forgotten about by friends and by the Lord, and I was so excited to have a tangible reminder of My Girl up in our home, that I just couldn't wait any longer to get it up!  I unwrapped each packed ornament with care and I was struck with the sweet memories that flooded my heart with each and every one.  The tree is so special as it holds ornaments that Ellie made at school, a few she's made at her birthday parties (she IS a December baby, after-all), along with things that remind us of her - Tinker Bell, Hello Kitty, ballet dancers . . . there are even a few ornaments from special friends that were sent to us last year that now have important places on the tree.

 I hope these pictures bring you joy, Friends.  I hope you remember that the LORD remembers you and your needs, your wants, your desires, down to the very detail.  He gives us above and beyond and does so when we least expect it, always where He alone can get the glory.  And remember - our feelings will fail us but the Truth of God never will.  Go out and love recklessly today! 

Joy

JOY - it's such a wonderful word, isn't it?  And I've been experiencing it, My Friends!  This is a BIG DEAL, ya'll.  There was a time where I didn't think I would feel joy again; where I wouldn't see true joy again in my life, in our lives as a family.  But, the Lord has recently given me great joy.  Oh, I am so indescribably grateful!

I've combined a few definitions of "joy" for you . . . 

 1. a :  the emotion evoked by well-being or by the prospect of possessing what one desires 

     b :  the expression or exhibition of such emotion 

      2

:  a state of happiness or felicity 

      3

:  a source or cause of delight

Last Friday I was able to speak at the OANAPT Conference at Mercy Hospital in OKC.  I love public speaking, even though I am a bit rusty, and I've been praying for more opportunities to do it. It's a part of my life that I really miss. Last week God gave me that opportunity and it gave me so much joy!  Not only that, but I was able to see many of our precious friends/therapist of whom we are bonded for life because of Ellie Kate.  Truly, the time was precious in every way and I am still so full of joy from the experience (if you need a speaker, I'm available . . . just sayin'!).

Yesterday, I was able to take Lucy to the mall in the handicap-accessible van.  This was HUGE to me as a momma.  The van was given to us by The Lord (through friends) for Ellie Kate, before Lucy was even born.  It had some major repairs that needed to be done and we just weren't able to get it fixed for a long, long time.  But, because of your gifts and the GoFundMe page, we were able to get it completely fixed, air-conditioning and all and Lucy is now able to ride in it!!  

Check out her PURE JOY . . . 

She couldn't get enough!

Going to the mall is a typical thing, yes?  And I was able to do it with MY DAUGHTER!  I felt good enough, she felt good enough, and we had the transportation to get there.  We met Mindy and her daughter Lexi, along with sweet Lyla, whom Lucy adores.  We shopped and I actually allowed Lucy to "play" on the playground!  She loved being around all of the kids, and most of the parents were so kind and gracious.  

Me, Lyla and Lucy

"Row, Row, Row Your Boat"

Lucy loved the candles at Bath and Body!  Two hands!

Last night, I let the boys watch Lucy while I took a shower and while Mike was in the kitchen.  Henry ran into me saying, "Mommy, Lucy has a seizure, Lucy has a seizure!".  I ran into to find my sweet boys in bed with their sister, holding her and stroking her head.  She was completely fine, and even though she had a few slight seizures and the boys know how to recognize them, etc - I was STILL overjoyed at the thought that they care for Lucy.  The boys LOVE their sister, even though she is sick and even though they know she will likely be in Heaven before they will be.  It was a normal moment to me, something typical - brothers in bed with their baby sister, playing and talking to her.  JOY to my heart!  

And as I think about the upcoming weeks, I am filled with joy as well.  Sure there is some anxiety, stress, etc, but God has given me joy for this time.  It is a gift I do not take for granted!  Lucy starts school in just two weeks.  Her third bday is just weeks away too!  And then we will be on our Make-a-Wish trip to Disney!  And before you know it, we will be celebrating Ellie Kate's birthday at OU Children's (more to come on that).  

I feel loved and cared for.  My heart is delighted, and I thank Jesus for this precious time in my life and in my heart.  I know I won't always feel this joy, but for now . . . I am relishing in it.

10"Hear, O LORD, and be gracious to me; O LORD, be my helper." 11You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness, 12That my soul may sing praise to You and not be silent. O LORD my God, I will give thanks to You forever. Psalm 30:11

For the Lord will deliver Jacob 

and redeem them from the hand of those stronger than they.

12They will come and shout for joy on the heights of Zion;

they will rejoice in the bounty of the Lord—

the grain, the new wine and the olive oil,

the young of the flocks and herds.

They will be like a well-watered garden,

and they will sorrow no more.

13Then young women will dance and be glad,

young men and old as well.

I will turn their mourning into gladness;

I will give them comfort and joy instead of sorrow.

14I will satisfy the priests with abundance,

and my people will be filled with my bounty,”

Jeremiah 31:11-14

"Truly, truly, I say to you, that you will weep and lament, but the world will rejoice; you will grieve, but your grief will be turned into joy."

John 16:20