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?

What I really want for Mother's Day

It's Mother's Day Eve and I'm racking my brain trying to figure out what we will do tomorrow to commemorate this special event-

the day where I'm supposed to 

rest
eat bon-bons
lie in my bed while my children serve me hand and foot.
get a massage
and a pedicure

And since I am fairly certain that all of this will happen, I will rest well tonight.

So...
DO you want to know a secret?

This is what I really want.  This year. And this year only.

I would like for 
every single person, little and big 
to leave my house for the day so I can

clean the house from top to bottom 
pay the bills and go through the stack of mail sitting on the counter
organize the toys and put them away in bins
wash all the clothes and fold them neatly, rearranging and thinning drawers
scrub the floors until they shine and shimmer

And then do you know what I will do?

I will pull out the chocolate cake that my kids made me yesterday for my birthday and 
sit at the table and eat it all by myself
with not a single hint of an interruption
while I watch everything stay
 EXACTLY WHERE I PUT IT FOR THE REST OF THE DAY.

Because that would be pure bliss right there.
NOTHING MOVES.
FOR AN ENTIRE DAY.

Happy Mother's Day Friends.
May your day be bright and beautiful!


Proverbs 31:10-31 The Message 

A good woman is hard to find,
    and worth far more than diamonds.
Her husband trusts her without reserve,
    and never has reason to regret it.
Never spiteful, she treats him generously
    all her life long.

She shops around for the best yarns and cottons,
    and enjoys knitting and sewing.
She’s like a trading ship that sails to faraway places
    and brings back exotic surprises.

She’s up before dawn, preparing breakfast
    for her family and organizing her day.
She looks over a field and buys it,
    then, with money she’s put aside, plants a garden.
First thing in the morning, she dresses for work,
    rolls up her sleeves, eager to get started.
She senses the worth of her work,
    is in no hurry to call it quits for the day.

She’s skilled in the crafts of home and hearth,
    diligent in homemaking.
She’s quick to assist anyone in need,
    reaches out to help the poor.

She doesn’t worry about her family when it snows;
    their winter clothes are all mended and ready to wear.
She makes her own clothing,
    and dresses in colorful linens and silks.
Her husband is greatly respected
    when he deliberates with the city fathers.
She designs gowns and sells them,
    brings the sweaters she knits to the dress shops.
Her clothes are well-made and elegant,
    and she always faces tomorrow with a smile.

When she speaks she has something worthwhile to say,
    and she always says it kindly.
She keeps an eye on everyone in her household,
    and keeps them all busy and productive.
Her children respect and bless her;
    her husband joins in with words of praise:
“Many women have done wonderful things,
    but you’ve outclassed them all!”

Charm can mislead and beauty soon fades.
    The woman to be admired and praised
    is the woman who lives in the Fear-of-God.
Give her everything she deserves!
    Festoon her life with praises!

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.

When somebody gives you a car

Last night our friends came over for dinner and looked a little suspicious.  

Or maybe I'm remembering it that way.

They slinked in and giggled, throwing wide their arms and giving us bigger hugs than usual.

It felt good to see them.

And then they threw some keys on the counter.

Noticing they were Honda Odyssey keys, I gasped,

"OHHHHHH you found my spare set of keys!!"

They said,

"No actually.  These are your NEW car keys."

Ummm. Did I hear them right? 

My husband and I stopped mid-sentence and looked into their eyes.

Speechless.

Not really sure what to say except cry.

They said,

"We prayed about it and we felt like we were supposed to give you our van."

We melted.

How exactly, did we end up with such good friends?

And how did they fore-know we needed a car?

And how in the world do you give someone something like that?

They must love us way more than we thought. 

And they must also know us well.

Well enough to know we would humbly accept their blessing and be thrilled to pieces.

Even if we weren't showing it that second because we stood before them in

Utter Shock.

Saying "thank you" felt so small.

I'm telling you this story because we were blessed this weekend in a way that we will never forget.

NEVER EVER.

And it made us re-evaluate everything.

They told us it was God's gift to us.

Indeed.

They don't know it, but they are the gift.

Love them.

Who in the world can I bless today?

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.  

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.