Dragon truths

It was the dead winter one day in January and my baby decided she wanted a DRAGON birthday come SPRING.  Well I nodded and smiled like most moms do when their kids talk about birthday parties.  Themes change like the wind around here-so I was expecting her to come around to a pink princess or unicorn theme any minute.

You see-
Dragons are fierce.  They are determined to be HEARD.
They are often loud and there is never any question about exactly what they want.
A dragon is often caught singing her joyous heart out.

Dragons happen to be super friendly and know how to handle large crowds. They have an easy way about them, a hospitable spirit and usually a team of followers.

Dragons love family and tend to count their members often,
making sure they are all around and present at breakfast,
the dinner hour and bed-time, praying long and sweet prayers 
of  thanksgiving for them.

Dragons fly.
We were in fact trying to capture one today and
before we could nab its legs, it most certainly lifted off into the sky,
all of us half-happy it was set free.






Dragons wait patiently for celebrations.  And then party hard all day, even on into the night, rarely stopping for anything except water and chocolate cake.

Happy 5th birthday, my baby dragon.  
May your year be bold.
May your song be fierce.
May your heart beat strong 
for all things true.

Walk away

The day started early like it normally does.  I was up at 6, tip-toeing around the house getting ready, frying up my eggs, packing my bags.  I was even more quiet than usual because I knew not to wake up my June-bug quite yet.  Little did she know she was on her way to getting six teeth extracted at the hospital and she wasn't going to eat her fancy breakfast this morning.

As quick as a blink I got her ready, whisked her downstairs, avoiding the kitchen, hoping she wouldn't notice the pantry when she broke down in tears and collapsed on the floor because she couldn't have her bless-ed honey nut cheerios.  I kissed her, smoothed her tears away, told her we were going to see a doctor, buckled her up as she was thrashing and protesting. 
Over and over between prayers, I chanted, 
"Katie just drive the five minutes to the hospital.  
You know she'll do better once she's there."

And I was right of course,  because CHKD sure knows how to make everyone feel all cheery at 7:30 in the morning with their bright lights, bold colors, see-through elevators and swishy fish.

Well I wasn't really prepared for all that was to take place. 
My heart, that is, wasn't prepared.  I really didn't think it was that big of deal.  
She's going under.  
And getting 6 teeth extracted. 
And 3 sealants and a flouride treatment.  
2 hours of recovery.
And then we will be on our way.

I'll even get a coffee at Starbucks.  It will go fine.

So we stripped her down, put on some adorable mini-scrubs and set her up with an ipad and waited...and waited some more.

Then they came in and explained everything and asked if she needed a sedative before they walked her down the hall and I rattled off, 

"No thanks-she doesn't have stranger anxiety."

And then they held her hand and took her away.
Just like that.

I watched her walk the super long walk down the hall. I just sort of froze there by the patient family waiting room.  She walked like a big girl with all the grace and confidence in the world.

Walked through two double doors.
By the nurse's station.
And as she walked through the second set of double doors my eyes welled up with tears and I stood there in a puddle.
Watched as she vanished around the corner.

"Are you going to turn around and look back at me?"  I thought.

I'm probably the only mother in the world who watches her daughter walk a hundred steps just because she's walking.

I gathered myself and went downstairs, grabbed a coffee, came back up and rounded the corner and there she was-

A mother.  Standing in the same spot I was, watching her little one walk the walk.
Tears streaming down her face.
I smiled bittersweetly and said, "Yeah-I just did the exact same thing."

And then it hit me like a ton of bricks as I sat down.
I wasn't expecting tears and I started thinking about why it was that I was crying.
Was I scared? No.
Was there an unknown outcome? Not really.
Was June going to be in pain? Probably not.

I was crying because I was watching her walk all by herself.  
Down the longest hallway I had ever seen.  
I was crying because I knew she wanted to tell me something but couldn't.  
I was crying because I was wondering if I let her go and let her keep walking, 

WOULD SHE JUST WALK AWAY?

Walk away.

Wander away to the the glimmering sea where the dolphins play and the mermaids swim.
Where the sun is hot
And the waves pound your flesh against the soft white sand.

Does she know who loves her?
Does she care about our home and everything we do to make her comfortable and safe?
Would she miss us if she got lost?
Would she smile if we found her?

And I didn't know.

And I don't know.
Would she just walk away?

January snowstorm 

Maybe the question is-
Would she come back to find us?

9

Brother, it's your birthday.
And I try not to think about it too much because I could cry thinking about the boy you've become.

Nine years ago in the wee hours of the morning you came into this world at the very last possible second.  You took forever to make your grand entrance because maybe you knew somehow in the depths of your being that you needed just a little more time where it was safe and silent and good.  Because, after all, your world was about to begin and you would have a bigger job than I could ever imagine.  The job of becoming the most

independent
selfless
sensitive
caring
energetic

brother around town.

It was you and me for 18 months.  And we laughed, and went to the library, strolled at the park, touched flowers, rocks and rivers, played with wooden toys, read 10 books a day and frolicked at the beach.  Neither of us really knew deep down inside how our world was about to change.

And change it did.

My dear James, you rose to the occasion.  And I know it was a long road to get there.  I know you had years where maybe you were slightly ignored, angry, depressed and even brushed aside.
It was hard.

But I love you just the same and year after year I see that your heart is flung open wide for us to come along side you and answer your deep questions, aid you as you care for the underdog, and support you as you follow your dreams.  And I wouldn't say this to any kid, but YOU my dear, have been given the character, the determination, the set of skills, and the drive to be just about anything you want-

So-
Chase hard after God.
Love deeply.
Apologize without guilt.
Be empathetic.
Care for the underdog.
Whisper kind words to those who are angry.

Actually, maybe you should tell me to do these things.

I love you baby.






 

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.