Back in The Groove

Yesterday was the first day back to school for our children.  Conner is now a big SEVENTH grader, starting junior high!  Henry is back at our neighborhood elementary school with all of the familiar faces, places and sounds.  Lucy also is back at her same public school, which houses the most significant medical needs in our district.


Public school is a new thing for me, as from 3rd-12th grades, I attended private, Christian schools.  I have to tell you - I have been SO happy, impressed and reassured with our public school experience here in Moore, OK.  There's something very special about the teachers here, who genuinely love their students and love their community.  They want to see their students succeed while also enjoying the learning process.  Our community is very tight-knit, probably because of the many tragedies and storms (literally) we've faced together.  There is a solidarity there that is priceless.

The main thing I've loved about our public school experience is the level of communication we have with each of our schools.  If you know me, you know I'm big on communicating clearly, so I love that our teachers eagerly reach out to keep us posted on what's taking place in the classroom and on the playground.  All of these things are especially important for Mike and I as our kids have seen so much, and have been through so much, in their short lives.  Although we do still dream of sending the boys to private, Christian school, I can say that I fully trust the teachers now in our lives here in Moore.  God is so good to orchestrate this all for us!

Conner outside Brink Junior High

Ya'll,  I am just THRILLED, BEAMING, SO FREAKING HAPPY over how the first day went for all THREE of our kids!

• Conner:  Conner and I had a great time this week at his open house as we practiced going to his different classes, met all of his teachers, and walked around the entire school (every room) until he felt comfortable enough to be there on his own. After the event, Conner took me on a date for mexican food - a fav for us both. We made sweet memories I will treasure forever.  It was intimidating, dropping him off Friday morning, as the kids all look so big and the girls . . . well, they look like women!  Women in 7th and 8th grade, and here's our tall, skinny Lad, happy and nervous for this monumental occasion.  His first day was, "AWESOME"!  No tears, no tragedies - just happy reports of his teachers, friends, running to and from classes, and best of all . . . lunch! 

Back-to-School Night!

• Lucy: Lucy loves school, just like Conner!  My Mom and had a great time taking Lucy by her classroom this week and Lucy literally squeeled with joy when she saw her teachers!  One of the teacher aids was holding LuLu, and as we were leaving, I told Lucy to give Miss K a kiss.  She immediately leaned over and kissed her, clear as day!  It's that type of clarity and cognitive growth that we are seeing in Our Girl, you guys.  I just can't tell you how amazing it all is!  She's signing for a "drink", which she wants most of the time.  God is healing Lucy in many ways, and is allowing her to enjoy life! 

Lucy and Ms. Heather, ready for another great year!

• Henry: We were so worried about Henry's first day.  He had a hard time at Back-to-School night, even though we got there an hour before anyone else, in hopes of getting things done before the crowds arrived.  It was overwhelming.  He's felt the change all week, needing extra sensory input, such as climbing under our fitted sheet in bed because it feels "tight and safe".  

          Henry woke up with Conner yesterday, around 615am, which is WAY earlier than his normal.             He got dressed and ate breakfast and helped us take Conner to school.  He was starting to get   

          bored and tired by the time his school was about to open.  That had me concerned, but he 

          hopped up and ran to school with the rest of the kids in the neighborhood.  We did have one 

          incident at school, where Henry wanted to come home and get a bottle of water and see if I was           home, but other than that, his day was "GREAT!".  Ya'll, this is HUGE!  Henry has had NO 

          tears over school.  NO  fits or breakdowns.  Change is very hard on him, but he    

          PERSEVERED and pushed himself, and he made it through the day, passing with flying             colors!  Mike and I are elated and pray that this behavior will continue.  

Henry and Mommy, on our date after the open house

With this new school year will come change - change for our family.  I won't tell you specifics, but we are finally acting on some things we feel God has called us to for sometime now.  For a long while, I have felt like we were "stuck"; stuck between the Northside of the City and South, stuck between communities, stuck between groups of people . . . just stuck, and that hasn't felt good at all.

I have felt as though we've fallen through the cracks, and that isn't a good feeling to have. g reason for that though, is because we've been dragging our feet and haven't made the steps the Lord really wants us to.   I've been crippled by  fear of rejection - a fear I live with on a daily basis.  It is extremely hard for me not to find my worth in others and in what others say or think about me.  Thankfully, the Lord has been bringing me through that and in making some big changes, we think things will only get better in this area.  

 We Celebrated the Happy School Day with a Chuck-E-Cheese Treat

Lucy wasn't so sure about the "excitement" of C.E.C.

We want to simplify our lives while following Christ's lead.  What may be "simplifying" to us may not look that way to the world, or even to fellow Believers.  That's what we will be doing though - allowing the Lord to do the realigning, redesigning, relocating, redirecting.  CHANGE, for the better.  More security.  More simplicity.  The Lord will bless obedience, and for that I am truly excited - I can't wait to see what HE will do!  I can't wait to see what these changes will do and how they will mold our family, our friendships, our walks with the Lord. 

 It is definitely difficult to step out in faith like this, bc let's face it, most of our stepping out in faith has been with the health of our children.  This is different and requires actual physical movement and physical steps.  It's exciting because we know the Holy Spirit is moving in our lives and we can once again taste it, sense it and feel it!  

Thank you, Father for stepping in and for showing us where to go and what to do.  Please continue to reveal yourself to us, Lord.  Give us the boldness to step out and make new choices, that may be uncomfortable and painful.  YOU are so good.  

It Changes On A Dime

Over the weekend I received a beautiful gift in the mail.  It's a darling necklace with the reference James 1:17 on it.  Opening it took my breath away - that this sweet woman of God would take the time and energy to not only send me a darling gift, but to also encourage me spiritually with it . . . it just made me feel so loved!  I looked up the verse and again, I was humbled.  

James 1:12English Standard Version (ESV)

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.  

James 1:12

Does she see this in me? Oh, Friends - I feel incredibly inadequate and I do NOT feel "steadfast" 99.9% of the time.  My heart was lifted as I knew I would need this reminder, literally around my neck, in years to come.  I just didn't know I would need the reminder so quickly. 

Life has been smooth lately.  We've enjoyed seeing Lucy's abilities grow by leaps and bounds this summer.  We've had fun as a family and have pressed in to each other, feeling such sweetness from the Father.  Henry's had a great summer too, and although he struggles each day with behavioral issues, he has come so far and has conquered many things!  Other than a bad IC flare I've recently been thrown into, life has been peaceful and I've had to pinch myself in that because our life as a family has NEVER been this "peaceful".  Today, that all changed, as our world was rocked . . . 


We've had some issues finding a doctor to spear-head Henry's healthcare.  We had changed pediatricians right before his PANDAS diagnosis - one reason is that our favorite pediatrician of all time no longer works in the clinic at OU.  After working hard to find a "team leader" for his care, we decided on our psychologist, and that has been going okay.  I still haven't been convinced that was the best thing to do, but we've been weary from seeking out options and fighting for our son's health on other levels.  Today, we went back to Sooner Peds Clinic, and although we aren't with that favorite doctor, we are with his staff, whom we adore and have a long and faithful history with.  I trust them immensely with each and every one of our children, and they've watched all of them grow and change since around 2006!  


Henry didn't take his morning meds today, which completely threw him off.  I trusted him when he initially told me that he took them.  I made the mistake of not checking to see if he actually took did.  We've come to realize that the medications are SO important and when Henry doesn't take them, there is a BIG difference in behavior, and it isn't good at all.  So, no meds were on board when we made it to the clinic today and automatically, we were at a disadvantage.  


It's been a while since we've been to that particular clinic, so I had to catch everyone up on Henry's health history.  Can you imagine - giving ALL of the information, sharing ALL of the situations and details collectively from two years ago until now?!?  That alone can wear a momma out, ya'll.  Henry became unruly and was bouncing off the walls shortly into the appointment, touching everything and literally trying to climb the walls.  He was jumping off of every object, all because he hadn't taken his medication, and as Henry's mom, that is absolutely MY fault.  


Adding to the stress - Miss Lucy had the blowout of all blowouts, and I'm not talking about her blow-dried hair.   She pooped at the clinic, and it was on the floor, all over her dress, and completely covering the seat of her wheelchair.  She had poop on her hands and even on her face!  It was so bad that I needed help from two nurses, and we actually had to BATHE Lucy there in the clinical room, right there in that metal sink.  It was hilarious and she actually enjoyed her bath and the attention that came along with it, I might add. OH, LUCY BELLE!!


The final point at the doctor today:  there are many mysteries with Henry right now, and she is concerned - rightfully so!  We are concerned too, and I cannot tell you what a relief it is to FINALLY have someone step in and step up, wanting to be our "Team Leader" and gatekeeper where Henry is concerned.  We are taking a very proactive stance and will start rounds of testing tomorrow morning as I take Henry in for bloodwork.  There will be sleep studies and MRI's, and likely visits with other specialists there at OU.  We are also being referred to an out-of-state doctor who specializes in Infectious Diseases.  This highly-esteemed doctor is at the University of Missiouri's Women's and Children's Hospital in Columbia, MO.  Not only is this doctor an infectious disease specialist, but also, he is a PANDAS expert!  We are incredibly encouraged at the possibility of Henry being seen by such an incredible doctor who can hopefully offer us some assistance as well as information, as we WANT to know what's going on in Henry's body and mind.  It's maddening not to know what is going on in that beautiful mind of his, just as it is with Lucy and Ellie Kate.  


Henry took tylenol for a headache this morning and by the time we left the doctor, his head was hurting so bad that he was crying.  I have very little doubt that Henry had a migraine, as I have them, Conner has them, and my Mother has them (they are hereditary).  Shortly after he expressed his head pain, he started crying about his legs hurting, and then his arms and feet, then his hands.  Henry is a strong boy with a high pain-tolerance, so when he is wincing and crying out in pain, I take notice.  We got home and put motrin on board, which seemed to make a difference.  Although my mind was swimming with what we had just talked about at the clinic - seizures, infectious disease doctors, getting a script for Henry's pull-ups (he has trouble with this still), thinking about how to convince him to have blood drawn - I had to put that all aside and get the kids off to "Back-to-School Night"!  

Henry became very overwhelmed at the school and after meeting his teacher, he left the building on his own, and I had no idea where he went or how he escaped.  I was called to the office when the poor principal told me that teachers had seen him exit out of a certain door.  I can only imagine what is going on in that poor woman's head, as she was the same principal who had to chase/follow/track down Henry to our home when he ran away from school several times last year.  I quickly found Henry who was hysterically scared and a little disoriented.  He said he "couldn't see well", which is what he said before he fell with his last seizure.  I had him sit down, but he threw himself around on the ground, crying out in pain.  His eyes looked funny, so I picked him up, found Conner and got to the car.  I thought that if I got Henry home, I could better asses him and get him to rest a bit.  I did get him home and tried to cool him off, while he was still crying and now complaining about a tooth.  He had mentioned the tooth several times over the weekend, but it has a cap on it, so I didn't think much of it.  


Tonight, Henry has thrown up and he is extremely pale.  He doesn't have a fever, but that is typical for him when he falls ill.  Before falling asleep, he was still limping around in pain, crying out the entire time and also complaining about his tooth.  I have made an appointment for the dentist, but they can't see him until tomorrow afternoon.  I'm thinking that Henry may have an abcessed tooth under that cap!  That would explain the symptoms and the behavior, which breaks my heart (infection can send one into a flare).  I have NO IDEA how I will get him to the dentist.  I have NO IDEA how I will get him to sit in the chair.  I have NO IDEA how I will get him to let Dr. B look (and touch, and x-ray) his hurting tooth.  And now that he is vomiting, will checking his tooth cause him to throw-up?  He's already on TWO antibiotics because of his PANDAS treatment, so you would think that any infection would be taken care of, unless indeed he does have a major immune disorder going on that we don't yet know about.  DEEP SIGH.


I just don't know, ya'll.  I just don't know.  I don't know what to think and I don't know how to take on another major unknown issue.  Although PANDAS, and all that's lead up to it, has indeed been an unknown road for us, at least we had some answers and treatments.  Now, I don't know what the future holds, and in many ways, we are exactly where we've been with Ellie Kate, in particular . . . just not knowing, but watching our child hurt and suffer.  


One of the hardest things tonight was that Henry was truly scared about school.  He was once again begging me to home school him.  As you may know, Henry had an extremely hard time at school last year and basically was home with me from February until the end of school.  I tried to home school, but with Henry's intense defiance (which we have believed is caused by PANDAS) prevented us from getting anywhere and we weren't able to do any type of work at all.  Henry's repeating first grade because of this very thing (not because of his intelligence), but what if he runs away from school again, even this week?  What if he refuses to go and also refuses to let me teach him?  He truly has changed so much and has learned to better control himself and even make better decisions, but I don't know if he has the self-control to really and truly focus on school.  What do I do with that as a parent?  It's hard to wrap my head around.  


Please don't get me wrong - I'm not running around like a chicken with my head cut-off, screaming and letting my thoughts run wild with the "what if's".  I know better than to do that.  I've learned the hard way, and doing that isn't good for anybody.  I also know, without a doubt, that God WILL cause this all to work for Henry's good, for MY good and for the good of each member of our family.  I know that Christ will be glorified in it.  HOWEVER, that doesn't mean that my heart doesn't hurt or that it isn't heavy; it doesn't mean that my eyes aren't stinging from the tears I've shed today, or that I haven't cried out to the Lord to just take it all away.  Maybe He will and maybe He won't.  I'm having to CHOOSE to trust Him, as He has proven Himself worthy and good.  


Please pray for wisdom for the doctors and for me and Mike, as we try to navigate Henry's health care and medical future.  Also, pray that we are able to get the tests done quickly and that we will quickly receive the results.  We also need the Lord to provide for any trips we will be taking for Henry's medical treatments, and that He would provide for those same treatments and any medications that may come along with them. 

Friends, we desperately need wisdom about Henry's schooling.  Pray that God would give us black-and-white, crystal-clear answers that can only come from Him.  Pray that they would be evident and that He would move in our hearts immediately concerning this.  School starts Wednesday and it makes me queasy to think of all that we have up in the air!  Oh, Father!  We NEED YOU! 

Thank you for standing by us in the good and thank you for standing by us now, in the difficult and hazy times of this journey.  May the Lord richly bless you for staying with us so faithfully because that action spurs us on, encourages us, and breathes life into our hearts more times than I could ever say.  We love all of you dearly and look forward to watch God's story unfold in all of this.  

Lord, I don't know how to do this, but I know that YOU know what's going on with Henry.  I know that you are FOR Henry and that you are FOR me.  You fight for us, you forgive us, you give us good things.  You are a GOOD FATHER.  Show yourself as a good father to us, God.  Thank you that Conner and Lucy are doing so well right now, and let that continue.  Secure them in you and capture their hearts, guiding their every movement.  Capture Henry's heart and tame it, Father.  Capture his thoughts - the thoughts that aren't of you.  HEAL HENRY, God!  Release this burden of sickness that hangs over my son - this heavy bag that he has to carry with him, everywhere he goes.  Give Henry relief.  Go before us in appointments and my your presence be thick.  May your angels line those rooms and may Henry feel the peace and comfort that comes from their presence, all because of YOU.  And Jesus, I selfishly ask you to lift my spirits.  Thank you so much for giving me that gorgeous necklace and thank you too for it's perfect timing.  Holy Spirit, you work in the hearts of your Believers to accomplish your will!  Thank you for remembering me and thank you for showing me your goodness.  Bless my sweet friend richly for listening to your Holy Spirit and for acting when you told her to!  Would you continue to lift my spirits?  You know the current desire of my heart and all that goes along with it.  Would you somehow make a way?  

We lay it all at your feet.  

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