Broken-Down

The time has come - the time I dreaded and hoped would never appear. I'm afraid I'm a bit broken-down. My mind, my body, my spirit are bruised, and that has me in a lowly place. I know that may not make sense to you, and for that I apologize. 

I've tried so hard for so long to keep going and keep my spirits high.  I think I've done a good job at it, at least for a good stretch of time. Lord knows that I've tried my best.  But now, it's caught up with me.  I think eight years of constant going, constant fighting, constant struggle, constant hardship, constant mourning; it's all gotten to me, and I need a break. 

I'm not sure what this looks like exactly, but I do know that I need a rest.  I'm surrounded by wonderful support and love, of which I am so grateful.  For now, I will be less visible on Facebook, Twitter and all of the other various outlets, including the blog. I will also be taking a break from messages of all kinds and from other busy things, as my mind needs a rest. I'm not sure how long it will take for me to rest and get back to a healthy place.  I just ask for patience. 

And really, you all have been so incredibly wonderful for the past years and for the ups and downs of our roller-coaster.  You've stepped up and stepped in, loving us recklessly and selflessly.  It's been amazing, and I thank you with all that I am.  I also thank you for giving me grace in this season.  Don't be afraid to reach out to me, to us; just know that we may not get back to you as soon as normal. 

Truly, I do not want any extra or any special treatment.  This is just life, and we are in the midst of a season of heartache. The sun will surely shine again, and I am eagerly awaiting that day. Thank you for understanding and for loving us along the way. 

Ryan

The Spoiled Child

Hi.  My name is Ryan Elizabeth Tully McLaughlin, and I have been acting like a spoiled child.  There, I said it. And the worst part folks, is that it's true.

You see, God has been incredibly good to me.  He's been good to my family.  The things He's done for us - well, they don't just happen, people.  I mean really, Mike winning a car after his was stolen a few years ago? Mike and I being sent on a trip to Mexico (without paying a thing), just because? Those things don't just happen, and I know that.  I hesitate calling them "blessings", because some may think that means we've earned those things, or that God loves us more, or that we've been so awesome that we've made those things happen, so to speak.  Totally not the case, I assure you.  It's just God's mercy.

It's not often that I get "down" for days at a time.  The last time that happened was when Ellie Kate died and a part of me died too.  But this week, that "down" feeling, that depression, that anger has not only crept in - it's run into my life, my heart, flags-a-flying.  I'm sad to say that I've given into that and I've hurt those I love along the way.

I'm not sure what sparked it all.  I'm just plain weary, and I say that knowing that I am not the only one out there (including in the world of Believers) who is down, out, sad, angry, and weary.  I am WEAR.Y.  Weary.  Worn.  Tired.  We've been on this ride for over eight years now, and that's one long fight (and many of you have been fighting even longer - God bless!).  Eight years is a freaking long time, ya'll!

Here's what I mean . . . on a daily basis, I do the regular things like keep our home clean, try to keep up with laundry, try to keep our fridge stocked (not up to my restaurant-owner-friend Nina, but good enough; maybe).  I try to keep homework going, get the kids dressed half-way acceptably and to school on time, and all of the other things that go along with being a typical mom (and I have a lot of help from our nurses who go above and beyond).

Then there's all the stuff that goes along with being a special-needs mom and living in that world.  On a DAILY basis, I am contacting nurses, nursing agencies, therapists and their offices, pharmacies and their pharmacists, doctor offices and all that comes along with that.  I also am in touch with insurance agencies, the state's early intervention programs, the companies that provide our home health supplies, the companies that supply Lucy's equipment.

Everyday, I fight for my daughter.  Everyday I push so that she receives what I feel that she needs.  Everyday I am her voice because she literally cannot speak for herself.  I am her advocate and I fight for her care every moment of the day, and her well-being is continually on my mind.

And then there is my precious Hope Link mommas and their struggles and my NKH Family and their struggles. And my friends struggling with cancer (Jenni!), and friends struggling financially. All of these trials I take on personally because I LOVE these people and they are truly my family.  It's a privilege to love them, to hurt for them and to pray for them and I wouldn't trade it for anything.

Lastly, and most close to my heart other than Lucy's care, I mourn the loss of my daughter.  Every day I am reminded that Ellie Kate isn't here.  Every day I see her bus and picture her on it.  Everyday I touch her clothes (In fact, I sleep with one of her favorite shirts).  Everyday I wonder what she would look like.  On holidays especially, I wonder what I would have been dressing her up in (surely some giant hair bow and some monogrammed clothes).  Sometimes I think I hear her scooting across the floor.  Sometimes I accidentally call Lucy "Ellie" (many people do this, and it's endearing).  Everyday it hurts even though I know where she is.

Add it all up and, well . . . sometimes it isn't so happy.  Sometimes I am struck with the fact that my life is hard and it isn't going to change anytime soon.  Sometimes it isn't so easy to "rise above" to focus on "things above" to remember that "God is good".  When you are smacked in the face with reality, it knocks you down.  And that is where I am this week.

I'm acting like a spoiled child because I know the character of My Savior.  I've seen Him provide above and beyond over and over and over and over again.  I've seen him meet me in my dreams and in His Word.  And still, I'm stomping my feet.  

• I want my daughter to be healthy.  
• I want Ellie Kate to be here on earth.  
• I want Ellie and Lucy to be able to go to the Daddy Daughter Dance that so many of your sweet girls went to. 
•  I want my Daughter to go to dance class and actually be able to participate in a typical way. 
•  I want to be potty-training my daughter rather than trying to figure out how to order bigger cloth diapers and a carrier that will help me carry her around the house for years to come. 
•  I want to be there for my boys.  
• I want to volunteer at their school.  
• I want to be present there like the other moms, maybe even substitute. 
•  I want to take them to the batting cages, or get them more involved in sports with us taking them to practice and games.  
• I want them to be more involved in church and get to go to all of the activities that go along with that.  
• I want a pool.  
• I want a car that isn't beat up (who dreams of handicap-accessible van, btw?). 
•  I want to be out of debt (including medical debt). 
•  I want time with my husband and time alone with my husband.  I want to be able to work out on a regular basis. 
•  I'd like to consistently go to Bible Study. 
•  I want a storm shelter! 

But alas, this isn't what God wants for us right now.  And, did you notice something about that list of mine?  It's selfish.  Nothing on there is bad or harmful.  It's full of GOOD things.  But, it's selfish nonetheless.  The main theme is "I want".  But see, this life isn't about what I want.  It just isn't.  As a Believer, as one who has asked Jesus Christ to be my Lord and Savior, I am called to die to my self.  That means dying to these things I want; it means giving them up to the Lord and letting Him do what He wants to do, when He wants to do it.

The trials of this life are only for a little while.  As one who has accepted Jesus and depends upon Him for my salvation, I know that this life is but a vapor (James 4:14).  My life in eternity is the best part, and I have that hope!

I think that God knew that I wouldn't just choose to die to myself.  He had to give me a life where I HAD to die to myself constantly.  I'm grateful for that, and for today, I am choosing to walk in gratefulness rather than dragging my heels like the spoiled child I have been lately.  How thankful I am for a Father who loves me even when I stomp my feet.  How thankful I am for a Husband who continually loves me and blesses me, even when I act terribly.  How thankful I am for parents that continually help and serve me, even when I act like a brat.  And, how very grateful I am for the promise of a new eternal life that I have in Christ Jesus!

Choosing not to be spoiled!
Ryan

• Please continue to pray for my friend Jenni and her family as she continues to deal with her stage four cancer
• Please pray for my dear friend's husband, Bill Archibald.  Bill and Kristin are fellow NKH parents, and Bill is having terrible complications from a major surgery he recently had.  He is a precious man who needs our prayers!  

Down and Out with a Sick Little Lucy

Oh, Brother.  I am worn and weary tonight, friends.  It has been a very, very long day.  Mindy and I took Lucy Belle to her ORL/ENT appointment.  They were very busy, so we ended up waiting a very long time.  The doctor is just so wonderful and quick to listen to me.  He is also good at caring for Lucy and her "non-typical" needs:).

The good news is that Lucy's ears are clear!  Both tubes are in place, which we didn't think was the case.  No ear infections in our girl, thank the Lord Jesus (really and truly).  But . . . Lucy's throat is super red and her tonsils are really big.  She's also still screaming most of the time in pain.  It isn't screaming seizures, and I really don't believe it is a crying spell.  I believe she is hurting, so we have to do our best as a team (doctors included of course) to get to the bottom of it all and get Lucy feeling better.

Our ENT believes that we will likely need to get Lucy's tonsils out.  The problem is that he thinks this will be a very hard surgery on our girl.  He said to plan on staying at least a week (we don't have a date or anything yet, he was just preparing us).  It makes me sad to think of putting Lucy through something so hard, but I also HATE seeing her in pain!

After the ENT, we went straight down for a strep and flu test (boy, I am so very glad Mindy was with me to help!).  You may remember that Lucy has been positive for strep throat for almost a month now.  That has brought on the almost endless screaming, the need for narcotics, the extra doctor visits, the diarrhea, the antibiotics, etc.  In fact, she's been on four antibiotics plus the IV rocephin during our last hospital stay (we didn't swab for strep at that time, but we have all come to believe that she likely had it at that point).  NOTHING HAS WORKED. She tested positive again today for strep.  SIGH.  They even tested Lu Lu for MRSA because of the re-occurring, non-stop infections that aren't responding to ANY of the antibiotics.  As one of our docs said today, Lucy has had all the "big gun" antibiotics pulled on her, and nothing is touching the infection.

Because of the infection and pain, Lucy has had a huge increase in seizures.  We've seen seizures that are more severe, longer-lasting and seizures that are presenting differently than usual.  Because of this, we also visited neurology today, where our sweet neuro upped some of Lucy's seizure meds.  She also thought that Lucy may be having severe headaches or migraines since she's hitting her head and pulling her hair out in pain.  So, we are starting a med for that as well.

So, what do we do to stop all of this???  The Infectious Disease doctors are being consulted and will be added to our team for this situation.  I'm praying they can shed some light and offer some remedies.  They at least have to have some ideas for treatment, right??  We are waiting for those MRSA results, and we are waiting to hear from our team.  I am SO grateful to have all of our specialists at OU Children's where they can quickly and easily share information, confer and make plans.  It's a pretty amazing thing, and I'm anxious to hear what they come up with so that Our Girl can start feeling better.  And God-granted, the increased seizure meds and additional medications will help with the issues Lucy is having.

Here are some helpful ways to pray:

• Pray for Lucy's complete healing
• Pray for her ear and throat pain to stop (her throat pain causes her ears and head hurt)
• Pray that seizures will slow and that Lucy Belle will respond well to the med increases
• Pray for supernatural rest for each of our family members, including my parents and our nurses who are all doing more than their share to help us!
• Pray for God's provision for our family

On a VERY happy note, I'm posting a precious, precious video of Lucy Belle.  This was taken at our outpatient therapy yesterday with our Speech Pathologist, Lendy.  This is just a glimpse of how well Lucy is doing developmentally!  I wish I had taken the video longer.  This video is Lucy and her version of signing "more".  We are just thrilled and can't wait to see the other things that the Father will all Lucy to accomplish!  Praise God!  

Tired, Weary and Down and Out . . . 

Ryan

A Woman of Faith - My Friend Jenni

Many of you have heard me talk about my friend, Jenni Kufahl.  I've known Jenni since I was a freshman in high school, when we cheered together under the direction of her mom, Deani - our Cheer Coach.  I thought Jenni was so cool and so beautiful, and she still is! 

Life has gotten a bit busy for us both as she married a coach and has seven gorgeous children.  I've been busy too with our NKH Journey and all that has come along with it.  Jenni organized meals when Ellie Kate was first on hospice that first year, and it meant so much to me.  Then we reconnected when Lucy was born, and she came and visited us in the NICU, bringing notes of encouragement and love from the students in her husband's class at Christian Heritage Academy.  We stayed in touch on-and-off, and then Jenni was shockingly diagnosed with cancer about two years ago.  Cancer.  My friend who is a wife, a mother to seven children, was diagnosed with a rare form of cancer that seemed to come out of nowhere.  And her fight began. 

During her fight, Jenni has continued to encourage me.  You may remember me posting about how Jenni came up to the hospital that last day Ellie was inpatient, the day she came home from hospice.  Jenni brought me a Dr Pepper that morning (one of my favs), and prayed with me and over Ellie Kate that day.  She took a picture of EK and I together - one of the last ones I have.  She also visited us the day before Ellie Kate passed away, bringing a sweet gift along with her.  I was also with Jenni when Conner broke his arm, and because of her connections, we were able to take Conner straight to the Orthopedic doctor and straight into surgery.  This girl is a blessing, ya'll. 

Recently, Jenni spoke at the chapel service at Christian Heritage, and I wanted to share that video with you.  Watch it, listen to it; let the words sink in.  Let the Lord and His Spirit permeate your spirit through His Word that is spoken during this testimony of faith . . .

Jenni's Testimony

I'm asking you to pray for this friend, this Woman of Faith.  Jenni is in the hospital now, undergoing more chemo as her cancer has spread yet again.  She's fighting hard, and trusting the Lord and His Will for her life.  We know, without a doubt, that God WILL be glorified no matter how He chooses to heal Jenni.  He is FOR Jenni, and is FOR her family.  His heart is pouring out over her suffering, and yet He has allowed it for His glory and for her good.  That's what God does with tragedy and with trials in the lives of Believers.  He allows bad things to happen so that He alone can be glorified in ways we could never imagine - big, mighty, amazing ways!  Like Heath making a half-court shot at a Thunder game - and thus the Gospel was shared on ESPN, CNN, local news, and more! 


Trials are blessings because God is with us in an intimate way during them.  They are blessings because He uses them to mold us and make us more like Him.  They are blessings because it causes those around us to cling more to Jesus, and what could be more precious than that? 


Please Join Us in Praying . . .

• Pray for Healing for Jenni's body, here on earth
• Pray for ease of pain and that Jenni will feel comfortable and at peace
• Pray for Heath, Jenni's husband, as he leads his family and cares for Jenni
• Pray for Jenni's parents and her brothers and sister, as they care for Jenni and for each other during this time
• Pray for all seven of Jenni's precious children.  Pray that God would surround them with immense peace.  Pray that they will feel loved and secure during this trial.  Pray for God to meet them where they are.

Jenni and Heath - God has and is working through you in a mighty way!  We are so very proud of the way you have handled this adversity.  God is truly well-pleased with each of you and with your family.  You are blessed.  You are loved.  We are pleading to the Lord on your behalf!  May you feel His rich presence surrounding you.  May you hear Him sing His words over you.  May the Spirit of God fall on your shoulders, filling your home, your hospital room, your car - every place that you may be.  You have created a great and rich, godly heritage for your family and for the world to see.  Thank you for using your fight to bring glory to Jesus. 

Ryan

Some Very Sweet Things

Some very sweet things have been going on around here, and I wanted to share them with you.  Sure, we've been sick and have been struggling in several ways, but God always, always shows His love for us - His sweetness.

This Morning
 I walked by Ellie's room and caught myself before opening her door to wake her for school.  It took my breath away.  I had forgotten and was about to walk in and wake my Precious Girl.  At first I was very sad and frustrated, and I posted about it all on FB.  Then I read a response from my Aunt Carrie, and it changed my perspective on things.  I've chosen to be thankful for what happened this morning.

I'm thankful, that for a fleeting moment, I had a taste of what used to be.  That was a sweet thing.  I'm thankful at how much I love Ellie Kate - that I love her so much that when I am tired and weary, I sometimes forget that she isn't with us.  I'm grateful that she is safe and whole and her body doesn't have to endure all that she did on a daily basis here on earth.  Even on her best days - no more wheelchairs, no more tube-feedings, no more diaper-changes, no more inability to walk and talk!  I am grateful, and I am grateful for that moment this morning, as strange as it sounds.

Chair
Lucy has been needing a new sleeping chair (I may have mentioned this before on Carepages or on the Blog).  She now sleeps in a nap-nanny that allows her to be safe and sound in her baby bed while she receives her overnight continuous feeds.  She's safe in this chair because we watch her at night when the night nurse isn't here, however she is growing out of it and we've been looking for a permanent solution.

A while back, we found a Tumble Form chair that would keep Lucy safe while in her bed at night, and the best news is that it comes in various sizes.  But, medical equipment is very expensive.  Ridiculously so, and insurance only covers so much each year in durable equipment.  Today we came home to two giant boxes on our porch, and guess what was in them???  A TUMBLE FORM CHAIR!!  What in the world?!  There is no note or name on the invoice.  It was just delivered.  How sweet it was for God to do this today!  As we were feeling sick and down and tired, the Lord brings this to our door.  Such a sweet, sweet gift.



Doctor
I had a special and unexpectedly uplifting doctor appointment today.  I've had a lot of health issues since Ellie passed away, and I've been trying to deal with each thing one at a time.  So today I was able to see a specialist.  At the end of our appointment, he asked if he could pray for me.  Of course, I was elated!  That man prayed so sweetly, asking for God to heal my body and my heart, asking God for wisdom and direction and his oversaw this part of my care . . . it was so precious to me; a little gift from the Lord for sure.  I'm so grateful.  

We've had many other expressions of Love from others and from the Father this week as well.  I love to see people loving on one another.  I love to see the Kingdom of God at work.  I love to see His sweetness for me and for my family through the little things.

How is he showing you His sweetness this week?

Ryan