What is Love?

Do you remember that song, "What is Love?"?  I think it went something like this, "What is love?  Baby don't hurt me, don't hurt me, no more."  

I know, I know.  By now you are busting out laughing or rolling your eyes; OR maybe you've just decided to delete this blog post.  Please, Friend - do stay with me, because I promise there is more to this blog than just reliving some silly 90's song.  

In my life, I have so gratefully been able to experience many types of love.  I have been blessed to see, first-hand, the most beautiful types of this intricate emotion - this verb and noun.  Up close, I have witnessed what love should be, what love is meant to be, and what love could be.  And unfortunately, I have seen love abused and manipulated; evil and selfishness masked as "love".  

Many times I have wondered why God has allowed us to be in the situations we are in as a family.  For me as a woman - what are all of the purposes of these trials and sufferings (I promise,  I know I am not the only one suffering or hurting)?  One of those purposes, I believe is to share Truth.  And today, I would like to share with you what God has laid upon my heart about love.  

You may or may not be a Believer.  You may or may not believe in the power of the unconditional love of Jesus Christ.  Friend, no matter what you believe, you really cannot discard the breathtakingly beautiful true definition of love in the Bible . . . 

Love is patient and kind; love does not envy or boast; it is not arrogant 5 or rude. It does not insist on its own way; it is not irritable or resentful;[b] 6 it does not rejoice at wrongdoing, but rejoices with the truth. 7 Love bears all things, believes all things, hopes all things, endures all things.

 I Corinthians 13:4-7

For me, love is sacrifice.  Plain and simple.  True sacrifice.  If it doesn't cost you something then it is NOT LOVE.  And sacrifice means SERVICE. That's it for me, Friends.  Bottom line - LOVE IS SACRIFICE and SERVICE. What is love for you? What does it look like? As Easter approaches, the picture of ultimate sacrifice and service by Jesus on the cross, I encourage you to ask yourself some questions:

• What is your love/service costing you?
• Is it comfortable?
• Is it hard to do physically, mentally, emotionally, or spiritually? 
• Do you "love" and serve in order to get accolades?  
• Are you seeking attention by engaging in this act? 

"If I speak in the tongues of men and of angels, but have not love, I am a noisy gong or a clanging cymbal. 2 And if I have prophetic powers, and understand all mysteries and all knowledge, and if I have all faith, so as to remove mountains, but have not love, I am nothing. 3 If I give away all I have, and if I deliver up my body to be burned,[a] but have not love, I gain nothing". 

I Corinthians 13:1-3

As Believers, our lives should be reflections of Jesus; the true and ultimate guide, the most beautifully perfect picture Love.  We must strive to live a life of love.  And as humans, we need love to well.  We need to serve well.  We cannot get through life without human love because human love is the extension of Christ's love; the Kingdom of God on this earth.  

Love is NOT shouting out your good actions for the world to see so that you will get the recognition you are craving.  If that is what you are looking for, stop and seek your attention somewhere else.  

Love is NOT doing something out of convenience.  If it doesn't cost you something and if it isn't uncomfortable, then it isn't LOVE.  Jesus loved us in every action - he was constantly giving, serving, sacrificing His reputation and His life.  If you are doing something ONLY because it is convenient, then it isn't really LOVE.  Do more!  

Love is falling on your face and being humble.  It's living out the example of Christ - giving everything up for the sake of others.  

Being in ministry, I have seen mothers change the diapers of their teenagers.  LOVE. I have seen fathers wipe drool from their adult children.  LOVE.  I have seen adult men hold the arms of their elderly mothers as they walk down the stairs.  LOVE.  I have seen a mother hold their child so tight because of the child's need for sensory input.  LOVE.  I have seen precious mommas kiss the lips of their dead children, one last time.  LOVE.  I have seen strangers cleaning up after the sick, helping people who are lost; I've seen people give up their last dime so that others can eat.  Missionaries who give their lives to share the Gospel and their families who stay behind, faithfully keeping things going on the frontlines.  People making life and death decisions, people feeding the poor, those wrapping gifts for others at Christmas . . . the list could go on and on (isn't that breathtaking in and of itself?  Endless ways to love!).  Truly though, love can be so simple.  Reckless love does not have to be life or death.

Sacrifice can be simple - leaving a note for someone who has been having a hard time.  Picking up extra groceries for a family who is struggling.  Maybe you could secretly mow your friend's lawn or shoot an encouraging text.  For someone who has felt much pain and heartache, I can tell you that any act of love means more than you could ever know.  NOTHING IS TOO SMALL.  If you feel led to do something, even in the slightest, go and do it!  Do NOT miss the opportunity to bless others because you will end up being blessed as well.  

My hope is that you will re-evaluate the way you love your family, your spouse, your community, your world, your God.  My hope is that your soul will be awakened to the true meaning of love - God's meaning of love.  Sacrifice.  Service.  My prayer is that your love will change and that it will impact everyone around you, and when it does, it will change your heart and will change the way you view Jesus.  When you understand what true love is, what Jesus has done for you, what Jesus DOES for you on a continual basis, you will fall more in love with Him.  Over and over and over again, you will fall in love with Him as the unveiling of the magnitude of God's sacrifice is unfolded before you.  And do you know how that happens?  It starts with you loving others.  Loving others recklessly, in service and with sacrifice.    

What is love to you?  Go out and love your world today and be blessed by the precious ways God in turn shows His love to you, Sweet One! 

Tornado

Tornado - Did that title grab your attention this evening?  We had our first tornado of the spring season tonight, once again right down the street from our home.  While THIS tornado's strength is nothing compared to that of the May 20th 2011 storm, it still has us riled up tonight.  This tornado came out of nowhere.  We weren't even under a tornado warning, ya'll.  The bad weather was supposed to be on the other side of town, and then BOOM.  It was on us.  

Truly, the Lord was so good to spare us this evening, and I mean that with all sincerity.  Since the weather was set to get worse as the night went on, we got into our cars (our nurse included), and planned to head down to Purcell to avoid the hail and to eat dinner with Mike's parents.  The bad weather was West of us - we still had time.  So, we jumped in our cars, but before we left our neighborhood, I turned on the radio and heard that there was a tornado on the ground on 4th street in Moore - the VERY STREET we were about to get on; the main street outside our neighborhood; the one hit so badly in May 2011!  I turned around fiercely and we quickly got home.  The nurse, me and the kids piled out of the cars and ran inside, getting hit by hail.  I was so glad Lucy had her litle helmet on!  

Just as we were getting out of the car, the tornado sirens finally started to go off.  We tried calling Mike but cell coverage had already gone out (it does that in tornadoes).  I was so scared that he had kept going down 4th all the way to I35, and that's where the tornado ended up doing the worst damage.  I had peace, but at the same time, so much fear, panic and heartache of May 2011 came flooding back.  I think it affects our entire Community that way.  

We all hung out in the storm shelter which God so graciously provided last year.  Henry's tics were almost non-stop, but Conner was super calm and so was Lucy. Finally, we were able to get out of the shelter as the storm started to settle.  Just then, Mike walked in the door.  He had been at Sonic, under their carport, wondering where we were.  What in the world?!  Seriously.  We were NOT ready for tornadoes yet.  No sir, NOT READY at all.  I guess it's time to get my booty in gear and get those storm bags packed again.  I just didn't think we would have to do it so early in the year.  


Moving on to something beautifully intimate . . . 

This week, as I was going through some of Ellie Kate's spring clothes for Lucy, I found some of her shoes.  As I looked closely at them, I found one single hair on the velcro of that sweet little shoe.  One single hair of my Most Beautiful Daughter who is now with Jesus.  

I touched that hair.  I wanted to cuddle it, snuggle in bed with it.  I wanted to hold it and weep, but I couldn't do those things because I was too afraid to lose it.  I didn't remember to get a lock of Ellie's hair before she was buried, so all I have are these little keepsakes that pop up now and then.  I put that little hair on a piece of tape (medical tape, no less as it is naturally the only kind of tape I could find in my house at the time), and ultimately placed it on my mirror, writing a little note to remember:  

But now, I have Ellie's little hair on a frame in my bathroom - a frame which holds a most endearing picture of her hand and mine, two days before she left this earth.  It is priceless to me, and now I get to see her tender little hair when I look at this portrait which represents our bond in many ways.  I adore it.  I don't care if that sounds wrong, or if it IS wrong.  I adore it and I adore my Daughter.  And I miss her.  Oh, God!  I miss my Ellie Kate!  Some days it feels as though my heart is ripped out of my chest over and over again, with intense radical pain that cuts you to the core.  And then I look at Lucy and wonder, "How, Lord?  How in heaven's name will I do this again?  WHY do I have to do this?  Take this cup from me!"  .  

It's oh-so hard to see on the blog, but I promise it is there!  

Those irreplaceable Hands

As I was reflecting on that precious hair and on my most Darling Girl, the Father brought these verses to my  mind; and oh, how healing is the Balm of His Word to our open wounds! 

"But even the hairs of your head are all numbered. 31 Fear not, therefore; you are of more value than many sparrows." Matthew 10:30

“What’s the price of two or three pet canaries? Some loose change, right? But God never overlooks a single one. And he pays even greater attention to you, down to the last detail—even numbering the hairs on your head! So don’t be intimidated by all this bully talk. You’re worth more than a million canaries." Luke 12:6-7

MY FATHER knows every hair on my head, every hair on Ellie's head.  He knows the number of this one that is now taped to my photo!  He knows the most intimate things.  He KNOWS, and I can rest in that.  I MUST rest in that.  I CHOOSE to rest in that.  I will LEARN to rest in that.  He knows me better than I know myself, and He knows what I need and when I need it.  

Just like this evening, when we thought we were doing the best thing for our family by getting out of the way of the storm - and yet he literally stopped us and had us turn around for safety.  What we thought was the best plan would probably have caused us great heartache and destruction as a family. God KNEW and He had us avoid that.  He re-routed us.  

If He re-routed us for that storm, what else does He re-route us from?  He is GOOD, even when we do not see it.  He is SOVEREIGN, even when we don't see it.  He is IN CONTROL, even when we don't see it.  With storms, with genetic diseases, with behavioral disorders, with medical bills, with depression, with heartache, He is there and He knows every single detail.  

May we rest in knowing that He knows us well

Thank you, Father for protecting us tonight.  The gift of Ellie Kate's single hair is more precious to me than I could ever express.  Thank you so much for letting me find this hidden treasure, Lord!  Thank you for your sweetness, even when I am hurting.  You know it all, Father.  You know each and every hair on my head - you know which one is which!  That alone should draw me to you; that alone should cause me to run to you. To see that you know me so intimately; to see that you love me so deeply, more than any treasures . . .  help me to grasp that, Lord.  Remind me of this great love that you have.  Remind me in those dark places of emptiness, those dark places of literally feeling torn-apart.  Thank you for knowing your children in such an intimate and spectacular way. 
 - Ryan

The Face of PANDAS

WEARY, and yet I flinch at the thought of boring you with more painful details of our harried life. Even asking for prayer feels intrusive today, for some reason.  To be truthful, my heart often is burdened with the thought that we ask too much of our friends, family, blog-followers, and prayer warriors. Even though I do not like it one bit, we are STILL in a season of survival and illness, and that means we often have to receive.  What we REALLY want to do is GIVE.  Give, and give, and give, and give.  That's what our hearts long to do, and while the Lord does give us many chances to give, we yearn for the day when our family no longer has to be on the receiving end so often . . . 

See the precious little boy in these pictures?  

He is a picture of PANDAS.  The face of it, if you will, and this . . . THIS is what a raw picture of PANDAS looks like:

Imagine your clothes actually hurting your body or bothering you so much that you have a panic attack because of how they feel on your skin?  Sensory issues cause Henry to choose things like this - a silky pirate shirt and a pair of his sister's pants.  He doesn't care what anyone thinks.  This is the only thing that feels good to him during this flare, so this is what he wore all day - even to our appointments.

PANDAS looks like the deep scratches I have on my arm from a little boy who's brain is on such high-alert;  under so much stress, that he lashes out uncontrollably (and most of the time his anger is directed right at me because I am the one who is with him the most). He doesn't know how strong he is.  The experts say that he sincerely does not know what he is doing.

This ugly disease looks like the raw fear that was in Henry's eyes today as the nurses held him down in order to get blood drawn (it had to be done for DNA testing conducted for his benefit).  That fear was so disturbing to me as his momma.  It broke my heart to know that Henry felt out-of-control, and that he didn't know what was going on because he couldn't stop screaming long enough to listen.  His eyes were full of PANIC.

PANDAS looks like OCD which gets worse during a flare, and in Henry's case, causes him to pick at his scabs and "bumps" until they bleed.  It looks like a little boy jumping over the lines and dark tiles on the hospital floor, because he is terrified of stepping on those lines and dark tiles.  Henry's focus has been on minecraft, a building game that he plays on my phone.  He can't stop thinking about minecraft.  He can't stop asking Conner to play it with him.  He can't stop asking me if he can use my phone.  He goes to sleep talking about it and wakes up (sometimes in the middle of the night), and immediately comes and gets my phone to play the game.  PANDAS causes obsessions that cannot be controlled.  

Hitting, kicking, biting - a "fight or flight" response to every new situation . . . that is what PANDAS is for Henry.  He feels threatened by new people, new places, loud noises, and other sights and sounds.  And the fight-or-flight response intensifies dramatically during a PANDAS flare.  We don't know what will set off this response, and as a mother, it's terrifying not to know what is causing your child so much distress.  It's like an incredibly hard seizure, but I don't know what caused it and I don't know when it will happen again; I have no idea how to put an end to it.

Wet pants and puddles on the ground during the day; sheets soaked with urine during the night.  Henry's brain isn't able to give his body the right signals, and when the signals do come, they are often too late.  It happens at school, at the mall, at church, at a friends house - anywhere.  I've started packing an extra pair of clothes for him in a little bag of his choosing.  A diaper bag, so to speak. It doesn't bother him now, but how will he feel about it in the future?  

PANDAS looks like a six-year-old, hulk-of-a-boy who isn't afraid of anything.  FEARLESS.  Senselessly fearless to where he will talk to anyone, play out in the street, attempt to jump off the roof of a car or the top of the swing set.  He does not understand consequences.  A child who is senselessly fearless and who doesn't care what the outcome is, even if he gets hurt (truly, he does NOT care) . . . how do we love and protect him through this?

PANDAS.  I hate it. I hate is just as much as I hate NKH, the disease which took Ellie Kate's life.  I hate it because it's taking Henry's life - his freedom, his personality, his friendships, his schooling, every relationship he has (even with our pets).  The girls were born "sick", but how can a perfectly healthy little boy change so much so quickly?  How, Lord?!  WHY, Father?! Spare Henry! Spare Lucy!  Spare Conner from the chaos of it all! 

So, this is where I will leave you tonight, without asking for prayer or for anything, because I'm tired of asking and I'm tired of putting our burdens on others.  It's been nine years since I've been posting and blogging, and that's a LONG TIME! Tonight, I'm only sharing and you only do what the Lord lays on your heart to do. You know, that's really how we should approach everything in life anyway, right?  

So, let it be.  

I Don't Wanna Sign Up

Our Henry-Mac is in another PANDAS flare and this time, his behavior has drained me more than I ever thought possible.  I'm forgetting things like appointments and appointment times (granted, we have WAY more appointments than the average family and I need to give myself some grace); I'm so tired all of the time, although I think that has to do with my own autoimmune issues.  NKH, Interstitial Cystitis , and a bad PANDAS flare?  I do NOT want to sign up for this, ya'll.  

Although we've had some really special and sweet things happen, it's hard for them not to be overshadowed by the heavy cloud hanging over us.  I CHOOSE to enjoy the good things while they are here; to be happy when we can, to the fullest extent, because I know how heavy PANDAS is and I know how taxing it is on us.  

For a long time, I've been really patient with Henry.  God has given me a heart for him - the baby God clearly told us to have!  He knew what He was doing by placing mercy within me as a spiritual gift, because I need to exercise that SO OFTEN with Henry Mac.  During flares, it's almost constant defiance that he cannot control.  I know many say, "Just make him obey" or "Make him do it; you are the parent".  But it is so much more than "just" making him do things.  This is a disorder that messes with his mind.  I never know when He will turn around and hit me or run outside with the dog (which happens quite often, even though we try out best to keep this from happening!).  It's walking on eggshells 24-hours a day, and I am more weary than ever.  

I've said that behavior disorders are harder to me than most things we have dealt with concerning the Girls, and I still do believe that. It's come to a point that I physically feel, almost exactly like I've been staying in the hospital with one of the girls for months on end.  That's how tired I am.  That's how worn I am.  That's how taxing this is on all of our family.  It is a constant battle in every way.

It's like I have so many plates spinning and none of them can stop.  I keep dropping them, and they chip and crack, but they still spin.  Life goes on.  Lucy's busy life cannot stop because of PANDAS.  Conner's life cannot stop because of it NKH or PANDAS.  We are just learning to deal with it; I'm learning to keep things spinning, but I'm afraid I haven't been doing a good job.  I apologize if I haven't been able to get back to your texts, phone calls or FB messages.  I'm doing well just to keep my house clean and to know where my kids are at all times.  Thank you for giving me grace as I try to prioritize and keep my family above everyone else.

Really, I just want Henry to be healthy, safe and happy.  That's what we all want for our children, right?  I know Ellie Kate is all of those things and more, as she is with Jesus.  And I know that Lucy is stable and very happy at this point, even though she still is having tummy troubles.  Conner is happy too, and changing into a wonderful, thoughtful young man.  But for Henry - I don't know what else to do to help him, and that's why we are continuing to seek help from many different angles, including from doctors and clinics from out of state.  

Please pray that our patience for Henry will be multiplied.  Pray too that we will have absolute clear direction and insight on how to help our Precious Little Boy.  Mike and I long for peace in our home.  It was there - it had come into our house after Ellie's death - and now it feels like it's been stolen.  Lord, restore peace to us once again!  

 Conner and Henry at the Thunder Game

Lucy and Henry at our friend Emmy's Birthday Wish - 

the Cinderella Movie

Our Gang

Do you remember "Our Gang"?  You know, The Little Rascals?  When I think of this group of friends, I think of us as that group; a group of varied personalities, all of which are strong and opinionated.  Somehow though, we come together as this dynamic, fun, hilarious group of silly people, all of whom have been through some of THE most difficult things anyone can ever face. 

Last Saturday, we spent the entire day with the Johnson and Haas families.  I've posted many times about Makenna Johnson, the daughter of Matt and Marianne, who went to be with Jesus about six months ago.  She was Ellie Kate's friend and they had many similarities, such as "hopping" around.  Lilly Haas is the daughter of Scott and Amy Haas.  We met Scott and Amy when Lilly was teeny tiny and when Ellie Kate was also very young.  Hope Link was birthed out of our love for both Lilly and Ellie Kate.  It exists because they exist.  We met the Johnsons through Amy and Scott Haas, actually at little Lilly's funeral.  These people and their children . . . they are Our Gang.

Can you see the resemblance? 

The Johnsons drove up from Dallas and we all met in Guthrie at the Haas Homestead.  They live in the country, out in Guthrie, Oklahoma.  They have chickens and a lake in their backyard!  There are so many adventures to be had literally right there, so it was heaven on earth for our kids.  And since our own family has been longing for some serenity, peace and nature, it was really just the perfect venue for all of us to meet up and just "be".

I cannot tell you the peace you feel when you are surrounded by people who have been through so many similar life circumstances - long hospital stays and separation from loved ones, delayed diagnoses, endless meals in hospital cafeterias, seizures, feeding tubes, etc.  Not only that but we've also walked these dark days with each other, alongside one another as we've battled through surgeries, home health,, hospice, and eventually the deaths of our daughters.  The Lord timed it so that we weren't going through exact same things at the exact same times; He is so good that way.  We had the privilege of being there for one another.  We still ARE there for one another, walking this thing out because let's face it, there is no manual to grief or to life.  God has given us a priceless gift in one another.

Our children loved hanging out together, and whether they know it or not, they need each other.  They need to know other kids whose sisters are in Heaven too.  They need to know that this happens to other families, and that we can all get through it and be there for each other.  I have a feeling that God will use their friendships more and more in the future, and as a parent that is just a precious and reassuring thing.  

There were so many tender moments - Matt spent a lot of time with Lucy, loving on her and playing with her.  He even helped Mike change several very bad diapers (THAT is friendship).  I would think that Matt was very much reminded of his daughter, Makenna who behaved much like Lucy does.  Precious and painful all at the same time.  

Mike also loved spending time with the typical little girls, because we just don't get to do that - you know, converse with a little girl, engage them on different levels.  Mike has such a sweet heart for His own Girls, and he absolutely loved playing with Marlee and Emory, especially.  They remind him of what our girl might have been if not for NKH.  

And OHMYGOODNESS!  Lucy had one of THE best days of her little life.  Really and truly, she just drank it all in!  Lucy loved being outside, but most of all she loved being with her friends.  You can tell that she knows that these people are HER friends, ya'll.  My Daughter has friends! She babbled and talked to each one with joy and laughter.  It was so precious to my heart to see Lucy enjoy life to such an extent.  

We went on walks, we went fishing, we chased chickens, and played on tire swings.  We experienced amazing cuisine from Chef Scott Haas, listened to the birds outside and even had a little 90's music dance party.  It was the perfect day for our family, that's for sure.  We shared memories and heartaches and laughed until our bellies ached.  It's a day we will never forget, and the timing could not have been more perfect.  

Lord, thank you for faithful friends to walk with through the darkest of times.  You make friendships appear in the least likely of circumstances; you allow and even cause them to grow.  You are so very faithful, Father.  We do not walk alone.  You are with us and you never leave our side; not even once.  How precious are the relationships you give to show us your hands and your feet, Father God.