Outer Turmoil and Inner Peace

Outer Turmoil.  Likely, you feel it now too, whether it's within your family, or with the terror, madness and immense loss which has surrounded us as a Country.  It's impossible for us to escape  it - be it the death around us as a result of racial hatred or the death of a personal dream.  Precious friends of ours are mourning the deaths of their husbands, mourning deadly blows to their marriages, marking the anniversaries of children lost to disease and sickness . . . so.much.heartache and turmoil inside, outside and everywhere in-between.  

Turmoil (as defined by Merriam Webster):

 "a state or condition of extreme confusion, agitation, or commotion".  

Inner Peace.  I feel it - the Holy Spirit bringing complete peace to my own heart as I continually run to him during these uncertain times.  Peace is also in the hearts of my friends going through unthinkable heartaches.  It may come and go, but it is there because God promises it for us as Believers. Everything, and I mean everything, seems to be shaken-up and uncertain yet, somehow His peace is there, often times waiting in the silence.  

Peace (as defined by Merriam Webster):

• a state of tranquility or quiet; freedom from civil disturbance; a state of security or order within a community provided for by law or custom

• freedom from disquieting or oppressive thoughts or emotions

• harmony in personal relations

• a state or period of mutual concord between governments; a pact or agreement to end hostilities between those who have been at war or in a state of enmity

• used interjectionally to ask for silence or calm as a greeting or farewell

Here's the thing - Merriam Webster can't define the peace that comes from God.  It's a peace that doesn't make sense who those who don't know Jesus as their Savior.  We can still be concerned with every.single.thing around us - every threat to our family physically, mentally, emotionally, and spiritually, and yet we can have a "peace that passes all understanding".  I KNOW that God can, is and WILL use ALL things to work together for MY good and for HIS glory, and the same is true for all of those who know Christ.  The world may fall around us, but we have a faithful God who is on our side, fighting for us.  There is PEACE in knowing those things, and you can have that peace too! 

Jesus tells us that we WILL have trouble in this world.  This world does NOT offer peace to us, or rather the peace that it DOES offer is quite fleeting.  

John 16:33(ESV), "I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

John 14:27 (NLT), "I am leaving you with a gift--peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid".

Philippians 4:7 (MSG), "Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life."

Since Ellie Kate's death in December 2012, our family has faced many trials and much turmoil.  I don't like to think back on it too much, because it truly can be overwhelming.  My Grandmother passed away tragically and unexpectedly.  Both of Mike's grandmothers have died.  My Aunt  unexpectedly passed away and other loved ones have had serious accidents and hospital stays.  Three of our family dogs have died.  We've dealt with unexplainable heartache with Henry and have had his diagnosis of both PANDAS AND epilepsy.  We've added counseling, extra therapy and other doctor appointments to our already busy schedule.  

I've held babies who've just taken their last breath and held the hands of some dear friends as they kiss their babies for the final time, watching the funeral home coming to take away the earthly body of their precious children.  I've attended around 15 funerals since Ellie Kate's - of my own friends and of friends whose babies and even husbands, have left this world.  Mike and I had the unspeakable honor of having our lives intertwined with several of those who lost children in the 2013 Tornado here in Moore, OK. I received my Interstitial Cystitis diagnosis, and it has rocked our world as a family - more doctors, more surgeries, more pain, more therapies.  Mike had his accident where he hurt his ankle so badly in December that he is still recovering - more surgeries, more therapies, more doctors.  

More recently, we've watched my Mother on life support not once but TWICE, due to medical neglect, not knowing if she would wake and come back to be the momma that we know.  I've held her hand as she's navigated her new "normal", where her body and mind won't allow her to do what they once did.  

SO many ups and many downs, My Friends.  So  many losses - too  many to mention, really.  BUT, GOD.  GOD HAS BEEN FAITHFUL AND TRUE.  He has been faithful in our earthly losses.  He has been faithful in the diagnoses.  He has been faithful in the hospitalizations.  He has continued to provide, above and beyond our most basic needs.  

GOD NEVER CHANGES.  Everything, EVERYTHING around us in this world changes, but not Our Savior.  Because of Jesus, our sweet times outweigh the heartache - truly, that is ONLY because of Jesus.  

We are not the only family to face heartache and hardships; we are not the only ones who taste the effects of death, of sickness, of loss, of depression, of silence.  Everyone faces these things, and maybe YOU are facing these things now.  The only hope; OUR only hope . . . YOUR only hope . . . is Jesus Christ.  He is the lover of all Souls - red, yellow, black, and white.  He fights for ALL of us because He died for every.living.soul.  None is better than the other; all are equally precious in His sight.  

If you are facing heartache today, know that Jesus loves you.  It's not just a phrase to make you feel better.  It's the truth.  He made you.  He loves you.  He fights for you.  We must love each other and fight for each other just as He did, My Friends.  Knowing His love is the ONLY way to know peace.  

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Personal Peek . . . Very recently, we were able to head down to San Antonio to spend time with my brother and his family before they move overseas.  My beautiful sister-in-law is an Infectious Disease doctor in the military and is being stationed in Germany, while my brother has just been accepted into Oxford University (yes, my brother AND my sister are both working on their P.H.D's - I'm the slacker here).  We had a very sweet time full of rest, love and laughter. It was an incredible gift to be able to spend time together before their big move, and I'm so grateful we were able to make the trip as an entire family! I hope you enjoy some of the photos of our time away together . . . 

Lucy LOVES the pool and we someday hope to

 have one at our house so she can exercise and play daily!  

God planned it out so my Auntie Cheryl met us in Waco on the way down, 

on her 60th birthday!  What a fun treat!  

Teagan, Lucy and Liam

Precious girls with Matching Hair

Lucy LOVED Morgan's Wonderland, the special-needs amusement park in San Antonio.  It was amazing!!  Look at that smerk! 

Lucy, Lovin' Life

Our almost-teenager loved it too!

We celebrated Henry's 8th birthday as a family down in San Antonio!

Look at these smiles on the Ferris Wheel!  

Everything was handicap-accessible for Lucy - it was a dream!  

Meet, "Ruby" (our new, baby cocker spaniel).  

She loves Lucy and decided to ride on her lap most of the trip.  

Tully Cousin Time!

Magnolia Market

Precious shot of my Mom and her little Sis in Waco!

Life and Death

It's been a while since I've written and posted about Our Life, this Wonderfully Made Life which God has so graciously given us.  "Bittersweet" is how I would describe this season, as there are many, MANY struggles, although sprinkled with good.  For the Believer, the Holy Spirit comforts us in ways that are truly unexplainable, and even unimaginable by most.  I've seen Him comfort me so in many ways, at so many times, but to be honest - I'm not FEELING the comfort right now.  The thing is, He PROMISES to comfort us, so I know he is doing it somehow, even though I don't feel it.  His ways are not our ways (praise God, am I right?!).

In the past two months, we have seen so much LIFE and also DEATH - physical, spiritual, emotional - you name it, we've tasted it.  I think all of our children have inherited my sometimes overly-sensitive heart and with that, we often feel deeply - the good, the bad and the in-between.

Within the past month, we have seen many changes.  So much so, that I think it's just easiest for me to break it down for you, in my usual way . . .

FAMILY:  We've been able to visit with Mike's extended family over the past several weekends.  We've traveled some to see these loved ones, while a few of come to visit here with us!  THIS has been SWEET, as we've gotten to know these family members better and have spent invaluable time with Mike's two Grandmothers, MiMi Gresh and MiMaw McLaughlin. To us as parents, it's vital that our children spend time with their Grandparents and Great-Grandparents while we are all together here on earth.

On Memorial Day, the same time we were decorating Ellie's Spot with MiMaw McLaughlin and Aunt Jill, Mike's MiMi Gresh went to be with Jesus.  Jayme, Mike's Mom, was there by her Mother's side, as was PawPaw, MiMi's husband for the last 66 years.  Family and friends came in from all over last week and we were able to spend a lot of special time together.  The emotions and changes which have taken place have shaken up the kids, and their behaviors are clear examples of that, especially Henry's.

HENRY: This Sweet Boy has completed the first grade, again.  Last year we held Henry back on our own accord, but this year he is more than ready to move on to the next grade.  Because of EXTREME separation anxiety, Henry missed much of the last weeks of school.  He's been dealing with different types of obsessive behaviors.  He doesn't do the typical OCD things that people may think about - Henry is obsessed with electronics and in particular, with my cell phone - which means I've missed calls and messages, along with texts.

We are working diligently, trying to assist Henry with his OCD (including a new affection for puppies and electronic scooters), and pray that the Lord will relieve him of these things this summer.  We are also trying to keep him in tutoring, camps and various other activities in order for his focus to be on other things.

Being real - PANDAS is AWFUL.  I absolutely hate it, as much as I hate NKH, and even though PANDAS is not "terminal" in any way, it steals SO much from Henry and from us as a family.  It takes away so much PEACE and JOY.  It steals normalcy, and just like we can't take Lucy certain places because of the heat or lack of handicap access, we can't always take Henry out due to being over-stimulated or because of severe separation anxiety.  PANDAS makes my sweet, endlessly-giving, bright, polite, affection son  frantic, frightened and worried to the point of tears and panic attacks.  We HOPE, as a summer schedule falls into place, Henry's body and mind will settle.  Please pray with us for those very things!

LUCY: Lucy also finished school and was invited to take part in Grace Dance, which includes dancers from The Children's Center in Bethany.  Although Lucy slept through the actual performance (or played opposom), she LOVED the entire experience!  We even stayed for most of the recital and she danced and smiled the entire time.  It was a PRECIOUS memory for all of us - something we will treasure always.  The gift of taking part in this adventure is truly from The Lord!

CONNER: Our eldest son has completed the sixth grade and is on to Junior High next year!  While I desperately wish we could send Conner to Christian school, we absolutely love his group of friends that will also be attending the same junior high with him next fall.  Conner is being tutored this summer as he plans on taking a few advanced classes once school starts.  

Conner continues to be a complete JOY, and his laid-back personality and strong wit helps to keep things happy around our home.  I am INCREDIBLY grateful that Conner IS so laid-back, as I don't think he could handle things as well if he was a "type A" child.  God created Our Firstborn SO perfectly for our family and for the challenges we face.  

MIKE:  As many of you know, Michael is in the Oil and Gas Industry here in Oklahoma.  For those of you outside of our Great State, this particular industry, once the bread-and-butter of our existence, has been hit HARD, with large companies closing, and literally thousands and thousands of people have been laid-off.  Mike's job is still secure, and we can ONLY give GOD GLORY for this!!  I KNOW our precious friends are praying for us in this area, and HAVE been praying for security and favor.  God is SO good to continue to provide and we appreciate your prayers that this job security continues.  

RYAN:  My intercystial cystitis continues to worsen, but we are super hopeful at this time.  I've recently seen a specialist and have started physical therapy for these struggles.  I finally feel confident in the treatment I am undergoing and I have hope that it WILL get better and we WILL figure out what all is going on with my body.  

My heart continues to bleed for adoption - a sweet baby girl to join our family.  We absolutely want her to come in God's timing, and not in ours.  We DON'T want what He doesn't want.  We KNOW He alone can work out the major costs, the details and even bringing us the right little girl.  We've had a few situations fall through, and while I look back now and see why God hasn't placed those babies in our home at this time.  

HONESTLY, I don't understand why adoption is so hard, so expensive.  I don't understand some of the laws our state has in place either.  Literally, U.S. adoption is usually around $35,000-45,000 - who can afford that?!  Mike and I would foster to adopt, but we KNOW it would be too, TOO hard on the boys, especially after all they have been through.  We would love prayer for adoption and for all of the details that go with it.  

So, there you have it - the Life and Death; the "bittersweet" sprinkled with a tiny titch of good.  I know there are so many friends struggling - with job loss, with infertility, with adoptions that have fallen through over and over again.

CALL TO ACTION:  Undoubtedly, You have a neighbor who is hurting - someone in your community is struggling and YOU can make a difference by loving on them and by easing their burdens.  I trust you can recklessly love on someone today.  

Oh, PANDA, My PANDA

See this beautiful rose?  Henry bought it for me last week.  He calls it a "Sunset Rose".  Isn't it gorgeous?!  It's now my most favorite type of rose.  The "Sunset Rose" reminds me of how Henry sees things a bit different than others.  He names things differently, feels things differently, senses things differently.  And that's just it . . . though he may do all of these things differently than you or me, what he does see, feel, sense is BEAUTIFUL - not only that, but it's all breathtakingly beautiful!  Each of us has the opportunity to see that beauty in Henry, and in others, if we will slow down and watch, learn and open your heart and mind.


Sitting here with Sweet Henry by my side. No, he isn't at school, although he did his best and stayed there for a little while this morning.  Getting to school each morning is a huge goal for us during this particular flare, which seems to present more with physical pain and separation anxiety than with anything else we've seen in the past.  He is calling out my name every 10-15 seconds, even though I am right next to him, in the same room.  He needs to hear my voice because it brings him comfort.

Henry is moaning and telling me about his stomach hurting, his body hurting, his head hurting.  I believe him, and why shouldn't I?  He's already home from school, so he isn't saying these things to get a free ticket from that today.  It's hard for him to find the words to fully express his pain too.
I am choosing to be grateful and my heart truly is at peace - I AM grateful we are used to dealing with this in our Sweet Girls, where they hurt and they cannot tell us what's wrong.  That isn't foreign to us, so it doesn't bring me the anxiety that it could bring others.  I hope that makes sense.  It's amazing how God prepares you for things in your life, isn't it?  Take a moment to look back; how has God prepared YOU for the challenge you are facing today?

Another thing I am grateful for - the anger-outbursts and violence brought on by PANDAS seem to have melted-away into our own world of PANDAS history, and we fervently pray it stays there - in the past, as in we never have to deal with those symptoms again and Henry never again has to feel so out of control physically, that he can only express himself in hurting things around him.

(Click on this link to learn more about PANDAS and PANS)

This is such a tricky journey, this PANDAS Adventure.  It's obviously a turn I never thought we would be taking; one we never saw coming and one that has proved to push and stretch us in every way possible as a parent.

Recently, I received a little book in the mail from my friend Kate C.  Kate's daughter is around Henry's age and she too has PANDAS.  God brought Kate and I together through many mutual friends and her friendship and encouragement has been a breath of fresh air!  I was SO excited to get this little book, "In a Pickle Over PANDAS", as it fully explains this disease in ways a child and an adult can understand.  It's such a great book of explanations, that I felt moved to share some of it with you here today.

I encourage therapists, teachers and 
caregivers to order this book! 

Little Claire wrote a special note to Henry on the inside of the book.  He stared in awe at it at first - it's the first message he has received from a fellow PANDA.  

  Would you take the time to read the vital points this book so creatively and courageously brings up?

• I want YOU to know more about PANDAS so you will know more about our Dearest Henry.  
• I want YOU to know more about PANDAS so you can understand that there is sometimes more to that "bratty kid" at the mall who is running from him mom or hitting her when he seems old enough to know better.  
• There are serious physical and mental diseases and disorders that affect so many children, and
• It is incredibly important for Believers to ESPECIALLY be open-armed, open-hearted and open-minded when it comes to these little ones and their families.  

This is a story of a little boy who comes down with PANDAS.  It tells the story of how it affects him, how it makes him feel.  It's heartbreaking to read as a parent because it's like Henry's thoughts are jumping off the page for us to understand.  

I can physically watch as Henry's thoughts sometimes creep in - how he wants to fight it, and fights it for so long that his "brain hurts".  Sometimes he has fought so hard that he just has to rest from the typical, outside world (like with school). 

True example of children with this disorder.  Their brains literally swell, as do their joints.  It is painful and we can't just tell them to "buck up" because the struggle isn't on the outside or because it isn't visible to us.  Would we do that for an adult?  

This is such a picture of Henry and is issues with school.  It's hard for me to put it all into words, and yet this little book explains it so clearly.  

The book goes on to talk about anger, burning inside you, wanting to come out (what we call 'anger-outbursts)..  It also covers the fact that the little boy starts taking medications to help his body and brain feel better, how he visits doctors in other states and how ultimately, his parents figure things out and his life settles down.  

Yes!  His little life settles down!  We've seen that with Henry, in between flares, but we do long for more of them.  I will take these type of flares over the physical ones any day.  But I don't want Henry to feel ruled by his body or his physical pain.  I don't want him to be trapped by his thoughts and fears.  I don't want that to stop him as a child, as a teen or as an adult.  

While it's easy to shut these little ones and their families out and easy to judge the parent (especially in the middle of the grocery store when the 7yo in front of you is having a meltdown over a piece of candy in the check-out line), it's important to remember there is always MORE TO THE STORY.  Most of the time, it isn't "just" a tantrum.  Maybe there ARE medical issues going on.  Maybe the family has gone through stress or loss.  Maybe the child has been traumatized.

As Believers and Followers of Christ, here is the bottom line:  

It does NOT matter why the child is acting out - 

it only matters what our response will be to the child and to the caregiver who is with them.  .

GRACE.  MERCY.  LOVE - reckless and undeserved

I challenge you to look out for the families like these (like ours), out in the day-to-day.  Seek them out and love them!  Ask how you can help in the store or in the mall.  Pick up an item that a child has thrown on the ground.  Here's a big one:  MAKE EYE CONTACT.  Little things like this show great love and compassion, and those are the things that lead others to Jesus.  

Love Is the Greatest - I Cor.13:13-4;11-13

13 If I could speak all the languages of earth and of angels, but didn’t love others, I would only be a noisy gong or a clanging cymbal. 2 If I had the gift of prophecy, and if I understood all of God’s secret plans and possessed all knowledge, and if I had such faith that I could move mountains, but didn’t love others, I would be nothing. 3 If I gave everything I have to the poor and even sacrificed my body, I could boast about it;[a] but if I didn’t love others, I would have gained nothing.

4 Love is patient and kind. Love is not jealous or boastful or proud 5 or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. 6 It does not rejoice about injustice but rejoices whenever the truth wins out. 7 Love never gives up, never loses faith, is always hopeful, and endures through every circumstance.

11 When I was a child, I spoke and thought and reasoned as a child. But when I grew up, I put away childish things. 12 Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity.[c] All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

13 Three things will last forever—faith, hope, and love—and the greatest of these is love.

Calamity Family

There have been several drafts written for the Blog over the last few weeks, but I've never finished them.  There are a million reasons why, but ultimately, I just couldn't sit down and process my thoughts and feelings.

I feel as though we are in constant peril.  I feel as though we've become a burden to many, or that some may roll their eyes when they see yet ANOTHER prayer request for the McLaughlin Clan.  Personally, I know that I over analyze many things, but somehow, I can't shake the feeling that some of these fears are true.  I totally get that. ya'll. Embarrassingly enough,  I would likely feel much the SAME WAY in your position, hearing about this "Calamity Family" of sorts.

Oh, you guys!  I want to assure you - I don't like calamity.  I wanted a calm, "normal"/ typical life (although I'm learning that life doesn't really exist).  Mike and I wanted to be able to give generously and dreamed of doing so many other things in our marriage, in our lives, with and for our children.  It isn't exactly what we've dreamed of.

That being said, even though our lives don't look the way we though they would, I will tell you - our lives are SO MUCH richer than I ever knew it could be!  Life is so much deeper; it's so much more than our earthly hopes and dreams.  As Believers, our lives are so much more than ourselves!  They are more than ANYTHING we could DARE to dream or hope or look forward to.  The things that seem the heaviest take us to the deepest levels with the Lord Jesus!


What could be better than trusting the One Who Knows it ALL?  What could be more exciting than following Him into the valleys and over the mountains of life?  What is more fulfilling than your life being used for things SO FAR outside of yourself that you ever thought possible?! I chose Christ early in life and He recaptured my heart shortly after college. I choose Him now and I will choose Him over and over again.  Why?  Because I KNOW - His ways are SO much better than mine. HIS dreams are so much deeper than mine.  His yoke is so much lighter than mine!  Jesus is the ONLY way to survive life, you guys - especially a life of calamity.

If you know of a "Fellow Calamity", it's okay to get frustrated with hearing about their struggles. Here are some things to remember during their continuous trying times:

• It's okay to take a "break" from being so involved in the lives of your friends
• Don't stop praying - even if they are just simple, short prayers
• Don't stop being friends
• Don't cut them out
• Don't stop communication
• Don't leave them out and don't stop inviting them to things; even if they can't attend
• Texts and emails go a long way
• meals help - even when they aren't in official, "crisis"!  
• little treats help - even when they aren't in "crisis"! 
• If the Holy Spirit nudges you to do it, don't hesitate!
• Don't expect "thank you" notes - I was the queen of these at one time, but with life the way it is, I can barely sign the kids' homework, much less put my thoughts together, letting my friend know how much they've blessed me.  Don't let this hurt your feelings.  Have grace.  
• When in doubt - have grace.  

We ALL face trials in our lives.  We ALL have difficult times, going through DEEP valleys of darkness.  Some of our valley are darker and deeper than others and that's okay.  It doesn't mean that one is less "Christian" than they other:  it doesn't mean that one is "more faithful to Christ" than the other, or that they are working harder or are taking more of the right steps than the one continually in suffering. 

Romans 8:18(ESV)
" For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us".

I assure you, our brothers and sisters in Third World Countries suffer more than we could ever know or understand!  Look at the Apostles, Friends - their lives were FULL of calamity and crisis!  And they praised God for it because it only caused them to NEED CHRIST MORE!  Isn't that what we all should want as Believers - more of Christ?  

Ryan

• Please pray for Lucy as she is entering a new specialty - Nephrology - for the cystitis symptoms she's been having (UTI, pain in kidneys, similar to my IC symptoms, we believe). 
• Pray for Henry as he continues to be in a PANDAS flare, this time with OCD symptoms, severe separation anxiety (can't go into a room by himself), and a severe fear of going to school
• Pray for Conner as he finishes out the 6th grade; pray for special surprises to come his way; for him to feel loved and exalted (NOT left-out or forgotten).  
• Pray for Mike as he had his pink cast taken off today.  He is now in a walking boot and has many strict instructions to follow in order for healing to occur. 

Heartbreak

We are still here at OU Children's Hospital in the EEG Monitoring Unit.  Henry is sweetly sleeping next to me as I try to find the words to share with you my heart.  The truth is, I am exhausted and sleep-deprived and tired of being here in this tiny room.  I find it silly to complain as there are so many other people suffering around the world at this very moment - so many suffering worse things even here in this hospital, at this very moment.  We've spent months at a time in the hospital with Ellie Kate and yet I find myself stir-crazy and bored here with Henry, easily complaining about our confinement.  How quickly I forget how easy this is to endure, compared to all of the many other things in the world; compared to all the many other things we've walked through as a family!

We truly appreciate your prayers for Henry and that God would bring, that He would allow, seizures. We need them to come so that the doctors can see the possible triggers, so they can see where the seizures are located and so we all can be made aware of how those seizures affect Henry physically - heart rate, oxygen level, etc.  Although Henry hasn't had an official seizure since our arrival on Monday, the doctors ARE seeing results and are getting information that will help us properly treat Henry.  

The Therapy Dogs Came to Visit Henry! 

This morning, the neurologists rounded and filled me in on the latest readings of the EEG's. Henry's EEG continues to be abnormal.  Unfortunately (very unfortunately), Henry is having continual spikes on the left side of his brain.  This means he could have a bad seizure at any time.  It means he is prone to seizures.  It means he is having seizures.

You may remember that Henry recently had two abnormal MRI scans.  At first, it didn't seem that the abnormality was the cause of the seizures.  It is a common abnormality, from what I understand, and most of the time it goes undiagnosed.  As of now, the specialists are thinking that Henry's seizures ARE related to his abnormal MRI, but not to the part that we have seen on the test results.  They think that possibly, there are other abnormalities that we just haven't yet seen, or are unable to see, on the current MRI's.  

This news is heartbreaking to me, although not devastating.  I know that may sound strange and could be hard to understand.  As Henry's mom, I knew he was having seizure activity.  I'm the one who saw it and pointed it out to doctors.  I'm the one who pushed for testing.  I knew something was wrong.  I had come to terms with the abnormal MRI's, although Mike and I were truly upset with the news when we first found out about the abnormality.  I'm not sad that Henry will again be put on anti-seizure medication, because I expected that to happen after this study.  I just didn't expect seizure activity to constantly be happening in that sweet little brain that grew inside of me.

It's very hard to think that THREE out of our FOUR babies have had seizures.  As their mommy, I have to run away from thoughts of "what if?" or "did I do something to cause these things?".  There is nothing I could or couldn't do to change the Girls or even Henry.  My head knows that, and really my heart does too.  The sting is still there though and it's hard not to feel less-than as a woman and as mother.  Why can't I produce healthy children?  I know - the burden doesn't just fall on me, and no one in my family puts that on me.  It's just a normal thought-process for a Mother.

My Babies snuggling in a hospital bed - this has become a very familiar things for us!  One is always missing though.  We KNOW where Ellie is and she is more alive than ever!  

God now has us longing for healthy baby girl who we can adopt, in His perfect time. 

My heart IS broken for Henry because I don't know what life will look like for him in the future.  Will he get to play sports?  Will he suffer a catastrophic seizure that will debilitate him?  Will HE feel "less-than" as a boy, as a man?  What will this do to him emotionally - especially in the long run?

Mike has quickly reminded me tonight how wonderfully strong Henry is.  Henry is SO very bright, smart, quick-witted, and intelligent.  Henry reads incredibly well, especially for his age.  He is very strong in math and is reading AR books in the first grade (has been for some time now).  Henry is an excellent athlete and really excels in each and every sport he tries!  He is a "natural" at so many things but his true loves are baseball and soccer.  He is a GOOD boy who loves to give - he will give you his favorite toy, his best pair of shoes, his nicest set of clothes.  He gives GOOD GIFTS, and I love that God has placed that in his little heart.  It's one of my most favorite things about Henry!

Henry's actions remind me of what a good gift-giver God is and how He gave me such a marvelous gift in Henry!  God led us to have Henry.  God promised Henry to us, to me.  God told me he would be free of NKH, and He followed-through on His promise.  God breathed life into us again, in many sweet ways, when he allowed me to experience a typical pregnancy, birth, infancy, and toddler-hood with Henry.

The doctors want us to stay until at least Friday, in hopes of us still capturing some seizure activity.  They are also working with us on a plan for home, which would include new medications for Henry.  So, Bubbie and I will snuggle in again tonight (he likes me to sleep in the twin hospital bed with him) and will wait out the next two days, hoping that he will have a seizure.  If not, it's okay because we have a plan and information has shown up for the doctors to see and analyze.  The pressure is off, although we do still appreciate your prayers for seizures.


Several Friends have asked how they can help or what they can do for us.  Seriously, Mike and I are truly humbled - CONTINUOUSLY HUMBLED - over the kindness and generosity of those around us.  Strangers and friends alike, you love and serve us so well and have done so for a very long time.  There is no way we could still be on this journey without your faithful prayers and friendship; without your support, your encouragement, the many meals and snacks and Dr. Peppers you've provided over the years.  We are truly grateful.  Please know that we DO NOT take you for granted, Friends!!


Ways to Help: 

• Pray for seizures in Henry's brain
• Pray for endurance for Henry and for me as we are stuck in this lovely hospital room
• Pray for Conner who is really feeling forgotten and low right now - pray that he would be encouraged and that He would know that He is a treasure to us, to God and to others! 
• Pray for our families as they help with the kids, dogs, etc at home while we are away
• If you would like to help with a meal, you can sign up on the meal calendar by going to this link:
• People often ask about gift cards and, YES!  Those are wonderful.  We are not picky and we are truly grateful for anything the Lord leads you to give or for any way you feel led to love on us.  
• For help with medical expenses, tax-deductible donations can be made to Helping Hands (we turn in our bills and they pay towards them directly OR we turn in our medical receipts and they reimburse us with available funds - ALL gifts are ensured to go DIRECTLY towards medical expenses only):  

The Ellie Kate Memorial Project

Helping Hands Ministries, Inc.

P.O. Box 337

135 Main Street

Tallulah Falls, GA 30573

706-754-6884 (Office)

706-754-9247 (Fax)

www.hhmin.org 

melissa@hhmin.org

Seizures from Heaven

Awwwwwww . . . Seizures from Heaven (insert heavy, happy, sarcastic sigh).  This is what every parent dreams about, right?  Well, it may not be what EVERY parent dreams for their child, but Folks, it's what we are dreaming, hoping and praying tonight for Henry!  I know, I know, I know - it sounds absolutely NUTS.  You must be thinking, "Ryan has lost her mind!  I mean, she has REALLY lost her mind this time!".  Well, I think I "lost it" a long time ago, but in all sincerity, we really DO need to see some seizure activity in our Sweet Henry.  Let me further explain . . .

I'm writing tonight from the EEG Monitoring Unit at OU Children's Hospital here in Oklahoma City. Henry was admitted this morning and will stay here for the next several days, hooked up to a continuous EEG  monitor.  This is where the strange prayer comes in . . . we NEED Henry to have seizures while we are here. 

• We need these episodes to occur so that they are picked up on the EEG monitor.  
• When they are picked up on the EEG monitor, the doctors are able to analyze them and will be able to (hopefully) do the following:
• figure out where the seizures are coming from
• how often they are occurring
• what parts of the brain they are affecting
• and hopefully, what triggers some of the seizures in Henry's brain.  

It's a big deal for Henry to have a seizure while we are here and as any epileptic parent knows, it's only during these times that you do everything you can to ensure a seizure in your child.  Yes, it is very strange, even for us as parents! 

The Child Life Specialist came in and explained to Henry every little detail of the continuous EEG. She let him smell and touch each item, which was exactly what he needed as a sensory-sensitive kid!  I was so impressed (and super grateful!)!

Some of you may remember that Henry has a history with seizures and with seizure-like activity. We've seen this on and off since the fall of 2014 - around the same time Henry was diagnosed with PANDAS.  Henry had an EEG a year ago which unfortunately DID show seizure activity, so we know Henry has them. We were incredibly grateful that the EEG picked up the bad signals within that short period of time (the typical EEG runs around 45mins-1hr and it doesn't always 'catch' a seizure).  Since that time, Henry's been on anti-seizure medication.  We've also done MRI's on Henry's brain to help understand the seizures and to give us reasons FOR the seizure activity.

What's strange is that seizures are NOT part of PANDAS or PANS.  So basically, children with these disorders don't usually have seizures.  It's very rare for them to have such brain activity, so the seizures Henry is having are even more perplexing.

While Henry's MRI's have both come back "abnormal", the doctors do NOT think his seizures stem from that particular abnormality.  This is really confusing on several levels but instead of trying to explain it all and making you even MORE confused, I will just say this - the type of seizures Henry has aren't the type that usually present with his particular brain abnormality (insert heavy sigh from deep within my heart).

Child Life brought us a Hope Link Carebasket! At first, they didn't even know we were with Hope Link.  It was so fun to be on the receiving side of this!  

All hooked up! Henry keeps telling me that he, "looks so weird and gross".  

I told him he looks cool, like a Star Wars Character!  

Friends, you have been faithful to pray for us through thick and thin.  Many of you have been praying for us and with us since the beginning of this roller-coaster journey with  Ellie Kate, TEN YEARS AGO!  We humbly ask for your prayers again tonight.  Please know that we do not take this request lightly, as we know how busy your lives are and how burdened you already are with the heaviness of your own lives.  It is such a humbling honor to have you pray along with us and FOR us, Friends.  If the Lord leads, please join us in petitioning in the following ways: 

• Please join us in praying for Henry to have multiple seizure activity while he is here 
• Please pray that Henry wouldn't have any anger outbursts or any behavior that would prevent him from keeping his EEG leads on his head and body.  In order for us to catch activity, he must of course have everything on his head and in the right spots!  
• Please pray for CLEAR and DEFINITIVE results.  We are asking for pure, cut-and-dry answers so that the specialists will know exactly how to treat Henry.  
• Please pray for the time to go by quickly - for Henry not to get bored but for him to have a fun and exciting time here.  
• Please pray for energy, health and ease of pain for me as I stay here with Henry this week.
• Please pray for our parents (Henry's grandparents) as they help drive Conner and Lucy to and from school and practices and drive Mike to and from work (he still can't drive bc of his entire foot/ankle being in a giant cast).  Pray for energy, strength, patience, grace, provision, restful sleep, and protection for all four of them.
• Please pray for Lucy and for Conner as Henry and I are away this week and as big changes have hit our household once again. Pray that their daytime schedule can somewhat stay the same.  Pray for PEACE over their bodies and minds.

Oh, Friends!  How we covet your prayers!  I'm in "survival mode" thankfully, and my mind hasn't been wondering to the "what-if's" or "why us?", which I am incredibly grateful for!  I'm choosing to stay focused on the Father this Easter week, even though we are stuck here.  It doesn't feel heavy or burdensome, and I know that's because the Lord has made it feel light.  What a good gift!  

Also, our friends have set us up a meal calendar for the next few days and weeks.  Again, we do not take this lightly and we know some of you have literally been bringing groceries or meals for ten years now.  Only someone in love with Jesus could serve and love that well for that long! Thank you in advance for loving, serving, giving, and praying for us.  You will never know just how deeply your actions touch our hearts and how, with each act of love, just how sweetly you point us to Jesus.  

Link to the Meal Calendar: http://www.takethemameal.com/meals.php?t=XTTH9220

Praying for those Seizures from Heaven!!!

Ryan