Together

My kids are nearly 13, 11 and 8 and quite honestly, I thought I would have it together by now. The day would tick tock by in its exact 24 hour segments and I would partake of each moment with grace, punctuality, craft and wisdom.  My morning prayer would happen at precisely 5 am and I would welcome a brisk walk at 5:30 with a September fire orange ball rising in the sky to kiss my cheeks good morning.

The morning shower would wash away any hint of dirt as I slipped into crisp, clean linen, while my kids got ready for school all on their own... evenly clad with smiles and uniforms and lunch boxes and LL Bean totes....while I turned on the engine and drove their precious souls off to school.  I would sip coffee as I did what every suburban homemaker does across America..... leaf through Martha Stewart's Living or make curtains for the living room or organize a shelf...or bake an apple pie and have it cooling after I picked them all up from school. They would squeal with delight at the smell of it.  
And etcetera.


Today I made the 13 year old come with me to Costco so he could wheel his 11-year old sister around in the wheel chair while I gathered groceries as fast as humanly possible with the 8 year old balancing on the end of the cart.  It would be a quick trip to pick up essentials. Well, as soon as we took June out of the car, I heard the first warning signal...a slight whimper that said, “I don’t want to be here. This isn’t a good idea.” I had the choice right then to just go home. Maybe I should have...but...we have to eat. And Costco is a 20 minute journey....and that’s an eternity for someone who lives in Norfolk.

So I slung her in the wheel chair and made our way into the store. It started off on the fringe...but with each aisle, the cries grew louder and louder and by the time we were near the musical snowman, my 13 year old was done glancing at me nervously and told me 

We really need to get outta here...

Something we all knew. 

Just a few more items ...we are almost half way through...

I managed.

On to the meat section and I was ignoring people parting the Red Sea for me, eyes forward, like a marching drill Sargent, goal set on the cherry tomatoes.
By the time we got to the frozen section, June was hysterical. I kept handing the 13 year old the keys to the car, and he kept tossing them back claiming that Costco was a prison and there was no way to escape without a receipt....

and I knew he was kinda right.

So we whipped through and grabbed the Cheerios and dog food, and stood in the line.  By now I visibly had old people stopping dead in their tracks and staring...just taking in the show...other people were strolling by casually...clearly checking on the disabled child on aisle 23 whose mother had lost her ever-living mind.

Somehow we rallied and slid through the line at the speed of lightning and headed to the car with all the produce balanced upon boxes balanced upon boxes. The cashier never cares about crying children. That was one plus to this mess.
Got to the car and hefted June into her seat.

And then. Like the last puzzle piece in.
She instantly stopped crying.
As I breathed a sigh of relief, and squinted my eyes at the sun, an old man hobbled toward me, a giant gold cross hanging around his neck. 

Staring at the cross, and with the kindest eyes I had ever seen, I watched him open his mouth:

“We have two grandchildren with autism. And it’s hard.”

I couldn’t believe how those words undid me. And I kind of stood there with my mouth open, pondering the gold cross, the moment, the warmth of the sun...and I could have stayed there for forever.

He could have stopped at the word hard.
And that would have been enough.
That he acknowledged hard.

But instead he asked our names and he told me he was a man of faith and was going to pray for us.

And with that he walked to his car.

And I walked to mine a little straighter, a little more together, and with a brimming cup of extra patience which somehow lasted the evening.  

Sometimes it all comes together.

...but first let's get some clothes on.

Well my last post back in March was so extremely positive, that I thought I needed to bring it around full-circle here in July and tell everyone the honest-to-goodness truth.  Things are SO COVID around here that my 11-year old swims naked in our backyard BIG-kiddie pool most of the day.  My 12-year old thinks it's completely normal to stay up til midnight watching Hogan's Heroes on a Wednesday, and my 8 year old may or may not have published her own you-tube channel in which she gives tips on how to interact with strange children or cute dogs.

If you're like me, the following things have happened:

1. Your vacation gets canceled not once, but twice.
2.  You've googled "counselor who specializes in ________ near me" at least a dozen times.
3. You have bought a giant kiddie pool with a filter for waaaaaaay too much money and you think you're a chemist because it hasn't turned green yet.
4. You visit the grocery store to browse the non-edible section and suddenly containers of all shapes and sizes interest you, along with Crayola’s new metallic markers and floating animal pool toys.
5. You have not ONCE bought lipstick.  Or mascara for that matter.  In fact, you’re positive that your lipstick company is going out of business.
6.  You have at least two bags of library books and DVD's sitting by your door gathering dust and waiting patiently.  They are not talking or bickering.  You actually kind of prefer them to your children.
7.  You have stocked up on gin.  And you are not telling how much.
8.  You have now sold most everything in your house on ebay or Poshmark.
9.  You buy 3 gallons of milk and 3 jars of peanut butter every time you go to the store.
10. Your dog now thinks he is a person. And your chickens think they are dogs.

Tonight we decided we would part-ay!  All 5 of us...And so we suited up, turned on the dub-step, and made our grand entrance into the pool.  It was super warm....I couldn't even tell when I had entered the pool to be honest.  We had so much fun that we didn't even realize our silent child had puked in the pool....or had gotten naked for that matter-which is a normal occurrence....which brings me to the biggest COVID struggle of all...

Our Bug wants to be naked at all times.
And it's hard.  It's not cute anymore. She's 11.  And going through puberty.  And she has things that shouldn't be seen by everybody, everywhere...even in our backyard by the neighbor boys and the cute couple who tolerates our shenanigans just over the fence...

The other day we were swimming at the beach and I was up on the sand chattering with some friends, and here she comes....streaking out of the water in all of her glory for all to see....Fortunately, I have a slew of friends (thank you!) who took action to help charm her back in the water, call me, and search for her bathing suit...One lucky Dad found her bathing suit underneath his toes and graciously tossed it in our direction as an offering of decency...and we were saved once again.  This is not the first or the last time this has happened.  The one pro is it sends us all to mass hysteria and giggles like we are in middle school again. 

June has also become more obsessive, and this has been harder than one would think.  She will climb out of the pool (naked) just so she can move the hose 3 inches to the right, or the toucan float upside-down, or take all the towels and throw them on the ground.  TOWELS AND BATHING SUITS MUST BE ON THE GROUND AT ALL TIMES.  I have stopped cleaning up the back porch, because she has to throw all clothes and all laundry baskets on the ground. So it might as well stay a dumping-ground until I can wash and fold it.  Every door and drawer must be shut. Every light must be turned off.  And she is obsessed with the PEANUT BUTTER.  It goes on everything and if it can't go on everything, when we are not looking, she screws off the top and dips her entire hand in there and digs out a fistful and stuffs it in her mouth like we are not feeding her.  All her toys in her room must be off the shelves and on the floor, but the tub toys must be all in the basket, and the basket must be perfectly lined up against the wall.  She can't leave the bathroom until the toilet lid is shut, the light is off, the stool is lined up perfectly,  all diapers are in the hamper (why? they go in the trash) and the bath mat is in its proper place.

The OCD or the COVID is going to kill me.  I'm just not sure which one.

And when my husband gets home at night, I want him to put the girls to bed.  Because I can't take one more single-solitary OCD action.  I learned tonight in my marriage class that I'm supposed to say "I can't".  So I'm saying it.  I can't.  But maybe it's more that I don't want to.  OCD is so boring, and being naked is sooooo over-rated.  I have to admit I just want normal. And here we are again, because normal ain't happening.  And the truth is, I smile and laugh when people talk about the diaper stage and the poopy smearing, but deep down inside, I want to blurt out all the truths under my tongue that make me a horrible person.  Really, I want to curl up into bed and read myself into my dreams and stay there all night and fast-forward to the fall because....then there will be a schedule...then someone else can deal with the mess yet I have no idea who would feel called to this job, or who would sign up for it...but she signed up!  She's here.  And I wonder when I will lose her because I lose them all eventually...because this isn't a job for the rich and famous.  It's not glorious.  It can be boring, hard and zap you of all your energy reserves to chase around an elf with antics.

 I remember the doctor said to me years ago...."They did this study where they took all the parents in a room who had children with "special needs" and asked the parents which "special need" they would rather handle in a list of "special needs".  Well my doctor said that most of the parents actually picked their child's special need because that's what was familiar and what they knew how to handle.

You know which "special need" I would have picked? I'm embarrassed to say.  Because a gift was entrusted to me, and what I do with it can be destructive or loving...but I don't always choose loving.

Sometimes I destroy.

I am thanking God today that He can refine and purify all the things destroyed in fire. In my fire.

May I love well.
Even during a pandemic.

"Remember that when you leave this Earth, you can take with you nothing that you have received-only what you have given: a full heart, enriched by honest service, love, sacrifice and courage."

-Saint Francis of Assisi

Cape Charles, July 4

Ghosted

I'm kind of at my wits end...I've been looking for an attendant for my daughter for over 6 months now.  That's not really what I'm annoyed about though.  I'm concerned with what is going on with our teenagers and young adults today.  I'm not sure where it started....but I promise if you are a teenager and you read this post, your view on people, cell phones, respect, and common courtesy will change just a little bit.  You might not offend your future employer, and you might even get recommended for another babysitting job when you've respectfully said no to this babysitting offer.  If you are in this camp or have children in this camp, then read on...

I have been trying to hire someone to watch my daughter after school and I typically get one of three responses after an initial texting or messaging conversation.  It usually goes like this:

Teenager or Young adult: Hi!  I'm interested in the job working as your daughter's attendant!
Me: Great!  Can I call you to set up a time to chat about the job?

It is at this point where I lose about 50% of my candidates.  They simply ghost me.

The other 50% of them will respond with their phone number and so I try to call them and talk to them on the phone and have a phone interview. I will only actually reach about 25% of this pool.  Sometimes their message box is full so I will text again and ask them to call me at their convenience.

So for the 25% that I actually talk to on the phone, only about half of them sound alive.  The other half sound like they might be sleeping, dying or distracted....

I'm down to 12%.  They sound wonderful.  They might even claim they are a Christian, volunteer at their local church, have a special needs or language pathology major, have a cousin with autism, or claim to love the pool.  Perfect I think.  So then I tell them I will text them some dates and times to actually come to my home and meet June.  At this point I'm usually slightly optimistic.
At this point also, about half of those people DON'T EVEN RESPOND TO MY TEXT.

I would be happy if, at this point they texted me a simple, "Hi I am so sorry, but I've thought about it and I'm not interested anymore..."  But I don't get that. Instead I am ghosted again.

If this person said no, I could in theory recommend them to another Mom who might need help that they may be a better fit for, but instead because they ghost me, they are labeled as rude, and have completely left my mind. Because they ghosted me, I ghost them back subconsciously.

I am now down to 6%.  The person makes the appointment for the working interview with me and then 50% of the time doesn't even show up.

I am down to 3%.  The person shows up and acts bored, unsure, or doesn't even look June in the eye and say hi.  I get it. Sometimes it's challenging to know how to say hi to her.  I usually give the candidates the benefit of the doubt at this point.  If they show any warmth or interest in the job, then I usually offer them the job and tell them to think about it and get back to me about whether or not they want to take it.

A couple days go by and I usually don't hear anything and so I reach out and ask if they have made a decision and from there I get ghosted again by most of them.

I am down to 1%. There is a rare person, maybe 1 out of 100 who will take the job.  And sometimes...a few of those people actually do an excellent job....going above and beyond, investing in June and making her life more fun, creative and lively.  They love on her and get excited about what she's excited about.  They are not staring at their phone and in another world, a virtual world trying to escape their job.  They see June as a person who also wants to live the fullest life.  They take chances, dive deep and let their hair blow in the wind with her.

In case your teen needs it spelled out:

1. When your employer or prospective employer texts you a question, they are looking for a response, preferably within 12 hours.  And they are hoping your response is the TRUTH.  They don't care if it's bad news, they just want the truth.
2. When you are at your job, any job, please remember that it's time to invest and go above and beyond in your job.  That's how you are noticed.  That's how you get an excellent recommendation, and besides, don't you want to naturally do everything with excellence?  Not mediocrity...
3. Whenever you are going for a job interview for children, please always stoop down, look the child in the eye and introduce yourself: "Hi! I'm______.  What's your name?" Or, in case the child or elderly person can't talk, say "Hi _________! My name is ________. It's so good to meet you!"


Be the 1% friends.
Be better than the 1%.

Baby Tooth and Dog Truths

Tonight my baby lost her first tooth. 

We knew it was coming. 

We were awaiting this moment with bittersweet breath because this was our last first. 

She held it out to us at the dinner table- a trophy of endurance, a peace-offering of sorts as she tried to gobble down her last bit of pizza.

We celebrated with her and sung about how the tooth fairy would fly in and give her a small prize in the middle of the night for her courage, perseverance and determination. 

She held my gaze a bit longer than usual and played along. I think she knew deep down in her little heart there was no tooth fairy, but she asked anyway. 

"Mommy, has anyone ever seen the tooth fairy?"

"Certainly not"  I said.
Because that is the truth.
And I gave her a wink and a hug. 

Something about this moment pronounced her all grown up and I choked down tears as I watched her put her tooth in a baggie for safe-keeping.

What's funny about this tooth is that it didn't want to come out of her mouth. She had two adult teeth that had pushed their way through her gums and were proudly standing behind those baby teeth and just waiting for her to grow up. 

It was taking forever to happen.
And I knew why deep down in my soul.

This baby girl who had sacrificed her whole baby career to be a big kid so I could tend to her older sister wanted to hold on to her baby identity just a little longer...

Hopefully someday she'll forgive me. 

 Two weeks before Christmas I got my kids a dog named Rambo. He came to us looking like a matted mop yet had the sweetest temperament and I just couldn't leave the little scottie there at the shelter. I thought I was getting my kids a pet but what I didn't realize was that I needed a dog-friend much more than they did. 

There is something that happens when you get a dog. Suddenly everything you thought that mattered doesn't matter anymore: like clean floors, clean couches, and manners. And crumbs definitely don't matter anymore.  Because they are licked up and eaten in 2 seconds flat.  

Suddenly you find yourself in the midst of worrying about the hairy dust bunny in the corner...and somehow, magically the pros outweigh the cons and your pup runs and jumps into your lap and you realize right then and there that you are forgiven, 

for now and for then, and for always. 

He never judges you, always sees the best in you, always gives you the benefit of the doubt, is completely loyal, waits patiently for any morsel of affection you can throw his way. And then, he settles down in your lap for a long snuggle and you are forgiven. 

For every last bad deed you have ever done that day, and the days before that, 

and the ones yet to come.  

Charlotte prayed this tonight as she laid her little head down:

Dear Jesus, we hope that you love us more than to the moon and back. And that your love comes to us and our love to you and you bring us salvation. 

I don't pray like that. I'm not sure where she pulls these foundational truths from. 

I am forgiven. For every last bad deed I have done today. 
For forever.
And for always. 

That's it. 

And now I will put on my tooth fairy wings and fly up to the bedroom and reach under my babiest daughter's pillow and give her her heart's desire:

3 gold coins and a piece of chocolate.

And then I will snuggle on the couch with my Rambo. 

And be forgiven.

Normal

The day after school let out I sacrificed my summer to the doctors, therapists, nurses, pharmacists, and counselors of Hampton Roads.

It literally happened over night, in an instant.

And while I can't tell you that story, I can tell you that it's been isolating, lonely, and for an extrovert like me, a game of carefully walking a line and balancing my friends on a tightrope so I don't go crazy.

Today I literally spent 8:15 am  to 3:00 pm dealing with medical or insurance issues.
L-i-t-e-r-a-l-l-y.

I made my kids' lunches while I sat on hold for the 17th time with another doctor's office.
I cursed the answering service under my breath as I smeared the last tablespoon of peanut butter onto an organic wheat piece of bread.
And then I called someone else, held my breath.
And hoped they understood my plea.

I do not cry anymore.  I don't have time to.

The menagerie of bills, toys, artwork and forms on my kitchen counter has become more than embarrassing and tonight I rallied and made some order to the seemingly ending chaos, polishing the black granite shiny with a rag.  I may have rubbed a little too hard, I am not sure.

My attendant asked me today if I like being a stay-at-home mom and I almost choked.
"No," I thought.
 But instead, "I don't love it in the summers," slipped out.

The other day I was walking with my kids, June strapped into her special needs-stroller.
I was at the beach by myself with these little people.  Which is a miracle within itself.
Some guy says, "Aren't you too big for that stroller little girl?"
I looked at him, pursed my lips and let out "Hmmmm."
Because I was contemplating him. And contemplating my life.
Because I didn't have the energy to sock him across the face.
Because he's right.  I have a 9 year old in a stroller.

And sometimes my 10 year old takes care of her as his "chore".
And lately it's been my 6 year old.

I am sorry if you have called me and I have not responded.  I am on auto-pilot.

If you didn't catch it up there, I have run out of peanut butter.  That never happens.

This too, shall pass, but the unfortunately the passing is taking too long.

I told God yesterday "I thought you just wanted my Summer".
And I think He whispered back, " I want all of you."

And as if I thought it was enough to have just one child with special needs, I am coming to the realization that I may have two.  Matter of fact, I am certain my entire family is some kind of special.

I have accepted it.
But I can't move on.

I'm sorta stuck.

I wanted the other family.
The normal family.

God, would you help me love my new normal?

I like you

I shouldn't be writing this.  It's the dead of Winter and everything seems...well, dead, or dying, or sick.  I'm just your average mom in the USA who hasn't left her house much because just when we get done circulating one sickness and I can breathe again, the school nurse calls me and tells me to high-tail it down there to pick up a crying child.  Or, (God bless her), my son's friend's mom called me to tell me my son had puked all over her living room carpet.  And me-well, I don't have time to be sick, but unfortunately, I had to make the time and also unfortunately, my toilets, my sinks, my floors, my drawers and my husband have all noticed as well.  How many times does one become bedridden without becoming depressed?

 I certainly have an appreciation for those of you out there and bedridden and sick for forever.  I'm sorry.  I'm sorry you have to go through this flu, this sickness, this cancer, this old-age thing.  I'm sorry there is not a ray of sunshine shining through your window right now.

Honestly, I've been super thankful for the Olympics, Disney, Adventures in Odyssey, the actual onion-thin pages of the Bible and the creators of This is Us for the last couple months.  Thank you for helping me get through this season.  Oh, and the book, Hillbilly Elegy.  If you haven't read it, you should.  If you like true stories.

Which brings me back to Disney.  And my June-bug.

It all started a couple weeks ago, when, in between sickness, I went to observe June in her classroom.  I usually do this once a year to check out her situation, since she can't really tell me what's going on at school.  Usually she ignores me completely while I sit at the back of the class.  I usually see her happy at circle time, steal a kiss, she wipes it off, then I leave.  I breathe a sigh of relief that things were as good as I had imagined.

Well, this time was different.  Upon entering the classroom, she turned completely around in her chair and stared straight at me.  She kept giggling like the secret was out.  "Guys. My MOM is here.  Can you believe it?"  She kept making eyes at me, and while I was trying to ignore her, I really sat there mesmerized and in disbelief.

She notices me I thought.

She likes me.  LIKES me.  I can't even believe it.  My 8 year old likes me!

I grabbed her little cheeks and looked her in the eyes and said
Mommy sees you.  And I like what you are doing here.  Thank you for having me in your class.  
I love you.
And I walked out of the classroom.
And she didn't follow me.  She sat in her little chair in the circle at the front of the classroom because that's what little third graders do.

A week later I was watching Frozen with my 5 year old. We were both sick and snuggled up on the couch.  All of the sudden June came barreling into the room and squished her body right next to mine and put her hand in mine.  I was startled.
Oh!  You want to actually watch a movie with me?  
Okay....well this has never happened.... 
And she watched the entire second half of the movie with us.
On the couch.
With her hand in my hand.
She kept looking up at me and smiling as if to tell me
Mom I like you.

I know it doesn't seem like much to some of you.  But this is HUGE for our family.  We are not your typical family that sits down and watches a movie together while mom and dad lay there zonked.  It simply doesn't happen because June doesn't care to or doesn't have the attention span for a movie.  And not that she will for every movie, but this is a small window for me into learning that she is growing up just a little, and if we have to watch Frozen once a month as a family, we will.
Because it feels so normal.

This morning my 5 year old handed me a slip of paper.  And I almost cried.

Do you?
Do you really?
Because
In between the
Iloveyous
hugsandkisses
Momineedyous

It sure is nice to be liked.

June's new happy spot.  I like it.

Mutated

A few days ago I stopped by my friend's house to leave her coffee cup on her front porch. It was dinner time and I didn't want to disturb her, but instead, I peeked through the front window all curious to see their very well-organized and peaceful dinner routine.  I know it happens.  I've seen it before.  I've been there when it all comes together like a well-oiled machine.

And there they were.  Four children, half of them tow-haired, sitting tall and quietly partaking of a well-orchestrated family dinner.  Cloth napkins on their laps.  Chewing with mouths closed and using only the utmost manners and no-doubt the perfect, rehearsed prayer beforehand.

Nobody was flailing or reaching across the table to steal water from the flower vase, or reaching to put their hands in the cranberry sauce. Or dumping their plate upside-down.  Nobody's chair was rolling over soggy cheerios.  They talked about the wonderful things about their day with friendly tones and loving gestures, smiling and drawing attention to each other's good character.

I admit I was jealous.  

I have always wished dinner was like that, could be like that.  I dreamed of hands-held, prayers whispered, children chattering on about their day, about the color of the sky, about how amazing the salmon was tonight.

And then I sadly realize:

It's like that after she leaves the table.

The 8 year old.

I hate that I'm saying it, but after we've chased her around 15 times and sat her back at the table 15 times, after she's reached across the table to grab the entire chicken at least 4 times, and after she's gone to the cabinet to get the cheerios and gone into the freezer to put her hands in the ice cream, and after my bless-ed husband has spent the entire dinner spoon-feeding and bribing her with sauces and dips, we then

give her the ipad 

so we can have a moment of peace and finish our dinner like humans.

We might have a chance.  At that point.  To hang on to some sort of family meal.  And so we make them sit there a little longer- the ones who can speak and we force them to tell us about their day even though they want to be gone too....


It was September 23, 2017 and I sat on the corner of Pleasant Avenue and 26th Bay Street with tears streaming down my face (I work here and it's awesome).  It was 9 am and the Geneticist had just called to tell me that they finally had the results from some research that CHOP had done back in 2014.  I couldn't believe we finally had some answers.  I let the diagnosis sink in.

She has an ASXL-3 mutation.
It's rare. It's Bainbridge-Ropers Syndrome.

My husband gave me flowers that night.
We are celebrating knowledge, community and growth.
Knowledge that our daughter has a genetic mutation.
We have joined a very small community online where we are getting support and encouragement.
We are growing in joy and tolerance for our "normal".

Even if our "normal" is slightly mutated.

4 messes

We sat down for dinner tonight-a little too late- and all together for the first time in what seems like ages.  Maybe I've planned Summer that way so I don't ever have to sit down, so we never have down- time, so I never have the deal with the messes.  I can't really be sure.

About two minutes in, the milk goes flying and my 5 year old announces,
 "Well there's the 4th mess of the day: Sloppy, Poopy, Poopy and Milky!"

"Clever" I thought.  I counted them myself.  Was she keeping track? It's like she knew before I even counted them.  Are all my kids keeping track of the messes that happen all day long?

Did you know that just two teaspoons of water beads makes about  565,089,789 full-grown water beads?  I knew this, but let my kids make a dish pan of them anyway.  And since June eats about 20 of them a week, I am pretty sure she tricked us into paying attention to her mouth so she could quickly swipe the dish pan and turn the entire thing upside-down.

I cannot even tell you what that looked like-watching it flip upside-down in almost slow motion. I nearly froze watching the little perfect jello beads boing effortlessly across the floor and land in baskets and shoes and nooks that I never realized I had.  I didn't breathe.  Or move.  Just watched.  And then when it was all over I wanted to cry.  But I didn't.   I trudged on because I am the Mom.  I rounded the troops and gathered the brooms.  You can sort of sweep them, but they are jumpy little devils so you end up picking up most of them one-by-one-by-one.  45 minutes later-

I will spare you the two poo stories.

And then my 9 year old spilled his milk.

I barely

b l i n k e d.

And that was my afternoon and evening after the CAMP.  Which was amazing.  We were the last campers left, watching every single last move the magician made, because I knew when we headed back to the house, messes were likely.

And so begins my Summer as Camp Director at my house.  Love to all you Mamas out there who are doing the same thing at your house this Summer.  Love to all you Mamas who are working your tail off at a job outside of your home while someone else directs Summer.

Trying to embrace it.

Not gonna lie.  It's a bit messy.  My house gets messy.  The bathrooms are extra messy.  I am positive I scream more.  There's always a mess in the sink, a mess in her pants, a mess in my mind and a huge mess in the big boy's room.  Hoping my heart can handle all Summer brings.  God bless this mess.  

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.