where we are


Half-finished posts litter my Draft Folder.

I’d love to finish them – or even any one of them – but my estranged friends, Time and Focus haven’t met up in a while around these parts.

We’re too busy swimming upstream in this here river of complete and utter dysregulation.

And well, we’ve been a little busy.

There was Earl. And then there wasn’t really much of Earl at all.

There was the decision to leave Nantucket, followed by the decision to stay. Then to leave. No, definitely to stay.

There was a child with a fever. Then another.

There was packing up early, then unpacking. Then packing again.

There was a little girl whose world was upside down. And a mom who was trying desperately to make her feel OK.

There was a boat ride home that conjured up Dante’s third ring of Hell.

There was one child vomiting as the boat rolled through the chop. Then another.

There was an early morning trip to the ER. (All was fine.)

There was the anticipation of today, the first day of the new school year.

There was a shopping list. A long one. A very, very specific long one.

There was a new dress for school. Then another. Then Mama figuring out how to fix (yes, SEW!) the too long straps on the one that Katie HAD to wear this morning.

There was dysregulation. Lots of it. I love that word. Know why? Cause it doesn’t even feel right when you write it. Or read it. The ‘y’ feels like it should be an ‘i’, doesn’t it? Which is just so right. You know, cause it feels wrong. Right?

My girl is all over the place. She hasn’t stopped moving. Or talking. Except when she was sick. Then she was heartbreakingly still. But now – now she moves. And talks. She is a running narrator, recalling every script from every book, movie and show she’s ever seen. Plus those of her own invention. Yes, those are just as big.

We play our parts. We try to help her find the comfort, the sameness, the predictability she so obviously craves this time of year.

We read our social story. We look at the pictures of the classroom, the teacher, the aides. She wants to see the picture of the cubbies again. She reads the names on the cubbies again and again. “Those are the second graders, like me.” “Yes, baby, they are.”

“The firefighters won’t come,” she says over and over and over again. I curse that damned fire alarm last year. I’ve called the Inclusion Specialist to remind her that she needs notice of fire drills so that the aide can get my baby out before they start.

One of the cubbies in the photo belongs to a little girl named Chloe*. Brooke looks at the cubby again and again.

“She’s just like the Chloe that died,” she says. “The Chloe that died is in my class,” she says.

Long before my children got to our school, a little girl named Chloe passed away. The community planted a garden in her memory. My girls love Chloe’s garden. Katie says that Chloe is in Heaven with all of the pets that we know that have passed on. And she plays with them in her garden in Heaven.

“Oh, honey, this a different Chloe.” I try to explain. I tell her that we don’t talk about that with this Chloe, OK? I picture her walking in today and saying, “You’re just like the Chloe that died. But you’re a different Chloe.” My heart aches on too many levels to process.

I could write for days – about the grey haze of anxiety and the hope that so valiantly persists through it. About the breakthroughs in speech and the emergence of questions – glorious questions – that we’ve seen this week. About the fear. The fear of the future, the unknown, the widening gaps.

But I’m out of time for now.

It’s time to get ready for school.

20 thoughts on “where we are

  1. Here’s to a year of progress and of little to no regression. To happy firsts. To acceptance and love. To hope and joy.

    For all of us Mamas and Daddies and our kids who are fighting the good fight.


  2. DOAM my heart aches for you on so many levels its difficult for me to write all the reasons why. Suffice to say, I have been where you are today, sans Chole, and it is with the help of my friends and the Grace of God that things will get better and this too shall pass. I will think of you often today and say a prayer that everything goes okay. Xo

  3. I wish you all a wonderful and positive school year. Each “new” school year is another opportunity to change what you didn’t like about the last one and to work to improve what was good. Beginnings are scary but also exciting.
    I hope for only the best for you and yours.
    Love you,

  4. Oof. The details and manifestations of the anxieties are different, but the underlying feelings are the same in our house right now. It’s so difficult to ride out the storm and see where the current takes us, isn’t it? I have to believe that the waters will become calm again and the sun will shine, birds will sing. There *might* even be the occasional rainbow or unicorn. 😉 But for now, just remember that the boat is bigger than it feels and we’re all in this together. Reach out and hold our hands, k? xo

    Great, now I just put the theme from Poseidon Adventure in my head. Good thing I like Maureen McGovern! Earworm anyone? http://s0.ilike.com/play#Maureen+McGovern:The+Morning+After+(Single+Version):98825663:m3863013

  5. You know what I love about Katie? That all of the feelings we all have at this time of year are all out there – there’s no repression.

    That said,

    It’s so hard for all of you. For her.

    Keep the routine. Stay the course. Rinse and repeat.

    I feel you, sister. I so feel you.

  6. Good thoughts coming your way for today, this week and this year! I hope you and Brooke find a more “regulated” place that brings you both peace. Good luck today. xoxo!

  7. Clearly I needed my children to return to school today primarily so I can catch up on your posts… In many ways September is my true “new year”, a feeling I will probably never get over as it harkens back to my teaching days. I always feel a renewal of hope in the fall, try to appreciate the progress made, anticipate the challenges ahead. Your girls have shown so much growth this summer, and I’m wishing you minimal bumps in the road (I think it’s your turn!) and a maximum return of accomplishments. Best of luck this fall, and enjoy some “Jess time!”

  8. Hoping and praying that this day of school will be the first of many wonderful, fruitful days. We start a new school tomorrow and Bells is very excited!

  9. Happy School Year (so much more exciting and scary than Happy New Year!)

    I think I may have forgotten to breathe that first morning two weeks ago, but now that I have finally exhaled, all is right with the world (or as right as it gets). Remember to breathe 🙂

  10. Hope and love, Sweetheart! It’s all going to come together for all of you. Each new year has shown wonderful growth. I can’t wait to see pictures.

    I hope it’s a wonderful year for all of your incredible readers!

    I love you.


  11. (((Hugs))) and Blessings to all. I will ask the same prayer for Brooke that I pray for my kids each year. May God grant her teachers wisdom and patience; and may God grant Brooke an open mind and heart.

  12. So my day starts with anxiety as well as excitement for my children on their first day back to school. As I leave school my son is eating his backpack straps, chewing on his shirt, yet smiling through all the anxiety. I’ve made sure to speak to his teacher, his aide, his classmates, reassured him that I would see him after school, etc. All the things all of us do to try to help ease our children through another transition. All is well, THEN I get to work. I work in a prenatal setting and my first patient is there for her screening and ultrasound. In taking her history she tells me her daughter is “crazy, really nuts, you know”. Actually her daughter has Tourette syndrome. I clarify that Tourette is a neurological condition, NOT that she’s crazy. This gets worse….she has an uncle who is a “retard” and a cousin with that “sensitive thing when the kids act all weird and stuff”. You guessed it: Autism. As you can all imagine, I wanted to reach across my desk and slap this woman’s face. She also has another daughter with “anger management problems”. Do you think that might have to do with that you are a crappy mother and a horrible insensitive person? Here I am sitting here after preparing my son as best as possible for another school year. After saying a prayer last night and this morning and every day that he has a good year, that he makes friends, that the teasing doesn’t get too bad in 4th grade and my patient is calling her own daughter Crazy. It was not a good start to my day. Sorry, but I wanted to vent.

    • you showed incredible restraint! I may have flown across the desk at her and quite possibly loosened a few teeth. She sounds very uneducated so we can only have pity for the daughters. Hopefully they will learn compassion from somewhere else.

  13. “There was dysregulation. Lots of it. I love that word. Know why? Cause it doesn’t even feel right when you write it. Or read it. The ‘y’ feels like it should be an ‘i’, doesn’t it? Which is just so right. You know, cause it feels wrong. Right?”

    Perfect, so very perfect.
    Hang in there, we all will make it….(puffing my chest out and feigning courage)

  14. It’s weird. We live on opposite coasts, have totally different careers, homes, lives, everything. Your youngest, a girl, and my oldest, a boy, share a diagnosis that looks totally different on the surface.
    Friend, given how little we have in common, I ask you:
    How do we have such parallel lives?
    Sending very big wishes for a good school year! And a hug.
    We are right there with you, in so many ways.

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