Morning Has Broken!

My heart is overcome with gratefulness, spilling over with joy!  No, we did not win the lottery or fall into some lofty inheritance.   Mercy who has brought me to this place, allowing heavy, dark concrete to fall off my body, mind and spirit at this moment in time.  This joy isn't because of anything I've done, but I am more grateful for these moments than years of "thank you's" and praises could ever express!  

 

The Spirit speaks to me so often through song. Some may remember the old ballad of Cat Stevens' about a breathtaking morning, the peace so tangible, it dances like a mist over the meadow; the delicate birds begin to sing the songs God placed inside them. 

"Morning has broken like the first morning

Blackbird has spoken like the first bird

Praise for the singing

Praise for the morning

Praise for them springing fresh from the world" 

- Cat Stevens 

For the last thirteen years of our roller-coaster Journey, one desperate song has continually played in my mind, body and spirit.  God placed words in my mouth at the beginning, when Ellie Kate was in the PICU as a newborn, as the doctors told us she would likely die that very night.  I had no words - groanings too deep for words.  Some of you know exactly what I mean.   I only remember the chorus, but maybe that's all I'm supposed to have stamped upon my heart . . .  

"Oh, Lord Jesus, Come quickly to me!" 

 

 

But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.

Romans 8:25-27

At times in recent years, I've felt empty and broken, as if a piece of me were missing - a piece I needed to keep going.  During the trials and heartaches of this life, every single one of those feelings is normal.  Every feeling is okay to have, to FEEL.  Don't be ashamed of those feelings - there is nothing to be ashamed of, Dear One.  You are human; God made you with feelings and created you in a way to express them. 

 

There are no magic words, no specific Christian book to read or Study to go through; your heart and mind won't change when you hope or "wish" it away.  No, it comes in the Lord's timing.  He may give you this joy and freedom DURING a struggle, or He may do so in between the seemingly constant trials.  All we can do, all we MUST do as Believers, is SURRENDER - surrender over and over, our hearts always bent before God. 

 

Your Father WILL sweep in and show Himself in your life, even in the midst of the heaviest trial.  He is, "Mighty to save", continually moving mountains on behalf of His beloved Children (even if we don't see them).  

 

 "The Lord your God is in your midst, a mighty one who will save; 

he will rejoice over you with gladness; he will quiet you by his love; 

he will exult over you with loud singing".

Zephaniah 3:17

 

Our God continually PROMISES to make ALL things work out for YOUR GOOD (and the good of your children, spouse, family), and for HIS GLORY.  As followers of Christ, what more could we want in this life than for God to be glorified through our lives and the lives of our children, AND for Christ to get the glory for everything?!? 

 For I know the plans I have for you, declares the Lord, plans for welfare 

and not for evil, to give you a future and a hope.

Jeremiah 29:11 (ESV)

 

This is God’s Word on the subject: “As soon as Babylon’s seventy years are up and not a day before, 

I’ll show up and take care of you as I promised and bring you back home. 

I know what I’m doing. 

I have it all planned out—plans to take care of you, not abandon you, 

plans to give you the future you hope for.

Jeremiah 29:11 (MSG)

 
Oh, Father!  Thank you for this glimpse of happiness, joy and sweet expectation!  Thank you for relieving my heavy burdens, even if only for a moment!  How grateful I am to breathe so lightly, to rest so deeply and freely, knowing I can trust YOU with everything.  Life will always be difficult.  I will continue to live in survival mode because of our circumstances, however, YOU are there.  I find hope and peace, knowing you are using all of this for the good of my children, my family.  How humbled I am that YOU would be glorified in me, a broken and sinful human.  When I'm next in the darkness; if the heaviness of these trials once again dims my spirit, may I remember the feather-weight of these days.  

 

I Surrender, 

Ryan

 

CONNER is enjoying his freshman year at Westmoore and is working hard, playing on the soccer team.  High school is a whole new world, but we are incredibly proud of the young man Conner continues to be - tender-hearted, affectionate, witty, helpful with his sisters and patient with his brother. His life brings peace, balance and LAUGHTER to our Home.  I'm so grateful for Conner (or, 'Boy' as Bowen calls him). 

BIG grin from Henry - looking up to Big Bub

 

HENRY has been initiating his schoolwork and chores, showing more and more of the "Real Henry" we know and have missed.  He's growing more responsible and even more affectionate, hanging on to every verbal affirmation that comes his way.  Henry has changed for the BETTER since his IVIG treatment last fall, and we've seen a HUGE difference in his life.  His life is more calm and steady, without as many highs and lows.  He is able to eat and has gained back the weight lost last summer due to PANDAS symptoms.  Henry's playing soccer again this year and has played every game in it's entirety (without taking a mental break , quick walk to calm his mind, not even a break for reassurance from me!  This is HUGE.  I hope to update more on Henry soon.  In the meantime, THANK YOU for praying for our Sweet Boy.  Thank you for giving, helping to provide a way for him to go to D.C., paying for his IVIG treatment - a treatment which has clearly changed his little life for the better! 

Look at the smiles on those faces!

 

BOWEN is a light and complete JOY!  Speaking in sentences now, we take great delight in hearing her speak, which happens to be quite often.  Bowie is athletic and is now obsessed with our "mamboleen" (trampoline).  She's small for her age, which just adds to the fun for me, as I want her to stay a baby as long as possible:).  Bowie Jane is just as strong-willed as our other kids, and has recently said, "Mommy, YOU MUST obey me!", "Mommy, PLEASE, no talk, no sing (I like to hum and sing around the house)".  She's graduated from "Bubba" to "Enry" (Henry), although she still goes back and forth on those.  My parent's dog is named, "Duggah" (Sugar) and Lucy's name is not only "Sissy", but also, "Juicy" (Lucy).  She enjoys singing, "Lucy, My Belle" with me - a favorite of "Juicy's", which PawPaw Stan would sing to her often.  Mike and I can't imagine life without Bow, and the boys often say the same.  

Joyous Bowen!

 

LUCY is growing, which is wonderful!  A year ago at this time, Lucy was so still ill and thin; she barely had energy to move at all on her own, something she loves to do.  Now, she's weighing heavier than ever, which is a MIGHTY blessing!!  Her energy level amazes us, although she still literally falls asleep anytime, in any place, in any position (she's a flexible pretzel due to the affect NKH has on her muscle tone).  She's moving more and more on her own, pulling herself up to her knees.  We haven't seen Lucy this happy and have not heard her giggle this much, since she was an infant.  It is a GIFT we don't take for granted.  

Happy Day at the Park!

 

Mike and I have counted approximately 30 urinary tract infections, which Lucy has had in her seven short years on earth.  This is heartbreaking to us and, through many tests over the last several years, we know Lucy retains her urine and the retaining is only worsening, instead of getting better.  The medications we've tried have not worked.  Lucy's still often in pain and at times, in her own way, can show/tell us what's hurting.  I know how excruciatingly painful my Intercystial Cystitis can be, and I fully believe that is how Lucy feels, likely even worse.  I can't imagine a child in such pain.

 

Even though Lucy is on Palliative Care, we have decided, with her specialists, it would be best to place a permanent catheter.  Most of the time, surgery wouldn't be done on someone on Hospice or Palliative Care, but we all agree this step is a MUST for keeping Lucy as pain-free and happy as possible. The catheter will allow us to drain Lucy's urine as needed, preventing retention, which in turn, helps to prevent bacteria growth, which in turn, eliminates or limits the amount of infections, which in turn, makes a happy and healthy Lucy Belle!  She will have to go "under" and be placed on a ventilator during the surgery, something we are extremely nervous about, as there is no assurance Lucy will wake up from that state.  We've never chartered this territory before; EK never had bladder issues, so it will be a new learning experience for us all.  Surgery is set for the end of April.  

Thank you for praying.  Thank you for loving.  Thank you for supporting us, in so many ways. We'll keep you posted.

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.