A Dream Is A Wish Your Heart Makes

Do you remember that song from Cinderella?  "A dream is a wish your heart makes, when your'e fast asleep.  In dreams you will lose your heartache, whatever you wish for you keep." I'm still singing and humming this sweet tune after our amazing adventure to Orlando, Florida!  It was a wish-come-true because of the generosity of our friends at  Make-a-Wish.  It was so much more than a trip and I will do my best to explain why it has impacted us so much . . .

When a wish is granted for a family to go to Orlando, they don't "just" go to Disney World.  There is so much more involved that requires intricate details, impeccable planning, hundreds of volunteers, a team effort made by the folks at MAW, the staff at GKTW as well as their volunteers, amusement park employees . . . the list could go on and on!  Every single detail is taken care of for the Wish Families.  Do you know what that means to someone who is planning every detail of every day, all the time - doctor appointments, therapies, school meetings, surgeries, home-health nurses and their companies, medical equipment ordering, keeping the meds ordered and up-to-date, staying on top of insurance and bills . . . you get the picture!  One of the biggest blessings of being granted a wish is that ALL of the nitty-gritty details are taken care of.  It's a relief that I cannot describe to you!

I'm mentioning GKTW quite often, and it truly is a magical place.  Give Kids the World is a park in and of itself, and it is an actual "village", where all the wish families coming to Orlando stay.  It is off-site of the parks and is home to hundreds of state-of-the-art villas, where families stay.  Wish Kids and siblings get to do so many fun things at GKTW - from horseback riding, to art projects and face painting, dance contests, and nightly parties!  There are two pools, both handicap-accessible, so every child can get in the water.  In fact, EVERYTHING at GKTW is handicap-accessible! Can you imagine the freedom that comes along with that for these kids and for their families?  There are restaurant on-site and a carousel; there is even an ice-cream parlor where you can eat as much as you want, whenever you want!

When you are there, you are surrounded by other families, from all over the world, who are in similar situations as you.  It's like being around Hope Link families for five days!  We all understand.  We all "get it", and there is a sense of belonging in that.

The people who serve at GKTWare mostly volunteers - hundreds of them, and they come in and love on each family, serving and talking to them, even carrying their trays at meal times.  They serve because they want the children and the parents to know how loved and special they are. Seeing all of the families and seeing the volunteers in action . . . well, it's one of the most beautiful things I've ever witnessed.  

Make-a-Wish granted Ellie Kate's wish to go to Orlando, and in 2009 and we took a six-year-old Conner and a six-month-old Henry Isaiah along with Ellie to GKTW.  It was an incredible time.  It was breathtaking in so many ways.  Ellie smiled there more than we had ever seen her smile before. She laughed more than she had ever laughed  She loved it all and took everything in.  We have priceless memories from that trip with Ellie Kate, memories made possible by all of those who make wishes come true for families like ours.

You can only stay once at GKTW (unless you come with a different child with a severe medical condition), so Mike and I thought that our only time to go would be with sweet Ellie.  We had no idea that we would be able to go again.  When we found out that Lucy indeed had NKH, I was desperately looking for positive things.  I needed something good and happy to focus on, and something to look forward to.  My mind jumped to our time at GKTW with Ellie Kate, and my heart found hope in knowing that we could go and experience it again, this time with a new little girl.  That thought truly gave me hope and put excitement into my hurting heart.  THAT is how amazing this place is, and their motto is, "GKTW - Where Happiness Inspires Hope".  

I have to admit, Mike and I were worried about the trip.  We were worried about traveling - how would Lucy do?  She's been on a plane before, but now she is older and likes to roll around.  Will she stay in her seat without screaming the entire time?  And little Henry and his behavior issues - would he obey or would he try to do something crazy, like jump out of the plane (seriously, that crossed our minds).  All of our worries were for nothing.  The children were all so great on the trip.  I have no complaints whatsoever about how they traveled, and that's a pretty amazing thing!

Another thing that made this trip extra-special was that we were able to go at the same time as our former home health nurse and her family.  Nurse Valerie's son Simon suffers from Muscular Dystrophy and has many health problems because of it.  Somehow, someway, we were signed up to go to Orlando at the EXACT same time!  We even had the same flights!  It was a true blessing because the boys had travel companions, and of course they just love Valerie so much.  God was so good to give us that sweet time with Valerie and her family.  It was something I could never have dreamed or planned up on my own.

Our time at GKTW this go-round was even better than our first time, and I never thought it could get any better!  Facilities were updated and the weather was perfect.  This time we knew to take it slowly, to take it all in.  We were given tickets to all of the Disney parks as well as many other area theme parks.  We had more choices than we did in 2009, and since we had done this all before, we had a good idea of when to go where, what to take with us, etc.  God just had it all fall into place, even though each day held something unexpected and unplanned.  He causes ALL THINGS to work together for the good of those who love Him.  It's truly beautiful to watch Him turn stressful, hurtful things into something happy!  

Mike and I watched as the bond between our children grew while we were in Orlando. We so enjoyed seeing the boys hold Lucy, hold her hand, encourage her on the plane and in the car. My heart was so full.  And to see their eyes in the theme parks!  Oh my goodness, they were in awe and I encouraged them to close their eyes and "take a picture in their mind to make a memory".  They did this over and over again, and so many memories were made.

We also watched Lucy blossom into a little girl who can make clear choices, and we were excited and surprised to see how bright she truly is!  Lucy started reaching purposefully for us when she wants to be held.  This is HUGE for us, and it all happened on this trip.   We cry each time she does it!  And, she picked out her own doll at Disney - an Elsa doll.  She holds it purposefully and gives Elsa kisses when I tell her to. When I've given her another doll, she will cry and throw it down, reaching for her Elsa. Do you know what this means?  My Daughter understands me!  She knows what I am saying!  I truly did not know that this was possible.  I've always talked to Lucy like she can understand me because I have thought that she and Ellie have understood more than what we think.  But to see Lucy respond in such big ways has been overwhelmingly joyful, and she found that freedom there at GKTW - the same place where Ellie Kate learned how to smile.

We had so many great adventures, Friends!  Just to give you a taste, during our stay we took part in the following:

• horseback riding
• swimming
• Magic Kingdom
• Not-so-Scary Halloween Party
• Epcot
• Animal Kingdom
• Hollywood Studios
• Universal Studios
• Downtown Disney
• Character photos and meetings
• arcade games
• putt-putt golf
• electric trains
• electric boats
• playing on the giant, handicap-accessible playground
• Pirates and Princesses party
• GKTW Halloween Party
• Eating at an Irish pub and enjoying a live band and Irish dancers
• Visiting the ice-cream parlor three times each day
• trick-or-treating
• playing in the snow
• air brush tattoos in the GKTW Spa
• And SO MUCH MORE!

As we ended our time at GKTW, we were able to see Ellie Kate's star in the "Castle of Miracles".  It is something that each Wish Child gets when they leave - a star up in the galaxy of GKTW.  Mike and I cried and held each other as they found Ellie's star and the memories of our Sweet Girl started to flood our hearts.  I was overwhelmed, and I put off the "what-if" questions and focused on the fact that God was SO good to give us such two precious little girls who were formed intimately by Him.  I left relishing in the fact that we are SO blessed to have been able to stay at this incredible place TWO times - to feel this incredible outpouring of love given to us by strangers more than the average family.  God is good.  His ways are higher than ours, and He truly does cause ALL things to work together for our good.

The "Star Tower" 

Thank you so much for praying for our trip to go smoothly. It really did exceed our wildest of dreams! God truly was in each and every detail; I cannot say that enough.  He is so faithful, even when we are not.

The Belle of the Ball

We celebrated two special birthdays this weekend - the birth of Conner and the birth of Lucy!  I'm probably crazy for doing two parties back-to-back, but I had a lot of help (esp with Lucy's).  In no way am I superwoman.  Conner's party was at the Dodge Ball Dugout, where the boys could play and run and throw and sweat to their hearts' desire.  This is the second year we've used this venue because it's just so perfect!  Conner was able to invite a lot of his friends which really made him happy.  I'm so grateful that the Father made everything fall into place on what was a very chaotic and stressful day. 

We had a princess birthday party for Ellie Kate when she was three, so naturally I wanted to do one for Lucy Belle.  And since we are heading to Disney through Make-a-Wish, we have costumes ready for our Halloween events in Orlando.  So why not have a princess dress-up party?! 

 

Thanks to some very thoughtful and generous giving, Lucy wore a Cinderella gown, and she just loved it.  She is still covered in glitter, despite the bath.  And I dressed up as Snow White, thanks to my friend Marcy!  I had a birthday party as a child where Snow White was a guest, so it was fun to do this with Lucy and with the other little girls. 

Every little princess that came was beaming, all dressed up and excited for Lucy's party.  It meant the world to me that they would be there for OUR daughter.  We did special crafts, ate and opened presents - all of the "normal" stuff you do at birthday parties.  The Frozen soundtrack was playing in the background thanks to Julie Haller (who helped me a TON), and I just engulfed myself in the girly-ness of it all.  It was just so sweet and fun and I was able to experience it with my daughter. 

 

The cake was done by Daniel with "Baked" in Moore.  He donated his time, energy and resources to do Lucy's cake through Icing Smiles, a wonderful organization which takes care of the cake so the parents don't have to (financially, logistically, etc).  We were honored that a person we didn't even know, who didn't even know our story, would take the time to do this for Lucy Belle.  Visit that place if you get the chance, ya'll!  Lucy just loved her cake.

 

 

 

Everyone was exhausted after all the excitement but we realized that Lucy had slept through 99% of her party.  That wasn't typical for her, and when we thought about it, she had been sleeping more than usual the last few days.  Worse than that though is that Lucy was screaming non-stop from the time the party ended until the evening, with only a few breaks.  While we knew she wasn't critical by ANY stretch of the imagination, we did want to get her checked out so Mike and I took her to the ER and my Mom came and got the boys for us. 

It was an uneventful ER trip, and we at least had confidence in the resident taking care of us, so that's a step up from our last visit.  Nothing showed up in the immediate tests, but it could in the next few days.  They asked us if we wanted to be admitted (Lucy was still screaming at this point).  We did NOT want that, especially since we can take care of her at home at this point.  She slept hard and long and has really slept most of the day.  When she is awake, she's completely herself, full of energy - those moments just don't last long. 

We think Lucy's crying may be because of gastritis, which she and Ellie Kate have suffered from.  It's obviously not life-threatening, but it certainly is uncomfortable, especially when you can't voice the pain and make it better.  At the NKH Conference, I learned that Sodium Benzoate, one of the expensive experimental meds, can cause constant gastritis.  This makes perfect sense in the case of Lu Lu and EK, but it also makes me sad to think that they have to hurt and suffer in that way.

Here's the thing . . . we all need to be well because, in just a few short days, we will be leaving for Lucy's Make-a-Wish trip!  A once-in-a-lifetime, incredible, breath-taking trip that has been provided for us. It's a one-time deal, folks so we need to be well enough to enjoy it!  I'm being so protective of this trip because I know how much Ellie's MAW meant to her and to our family, and how absolutely magical it was. 

Here's how to pray:

• Pray for Lucy to be healed and for her to feel well before and during our trip
• Pray for Henry to be healed and for him to feel well before and during our trip
• Pray for Conner to feel well before and during the trip
• Pray for Mike to feel well before and during the trip
• Pray for me to be healed and to feel well before and during our trip
• Pray that things go smoothly this week and that they all easily and seamlessly fall into place

Mike and I so want this to be an unbelievable experience for our children.  We are so very humbled and grateful for this opportunity; I truly just can't say it enough! And thank you for continually keeping up with us, praying for us and supporting us in every possible way. 

Wrapped in Ellie Kate

It's a dreary day here in Oklahoma City, but it's an exciting one.  Conner's birthday party is tonight and Lucy's princess party is tomorrow morning.  I've been a busy bee, running around getting things together, but today has been a day of rest and of cuddling. 

Yesterday, I picked up what is now one of my most prized possessions - a quilt made of Ellie Kate's clothes.  Last winter, Cheryl Svetgoff, a precious friend, asked if she could make a quilt for us of Ellie's things.  I eagerly packed up those precious clothes and tearfully dropped them off with Cheryl. Everything in me wanted to tell her to "take care of these clothes".  I couldn't tell anyone to take care of Ellie Kate any longer, and the clothes were an extension of her.  Cheryl is so trustworthy and I knew everything would be taken care of in the most pristine way possible. 

Isn't is beautiful?  It's one of THE most precious things that I own!  And I've been snuggling up in it on this dreary day.  Lucy loves it, Henry loves it, Conner has wrapped up in it and so has Mike.  It's like being wrapped up in Ellie Kate.  I look at each pattern and I'm taken back to a place and time - a memory of my sweet girl.  It's so hard to explain, but this quilt, this tangible memory-whisper; is a reminder of treasured moments with Ellie Kate. 

Lucy, Wrapped Up in the Quilt

 

 

I'm so grateful for this gift.  I'm grateful for the talents that made it possible and for the graciousness of the hands that made it.  I'm content today, wrapped in Ellie Kate.  

To Everything . . . There is a Season

Seasons - they are so beautiful, don't you think?  We greet each of them with anticipation.  We eagerly await their coming and the transformation that takes place in everything around us, all because of times of change.  It's breathtakingly beautiful to think about, really.  The God of the universe delighted in His creation so much, He delighted in humans so much, that He decided to bless them with literal, tangible change. 

Hope, newness, excitement - all come as we crave spring flowers, summer sun or that pumpkin spice latte.  But there are also hard seasons.  Winter is a hard season for most, in the physical sense.  Sometimes the summer and it's heat are rough, and sometimes floods come with the spring.  So in all reality, not all seasons are pleasant, although we can always look forward to  . . . change. I truly look forward to the seasons changing, although I've been looking at them very differently over the last few days.


Ecclesiates 3:2-8

For everything there is a season,
and a time for every matter under heaven:

a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted;

a time to kill, and a time to heal;
a time to break down, and a time to build up;
a time to weep, and a time to laugh;
a time to mourn, and a time to dance;
a time to cast away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing;
a time to seek, and a time to lose;
a time to keep, and a time to cast away;
a time to tear, and a time to sew;
a time to keep silence, and a time to speak;
a time to love, and a time to hate;
a time for war, and a time for peace

 

This past week I was blessed to attend the 2014 International NKH Family Medical Conference in Boston, MA.  It was my sixth NKH conference to attend.  SIXTH.  For some reason that number hit me so hard and it seemed as though I was feeling every possible emotion known to man (that's a lot, ya'll!). 

 

For the first time, I was hit hard with the fact that this was a new season in many ways, one being a new season in the NKH Community.  None of the families that were there at our first conference were there this time.  Many of their sweet children have passed away.  And, this is the first group of NKH parents who don't know and haven't followed Ellie Kate and her story.  They don't know My Daughter.  They of course know Lucy Belle, and are all so caring and keep up with us, often cheering US on as we fight the same disease.  That feeling was something new for me.  Sadness, grief, loss, along with joy, relief and gratitude.  I realized that it's just such a strange season in MY heart, and this past week, I most certainly felt and/or saw every season listed in Ecclesiates. 

At the "Ellie Kate's Helping Hands" table, raising funds to assist fellow NKH families in need

(THANK YOU to everyone who gave for this precious cause!!)

I was surprised at the grief I felt over the loss of what used to be close relationships - us young NKH parents, talking, laughing, sharing; we bonded in a way that most do not understand.  And now we still love and have a bond - it's just different because our children are no longer here on earth with us, and that is hard.  We fought so eagerly and the great thing that bonded us together as we fought was the better treatment for our children, and that didn't happen in their lifetime; it changed the season of those relationships forever, though I do cherish each one.


And these sweet young parents, so full of and eagerness to fight and to do whatever it takes to find better treatment for NKH patients - entering a deep season of hope and of fighting.  I watched as they armed themselves with information, with loyalty and with the new sense of family they found at the conference.  Their season of hope is just beginning and it was beautiful to watch that take place. 

(we call this a 'surprise shot')

Seasons change.  Oh, how grateful I am for that!  Today I have mourned and wept and cried out for Ellie Kate.  I have felt so weak in my bones because of the ache I feel in longing to hold her again.  It's a physical ache that doesn't easily go away.  But I know . . . I know that seasons change, ya'll.  And I know that they can change on a dime, just like here in our great state of Oklahoma!

And you know what?  Not all of us are in the same season at the same time.  That's true physically and spiritually (again, isn't that so poetically beautiful?).  So when I am in the winter and my wind chills me to the bone, I can rely on my friend who is in a season of spring, waiting for the summer sun and all of it's glory to arrive at any moment!  And that's what I felt this week. 

Me, Raeanne, Tyler and Rachel

 

Julia

 

Dear Logan

 

 

Sweet Raeanne

 

Super Cooper!!

 

Baby Lucy Mae

 

Thank you to everyone who made it possible for me to attend the NKH Conference.  Mike, Stu and Debi Tully (my Mom and Dad), Jayme and Stan McLaughlin (Mike's momma and daddy), along with our nurses, all put in major overtime and did way more than I could have hoped or expected.  They cared for our children and loved them well and the house was still standing when I arrived this afternoon!  I'm so thankful that my family members are in a season of giving, of blooming, while I've been in a season of dryness the last few days. And to those who gave towards the NKH Crusaders Auction, especially towards "Ellie Kate's Helping Hands" . . . I am stunned at your continued support and generosity because I know it isn't always easy or convenient! How beautiful is our living God?!

*Be watching for more updates about Conner and Lucy's birthday parties, our upcoming Make-a-Wish trip and more on the conference!

NKH International Conferences of the Past . . .