Seven

This week has been an emotional one, and next week . . . well, next week marks some big events, and I'm asking the Lord to keep us close. 

On Tuesday, we celebrated the precious earthly life of a sweet boy whose momma is in Hope Link.  Since Hope Link started, I have been to about nine or ten little funerals (not all of them were Hope Link families).  Each time a death happens, some of my own grief is brought up.  This time, my heart has just hurt for Bennett's mommy as I know the heart-sickness that comes with this journey and the physical toll it takes.  My heart has been heavy for my friend, and I have found the name, "Ellie Kate" rolling off my tongue many times.

I've been tossing and turning each night, not getting good sleep.  My interstitial cystitis has been flaring and hurting more than ever before.  Bad dreams and anxiety have muddled my days - and then the Lord brought it all together for me.  On Monday, Henry will turn SEVEN years old!  This is a wonderful milestone, and I am so grateful for his little life.  It's just that the last birthday I celebrated with Ellie Kate was her seventh birthday.  I remember every detail of that day and the little birthday party we almost didn't have that night (oh, I am so grateful that we did!).

The Face of a Seven Year Old

SEVEN.  My feelings are so mixed that I cannot put them into words.  Fears and memories mixed with nausea, all while planning a "Jurassic World" party for "Hammerin' Hank".  JOY and Pain.  The other thought comes to mind that Lu Lu Belle will be FOUR in September, and Henry was four when Ellie went to Heaven.  That means it will soon be three years since I held my daughter.  That also means that Lucy has lived four full years, and by the way, has shot up to a 5T in her clothes!  Extreme gratefulness with a little sorrow thrown in.

Tonight I thought about sharing comparison pictures of my two seven-year-olds.  I wanted to see the resemblances and I wanted you to see them as well!  But Friends, I just cannot bear to look through my pictures just yet.  It's not that I am depressed or beside-myself; it's just that I know my heart just couldn't take that right now.  And though I've poured over hundreds of Ellie's pictures, I can't do it tonight.  I know all of this is sad, so let's move on to something more precious . . .

Last night, while I was NOT sleeping, God kept telling me to go read Isaiah 65.  It's where I've left off from studying, but even though he kept prompting me, I didn't read it.  Bummer, because I read it late this morning and was fantastically blessed (when God wakes you up or prompts you to do something, just go ahead and do it).  This is what He gave me in His Word . . .

Isaiah 65:23-24: "They will not work in vain, and their children will not be doomed to misfortune.  For they are people blessed by the Lord, and their children, too, will be blessed.  I will answer them before they even call to me.  While they are still talking about their needs, I will go ahead and answers their prayers!"  

In a strange way, this is what my heart needed to hear.  Now, it doesn't make it all better and the words aren't like waving a magic wand.  However, God's Word is a healing balm and He is promising me that MY CHILDREN will NOT be "doomed", which is big, because sometimes it feels that way (with NKH and with PANDAS).  In fact, God has BLESSED them and their children too - my grandbabies!  And God is going to  listen to my children even before they petition Him, while they are still thinking about what they may need.  He will hear them and answers their prayers.  Tying it together with a giant bow, is that God promised Henry to us through the book of Isaiah.  Thus, Henry Isaiah McLaughlin.

Through God's Word, I feel more at peace tonight.  Even though our life is a wild, busy, crazy, sometimes sad, sometimes difficult journey . . . God is causing it for our good; especially for the good of my children, and for HIS glory.  No matter what confusing feelings I may have tonight.  I'm choosing Jesus because He is better.  I'm asking Him to capture my thoughts and place them on whatever is good and right and pure.  I'm thanking Him for the assurance of the blessings of my children, even when to me, it sometimes just seems like a wild ride.  

With Hope,

Ryan

What SEVEN Looks Like . . .

Baseball'n It Up

 

Hammerin' Hank

 

Camp'n With Poppy

Henry love to bake!



 

Hope Link

 

 

 

 

 

Isaiah 61:1-3English Standard Version (ESV)

 

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

 

 

 

I first felt God call me to ministry when I was in high school.  It was at Falls Creek, and all of you Oklahoma Southern Baptists know that can be an emotionally-charged place where decisions of all kinds can be made.  However, the calling I felt, the surrender I gave, had nothing to do with a great speaker or with the dehydration that comes from sitting in the pews of the then, non-air-conditioned outdoor auditorium (you know you remember those sweaty nights!).  In fact, this happened afterwards, in our church's cabin and there were two other kids that felt the calling too.  It's exciting to say that they are now serving as husband and wife in full-time ministry!  God is so creative and so good. 

 

To be honest,  I didn't know what God would call me to, however I knew that somehow, there would be a ministry in which He used me.  Late in 2000, He gave me this passage in Isaiah (Is. 61:1-3).  It was at the beginning of some serious healing He did on my heart - when my relationship with Him ceased to be one of performance.  At that time, I thought God would use me to help other "Christian" girls struggling with their identity and with their faith; those struggling with ways they had failed in the past, because I most certainly had done a lot of that. That wasn't what God was calling me to, and at that particular time, He still had MUCH more healing for my heart in that area. 

 

 

When Mike and I married, we were so excited to see what ministry God would give us.  You see, ALL of us who belong to the Lord, are ministers.  If you know Jesus, YOU have a ministry God has already placed in your heart and in your life!  We thought our ministry would be one of adoption, of financially blessing others, of overseas mission trips.  WHOA.  We had no idea where God would take us or where he would place us in ministry!

 

After Ellie Kate was born, Mike and I met Scott and Amy Haas. Their little girl Lilly, also had a rare genetic disorder.  Scott and Amy were taking a class at our church and happened to see a poster of EK, with specific prayer requests on it.  We somehow connected and found out that we shared the  same young pediatrician.  Can you imagine being given the job of overseeing the health of two VERY complicated, serious, terminally-ill baby girls (Seriously, Dr. R - you are a rockstar and the Lord used you in so many way)?!  God clearly brought us together.  Their is no doubt about it.   

 

I remember the first time we met  in person - the Haas' came over to our house.  Liberty and Conner, the eldest children, were about the same age, and they had a lot of fun together (they still do).  It was like a sigh of relief to meet someone like us - with monitors and meds of all kinds, someone who knew the medical lingo and who knew what it felt like to live in the hospital for months at a time (they've actually lived longer in the hospital with Sweet Lilly).  Amy and I realized that there wasn't a group for us, and we really had no outside support.  There were these amazing, international organizations for other groups and diagnoses, but nothing for the weird stuff, like us.  We talked about starting our own group; we prayed about it, as did our husbands, although I am sure they thought we were crazy for taking something else on when our daughters were on hospice (Ellie Kate was taken off after one year).  I don't want to speak for Amy, but I knew.  I just knew that this is what God wanted for us, from us. 

 

 

It's just so true!

 

In 2008, shortly after Miss Lilly Audrey Haas met Jesus, we started our group.  Through a precious pastor and his wife, Mike and I realized that THIS was our calling.  THIS was our ministry, our mission in life.  The broken-hearted.  The poor in spirit.  Captives in mourning.  THESE were our people. Thus began Hope Link. 

 

Hope Link will always be Ellie Kate's Legacy

 

We started with three mommas and now have over 30 that are involved in various ways.  We also are a 501c3 organization.  We meet monthly as a support group for moms of kids with rare, serious and undiagnosed disorders.  Hope Link has ministries of it's own as well, such as our Care Basket Project, where we donate hospital care baskets to those who are in-patient and are dealing with similar rare circumstances.  God has allowed us to evolve and change, and it has been absolutely beautiful to watch.  We've had parent night out's, as well as annual Hope Link Halloween, Hope Link Holiday Party, and our Hope Link Back-to-School Bash!  Hope Link Graduates formed this year which is solely for families whose children have received their Ultimate Healing. 

 

One of the most important things we do is our Hope Link Retreat, which is for our moms who have attended at least four meetings within the last year.  This is a retreat where mommas don't have to pay a thing.  It's a respite time for them, without tubes, without beeping monitors, without home-health nurses (even though we love them), without appointments. This year's retreat seemed to be the best yet (and I had absolutely nothing to do with the planning or execution of the event - yay!), and as we gathered around the bonfire, the Holy Spirit pierced my heart. 

 

Hope Link Retreat 2015

 

Under the stars, and with a smore' in hand (okay, maybe one in EACH hand), my heart beamed with joy, thinking about this mission that God has given to me and Michael, to Amy and Scott, and to our families.  This ministry that God called me to so long ago - one I never would have chosen for myself . At times I've actually begged to be led out of this ministry.  I have cried out to God to be released from, because this ministry is what I live day in and day out in my home (and so it will be for you . . . what God has called you to can also be the hardest thing  that you face, but it will refine you).   Hope Link is intertwined with the McLaughlins.  It's my personal calling and purpose. Mike and I have no doubt that it's the calling of our family as well.  These sweet families may never know or never understand the depths of love and commitment we have for them, but they WILL know that they are loved and that they are not alone. 

 

 

Here's the thing ya'll - your ministry is where you already are!  What are you already doing?  What pulls at your heart, the thing that you can't turn your back on?  What people-group are you drawn to?  YOU have a purpose.  Your marriage has been given a ministry and so has your family.  What is it?  Go out and valiantly jump into that calling God has given you, Friend.  You will never know such rich fulfillment as when your heart is serving in the ways it was designed and purposefully placed.  In giving of yourself physically, mentally, spiritually, emotionally, and financially . . . you will find rich joy, intense purpose and deep healing. 

 

 

My prayer, with this long post, is that you will recognize that you have been chosen for a specific mission and purpose.  Your ministry is there - go and recklessly love where God has placed you.

 

 

With Hope and Purpose,

 

Ryan

 

 

We Need Hope

This blog post was meant to focus on my dearest Hope Link, the ministry that is so near to both Mike and myself.  However, after today's events, I've decided to put that post on hold.  I promise I will get to it soon, as there is so much love that wants to pour out of my heart for this particular group.

So, just to catch you up, Henry has been doing really well.  We've felt that his PANDAS has been under control.  Last week though, we started seeing a few signs that something wasn't right.  Henry had a seizure a week ago Monday, then he had a few little outbursts of being defiant and super angry.  Trust me, this isn't your typical childhood tantrum. 

This kiddo hit two home-runs last night!

 

Running those bases

Last night, the Father woke me up.  I did NOT want to get up, ya'll but I knew the Lord wanted me to check on my children.  I thought He wanted me to check on Lucy for a particular reason, but when I walked out our bedroom door, I saw Henry jumping on the couch.  It was 3am and he was watching the Disney Channel, bouncing around the room.  It was like a manic-type episode of glee and extreme energy.  It took a long time to get him to settle down and get to bed.  

Late this morning, it became apparent that Henry is experiencing a flare.  This means that his brain is inflamed, causing him to act-out.  He was angry and aggressive, throwing things around.  Henry truly cannot control his behavior, so we really cannot discipline him.  What I CAN do is try to re-direct him.  I understand that many of you won't understand that I cannot "make" my son do something, or you might think that I'm just not disciplining him correctly.  I assure you, that is not the case.  PANDAS is a true disease, a syndrome that attacks the brain and makes it misfire. 

There are some differences with this flare.  Henry is in an extreme amount of pain.  It actually comes and goes in waves, which I am grateful for, but even slightly touching him at times, causes him to scream out and cry crocodile tears.  His head pounds.  His neck hurts.  His joints hurts, which means he pretty much hurts all over.

I've read many articles concerning PANDAS and the behavior that comes along with it.  There are several cases where the child feels like they are dying, or even tells their family that they are dying.  Without giving all details, Henry was stating many of these same things today.  He had never read those articles, obviously.  He has never heard me talk of them, because I haven't.  He said these things on his own because that is how he was feeling.  Your brain gets so inflamed, you hurt so bad, you get to such a bad place, that you think you are going to die.  Can you imagine?   I am SO grateful that these feelings quickly pass, and I am grateful to have received encouragement from other PANDAS mommas whose children have been through this exact thing. 

I'll be honest . . . I cried today.  I cried because of the hurting Henry is so obviously in.  I cried because Conner has to see this, hear this, be around this and it just isn't fair.  I cried because I don't know what to do to help either of my boys.  I cried because everything was going so well and then all of a sudden . . . BOOM . . . it's not.  For a moment, I looked around and started feeling sorry for myself, seeing the broken freezer, the messed up TV, the banged-up van, the fact that we won't be able to move this summer. Oh, and the fact that my husband has an amazing job and yet we are still bogged down with medical bills of all sorts with no end in sight . . . THEN, the Holy Spirit sweetly whispered to my heart and reminded me who my hope lies in.  His hand gently lifted my chin and I looked into his trustworthy eyes. HOW GRATEFUL I AM THAT MY HOPE DOES NOT LIE IN THE PHYSICAL!! 

Really and truly, Friends - if we look around ourselves, EVERYTHING is falling apart.  Even our bodies are falling apart (holla' to my fellow middle-aged mommas!).  We can't change it, we don't know how to make it all better, so we must run to the only one who knows the answers. 

I  looked up the definition of "Hope" this morning for my original post.  I didn't know how much I truly needed to be reminded of my true hope in Christ!  How faithful is our God, who speaks to us at the most perfect of times! 

According to Merriam Webster, Hope:
1. "to desire with expectation of obtainment"

2.  "to expect with confidence :  trust "

Ya'll, I have a true expectation that MY GOD knows it all.  He knows the ins and outs of PANDAS and the ins and outs of Henry.  I KNOW that this world is not my home and it isn't the home of my children either.  I've got one little girl already experiencing the perfectly complete, everlasting life that Jesus offers, and she is no longer suffering from ANY ailment of ANY kind.  That will be Henry someday, and Conner, Lucy,  Mike and myself!  My confidence isn't in this world.  It isn't in the advice I get from others.  It isn't in the wisdom from doctors.  It isn't in oils or medication or any passing fad.  My HOPE is in Jesus Christ, and He will never change when everything else will. 

Sweet One, do you have a hope in Jesus Christ?  Do you have confidence in His Word?  Do you have confidence in His promises to you?  Do you have confidence in eternal life?  Can you expect the Ultimate Healing, life after death?  You can.  You can, and it is so easy.  All you need to do is surrender your all, your everything, to Jesus.  Ask Him to take over.  Recognize that you are broken - that you can't do it on your own.  Choose Jesus.  HE is BETTER.  You won't regret your decision to hope in Him. 

Hoping in My God to take care of it all (the fridge, the van, and MOST of all, the health of my children!) . . .

Ryan

Seizure Monster

I'm not even sure where to start this post . . . it all still seems so bizarre to me.  Henry had a seizure on Monday while we were at Lucy's outpatient therapy.  He looked a bit pale so I took him to the vending machine.  Henry's always been my snacker, and he gets super cranky, and sometimes even feels sick, when he doesn't constantly have something to munch on.  He picked out a drink and a snack, and we turned to walk back in.

Henry stopped and looked confused.  He wouldn't look, or couldn't look, straight at me.  He said, "Mommy, I can't see anything".  And I looked at him closely as he said it again, then he just collapsed.  I knew it was a seizure.  It sounds dramatic because I guess it was, but Mike literally walked into the doors at that very moment.  He hadn't planned to come to therapy that day, but decided to stop by on his lunch break.  I had no idea he was coming, but the Lord had him there right as Henry fell to the ground.

We tried pinching him and calling his name, and all of the other things we seizure-parents do to distract our children during seizures; to check and see if the seizure is still going on.  He looked like he was asleep and didn't have any jerking or twitching, just as with the other episodes we had seen.  I opened his eyes and saw that they were rolled into the back of his little head.  Mike carried him into the therapy room and we slowly started to get him to wake.  He ate and drank a bit, and very slowly started to feel better.

Henry wasn't himself until last evening.  He was postictal, which means his brain was just worn out from the seizure activity.  This happens often after seizures, so we weren't surprised at all by it.  I put a call into the neurologist who upped Henry's seizure meds.  Seizures aren't considered "emergencies" unless they go on for a certain amount of time.  They also aren't considered emergent unless the patient stops breathing or if their breathing changes.  None of this happened with Henry, so we didn't take him to the ER and there was no need to call 911 (just to clarify for those who aren't familiar with seizures).

This is a great description of what Henry experienced: What happens with a seizure?

I am discouraged, as I truly thought that Henry's past seizure episodes were caused by a certain medication he had been on.  We had slowly weaned him off that med a while ago, so it is no longer in his little system.  So this means that Henry had a drop seizure and we just don't know why.

On a very happy note, Henry continues to be the sweet boy that we've known him to be - giving and tender-hearted, loving and sharing with everyone he sees.  We are absolutely grateful for this and it is something I don't take for granted!  I'm praying that this peaceful time will continue in his heart and in his mind.  I can literally see him making the right choices in his mind, right before my eyes.  It is a joy to watch him unfold and change before my eyes.  Lord, give him more!

Please pray for Henry.  Pray for his brain.  Pray that this is something that he will grow out of.  Pray that this will stop immediately!  Pray that God would give him understanding as he becomes more aware of his body and how it doesn't work the way that he wants it to.  Pray for Conner too, that he doesn't feel lost in all of this.  Lucy is doing so well, Henry was doing so well, then out of nowhere this seizure happens.  Conner told me yesterday, "It's just one more thing, Mom".

Heavy-Hearted,
Ryan