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.

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?