It Hurts

This week has been one THE hardest, MOST draining, and most intense we have faced since after Ellie Kate died.  Spiritual Warfare to the max; blows that come out of nowhere and knock us to the ground.  You know, the ones that you don't know how to remedy and yet they shake your world to the core?  Yep, those.  I don't know what to do.  I don't know how to fix things.  I'm literally on my knees, hands up in surrender, crying out to God . . . "It hurts . . . Oh, God!  It hurts!".  I know many of you have been in the same place mentally, physically and spiritually as well.

Little Henry is having a very hard time.  I wish I could explain to you or go into all of the details, but I do want to be so careful and respectful of his privacy.  I will say that his PANDAS outbursts have been so intense this week that it's literally been out of control.  His OCD has been out of control too.  And it seems to rage inside of him and that eventually causes rage on the outside.  I have the scars to prove it.  He has broken blood vessels in his precious, beautiful face from screaming so hard for so long (which is something I've been warned about by other PANDAS parents).

We know Henry is in a flare.  He has a bad tooth that needs surgery, and I'm pretty sure that it's not just one that needs to be removed.  He's on two antibiotics for PANDAS, and I love you folks, but please don't send me any remedies for his teeth at this point (thanks in advance).  The pain he has from his teeth and the infection going on from his tooth, has intensified his PANDAS flare.  We are anxiously awaiting insurance approval and an opening from out dentist next week!  Maybe then it will all settle down???

I still feel that it's hard for others to understand Henry's behavior.  Maybe it's because it's hard for me to understand.  But I do want to clarify because I desperately want people to understand my precious son.  It's become clear that Henry's behavior lines up with that of Aspergers.  He has almost all of the traits.  Looking back, we've seen some of these behaviors from the beginning.  But of course they have truly intensified since Ellie's death, and even more so since his last bout with strep.  So, is it Aspergers?  Is it PANDAS?  We don't know.  Right now he is diagnosed with PANDAS, which does make sense.  But if you have trouble understanding Henry, maybe it will help to know that he has all of the symptoms of Aspergers.  Does that make sense?

This week has been really hard on Henry and on me and Mike as parents.  It's affecting our marriage in ways that the girls' illnesses never has.  It's affecting Conner in ways too - especially in his relationships.  And it's detrimentally affecting Henry's relationships with friends and with those in our neighborhood and even at school. Our hearts are just broken.  I'm thankful for a few friends in the neighborhood who have jumped in and protected Henry and myself and who have truly understanding hearts.  Bless them, Lord!  

I KNOW I ask for prayer so often.  I really and truly believe that it is something we are called to do as Believers - share burdens. pray specifically for one another.  It's theraputic for me to share my heart with you here as well.  So, thank you for praying specifically for Henry and for our family.  I'm asking the Lord to richly bless each of you for your faithfulness in loving and serving our family so well.  


Father, IT HURTS.  
-Ryan

Three Little Girls

It's a sad time within our community.  The community of Moore and our own special-needs community has really suffered loss lately, and it's so hard to make sense of it all. To be honest,  I can't make sense of it, and I never will be able to; until, that is, I am reunited with Ellie Kate and I see Jesus face to face.

One of these sweet little girls died of the flu.  It seems so senseless, right?  A typically healthy girl, hit with the flu, and all of a sudden she has fluid on her brain because of an extremely high fever caused by the virus.  And then she's with Jesus.  And her family is left to find a new normal, with hardly any notice.

One little girl went to school with Ellie Kate, or should I say, Ellie Kate went to school with her.  She and her sister were popular at Wayland Bonds Elementary, with their beautiful smiles and determined personalities.  Even though this sweet one was physically disabled, she was extremely smart and knew exactly what was going on around her.  I always stood in awe watching her - she had friends.  Real and true friends.  She was completely cognitively aware and had the most beautiful curly hair (other than that of my girls, of course).

The first time I met her, I had stocked her momma.  Really I had just seen them in the grocery store when I had run in for one item.  I could see that both girls were extra special and I wanted to track down that momma and meet her.  Her girls seemed close to Ellie Kate's age and I wanted to get to know her as we had just moved from North OKC to Moore.  I'm sure I scared that woman to death as I ran up to her in the check-out line, asking all kinds of questions and talking to her beautiful girls.  It was an honor to briefly know this little one, and many of our precious friends are close to this family, and are hurting and mourning, yet rejoicing.  They are glad the earthly suffering is over.  But her sister, friends and parents are left . . . without her, to find their new normal.

One little girl is a dear friend of ours, a dear friend of Ellie Kate's.  Kelsy is on hospice and is very close to meeting Jesus face to face.  Her little earthly body is failing rapidly, and her family and friends have surrounded her in every possible way.  I have no doubt that Kelsy feels loved, safe and secure.



Yesterday, Mike and I had the privilege of going out to Kelsy's house with our precious friend, Holly Hall.  Holly runs "Ellie's Legacy",  where she takes hospice photos for children like Ellie Kate and Kelsy.  Holly did such a beautiful job capturing Kelsy and her family.  The giftings God has given to Holly are absolutely incredible, but the fact that Holly allows Christ to use her giftings to love others in this way is really a remarkable thing.  Who chooses to go out and take pictures of a dying child; especially one that they do not know?  God has given Holly the strength to do it and she does it all so bravely.

 Kelsy and her Mommy

You can never be prepared for death

Beautiful, long eye lashes

Holly and I visited today, talking about how bittersweet it is to be involved in these precious hospice pictures.  We've done this three times now, and each time has been vastly different, but also very intense.  It gets overwhelming sometimes, but it is also an extreme honor. I can honestly say that it is one of the greatest honors of my life.  Oh, Father!  What a complete privilege this is!  Thank you for using us in this way.  Give us courage, peace and strength.  May you alone be glorified in these sweet endeavors.  

Kelsy loved being surrounded by her sisters yesterday

I don't pretend to know exactly how each of these mommas are feeling right now.  I have a taste of what they have seen and heard and what they have yet to face in the days, weeks, months and years to come.  But it's only a taste and everyone's loss and journey is different (wouldn't life be miserable if we were all the same?!).  Even though I don't know exactly how all three are feeling at this moment, I am praying in specific ways.  And you know what?  YOU can pray for them in specific ways too.  Even if you've never suffered loss.  Even if you don't have a critically ill child.  You can pray for all three women, specifically.

• Ask God to heal their hearts.  
• Ask Him to prepare their hearts for the viewings, for the services, for the casket and funeral decisions that Kelsy's mom will soon make.  
• Pray that the Lord would bring extreme peace to each heart and that He would capture each thought that isn't of him.  When a mom loses a child, her mind can race in a million different directions and it can mourn a million different things at once.  
• Pray that the Lord would reign in feelings and that he would oversee every conversation, every word that is said around and over each woman.  

You can pray specifically for the families - for the brothers and sisters left behind; for those daddies who mourn not being able to protect their little girls from death (yes, that is something these daddies face).  Pray for grandparents, pray for the little friends within these communities who are affected by these great earthly losses.  I'm asking you to intercede on behalf of these families who are suffering much.  

This world has so much loss and hurt, doesn't it?  That's why we need Jesus.  And yes, Friends - He DOES give us WAY more than we can handle so that we know that we need Him.  These folks have way more than they can handle right now, I am sure of that.  And we can ask the Lord to lift their burdens.

How do you handle loss?  Who do you go to?  With all my heart and with all that I am, I encourage you to go to Jesus.  Even if you never have before, cry out to Jesus and He will meet you.  It's absolutely not religion, legalism or rules - if it were, I would be the first out the door.  What He offers is Freedom.  He is the ONLY way to eternal life and abundant life (full, rich) here on earth.  There could be nothing more wonderful than that!!  These children are in the presence of God.  Where will you be when you die?  

"And now, dear brothers and sisters, we want you to know what will happen to the believers who have died so you will not grieve like people who have no hope." 

(I Thess. 4:13)

A PANDAS Flare

Today is my Sweet Husband's Birthday!  Mike is 39 years old today, and I couldn't be more happy to be his wife.  I'm so grateful that the Lord knit him in his mother's womb, creating such an incredible destiny for his life! I think about my own boys and the days that they were born - how I fell in love with them immediately, and how I prayed from the beginning that the Lord would capture their hearts.  But I don't know what God will do with their lives and I don't know how He will use them as they grow older.  I look at Mike's life and see him as a baby and now as a grown man facing all sorts of trials and hardships, but facing them each with faith in the God that He loves.  

Michael Wayne McLaughlin at approx age 7

I see Mike stand by me as my partner and I see him love our girls and our boys with reckless abandon, loving them each in the specific ways that they need to be loved.  It's amazing, really and I'm in awe that I get to be loved by such an incredible man.  Happy Birthday, My Love.  


Updates . . . 

I'm still learning more and more about PANDAS.  I guess I always will be learning, just as I am still learning about NKH.  It will be a fluid learning experience, that's for sure.  Right now, Henry is experiencing a PANDAS flare.  Since this is an autoimmune disorder, it has flares just like MS or Celiac disease. The way we know Henry is in a flare is that his behavior gets worse.  Sometimes I think, "How can it get any worse?!", but at this time, you can clearly see an increase in outbursts and we know he is flaring.  We've seen Henry's specialists this past week, both of whom are so loving and have Henry's best interest at heart.  They are working hard for him, for us.  We've put some things in action to hopefully lessen the effects of the PANDAS during this particular flare.  Please pray with us for relief as it affects us all.  

I think many people wonder what Henry's outbursts are really like or why they seem to be so bad.  That's totally understandable.  So, I wanted to give you a picture of what a day with PANDAS is like for us right now, during a flare . . . 

It starts with bed-wetting, each and every night.  We use precautions for Henry and he tries his best, bless his heart, but a 64lb little boy urinates a lot, even overnight!  Sometimes the urinating issues run over into the day, and he takes precautions there too.  I'm grateful that Henry isn't embarrassed at all by this, but I'm afraid that will happen in the future.  

I never know what will set Henry off.  I don't know all of his "triggers" yet, so I feel like I'm walking on egg-shells each day.  During flares, I sometimes wake up to screaming in my face, often being hit or having things thrown at me.  There is refusal to dress the way that he needs to such as wearing socks, wearing warm clothes or even wearing a coat.  He also wears strange layers like shorts under jeans and many times will wear his shirt backwards, on purpose.  All sensory issues, which are also sometimes hard to understand.   

Henry will try to leave the house and has no concept of danger or natural fear.  We've had some scary encounters because of this, even with our alarm system and special top-locks.  He knows how to escape and will do it if he feels the need.  Since he doesn't understand healthy fear, he will climb on top of the car and try to jump off, or walk into a stranger's home without thinking twice.  He will run into the street without looking and without caring what happens. He says "no" to homework and to chores, "no" to basic things he needs to do around the house.  I LOVE how independent Henry is, but I don't like that he does things in his own time and in his own way.  It's hard for us to understand. 

During this flare, we are seeing Henry's OCD symptoms coming out, especially in his thought life.  It happens in other ways too unfortunately, but mainly he gets a thought in his head and can't get it out. Can you imagine how maddening that is for a child?   Part of PANDAS is that it can cause attachment issues.  Henry is so independent, but during this flare he is incredibly clingy and is so frightened to be out of our sight. This includes showering, using the restroom, walking to his classroom, taking the dog outside, jumping on the trampoline (when he knows I can see him directly outside the window).  I hate seeing him so in fear.  I desperately want to take it for him.  

The truth is, we can't force Henry to do things, although I know many of you must think that we should.  You can't do that with PANDAS.  As our psychologist said last week, typical discipline DOES NOT WORK with PANDAS.  Plain and simple.  Although I still try and probably always will.  He just needs to keep meeting with his Behavioral Specialist, who will give him the tools he needs to act appropriately in various situations and settings.  Until then, we wait.  We love Henry where he is and we wait.  We have to ask those around us to wait too - grandparents, teachers, friends' parents, people at church, etc.  It's hard for us to understand as the parents; I can imagine how hard it is for those around us who we ask to wait and just love in the meantime.  But you know what?  Everyone that needs to IS doing just that!  They are loving and waiting and doing whatever they can to help Henry and our entire family.  This isn't Henry's fault.  It's a sickness just like any other thing.  And it is exasperated by our life circumstances and by the trauma and loss he has seen and felt.  It breaks my heart for him and yet I am so encouraged by those who are standing by us and loving Henry the way that he needs to be loved at this time.  

The rest of us are hanging in there.  Conner is doing well in school and is becoming more independent.  Lucy is back at school and loving it, giving us her "Princess Look" whenever we pull into the school parking lot.  She is still having lots of Chorea movements and seizure-like movements, but those don't cause any damage.  I think they just annoy her sometimes.  Mike is doing well and absolutely LOVES his new job.  I'm having an IC flare right now and found out I have to get bifocals - I'm getting old!  

We got out Ellie Kate's old table and chairs for Lucy to use to build her core with.  She is loving it and feels like such a big girl!  And can you see the tiny braid in her hair?  She's growing up so fast!

We are in a happy time, a time where we feel God telling us to move some things around and make different priorities.  It's exciting and scary, all at the same time.  Please pray as we move forward and trust the Lord's leading.  

Lord, I want your way to be CLEAR so that we know exactly what you want for us and for our children.  Thank you for the exciting things you have placed in our hearts and minds.  Show us, Lord and may we not move without you.  

Thank you for our precious friends who love us where we are, who love Henry where he is, and don't judge.  What a blessing the Body of Christ can be to a hurting heart!  Thank you for placing joy in my heart and longings for get-aways with my family to enjoy your creation.  Through Ellie Kate, you've shown me that I need to enjoy the life that you have given and the beautiful world you have created.  Let us all drink in your designs and creativity, Father!  Thank you for giving us joy in the things around us.  

With Hope,
Ryan

He is Faithful!

Hey, Friends!  Forgive me for not updating you sooner concerning Lucy Belle and her flu.  Several of you have inquired as to how she is recovering, and right now, she is doing really well!  Lucy has run a low-grade fever up until today, but really has had no other outward symptoms.  She's still fussy, and I imagine that is from feeling achey from the flu (but that is just a mommy's guess).  Her tummy has been really active the last two days, and we are hoping that doesn't turn into anything either. 

If all goes as planned, Lucy will go back to school on Monday.  This is HUGE for us!  I NEVER would have thought that Lucy would handle the flu outpatient!  Thank you so very much for all of your thoughts and prayers on behalf of Our Little Girl.  I'm just incredibly grateful to the Lord for letting her little body heal at home this week.  

Other than resting and recovering from the flu alongside of Lu Lu this week, I've started digging more into the world of PANDAS, which Henry was diagnosed with this past fall.  Since last Sunday, Henry's behavior has taken a down-turn.  I always hesitate in posting about Henry and his struggles because as his mother, I don't want to overstep my bounds in sharing.  I want to keep every part of Henry safe, including what people think of him and how they see him.  But I also know that you are along the journey with us, and we want you to know how to pray and how to love Henry well.  As one PANDAS mom explains it, although PANDAS is related to the strep virus, it is not "strep in the brain".  It is an autoimmune response to strep, where the antibodies released to attack the strep are able to cross the blood brain barrier (antibodies not the strep bacteria) and the antibodies mistakenly attack the brain, causing inflammation.

It is important to us that you know that Henry has a disease and that he isn't just "acting out".  He has a disorder that takes over and causes inflammation in his brain.  There is little known about PANDAS and very few doctors willing to jump in and treat it at this time.  It seems to be the "big" hospitals that are most interested in PANDAS, and that's where we are now inquiring (Boston Children's, for example).  It's SO incredibly hard to remember the "disease" part when Henry is acting out.  SO. STINKIN'.  HARD.  It would be easier if it were outward, like needing a g-tube or not being able to walk, like Lucy.  Henry looks typical (and is oh-so-handsome, by the way), so everyone expects him to act like a typical six-year-old.  But he doesn't.  

Mike shared with me today that he is concerned with how Henry will handle the real world as he grows up.  It truly is a concern, although I know it is a concern for each and every parent.  But really, will Henry be able to learn to act/react in society?  It's a topic for us to face now with PANDAS on board, and Mike and I want to be armed with the best, most current information out there so that we can help Henry in every possible way.  

Thank you for praying that God would open our eyes and that He would truly bring information our way.  Thank you too for praying that He would open doors and provide opportunities for us to treat Henry properly and to have him seen by the proper doctors and therapists.  

God is so faithful, isn't He?  He is relentlessly faithful, even when we are not; even when we are running from Him.  He lovingly calls us back to His side, often wooing us with His signs of love.  I've seen God's faithfulness so much lately, and I fully expect Him to show Himself faithful where Henry is concerned.  I just need to be patient in the waiting.  


With Hope,
Ryan

The Flu

Lucy Belle has the flu.  I'm sure you all know that it is rampant right now, pretty much everywhere in the country.  It's especially dangerous for the old, the very young and for those with compromised immune systems.  The flu can be very dangerous for Lucy and we've really tried our best to keep her safe from it this fall without keeping her in a bubble. We were all vaccinated and in fact, Lucy's doctor is kind enough to have her vaccinated very early each year in hopes of preventing illness.  This time, it just didn't work, which I've heard is the case for many this year.

I had the flu last week, after all of the family get-togethers over Christmas.  I've had the flu before, but this flu was the absolute worst I have ever experienced.  I ran fever for ten days and didn't even know what day it was for most of the time I was sick.  I HATE that Lucy has this flu because I know how terrible I felt with it!  It breaks my heart to know that her little body must ache, her head hurt and of course all of the other symptoms that come along with this flu.

Lu Lu resting in the ER

Check out Lucy's new kick's thanks to Brandy White, Lucy's "I Run For" Runner 

(her shoes were the talk of the ER)

We spent the majority of the day yesterday in the ER receiving fluids and running tests.  We had to find out what was causing her high fever, and really I was surprised that it was the flu.  Once we had been exposed over Christmas, we put Lucy on tamiflu, just in case.  Apparently though, Lucy is what they have called a "tamiflu fail".  So, there's that (sarcasm).

Lucy slept well all night and is still sleeping now.  She's on continuous feeds of pedialyte to keep her hydrated and we are doing our best to keep her fever down.  Mike and I really don't want to be admitted (who does, really?).  Please pray for Lucy's symptoms to subside immediately.  Pray for comfort for her little body and ease of pain and fever.  Please pray too that we would avoid the hospital.  It's not that I'm afraid of going there, it's just that I know all too well how it will affect Henry especially, since changes are so hard for him.  I don't want to cause any other changes if at all possible.

Thank you for your love, prayers and support!

Ryan

Is it Really Over?

It's another new year, and I have to tell you that this Christmas Season, this past Month of Reckless Love, sped by like the train on The Hunger Games, faster even than The Polar Express.  I felt like I barely saw what was going past me, unable to take it all in before we were on to another event or celebration.  I hate it when life goes by that fast. I'm the kind of person who loves to relish in every last moment of tradition and the time I have with my loved ones, and yet this year it was all over in an instant.

Maybe it's because this was our first actual Christmas to celebrate at home without Ellie Kate (we spent last year out of town).  We had to decide what traditions we wanted to make as a family (did I mention I am big on traditions?).  I have to admit, there were some dark times near Ellie's Heaven Day, as we poured our hearts to the Father.  Truly, groanings too deep for words.  At one point I begged Mike to never let us stay in the house during that particular time again.  Reliving those last suffering hours of agony . . . it's all too real, vivid and heartbreaking.

On Ellie's Heaven Day, the day she was set free from this broken world, I awoke a bit weary, although choosing to rejoice in the fact that my Daughter was healed.  I walked past the front door, and something caught my eye.  I opened the door and I was stunned to see pink balloons covering our lawn.  Someone had done this to honor Ellie's Heaven Day!  They wanted us to know that they remembered, and when I saw those balloons that morning, I nearly fell to my knees.  I kept saying, "Oh Father! Oh, Father! Thank you!".  I cannot tell you how beautiful it was!  To me it represented Ellie's spirit rising to see her Savior.  Later I found out that this grand gesture was done by a beautiful friend who knows the pain of child-loss.  Knowing this gift came from her makes it that much sweeter.  You will never know how much simply "remembering" means to the one who has lossed.  Thank you so much to everyone who remembered Our Girl on the 23rd!  My heart was NOT in despair, as some would think, because God encouraged me through YOU!  Each text, each call, email, post reminded me that Jesus was with me and that He used Ellie Kate in the life of the person who had just contacted me. It was such a beautiful thing.  

Truly one of the most beautiful sites I have ever beheld

Friends, we DID have a wonderful Christmas.  We DID make new traditions like going out to breakfast the morning of Ellie's Heaven Day. We had unexpected goodies and handmade gifts that were delivered.  Christmas cards covered our walls. It was joyful, precious and exciting, just the way Christmas is supposed to be.  The sting of death hangs over in every situation, but that sting becomes less and less intense, and for that I am so grateful.

This year, we celebrated with friends and family from both sides.  I love that Henry, Lucy and Conner were able to spend so much time with their aunts, uncles, cousins, and grandparents.  How healing that must be for their hearts and how safe they must feel being surrounded by people who understand them and their unusual lives!

Lucy loved her time with Aunt Liz and Aunt Jen

Bowling with Cousins!  Aimmee, Conner, Scott, Emalee, 

Gabe, Henry and Lucy (Matthew, Andrew, Molly had to make an early exit due to the flu)

Precious time with Aunt Rachael, Nunnie, Poppie, Aunt Charla, Uncle Tyler and of course, Liam and Teagan!

We were showered with the most wonderful gifts from some very special people, some of whom we have never met.  Mike and I truly enjoy telling our children that their gifts truly ARE from Jesus.  He loves them the same no matter what they do, but sometimes He decides to give extra special gifts to remind us that we are truly loved.  And those tangible gifts sure showed us the faithfulness of our Father-God this year.  If you were a part of that giving-group, thank you so much.

Our Gift to the Kids: "Scout", a chocolate cocker spaniel puppy (they are obviously in love)

Lucy received a "Tinker Bell" doll that looks just like her! 

 She also got an entire box of "blees" (her lovies)!

I want to tell you so much!  What God has revealed to me in the last week and where He is now holding my heart.  I promise to post more about that and about the New Year and new beginnings in my next post.  I will leave you with my most favorite set of photos of Lucy this Christmas.  She truly enjoyed the time spent with her family and had a blast opening gifts!  She knew what was going on.  Her eyes had been opened and the Lord let a switch be turned on in her little mind - she was more aware this Christmas than ever.  And that awareness, that joy, that excitement, is what I am feeling about this next year because of what GOD has done. 

 With Joy - Ryan

Christ's enlightenment, joy and excitement 

to you in the New Year!