When peace doesn't flood your veins

Well I have to admit I'm sad.  So sad for June bug.  And I would get close to her face and whisper in her ear but she won't let me.  Last night I tucked her in bed, like I've done for seven years and whispered a prayer close to her face as she was shutting her eyes in her medicated way.., and for the FIRST time ever, she reached out and grabbed my face, clawing at my eyes and my forehead, leaving a scratch, a scratch that says,
"Something is wrong. Get away from me. Leave me alone or help me."

So what does one do?  For the child who has been mute and sleepless, clawing, pinching friends, sisters, and teachers during the day, almost laughing, as if no conscience, as if no mind. 
I do not know.

Except start again.  Back to the basics.  Where she was once good and partially happy.

So we are back here dancing with the medication game, where we do not know whether medication is necessary or helpful, or evil, or a cover-up.  We want her free to roam, free to be curious, not a drugged zombie with partial rights, partial sounds, tainted movements.  I can assure you we hate it.  The medication game.  I'm so desperate I ordered the ever-so-controversial Charlotte's Web hemp oil.  Maybe you will be calm.  Maybe you will rest your flailing limbs.  Maybe you will learn to say "Mama".  Maybe, just maybe you will sleep through a night without waking up half-way through searching for something sensational, extraordinary, other-worldly, angelic. 

Come back to us June bug.  While I"m packing our bags for our vacation to Kentucky, come back.  I wish I knew what you were upset about, why you are crying, clawing at my eyes, hitting yourself, pinching your caretakers.  Show us what you need.  We love you.  The God of the Universe loves you. And He knows your needs.  This is the one truth I take and put deep deep in my pocket.  So I can reach in and pull it out at 2 am in the middle of the night when I'm stumbling to your bedside, and at dinner when the bewitching hour comes and tries to steal our joy, and when you reach out and grab my face a little too hard just before you close your eyes in a deep, medicated trance.

Lord Jesus bring balance to this precious girl's system.  Heaven come to Earth.

Refresh

We just got back from a Joni and Friends Family Retreat and I admit I'm having a little trouble re-entering the world.  I knew this would happen-it happened last time, but I signed us up again and we went through with it-this time where heaven would come to earth, where the people of God gathered to show each other an unconditional love like no other.

I was overwhelmed with emotion from the second we arrived at Bonclarken in beautiful Flat Rock, NC.  When we got out of our car to register, they called and cheered for us by name with signs and hoots and hollers and I stammered the way to the registration desk, my eyes filling with tears, barely creaking out my last name.

I kept telling myself,
"Katie-get it together.  You've just arrived.  Stop it with the tears".

Tears came anyway-at various times during the week.  I've been trying to process why, exactly-but maybe it was just because I couldn't believe that someone would give up a week of their summer to follow our family around all week so we could have a fabulous time. 

Or maybe it was that (actual) humans were having fun and being blessed by my daughter June-and I didn't have to pay them anything to watch her.

Somehow June was a blessing to others. 
Instead of a nuisance. Instead of a curse. Instead sucking the life right out of me.

I could see people loving her, for real.

Our children's three buddies (or "short term missionaries") were gifts from God and perfect matches for each one.

Charlotte and Carol

James and Libby

Sometimes I would catch Heidi (June's STM), staring at June with awe and wonder, like she was the most beautiful person she had ever seen. This moved me in ways that I can't express.  These moments are rare.  I can count on my one hand how many times this has happened in her life. 

It took me two years just to love my daughter, so how can someone who just met her feel an instant bond?  I have no earthly idea.

June with Heidi

June at her "Quiet Program"

Daddy and June going for a ride

Perfect rainy porch afternoon

James climbing with his friend Ian

A little archery

How many horse rides did she take?

You know how when you come back from a vacation, you need a rest from your vacation?
Well, that didn't happen this time.  Sure, things were a bit hard, the packing, the trip, the pottying issues, the normal "hard part" about a vacation with kids with special needs.

But something happened on that trip that made me love my family with a greater love.  I felt encouraged, refreshed, built up and sent out into the world because of the people in this community. 

Why can't it always be like this-this perfect blend of disabled and non-disabled living in harmony with one another and taking the load off for a family that desperately needs not only physical respite, but also emotional respite?  Respite that says, "I'll be Jesus to your family for the week." Respite that says, "I don't care if your daughter is shrieking with glee while I'm preaching, repeating what I'm saying, sitting on my lap, spitting on my lap, licking my arm, or pulling the ice out of my drink." 

My spirit feels refreshed because some dear strangers decided to refresh it, to follow the call of God and take a chance on a worn-down family.  These same dear strangers now feel like they are family- family that lives a million miles away- but they are so close in spirit that sometimes I think they are still in the next room holding my child's hand, whispering words of love, or singing songs of hope.

Mommy and James prepping for the zip-line climb

 A shout out to Joni and Friends Charlotte!
You have rocked our world and there is no other "vacation" we would rather take. 

The Sensational 7th

Dear Iva June,

Whew!

It's time to clear the air-
Literally.

That last post wasn't really fair to you, was it?
You are much more beautiful than that.
And really-you couldn't have told me you don't like that picture of yourself
because you can't.

And so, I am asking you for forgiveness, BUT,
I won't take down the picture.
Because it serves as a reminder to us of where we have come 
and where we are going.
Both of us.

Because we're both on this journey-
You to speak.
And me to speak less.
You to lead.

And me to be patient.

And that's really hard for me June bug-to be patient.
Like REALLY hard.

But here we are...another year into it-
And today I celebrate YOU!

It's your birthday and you are SEVEN!
So you needed something kind of SENSATIONAL!

Pool filled with Water balloons, squishie balls, body foam and bath bomb

Water table filled with colored cool whip, frozen blueberries, pop rocks and cotton candy

Maybe heaven?

Layered ice cream trifle

Because only something cold would do for the birthday girl

Sweet Girl,

May your year be full of sunshine, shiny balloons, splashing waters, sweet watermelon, sprinklers, laughter, bathing suits, honey nut cheerios and popsicles.

And may you know just
how high,
how wide,
how deep
is the Father's love for you.

Birthday present: Kryptonite body suit

Sometimes you are done.
You are done
screaming
jerking
swearing

You are done with this situation.
You would do whatever it takes to make it go away.

And so it happens again and you really know you are done because
all of a sudden
you are watching yourself do what you thought you could never do.

It is an out-of-body experience.
A gift from God, really.

You breathe in, and somehow-

calmly
patiently
efficiently

you get it done.

It is not you.

Finally, it happened for me.
Tonight it happened.

It was the LAST straw.
But the FIRST time I could actually love her through this moment.
It was the last time I would find my nearly-7 year old covered with feces smeared all over her body.
And scream with disgust.

For the 187th time-
I cleaned up the mess and scrubbed her little body with grace.
It wasn't me scrubbing.
I was watching myself scrubbing.

As much as I love this girl, I hate this habit.
And so I had to show you.
So you can pray for me.
I'm even okay with you feeling bad for me.
And honestly I can't believe I'm showing you this picture.

And so,
this precious girl, who turns 7 on Monday
is not getting Princess clothes
and Barbie dolls
and Pretty Ponies for her birthday on June 6.

She is getting a backwards-zipping full-length Kryptonite Body Suit.
Maybe she is even getting 7 of them.
Because she is turning 7.

Shortcake is the answer

Yesterday I drove around in sort of a haze.  I decided at 8 am I would head to the strawberry fields with my four year old and pick juicy, sweet strawberries.  We mucked on our boots and headed out the door....filled our baskets with heaven and rain and ran for the car.

And then the day continued...I firmed up summer therapy plans for my 6 year old over the phone,  met some friends at Chick-fil-a for lunch, filled our bellies with goodness and drove home, taking sips of coffee and filtered water all day long.  I went to the grocery store and picked up some staples, zipped over to get my 8 year old from his very expensive private school and then ran back home to throw together salmon, rice, kale and strawberry salad and shortcake.

And then it hit me like a ton of bricks.

Somehow, I am privileged. I am the lucky one at the front of the line.

SOMEHOW-while my children are gorging themselves on strawberries and cream,
 there are children aound the world
DYING of starvation
EVERY 3 SECONDS.

And this weekend when my sump pump and hot water suddenly bit the dust, and my kids were screaming in pain with the fire of strep....SOMEHOW, I was the lucky one who got to go to the doctor and get this amazing bubble gum medicine that cures.  SOMEHOW, I was able to make it through an agonizing 24 hours without hot water while there are still 1 in 10 people in the world who can't even find a single drop of clean drinking water.

And how did I become so lucky that I get to drive around in a mini van all day
with the 7% of people in the world who actually own a car?

Making phone calls and pulling out plastic money-
Buying things off of Amazon Prime and getting them delivered to my door in 2 hours--

I'm not going to lie.
This is the hardest job I've ever had.
I'm kind of forever and around-the-clock in charge, wiping every sniffle, butt and  spill.
Guarding every word, managing every expectation, dream and never tuning out or fully turning in.
Carefully timing ipad obsessions, time-outs and minutes to bed time and moments til wake time.

But today I feel unbelievably blessed.
And I surely don't deserve all this I know.
Thank you God.
We are convinced of  your goodness.
We are convinced of our need to give.

She spat on the TV

I was supposed to write a Christmas post, and a New Year's post, right? That's what bloggers do....but I've been stuck.  Mostly because I feel so negative. People ask me all the time....how is June? And it's such a hard question to answer.  The truth is she's making progress every week.  And the truth is I'm rejoicing with the progress, but with every bit of progress comes the harsh reality that I have just created more work for myself.  In some ways it was easier to tote her around in a baby carrier and let her be mute and in-mobile.  At least she was safe then. And cuddled.  And fed. And happy. 

Now I just follow her around and my goal for the day is that she eats enough (food, not dirt) to put some fat on her skinny little bones, re-direct (or try not to scream at) her when she gags herself, take away toys when she spits on them, praise her when she goes poop on the potty, and make sure she doesn't eat anything poisonous or steal too much water from the faucets, because that leads to puking, and then the vicious cycle continues.  And if it's a good day, I will force myself to be an amazing mom.  The mom that sits and asks for her to make a choice, following her around and letting her do what she wants: hang out on the trampoline, contemplate electrical and shiny gadgets, force her to do puzzles and other learning activities, provide messy opportunities where she can squish applesauce and pumpkin guts or massage olive oil into her tiny little hands until she giggles and til her heart is indeed, content.

But then something like this happens.

June broke our brand new TV.  Now let me just tell you.  We had just purchased a flat screen TV last year.  Our FIRST ever flat screen TV, and with an Amazon Prime membership, our kids thought they were at Disney World with all the shows they could watch besides PBS KIDS.  Now listen, I am a TV Nazi.  My kids get an hour of screen time a day, if that, HOWEVER, it was still nice to be able to pick a new show DAILY.  Well all that ended on Sunday afternoon when June decided to SPIT on the TV.  Yes, you heard me right.  She spit on the TV like she spits on everything because that is what June does.  The way June spits is more like a drool....Now, let me warn you.
 DO NOT EVER LET YOUR CHILD SPIT ON THE TV. Because the spit runs down the screen and into the electrical compartment and then the TV goes bonkers.  Like...a demon enters the TV and the channels start changing rapidly and the volume starts rising higher and higher at random times.  So good thing my husband is a pack rat because he went out and got the OLD TV and when my kids started watching a a heart-wrenching PBS special on special needs today with sad music and all, I told them they would have to settle for the Stuart Little 3 Christmas DVD because I couldn't bare to sit through another special needs special.

June also is also becoming a little bit obsessive...like, if I take the dish towel off the oven to wipe up something (usually her spit or puke), I usually throw it in the corner to head out to the laundry room.  Well, little Miss Organization (oh the things she would organize if her hands would do what she wanted them to!) will take the towel off the ground and either put it back on the oven bar OR try to grab my hand to get me to do the same thing.  She's also obsessed with this Fisher Price Beatbo that she received for Christmas from her grandparents.  Here she is with her magnifying glass and her hand on the robot.  It's her morning routine to come into our bed every morning and snuggle with Daddy and listen to the Robot. We cannot break the morning routine. 

Some other strange occurrences our happening in our house.  Charlotte is having a hard time acting her age because she is confused as to how one acts at the age of 3.  After all, her older sister is doing things like chewing on a chew toy.  Here they are, in sisterly love both bonding as they chew on a toy together.  Every mother's dream....two daughters sharing.

 So...hope you are drinking a hot coffee like me and hunkering down for a big snowstorm, stocking up on milk, eggs and marshmallows for the hot chocolate.  Have a blessed weekend, whatever storm comes your way.  And just in case you feel like your Winter is especially long this year:

" For though the fig tree doesn't flourish, nor fruit be in the vines; the labor of the olive fails, the fields yield no food, the flocks are cut off from the fold, and there is no herd in the stalls: yet I will rejoice in the LORD. I will be joyful in the God of my salvation! The LORD, the Lord, is my strength. He makes my feet like deer's feet, and enables me to go in high places." Habakkuk 3:17-19

Sticky Saturday

Saturdays are hard.  I'm not gonna lie.  Every time the bus driver drops June off on Fridays, I smile and take June's hand.  He smiles, and says, aren't you glad it's Friday?  I smile and say yes.  But it's not the truth.  I'm actually cringing inside because the weekend is coming and that's when I break my back the most.  That's when I yell the most.  That's when I don't really know what to do with my days, because the routine is missing.  That's when I have to stop June from gagging herself and puking about 150 times. I spend the day re-directing hands, managing expectations and wishing I could clean the bathroom, or at least fold laundry.  My family doesn't know what to do with me and I don't know what to do with them.  Tempers run short.  Days run long and for some reason I feel like everyone's happiness rides on me. Well today had happiness built into it, so there was an easy rhythm to our afternoon that was better than average. 

It was Halloween and also time to carve our almost-rotting pumpkins.  As much as I don't look forward to this event, I knew that it meant fun for the kids and and it especially meant that June would get in a lot of messy, goopy play and PERHAPS, wouldn't spend the night gagging herself while we were out trick-or-treating. Consequently,  June ate MOST of the pulp and seeds in her pumpkin, but when your child is usually eating dirt and poop, raw pumpkin pulp actually seems like an upgrade, so you let her. 

 

The night ended with some good old fashioned fun and trudging around the neighborhood.  I will say that I am emotionally exhausted from refusing Resee's PB cups at least a dozen times, but other than that my little butterfly did very well asserting herself at people's doorways and keeping up with the big kids. She has her Mama's blood running through her veins because she was very concerned that I was eating her candy and, at one point, started giving it to her Daddy to hold, because I was suspect.  I really don't blame her.  

My little June bug spent most of her time in the wagon where she gazed at the super-cool skull light the neighbor gave her until the batteries wore out.  She then wrapped herself in a coccoon in the wagon, begged for smarties and deeply mourned the fact that we could not take the fortune teller's ball with us.  Her mourning continued through her bath, and into bedtime where we are still not sure if she was crying from lack of owning a fortune teller's ball or from an upset stomach due to ingesting too much raw pumpkin pulp.  

My big boy baseball player declared that he had enough candy by 7:15 and that we should head home now. This, of course was music to our ears and we basically sprinted the way back to the homestead, only stopping to listen to our elderly neighbors play a shanty on a guitar and accordian.  

Sweet dreams, to the children across America who are going to bed with full gummy tummies, sticky fingers, and chocolate cheeks. 

We promise to bathe you before church in the morning.