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

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.