Matters of the Heart

The human heart is a strange thing, isn't it?  We all have so much that we carry within us, within our hearts, so to speak.  I know I do.  And much of what's in my heart has been coming out lately, and it hasn't been pretty; cleansing, but not pretty.  

My heart has been overflowing with the misery of missing my daughter.  For the last few days, it truly has felt like my heart was breaking.  My tears have flown and my crying out to God has been intense.  I have felt angry, and that really isn't something that I've felt in a while.  I think it's good, though.  It's good to work through grief, although it is sometimes so ugly, so awful, so terrifying, so purifying . . . 

These things have affected my physical heart as well.  My blood pressure has been crazy.  Thankfully, I got on some meds today and I'm praying it will all work out.  It's crazy how the spiritual, how the inner-man affects the physical.  

Many of you may remember that Mike's Daddy has been having heart trouble as well.  Stan will have a small procedure tomorrow morning that will hopefully correct a very big problem.  Our children adore their Paw-Paw, and we would love your prayers that everything goes smoothly and that everything is corrected as it should be.  

Tonight, Henry is struggling with his asthma and with bronchitis.  Poor guy can't get over his fever and hard breathing. He's allergic to the antibiotic that he was given yesterday, so we are waiting to hear what the next step is for his treatment. Hopefully he will rest well tonight and will soon be better.  He misses his school and friends!  

Thank you for standing by us.  Thank you for loving us, even during the ugly times.  

Ryan

Confessions

I have some confessions to make, Friends.  What better place to confess than on the world wide web (enter sarcasm here)?  Really though, a few things are on my heart, so bear with me as I open up and keep it real this evening . . .

I'm bummed this weekend and my heart is heavy, down-trodden, if you will.  I have a bit of a bad attitude.  I am discouraged.  Like I said, I'm keeping it real.

This weekend was supposed to be an amazing time.  Mom and I had the opportunity to go to a Women's Conference in Tulsa with a great group of ladies from my parent's church.  It is a fun group of girls that has welcomed me with open arms, and I was looking forward to spending time with them and getting a fresh Word from the Lord.  And who doesn't want to get away for a bit?!

Friday started off well, and we made it to our destination, laughing all the way.  My friend Nina and I were even able to make a Hope Link visit to a sweet boy named Joshua!  Can I tell you how much I LOVE doing those visits?  It was very sweet, and I left smiling.

As the day and evening went on, my head started hurting badly.  I'm having some blood pressure issues lately and my high BP was making me feel awful.  I did my best to focus, stay calm and keep my heart-rate low during our Conference time.  It wasn't easy though because I SO wanted to get into it!  I SO wanted to get a fresh word from the Lord.  I SO wanted to hear something life-changing, something meant completely for ME!  I really don't feel selfish in confessing that - I just was expecting something to be shared that was meant just for my heart; for a connection of some sort to be made.  I was looking forward to it.  I needed to hear something just for me.

I did walk away Friday night with something that I felt God had for me . . .

"When God says 'Go Forward!', don't even think about standing still". God has been calling me to move forward for a while.  I haven't been exactly sure what He was telling me to go forward from, but hearing this confirmed that indeed my Father wants me to move forward.  And then, God laid it on my heart what I needed to walk forward from; what I needed to leave behind.  It's sin that I've carried too long.  And just like that, God confirmed to me that I needed to walk forward and leave that sin behind.  I made a choice to do just that; walk away from my sin and lay it at His feet once and for all. 

Even with God giving me that on Friday night, I walked away tired, discouraged and feeling sick.  I am not ignorant to Satan's schemes. I know that I was under spiritual attack (as I'm sure many others were), but that was so disheartening to me. Couldn't I just have one weekend free of attacks and hardships?  Admittedly, I'm sure things seem worse to me since I don't feel well (my BP is still very high).

All weekend I was reminded of the loss of my Ellie Kate.  People we met.  Friends I ran into that follow our story.  I had jealousy and anger over a woman who shared at the conference about her grandchild with a behavior disorder.  I wish MY girls had a behavior disorder rather than being born with something terminal.  I wish my daughter wasn't dead.  I wish both of my daughters could be dancing like the little girl in the video that was shown on the big screen.  I wish my daughter was alive and was able to twirl and dance for beautiful pictures like my friends.  But, that isn't what God has chosen for me, and sometimes the realization of that is just plain hard.  

So, here I am this evening, stuck in bed because of my blood pressure, looking over my notes from the weekend.  I didn't get the major revelation that I was hoping for.  I didn't get the connection I was desperately seeking.  I didn't get to stay the entire weekend with my momma (because of being sick), as we had planned.  I'm brooding over my sin, brooding over my loss, brooding over my hurt.  That's just me being honest with you.  I have no words of wisdom or encouragement for you this weekend.  I am so sorry about that, because I truly love allowing God to breathe life into others through the words that He lays on my heart to share (believe me, it's from Him and not from me!).  Tonight, I have nothing.

Maybe this is a good thing - being at the bottom of yourself physically, mentally and spiritually.  I think that's where God wants us a lot of the time, even though it isn't a popular place to be.  It isn't a fun place to be either, but I know many of you are there tonight, just like me.

Ryan

It's Her Birthday!

It's Lucy's 2nd birthday!  Can you believe it?  Our Lucy Belle turned two years old today, and I couldn't be more proud of our girl.  It seems like yesterday that my water broke and two hours later, we had a baby girl being whisked off to the NICU.  We were uncertain of what was to come then and yet, when we first laid eyes on that petite blonde baby, we were full of hope and anticipation.  The same is true to this day.

Lucy Belle means "Beautiful Light", and Lucy truly is a light for me.  I had no idea how much of a blessing, how much of an encouragement, how much of a life-line that Lucy would be to me.  She shines light into the dark places of our hearts.  She reminds us of the beauty that comes from being broken.  Truly, I don't know what Mike and I would do without Lucy - especially during this time of loss.  Lucy gives us hope and she reminds us of Ellie Kate in almost everything that she does.  It's an indescribable blessing to us.

Today was filled with appointments, all of which went rather well.  The doctors are a bit concerned with Lucy's rapid weight gain.  She's gained two pounds in one month!  Don't get me wrong, I LOVE seeing a little chunkiness on those cute thighs. She even has more energy because of that extra weight!  But, we don't want the rapid gain to become a pattern, and with the metabolic issues coming along with NKH, we need to keep an eye on it.

Little Lucy also has had a major increase in seizure activity, numbering about 20 seizures a day that we see (we know there are many that we don't notice or that are not visible) .  As you know, NKH is just such a mystery, and the doctors truly don't know what causes the increase in seizures.  Has it been her ear troubles?  Is it her gut?  Are her metabolic issues causing a problem in breaking down the anti-seizure meds?  Is it progression of NKH?  Is it because of her rapid weight gain?  No one knows, like I said.  All we can do is rule things out, which is why we checked her glycine levels today.  Those results may give us a bit of direction.  We are also upping some of her anti-seizures yet again in hopes of slowing down the seizure monster.  Please pray that the seizures will slow down and leave little Lu Lu alone.

We are also still having to use pain medicine to help with Lucy's crying spells.  These "crying spells" are just unexplainable, which is maddening.  Is it seizure activity?  Sometimes, yes.

May I ask you a favor?  Would you subscribe to my blog, The Wonderfully Made Life?  When you subscribe, you will receive email updates letting you know when something new has been posted.  It's a great way to stay connected!

To subscribe, just do the following:  

1. Go to the blog (if you are reading this, you are already there!)
2. Look for the small BLUE sign on the right hand side of your screen (located underneath 'FOLLOWERS')
3. Click on the BLUE sign (aka 'join this site')
4. Sign in with a current account, or make a new one!  
5. To join (become a follower) from your smart phone, scroll to the bottom of the page and click on "view web version" and follow the instructions above.

In closing tonight, I leave you with Isaiah 35, which was given to Lucy and our family for this coming year.  How faithful is our God, even when we are not!!  

The Ransomed Shall Return - Isaiah 35, ESV

1 The wilderness and the dry land shall be glad;

the desert shall rejoice and blossom like the crocus;

2it shall blossom abundantly

and rejoice with joy and singing.

The glory of Lebanon shall be given to it,

the majesty of Carmel and Sharon.

They shall see the glory of the Lord,

the majesty of our God.

3 Strengthen the weak hands,

and make firm the feeble knees.

4Say to those who have an anxious heart,

“Be strong; fear not!

Behold, your God

will come with vengeance,

with the recompense of God.

He will come and save you.”

5 Then the eyes of the blind shall be opened,

and the ears of the deaf unstopped;

6 then shall the lame man leap like a deer,

and the tongue of the mute sing for joy.

For waters break forth in the wilderness,

and streams in the desert;

7 the burning sand shall become a pool,

and the thirsty ground springs of water;

in the haunt of jackals, where they lie down,

the grass shall become reeds and rushes.

8 And a highway shall be there,

and it shall be called the Way of Holiness;

the unclean shall not pass over it.

It shall belong to those who walk on the way;

even if they are fools, they shall not go astray.

9No lion shall be there,

nor shall any ravenous beast come up on it;

they shall not be found there,

but the redeemed shall walk there.

10 And the ransomed of the Lord shall return

and come to Zion with singing;

everlasting joy shall be upon their heads;

they shall obtain gladness and joy,

and sorrow and sighing shall flee away.

The Wonderfully Made Life - Welcome!

So, this is it!  I've finally started the blog.  It's been SEVEN years in the making with Carepages, emails, posts, etc.  We are finally ready as a family; I am finally ready as an individual, to do this!  It wouldn't be possible without your encouragement and without the help of my good friend, Allison Dalke.  Yay for a blog!!

And, you know what's cool??  We are currently adding ALL SEVEN YEARS worth of Carepage updates to the blog!  Soon you will be able to access each and every entry we've shared.  It may take a bit, but we will work hard so that you can see our story from the beginning!  I'm super excited about this as our entire life is evidence that God is truly with His people, and that's something I really want you to realize! 

The Wonderfully Made Life is our life.  It's the ups and downs, the roller coaster and the twists and turns of our crazy life.  It's the life God has called us to; the life God designed for us, and He's working it all together for His glory AND for our good.  That's what He's promised us - life abundant and full here on earth, despite what life may throw our way (including special-needs, illness and death!). This is the place I will share my heart, share our stories, and share our experiences.  It's my diary, of sorts.  The Diary of a Special Needs Mom! 

Friends,  I invite you to come along for the ride.  Join us for the craziness of our journey.  Sign up to receive the updates, much like you did with Carepages, although this will be much more simple and easier to share with your friends!  Speaking of that, be sure to share The Wonderfully Made Life with your friends!  I know this is what God has called me to do and I know there are families out there who need to be reached and need to be reminded that they are NOT alone.  Spread the love!  

More to come soon, I promise.  Until then, love well, serve often and pray much!  

Ryan
PS:  

Birthday Blessings

Ohmygoodness, you know how to make a girl feel loved!  Lucy had a BALL at her second birthday party this last Saturday!  I can't thank you all enough for the sweet birthday wishes, prayers and messages of love.  Thank you too for all who were able to come and celebrate with us!

The look on Lucy's face when we sang HBD to her was PRICELESS.  She KNEW it was about her, and she was just thrilled.  She loved her tutu as well, and didn't even try to take her hair bow out!  Ellie Kate would be so proud:).

Our cake was done by a new friend, Cheryl.  Cheryl is a cake decorator and baker here in OKC.  She is a Believer, and we were connected to Cheryl through the non-profit Icing Smiles.  Icing Smiles provides cakes to terminally ill children and their siblings - how cool is that?!  And we had delicious cupcakes done by my friend Alecia Hoerner, who also is a baker and is preparing to move to Haiti with her family in just a few months.  We were SO BLESSED by the gifts of these cakes!!  They made the party:)!

Saturday was pretty much perfect, all the way around.  When I had prepared for the party earlier in the week, my heart felt sad.  I was sad that Ellie Kate wasn't there to celebrate with us.  I was sad that I didn't spend more time with Ellie at Lucy's last birthday party (which seems just like last week).  All sorts of thoughts ran through my mind.  But, once I saw how happy Lu Lu was that day, and how much fun she had, even when we got her dressed that day, all of my sorrow melted away.  I did of course miss Ellie Kate, but our hearts were light and we were all able to celebrate, laugh and love.

You loved us so well too - the gifts, cards and notes were just precious, and are things that we will treasure always.  I already have the cards in Lucy's "Precious Box".  And WOW - I have just been blown-away, I have been touched, I have been humbled by the SEVERAL DONATIONS TO KNH RESEARCH that have been made in Lucy and Ellie Kate's name!  I don't think I could hope for any better gift in my life!

Now, you may remember that my blog will launch on Lucy's birthday, which is still true!  Lucy's actual birthday is Thursday, September 26th, and the blog will launch sometime that day.  Be sure to watch for it!  As a reminder, we will stop posting on Carepages, and use the blog instead.  It's easier to use, easier to navigate and easier to share.  Don't worry though - we will never close our our Carepage, and you will actually be able to read each entry straight from the blog!  I can't wait for you to see it.

Thank you for loving us, Friends.  Thank you for celebrating Lucy in a big and special way!  

Sickness

Well, it turns out that Lucy DID have a stomach bug. And not just any stomach bug - the major, heavy-duty, all-consuming tummy bug that is going around. It's now Tuesday, and she still is showing signs of this illness.

It seems as though I too have the bug, although it's strength seems to be waining. Not only does it cause issues with the gut, but also causes major malaise. Lucy and I have been tired and have slept alot! Thankfully our Princess has stayed out of the hospital since last week, as Nurse Mindy, Nurse Valerie, and Mike have cared for her with the utmost detail. I have to admit though, the Princess is starting to turn into a Diva with all of this constant attention!

I hate being sick, but it seems to happen to me often - especially around busy times when I need to be on top of my game! School starts this week, and Henry will begin Kindergarten and Conner will begin the Fourth Grade. They are excited for now, and so am I. I think the schedule and routine will be good for them. It is so strange not to be planning for Ellie to go back to school alongside of them. I guess it's just another of the "firsts" without her.

Some exciting things are coming up:
1. TEXAS! Our trip to Texas Children's in Houston is coming up quickly, and we are busy making plans and getting things in order. I cannot wait to go.

2. BLOG! I'm still working on the blog, and I'm not ready to reveal the name just yet, but I can tell you that we will officially switch over to the blog on September 26, 2013 - Lucy's Second Birthday!

3. LUCY's BDAY! As many of you know, we often held big, giant bday parties for Miss Ellie Kate. I am SO glad that we did this and that we were able to share our daughter in this way with the people who loved her and prayed for her over the years. We want to do the same with Lucy Belle, especially since we just had a family party last year. I'm not promising a big party EVERY year, but this year, it looks like it will happen. Keep watching for more details!

3. HONORING ELLIE KATE! Even though it's hard to think about, Ellie's birthday will be here before we know it (Decemeber 4th). We are working hard to make this a special day - a special month - as we celebrate our girl's life. Be watching for more information on how we celebrate Ellie Kate this year. We hope to make this an annual event, which will include a little craft party for patients at OU Children's Hospital(where Ellie spent her last birthday). We will also be handing out individual gifts to those on the 8th floor, continuing EK's legacy of loving others well.

There's no doubt we will be busy the next few months, that's for sure! Thank you for praying for us through this latest illness. I know it's the Lord that has spared us from being in the hospital once again.

With Love,
Ryan

What a Day

Last night Lucy started vomiting. It was just a few times and she always came back to her "self" (baseline), so we thought it was just a fluke. But overnight, her residuals were really bad, which means that her feeds weren't going through her little body. Thankfully, Nurse Valerie was here and was able to stop and start the pump and take extra care of little Lucy, who also started having an increase in seizures.

This morning, Lucy was very tired. I kept her on continuous feeds (on the feeding pump), and thought she was just worn out from last night. But then she started vomiting non-stop, projectile, and dry-heaving. When she wasn't doing that, she was listless and extremely lethargic. I've never seen her so out-of-it, and it reminded me so much of Ellie Kate's illnesses. It scared me, and after talking to her doc, we decided to get her to the ER.

This ER visit was virtually perfect. They took us right back and knew who we were, even though Lucy hasn't been there often (Ellie's reputation lives on and her experiences help Lucy!). Since Lucy was having a lot of seizures, they hooked her right up and accessed her port immediately (thank you Lord for the port access!).

After two boluses of fluids and time with maintenance fluids, Lucy started to perk up. She also had some IV anti-seizure meds as well as zofran for nausea. Once she tolerated pedialyte and had a wet diaper, we felt more comfortable in going home rather than being admitted. Since we have home health, the doctors felt super comfortable letting us go home.

So, here we are! Lucy isn't lethargic anymore, which is a HUGE blessing. She isn't tolerating formula but is doing great with her pedialyte. We hope that she will SOON be back to formula. She just has to get back to her feeds quickly.

It's been emotionally draining, as this is the first major time we've gone in for GI issues with Lucy. It's so much like what Ellie used to deal with, and that is scary. We don't want to repeat history and it's hard not to wonder or worry. Our time with the specialist in Houston can't get here fast enough!

Thank you for jumping in and praying for us. Thank you too for all of the calls, texts, emails, and posts on FB (isn't FB a wonderful way to know how to pray??!!). We love and appreciate you all so much.

Ryan