My Heart Hurts

My heart hurts.  Lucy's surgery went incredibly well, and she woke up quickly from anesthesia.  I tried to focus on my Sweet Baby in pre-op and post-op, but all I could see was this . . .

All I could see was Ellie Kate in those cribs, bouncing around.  She spent so much time in these old white cribs - too much time.  A little girl shouldn't have to be bound up in a crib like Ellie Kate was on and off for all of those years.  Now - now, she is free.  She is free of the pain.  She is free of the tubes and monitors and cribs.  She is free; but I miss her more than I could ever say.  And it breaks my heart; sometimes when I'm here I can hardly breathe.  

Now I sit with Lucy, Ellie's little sister.  Will Ellie ever know how much her life has helped Lucy's?  I sit and watch Lucy scream and writhe in pain as we have trouble getting her pain under control. I rock her in those same chairs - I must have rocked a thousand miles in them. And tonight, I will make my hospital bed like I've done for over eight years now.  And I pray that the Lord will lift my spirits and lift my heart.  I know that once we are home I will feel a bit better, but I will never stop thinking of My Big Girl in those silly old cribs that were such a huge part of her life on earth.

A huge thank you to Brittany for yummy meals, to Julie for caring for our boys and loving on them recklessly, to Heather who came and sat with us during surgery even though her daughter is also in the hospital.  And a huge thank you to our nurses who make me smile as I fight back tears, the Surgeon who makes us laugh, the Attending who gives me a hug, the Pediatrician who stops by to check in and chat . . . all of you make a huge impact on us; on me.  You make this burden a little easier to bear.  

Jesus, Help My Heart - 

Ryan

Important Updates

Two important updates in one!  

LUCY:

I'm sitting here at OU Children's with Sweet Lucy Belle.  She's doing well, despite a hard seizure this afternoon.  Lucy underwent a kidney and bladder test this morning, and I must say she was a rock star.  I'm so very proud of My Girl!  I played praise and worship during her test, and the radiology techs sang along with me and Pandora.  There's nothing like worshiping during a radiology test!  What a special thing.  These are the same sweet techs who took care of Ellie Kate during her many tests here as well.  We have a special bond, and after today's radiology praise service, I think our bond is a little stronger.  

In the morning, Lucy will have her tonsils taken out.  This normally isn't a big surgery.  In fact, it only takes a few minutes and is usually done outpatient. Our doctors know us well though, and are aware that nothing about Lucy is typical.  They want to keep us a few days to make sure she does well after the procedure, which we are grateful for.  

It's always bittersweet coming to OU Children's.  I'm forever grateful for the doctors, specialists, nurses, housekeeping staff, transport staff - anyone and everyone we know up here.  There is something so comforting about getting on the elevator and hearing, "Hi Ryan and Lucy!", from a random hospital worker.  They know us and we love them.  But as I've said before, there is also a downside to being so familiar with the walkways, rooms and floors of this place.  It reminds me of the almost seven years we spent in and out with Ellie Kate.  

Everywhere I look, everywhere I turn, I see Ellie Kate.  I see a memory in my mind of the room we had been in with her; a memory of our favorite nurses caring for her and helping me wash her hair with those silly caps.  I see her in the lobby, in the elevator and on the sixth floor outdoor area where she hopped and played.  

Ellie Kate, Spring 2010

It's true that we are up at Children's about every other week for something, but sometimes the pain and memories hit me more intensely.  That's where I'm at with this visit.  Missing my girl.  Flooded with memories of her.  I may look like I have it all together here, but I don't.  I'm holding back the tears and my body manifests the grief in many forms, including nausea and migraines. I'm trying to hold it together because I have no other choice.  If I start crying, I probably won't stop. The only peace I have is in knowing that this is the life God has for us.  This is the ministry He's given us, the road He's given us to walk.  And that means that He's here with me every step of the way.  

God recently gave me the following verses.  The Holy Spirit's timing is perfect, and it never ceases to amaze me.  His word comes at just the right time, and I'm clinging to it even now as I write this post:

Psalm 28:6-9: "Blessed be the Lord! For he has heard the voice of my pleas for mercy.  The Lord is my strength and my shield; in him my heart trusts, and I am helped.  my heart exults, and with my song I give thanks to him.  The Lord is the strength of his people; he is the saving refuge of his anointed.  Oh, save your people and bless your heritage! Be their shepherd and carry them forever." ESV

Needless to say, we covet your prayers for Lucy's surgery and for our hearts as we are here once again, missing our girls, separated from our boys.  

JENNI:

We are doing an online fundraiser for my sweet friend Jenni who is fighting late stage cancer.  Jenni is currently undergoing treatment in Arizona, and it isn't covered by insurance.  Jenni, her husband Heath, along with her parents and seven children, all are greatly impacted by this long-distance situation.  

The latest fundraiser contains OKC Thunder prizes!  Although this effort isn't officially sponsored by the OKC Thunder, the franchise has been extremely generous in donating both an autographed basketball AND four tickets and a meal for the 2014-2015 season.  To bid on these items, simply go to our special Facebook page:  Thunder Jenni.  Bidding is easy, and it's already begun.  Winners will be notified on May 3rd, so jump online and get to bidding!  

For more information on Jenni and her journey, please visit Support Jenni Kufahl.  The family covets your prayers and support during this incredibly difficult time in their lives.

Trusting Him to Hold My Heart . . . 
Ryan

The Most Beautiful Gifts

"But whatever is good and perfect comes to us from God, the Creator of all light, and he shines forever without change or shadow". 

James 1:17, TLB

This month has been one full of gifts that have come directly from the Lord.  There's no explaining it, other than our Father has been at work and for some reason, He has been pouring out good things on our family.  Now, I'm not saying that the last month has been without struggle, sickness and heartache.  All of those things are a part of this fallen world, even for the Believer.  But, God is good and He pours out His goodness on His people for His purpose and for His glory.  

When I was a child, my Dad taught us about George Mueller - an amazing man of God.  One of Mr. Mueller's life purposes was to care for orphans in England.  As John Piper says of Mr. Mueller, "He had prayed in millions of dollars (in today's currency) for the Orphans and never asked anyone directly for money".  

George Mueller ultimately cared for 100k orphans and never once asked for funds.  Stories were told of the orphans being gathered at dinner time, yet there was no food to be served. George would pray with the children, asking God to provide a meal.  Then a knock would be heard from the door, and there on the porch would be enough food for the evening meal.  This is what I grew up learning with my family - to trust God with every single need because He is able.  

I'm here to tell you that God STILL gives excellent gifts to His children.  He not only provides for our needs, but also gives us things we would never think to ask for!  And the best part - those gifts aren't based on how good we are or on how much we do for Christ!  

Let me give you some examples . . . 

We have been praying for a storm shelter for our family.  We were half a mile from the May 20th tornado, and I desperately longed for a safe place for us to go.  A precious friend called me and said, "God wants you to have a storm shelter.  He wants you to be safe".  And through that beautiful friend and her family, this week we received this: 

It's a safe room!!  We can wheel Lucy in as she gets older and it's big enough to store her feeding pump, wheelchair and medical supplies!  A true gift from God!  

Sometimes God showers us with gifts that we don't even need.  They are just gifts that show us His love; to remind us that we aren't alone and that we are loved by others.  

Through the gift of a friend, we were able to get sweet pictures of Lucy.  Does this look like a catalog photo or what?!  Maybe I'm biased, but my dear friend Holly Hall with Legacy 49 Photography is the best photographer there is!  God gave me these sweet memories of Lu Lu, all because He is good.  And He did it through another friend who was willing to love me recklessly.  What a treasure!

Recently I received a knock on my front door, much like the orphans of George Mueller.  In fact, it was dinner time, although my friend Cheli wasn't bringing me food.  She was bringing me a priceless gift of art in honor of Ellie Kate.  This print was prayed over by the artist.  There is so much love poured into it.  And to make it even more special, Cheli has also suffered loss, although her loss was three-fold.  All three of her young sons were tragically killed, and now her ministry involves loving on people just like me.  Please take the time to check out Cheli's Story. A beautiful, priceless reminder of My Girl.

It is true, God gives good gifts.  They may be exactly what we've been praying for.  They may be unexpected things we didn't know we needed or wanted.  He gives perfect gifts to His children, and the best part is that those gifts aren't based on our accomplishments.  He hasn't showered our family with special things this month because we are so amazing or have been so good.  He simply gives because He loves His children.  What a beautiful thing.

Relishing in His Perfect Gifts,

Ryan

Giving Hope

Many years ago, before I had even met Mike, God gave me some special verses: 

"The Spirit of the Lord God is upon me, because the Lord has anointed me to bring good news to the poor; he has sent me to bind up the broken-hearted, to proclaim liberty to the captives, and the opening of the prison to those who are bound; to proclaim the year of the Lord's favor and the day of vengeance for our God; to comfort all who mourn; to grant to those who mourn in Zion - to give them a beautiful headdress instead of ashes, the oil of gladness instead of mourning, the garment of praise instead of faint spirit; that they may be called the oaks of righteousness, the planting of the Lord, that he may be glorified." Isaiah 61:1-3 (Emphasis Mine).  

I had no idea what the Lord was talking about when He impressed this word on my heart.  I knew I had been set free from many things, including eating disorders and legalism.  I knew He was bringing me out of a time of searching in my college years. But never would I have thought that He had a true mission for my life, and He was about to begin it right then.  In fact, He had predestined me for this mission.  It would be my life's purpose.  

There isn't anything special about me, Friends.  I'm just a normal, typical, struggling human being who has given her life to Jesus.  But that's the beautiful thing - He gives each and everyone of us a mission in life.  Look around you and you will know what it is.  Ask Him to show you!  For me, Hope Link is it!

In 2007, I met my friend Amy Haas and her beautiful family.  God truly brought us together through a series of random yet sovereign circumstances.  We both had daughters with rare disorders that no one had ever heard of.  We needed support.  We needed fellowship.  We needed to know that we weren't alone.  So, we decided to start our own support group for mommas of children with rare, serious and undiagnosed disorders.  

In 2008, Hope Link was birthed through much love and prayers.  It became our life mission as a family - loving on those who also have children with strange diseases and disorders.  We want to love them where they are; to support them, to let them know that they are not forgotten.  We want them to know that they are loved by the Father.  

God has grown Hope Link, which is now a full-fledged 501c3 and official corporation!  We meet monthly as moms, have family fellowships throughout the year and provide carebaskets to OU Children's hospital and beyond.  We also assist families who are trying to attend medical conferences for their special-needs children, and we provide an annual retreat for moms who are involved in our organization. We even have a ministry now called Hope Link Graduates, whose purpose is to love and support mothers who have lost children to those terrible rare and undiagnosed disorders. It is truly a beautiful thing to see what God has done - intertwining the hearts of these families!  

Right now, you have the opportunity to help support Hope Link, which is so very near and dear to our hearts.  You can join our Giving Circle, and donate only $10 a month.  Yep, just $10 a month.  You can even make a one-time gift, and it's super easy to do!  

But of course there're more.....by joining our circle and sharing with your friends, you'll have the chance to win a year's supply worth of Scentsy! Yep. 1 year!  If you aren't familiar with Scensty, check out their products here: Scentsy.  Personally, I'm in love with Scensty and use it everyday in my home!

Here's how you enter to win: 

1. Join our giving circle by clicking here. 

2. Share our Circle with your friends on facebook, twitter or instagram and use the hashtags #givehope #payitforward

3. Comment here on the blog and let me know that you completed steps 1 and 2, and you'll be entered into the drawing! 

The winner will be randomly selected using random.org on Friday, May 9th. So share away! 

The winner will receive a free 6 pack of Scentsy bars for 12 months from Hope Link OKC! {That's $300 worth of Scentsy wax!} 

To find out more about Hope Link, and what your gift will be going to, please click here: Hope Link Giving Circle. Thank you for praying for this ministry.  Thank you too for considering to donate to this cause, this life-mission of ours as a family.  It means more than you will ever know to us, and to the families whom we serve. 

With Hope,

Ryan

So Much

So much going on . . . 

Lucy 
Lu Lu is doing a bit better.  Her fever is gone, so the antibiotics must be working.  She still sleeps most of the day and is still requiring pain meds.  She's now started to have upper-respitory symptoms again, which worries me.  When will her sickness end?  

Lucy's balance is off and she is having to wear a helmet during the day so that she won't bust her head on the floor.  She's banging her head and falling backwards from a sitting position.  The helmet was Ellie Kate's, and I'm so thankful that we have it for little Lucy to use.

Sickness
Mike and I started to feel sick mid-week.  My husband is NEVER, ever sick, so when he was in bed and missing work, I knew it was something big.  We've been knocked off of our feet quite literally, and haven't been able to function.  We finally went to a clinic yesterday and were diagnosed with strep and pharyngitis.

I'm baffled that these illnesses can shut us down for so many days!  In our almost twelve years of marriage, we've never been ill at the same time.  This is a first!  We wouldn't be able to get by without our nurses and without my Dad, all of whom have been helping above and beyond.  Plus meals from "How Great Is Sarah" and "Generous Julie";).

Jenni
My friend is still fighting valiantly.  I'm so grateful for my Dear Friends in Scottsdale who have been able to love on Jenni's family.  It amazes me how the Body of Christ works - being His hands and His feet.  What a precious thing this is!  Please continue to pray for Jenni and her family in specific ways.  We are crying out to the Lord for her life.

There is a fundraiser going on for the Kufahl family.  Buying a ticket will give you a chance to win a large storm shelter (something that's important here in Oklahoma!).  Check it out here:  Kufahl Fundraiser

That's about all I have energy for today, Folks.  There's just so much sickness going on, and we are worn-down.  When I have more energy, I will update you on how good God has been to us this past week, and how He has provided for us in miraculous ways, doing things that only HE can do.

Resting in Him,
Ryan

Crying Out

Two posts in two days!  I'm on a roll.  Really though, I'm posting again because of some important things that have come up.  Please take some time to read, pray and act as the Lord would have you.

LUCY:

 Lucy is still struggling, although she is home.  We are pumping her with antibiotics, plus the bolus she received yesterday in the ER.  She is tired, worn-out, dealing with increased seizures, and is still not acting herself.  She's pale and her voice is still gone from all the crying on Saturday.

Lucy now has diarrhea, which is to be expected with strong antibiotics.  We have noticed what looks like blood in her stool, which is really concerning to this Momma. We are working on these things, along with the strange bacteria that was found in her urine.  Because of the urine results, we went in for ultrasounds of her kidneys and bladder today.  We should know the results in the next two days.  I must admit, My Girl is a trooper!!  I'm so proud of her.  And here's a pic of me with Lucy's stool samples from today (fun times):

JENNI:

Many of you have heard of my precious friend, Jenni Kufahl and her struggle with late-stage cancer.  I hope you have been able to read my last post and are praying for her family.  She is strong and is fighting; that fight has now taken her to a center in Scottsdale, AZ.  We are trusting the Lord come what may, but we are asking Him to move mountains and to heal Jenni on earth, for His glory.

This evening I attended a prayer service for Jenni and her family.  It was precious to be surrounded by my Christian Heritage Academy family - people I know and people I don't.  A community, a people of God, a people who love Jenni - all coming together to pray specifically.  We were crying out.

Jenni's husband Heath gave us prayer requests, which we prayed for in groups this evening.  I'd like to share those with you so that you can be praying.  I covet your prayers.  The family covet your prayers.  And I have no doubt that the Lord is honored that we are calling out to Him on Jenni's behalf.  Below are the requests:

1.  Pray for Jenni's immune system to become strong.  She needs this to happen in order for the treatment to be successful!

2.  Pray for Jenni's healing ON EARTH!  We KNOW that God will heal Jenni.  He promises that for those who trust Him as Lord and Savior.  But, we are asking Him to spare her life and heal her now, here on earth.  We are asking Him to extend her life through healing on earth, instead of giving Jenni the Ultimate Healing at this time.

3.  Family - Jenni has a big family (which is wonderful).  This family needs direction and wisdom.  They need to be clearly directed by the Lord for so many details (you can imagine). They are special to me, and her family includes two younger brothers and an older sister.  Of course there are her precious parents, both of whom have played a large role in my life and in growing up.  Jenni and Heath also have seven beautiful children ranging from 13-4.  Here's how you can pray.  Below is a list of her family members so that you can pray specifically and as the Lord leads you . . . 

• Maddie 
• Connor
• Kelton
• Macy
• Reese
• Brody
• Cruz
• Merci (older sister)
• Johnny (younger brother)
• Tony (younger brother)
• Deani (momma)
• John (daddy)

4. Provision - this family is incredibly humble, and has yet to seek out funds or financial help on their own.  They just want people to pray for God's provision (even though they were worried people would mistake that for asking for financial help).  Not all of us can give, but we can ALL pray!  After all, we Our God is Jehovah Jireh, "The God Who Provides".  He owns a cattle on a thousand hills, and He will take care of this family.  Pray that He will do it in creative ways - ways where only HE will get the glory.  

Thank you for praying for Jenni.  Thank you for praying for Lucy Belle.  I am weary, but my God is strong.  He WILL prevail and He WILL have the victory, whatever that might look like.  

Crying Out for Him to Move,

Ryan

All for His Glory

God causes ALL things to work for His glory.  Not only that, but for those who trust Jesus as their Lord and Savior, God uses ALL things for our good.  

Think about that for a little bit . . . the God of the Universe is intimately involved in every.single.aspect of your life, Believer. And He is working it for YOUR good because He loves you so very much.  And He will get all of the glory!  


Here's the infallible Truth to back this up: 

Romans 8:28
 "And we know that for those who love God all things work together for good, for those who are called according to his purpose". (ESV)

And - 

I Peter 1:6-7 
 "In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ". (ESV)

With Lucy sick, with me missing Ellie Kate, with so many friends hurting, with the earthly death of Ellie's friend Jessica, with the decline in my friend Jenni's health (due to aggressive cancer) . . . well, I've just been thinking a lot about hardships and trials.  And Jesus has quickly and gently reminded me that He's got it all under control.  

Friends, it doesn't always look the way we want it to; I would dare say that most of the time, life doesn't look the way that we hoped or dreamed!  And, even though we may pray, do the right things, seek the Lord, give Him the glory through our trials, etc - even though all of this may be true, God still might not answer our prayers the way that we want.  It still hurts.  Life hurts.  Physical and mental illness occur.  Loss occurs.  Betrayal, hurt, financial set-backs, troubles at work - it's all a part of our broken, fallen, hurting, sickly world.  It makes me long for Heaven!!  

As those who love the Lord Jesus, we have to remind ourselves of the truths listed above.  And there are SO many other similar Scriptures I could list!  He LOVES us.  He uses our lives, our weaknesses, our past sins, our accomplishments, our ILLNESSES for our good and for His glory, and we may not understand it this side of Heaven.  

And now, the personal stuff - 
Lucy has been really sick.  It's been several months of screaming, of testing, of doctors appointments.  Our girl has been poked and prodded, and we never have come to an answer.  On Sunday, Lucy had one of her VERY worst days.  Really and truly, it was the one of the hardest days of her life.  She was screaming in pain NON-STOP.  No meds would help.  No position would help.  Rocking, music, driving, singing, walking, pain meds, anxiety meds - nothing would help, and we felt hopeless. It was heartbreaking.  

We took Lucy to the doctor yesterday and had two appointments.  They looked her over really well, but didn't come to any conclusions.  This morning, she started running her very first fever.  Really!  It was the very first fever she's ever had and it rose super quickly.  I knew something was wrong as she was lethargic, seizing and had a very high fever.  I took her to the ER.  

Turns out Lucy has a bad UTI.  Other things are up in the air right now, so we are waiting for lab results.  The doctors let us come home after tests, fluids and IV antibiotics.  We will do antibiotics at home and watch her closely.  As of this evening, she still has a fever.  Please pray for our girl.  

Also, as I mentioned above, my precious friend Jenni is struggling for her life.  Her battle is ending, according to doctors, but we know that God CAN heal her completely this side of Heaven (as her daddy says).  Would you pray for Jenni and her husband Heath?  Pray that God would prepare their hearts for what He has planned.  Pray for their seven young children, that they would be surrounded in peace that passes all understanding.  And pray for the rest of their family who is longing to see God move on Jenni's behalf.  

May the truths shared tonight resonate with your heart, Sweet One.  Jesus, thank you that your actions aren't based on MY actions!  Thank you that it isn't up to me, up to us.  Thank you that it's not my faith that makes you move mountains, because my faith is so small! Thank you that you don't move because of my actions or "goodness".  You move as you see fit, for our good and for your glory.  

Glory to the Father, Son and Holy Spirit!
Ryan