Thursday, July 30, 2015

Fixer Upper

One of our most favorite TV shows is "Fixer Upper".  It's a fun show on HGTV where a couple, Chip and Joanna Gaines, comes in and helps another couple find a "fixer upper" house.  The Gaines turn those houses into real homes - beautiful homes, GORGEOUS homes, that turn out to be more incredible than the new homeowners could have ever pictured in their minds!

Chip and Joanna Gaines

The greatest part for me is to see the homeowners as their fixed-up house is revealed.  When they left it in Chip and Joanna's hands, it wasn't very pretty.  In some episodes, the houses are literally falling apart.  You can imagine how nervous the homeowners must be as they place their faith in this couple, trusting them to transform the ugly house and make it something not only livable, but also something that represents their family's personality in a comfortable and secure way.  When the fixed home is unveiled, you can feel the excitement jumping through the screen!  Sometimes there are tears of joy and shock. Each time there are huge smiles (the ones that make your face hurt).  It makes me giddy to watch the excitement as the homeowners' dreams are unveiled and all that they've been hoping for and focusing on, is now there for them to touch and feel. 


The first time I watched Fixer Upper, I was super encouraged.  I don't know how to explain it, except for the fact that I felt the Holy Spirit in Chip and Joanna Gaines.  I told Mike about it, and that's when we started watching it together.  We have been hooked on Joanna's darling sense of style and on the hilarity that comes with the married couple's playful relationship that you see on camera. Although we don't watch every episode (we don't have DVR or anything like that), we enjoy it when we can! *Below are pics of the finished fixer uppers . . .






Check out more photos here:  Fixer Upper Photos

Last year, we stopped by the Gaines' store in Waco, Texas.  It's called "Magnolia" and it's absolutely darling.  I bought a few small things, and when I checked out, I started chatting with the girl that was helping me.  We were talking, and somehow I felt the freedom to ask if Chip and Joanna Gaines went to church anywhere (kind of strange I know, but I wanted to see if that Holy Spirit connection I felt was real).  That's when I found out they attend an incredible church that has a church plant here in Norman, Oklahoma.  Once the employee told me where they went to church, I just got so excited because I know people in this particular church and I know a little bit about it as well. I told the employee about the Holy Spirit connection I had felt, and I asked her to tell the Gaines that I am literally spiritually encouraged each time I watch Fixer-Upper.  The show is funny, clean and uplifting, but as a Believer, I also sense the couple's kindness, gentleness, sincerity, and giving spirit as they serve these families.  Sure, they are paid to do this, but when you are a Believer walking with the Lord, your profession becomes your mission, and you can clearly see that this is a mission for this family, and they pursue it as a family, wholeheartedly.  THAT is encouraging. You should watch it! 


My heart has been heavy lately, for many reasons.  Lucy's had an increase in seizures (that's part of NKH).  Henry's PANDAS has been flaring.  Many friends are deeply hurting and grieving.  I'm still longing for change in the physical AND spiritual.  As I was pondering all of these things tonight, God brought Fixer Upper to mind.  It may sound silly, but as Believers, you and I truly "Fixer Uppers".  We are all broken, some more than others, some being left and tossed aside as trash.  The transformation God brings to us physically, and most importantly, spiritually, is a beautiful thing to watch unfold.


Sometimes seeing progress takes a long time and sometimes changes are seen quickly. We place our lives and all that we have, in the hands of the Lord Jesus Christ and then He takes over.  He takes care of everything, every single, tiny detail.  He makes no mistakes.  He works ON us, and WITH us, and FOR us.   He is continually working; Jesus never stops working, even though it may feel that way.  Sometimes it feels like He isn't listening.  Sometimes it feels like He isn't moving in your life, especially in the ways you hoped or planned. Sometimes it feels like He isn't there - like He has left the job site . . . BUT, HE IS!  He never leaves or forsakes us.  He promises to complete the good work that He starts in us.  I can tell you from experience, Our God is FAITHFUL, ya'll!  One day, we will finally receive our "ultimate healing" and thus, no long be in need of fixing.  Come quickly, Lord Jesus! 


Hebrews 13:5 (ESV):
Keep your life free from love of money, and be content with what you have, for he has said, “I will never leave you nor forsake you.”

Philippians 1:6(ESV):

And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ.


As you've read in our posts, you may know that we've talked about moving, changing schools for the boys, and making other big decisions.  We just all want change. CHANGE.  I long for it.  But, we've prayed and prayed and PRAYED and sought the Lord, and we feel like God doesn't want a big change for us right now (such as moving).  Financially, it is much better if we stay where we are for a while longer.  It wouldn't be good to move right now, but rather stay and keep that security and stability going for Henry as he faces the many changes upcoming with school.  Being able to come HOME to this house, will be good for him, and if it's good for Henry, it will be good for ALL of us!  


Michael thinks I need to write to Chip and Joanna Gaines and ask them to come up and do a different kind of "Fixer Upper" here in Oklahoma.  He wants them to come and fix up the house that we have - this precious place where we first brought Lucy home from the hospital and the place where Ellie Kate took her last breath.  Ohmygoodness, can you even imagine?  What would we do if that happened?!? I would fall on my face and thank the Father for His goodness, and then you would find me doing the happy dance for hours on end!   I mean, really - having Chip and Joanna come in and help us with the things that need fixing (major and minor), helping us map things out better in our home, and then having Joanna decorate it with her impeccable taste that I adore??!!??!  It would be just too good to be true!  Even so, I am posting about it, just by chance you know Chip and Jo and want to pass this on to them:).  Who knows, maybe the Lord would work it out for us and we could have the change we so desire AND have the ability of staying in our current home.  Honestly, I would just like to hang out and pray with and over Chip and Joanna as a couple. It's strange, but that is on my heart.  No matter what, I choose to trust the Father and the decisions He's lead us to as a family at this time.  



Father, 

Thank you for encouraging our hearts in fun ways!  Holy Spirit, thank you for encouraging us even through television!  God, thank you too for Chip and Joanna Gaines.  Thank you for their relationship with you and thank you or the creative gifts you've given to them that we get to see and enjoy (even if it's through the TV). Thank you for using their lives for your glory, and  thank you for giving their family such an exciting mission.  


Lord, thank you too for giving OUR family such an exciting mission!  Thank you for showing us to stay here in our home, even though that isn't the answer I was wanting to hear.  I know that you see and feel our need for change, and I pray that you would make that happen in some creative way. Be our leader, Jesus.  Take over our family.  It's all yours and we give it all back to you.  Use us for your glory. 


Ryan

Thursday, July 23, 2015

Summer Nights

This summer has simply been a breath of fresh air - both figuratively and literally.  How grateful I am to have been able to get away with my precious family!  And oh, have we needed to get-away.  I mean really, we have needed to get out of town, ya'll.  Bless it.  God is GOOD.



We spent last weekend deep in the mountains of Arkansas, surrounded by God's raw creation.  It was absolutely gorgeous and we happily took in every little thing, including the humid, heavy air that filled our lungs each and every day we were there.  It was a "McLaughlin Get-Away", so we met up with Mike's side of the family for a few days of adventure and relaxation.  We laughed SO hard and ate incredibly well (especially for breakfast with Uncle Drew's famous french toast and Uncle Greg's impeccable, gluten-free pancakes); my kids didn't know what to do with all of that yummy breakfast food so readily accessible to them each morning!





There were hours and hours spent canoeing the Buffalo River as an entire family of nineteen - eight miles of that river, I might add, and we are all quite proud of that accomplishment.  We only overturned two canoes during the trip, one of which held me, Mike and Henry.  It was insatiably fun and exciting and the water there was cold, crisp and clear.  Henry collected many rocks for his collection, and both boys enjoyed fishing with their cousins, along with spending time in a paddle boat, and hiking the areas around our cabin.  Tiny frogs, tiny fish, and even a horny toad or two, were all caught by the kids . . . it was paradise!






"Rosie", the handicap-accessible van, did well as as she drove up the hills of Arkansas.  She may have spit and sputtered, but she made it and got us safely to our destinations.  I just cannot tell you what a blessing it is to have such a vehicle that can safely transport our family - most importantly, transport Lucy (in her wheelchair, mind you).  We are still praying for wisdom as Rosie is starting to wear out a bit, but we have no doubt that God will show us exactly what to do.

Family is important.  PEOPLE are important.  Sacrificing to be with people that you love is an important thing to do.  What can you do to love on your extended family in a more tangible way?  You don't have to go on vacation together to show and share love - you can do those things in so many other ways, and it's important to do so.  It's also important to teach our children to value their family, whether they live close or far away.  Go out and love your family recklessly today, and may the Lord show you fun and precious ways to express that love that you have!

I hope you enjoy some photos of our family, and extended family, from our time away together.  



















Thursday, July 16, 2015

Incredible News!

We have been working hard to get TEFRA for Henry - the supplemental insurance through the state of Oklahoma, that would immensley help our family financially.  The TEFRA program began here in Oklahoma when Ellie Kate was a little girl.  Up until then, we only had our private insurance to help us pay our medical bills.  I remember getting one of our very first hospital bills, when Ellie was only about six-weeks old.  That particular bill was $75,000, and that was AFTER our insurance had stepped in.  God is so good, ya'll.  He took care of that $75,000 bill!  He's taken care of many of our bills, and even though we continue to pay on those, He continually provides at just the right time.  


After the CVS test results, when we had the confirmation that Lucy indeed had NKH, I immediately started getting things together so we could apply for TEFRA as soon as she was born.  Technically, you cannot apply until you are one month of age, but since it's a very detailed process, I was able to start working ahead of time.  Lucy was accepted and has received TEFRA since she was around one month old.  That is an amazing thing!  We have had this help with her from almost the beginning and it has save her and us in so many ways.


Here's how it works:  Lucy gets a medical bill/sees a doctor/has a procedure/stays in the hospital/gets a prescription and our private insurance does their thing.  THEN, the state insurance steps in and takes care of much of the rest!  Now, not all is covered completely, as Lucy is on many meds that aren't FDA approved or aren't FDA approved for the purposes the NKH doctors are using them for.  There are also limitations on things such as equipment, certain treatments, therapies, etc.  HOWEVER, even if a little is covered, it is a saving grace for us as a family.  TEFRA has kept us from going bankrupt, to be quite honest.  Another amazing and interesting thing about this program is that it isn't financially based.  This insurance provided through the state, is given to the child because of the severity of their disability.


Today we received word that Henry has qualified for TEFRA!!  His current disabilities have made him eligible according to TEFRA and it's extensive process, and as crazy as it sounds, we are exceedingly grateful.  I knew it would be more difficult with Henry because his disabilities are much different than those of the girls.  However, I also knew the Lord wanted me to fight and work and pray and push and email and call and mail and call and email and call . . . . I knew He wanted me to be a momma-bear about this and humbly try to get Henry into this program.  I knew how many medical bills we already are trying to pay off for Henry (all have occured since Ellie's Heaven Day).  Without a doubt, I knew God wanted us to at least try to seek help this way because we know as his parents, that Henry does qualify for assistance.


We don't deserve TEFRA.  We don't deserve anything, really.  We are just regular human beings who sin and mess up just like anyone else.  Even though we've been given these journeys of illness and have been called to the special-needs life, as well as to the life of a bereaved parent, we are not super-heroes.  God hasn't called us to these things because He knew we could handle it.  He knew we couldn't and that we would need to rely on HIM for our every need (EVERY need).  I am grateful for this, Dear Friends.  A constant need to rely on the Lord.


I never thought that my family would receive help from the government, but we do and it's important to Mike and I that others know that.  We want people to know that there are "normal" families like ours who need the extra help from the state.  There are families who work extremely hard and go above and beyond to provide sufficient healthcare needs, but sometimes those needs are enormous and sometimes you just can't do it on your own.  Sometimes, even though you are doing everything you are supposed to be doing, even though you may have a really good job with a great salary, you may still have a hard time paying for all of the things that come along with the special-needs life, and that's okay.  We want everyone to be more open-hearted when it comes to those who need and receive help outside of themselves.  In the Bible, the early Christians clearly had this in mind as they shared all that they had.  As Believers, we are specifically called to help those who are sick and poor (in body and spirit).  This goes beyond the Church's doors because the needs are so great.  When you pay your taxes and give towards these government programs, you are truly giving to families like ours - you are giving like Jesus called you to.

I want other families to know that the struggle is real and it is okay to need help.  It's okay to get help from the state.  That's how God has provided for us, without a doubt!  He has provided for many of our friends and for their children that way as well.  Because of programs like TEFRA, Ellie Kate lived a full, happy and long seven years and Lucy is alive and thriving.  We could not provide even a portion of what they've needed without the help of the Father, the help of friends, family and strangers, and without the help of the government - both state and Federal.   Being in this situation has taught us humility on so many occasions, and it's a quality we feel the Lord is continually growing in our lives as a family.  It is a GOOD thing to continuously be taught humility; to continuously be taught that you are not in control and that you cannot do it all.


It's beautiful to watch Our Father at work, taking care of us and providing for all that we need and giving us many things that we want.  TEFRA is both of those things.  It is something that we need to help Henry receive the treatment, medication and therapies that come along with PANDAS and with epilepsy.  It is also something that we've wanted because we know how much it has helped us with Ellie Kate and with Lucy, and I can't imagine trying to live our lives paying for part of Lucy's needs (meds and equipment that aren't covered at all by insurance), paying down Ellie Kate's medical bills (we are almost there!), paying my IC medical bills, and now paying for Henry and all that has and is going into his care.

PS:  We were able to have Rosie (the handicap-accessible van) fixed!  That is a huge answer to prayer.  She is coming up on 100k miles, so we are praying about trading her in or really just want the Lord wants us to do in order to keep us all safe while driving.  Thank you for praying alongside of us!



Oh, Father!  I am so grateful and humbled by this blessing.  I know it's been given to us, not because of something we have or haven't done, but because you've promised to always care and provide for us, all while getting the glory.  We praise you for your faithfulness and we declare today that you ARE Jehovah Jireh, Our Provider!  

Ryan


Friday, July 10, 2015

A Beautiful Place



Last week we were able to sneak away to the beach!  Now, "sneak" really isn't the right word for our family, because it takes a lot to make it possible for us to do something like this.  My parents helped tremendously and our nurses served above and beyond, all so we could get away with Henry and Conner.

Every summer we try to take the boys somewhere to make them feel extra special.  We don't do anything fancy, but we do try to save and plan so that we can do something out-of-the-ordinary for Henry and Conner.  This is something we started about four years ago, when I was pregnant with Lucy.  I am incredibly grateful that we've been able to continue this tradition and I'm thankful for all of those who participate, helping us make it happen!  God is very good.




This summer, we visited Destin, Florida - my favorite beaches; the place where I was sent by my family not that long ago (I was in need of a break).  We stayed with my Aunt and Uncle, Cheryl and Todd Waddle, as well as my cousin, Brian.  It was SUCH great fun to spend time with them - meals, board games, walks, adventures - priceless time together!  The boys especially loved spending time with their dog, Dakota and feeding the turtles who live in the ponds close to the Waddles' house.  We also had a fabulous Fourth, spent with new friends, along with plenty of fireworks!





It was healing watching the boys smile and laugh so much!  It warmed my heart to see Mike being able to spend so much quality time with them, throwing them around in the ocean, carrying them in his arms, looking for fish and seashells (much of it was spent in the water). They played baseball on the beach and tackled each and every wave they encountered.







Leaving Lucy behind is really tough - I won't lie.  I do find comfort in the fact that Lucy doesn't seem to know a sense of time.  She loves her routine, which she was able to keep, so that means she was super happy the entire time we were gone!  Really and truly, our nurses kept Lucy happy and busy and were kind enough to send us pictures while we were away.  When we came home, I was hoping that Lucy would giggle and squeal, which didn't exactly happen.  She was happy, but not overly so.  To me it just shows that she didn't realize how long we were gone, which is a good thing, in all reality.  I love our Lucy Belle so very much and it was so good to kiss those sweet lips after being away from her for so long!


We are now settling back in, which has been hard on little Henry.  Any changes seem to be rough, although he did amazingly well on our trip!  We came home to find that our handicap-accessible van is broken.  One of THE most important parts isn't working - the ramp!  We aren't able to get Lucy in and out the way that we need to, which defeats the purpose.  Please pray with us that it is an easy fix.  This van is an absolute true gift from the Father, no doubt about it!  We've put in so many miles driving to and from the hospital, to and from therapy, etc.  It's crazy how many miles we've racked up just by driving around town, to and from appointments, to and from the hospital, etc, etc, etc!  We need the van.


God is so good to give us what we need, when we need it.  It may not feel like it comes at the right time; in fact, I often feel as though God has His timing a little off.  Things don't seem to happen when I want them to or how I want them to.  You know what, though?  That's the beautiful mystery of our Father.  His ways are not our ways.  He gives us good gifts.  He knows exactly when we need them and exactly when we don't.  We can trust Him with every detail.  Trust Him to take you to a beautiful place, in His time.


Resting In His Timing and His Goodness,

Ryan






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