Wednesday, January 31, 2018


Tessie had a rough day yesterday.

She has a fever and some sort of a respiratory thing, that would be a lot more scary if she wasn't on her monitor whenever she's asleep, so that I can see that her numbers have been beautiful, even when she's stuffy and coughing.

But the stuffiness has made for one sad little baby.  

She climbed her way sadly around the house on Tuesday (even sickness doesn't discourage her love of climbing), but no one could cheer her up until the school bus arrived.  

And then Sadie walked through the door.

She wasn't instantly happy.

But it was pretty close:

Her big sister had missed her too.

And that smile made Sadie's day too

And my day.  Their smiles totally made my day too.

Monday, January 29, 2018

Tessie Testing Update

Today was quite the day and quite a few prayers were answered as things began to fall into place, in the most perfect order I could have possibly imagined.

This was a huge relief:

Now if she would just kick this fever/respiratory thing she has going on, that would be wonderful!

Saturday, January 27, 2018

Maggie and Tessie and the Things I am Learning

I've begun to think that Maggie has decided to take Tessie on as her protege.

I'm not sure if it began before or after we told Maggie that Tessie had autism, but I can tell you that when we told her that Tessie is also on the spectrum, and that someday soon(ish) Tessie would be going to the therapy center with her, Maggie's face lit up and she beamed at me, with the hugest smile.  She was pretty excited about the idea of Tessie being at "Mermaid School" alongside her someday.

After that I began to notice that Maggie, who's always loved the babies, was now especially interested in Tessie and had begun to walk around the house singing to herself "Baby Tessie, Baby Tessie, Baby Tessie."

On Wednesday Maggie was home sick from school, and really got to see Tessie in action and it was somewhat hilarious to watch her reactions to Tessie's antics.

If you've been reading this blog long, you may remember when Maggie was Tessie's age, and basically developed into a mini force of nature, climbing every surface she encountered and testing every limitation and just about driving me insane trying to keep her safely in one piece and unharmed.

Maggie, when she was a little younger than Tess.  And much blonder than she is now.
This week Tessie appears to have quite suddenly reached that same point of development.

Both Tessie and Maggie have extremely good gross and rather good fine motor skills when they're toddlers.

My first clue that Tessie had reached the Adventure Stage was when James began walking around the house muttering "that baby is a trouble maker." 

He meant, that she had begun to scale every surface and was always reaching up and up and up for another hand hold, which I had also taken notice of.

Maggie at the beginning of her action/adventure stage.  Which is ongoing.
When Tessie was a newborn and we were in the hospital and she kept fussing and turning away from me and was unable to settle as long as I was holding her, I would cuddle her quickly and kiss her head and put her down and she would sigh and fall immediately asleep and I remember that I kept thinking to myself "this is as easy as it is going to be for a very long time" (although it was not all that easy at all, knowing the challenges that she would face and feeling rather helpless with that knowing and also knowing that it would be a while before anyone would believe me because you can't know that early, that's insane) and this stage right now is exactly the stage that I was thinking about being rather difficult.

Which is almost silly because I know that there are many ways for life to be difficult but I think it because this was the time before we had answers with Maggie and so this was the time that stands out in my mind as so baffling and confusing and intense.

But I didn't realize that that lack of answers, is exactly what the biggest part of the problem was, when Maggie was this age. We hadn't known.  With Tessie, we do.

And that makes all the difference in the world.

This time around it has been easier because we've been here before.  I've already been Maggie's mom and while Tessie isn't Maggie, two year old Maggie (and years of training and reading and learnin and sitting in therapy sessions) gave me some serious parenting skills that I did not have when I was still in my twenties and had no idea what was happening and didn't understand why I felt like I was the parent of a small force of nature rather than an almost two year old girl.

I've heard so many people, over the years, talk about how much they hate labels, and wish they could go away.  You won't hear that from me.  Because sometimes getting that diagnosis can mean answers.  And it can mean help.  And it can mean knowing you aren't losing your mind.

It can mean knowing how to help your child flourish and blossom.  And it can mean learning how to communicate with them, even if it doesn't look exactly like how everyone else communicates.

Now, back to Maggie and Tessie's adventures this week, and this is one of my favorite things, maybe in my whole life.

When Maggie was home sick, Tessie went on her way, tearing about the house.  At first Maggie helped her.  She opened the baby gate for her, and that's how we discovered that Tessie has totally mastered the stairs, which we'd been practicing for a couple months in therapy.

Well that's nice, I thought.  She's finally gotten that she has to turn around to go down backwards.  Let's take the stair gates down. I uninstalled the first one, since the second was too tight for me to loosen, and Tessie spent an hour and a half skittering up and down the stairs to the playroom, giggling.

When she was done with that she went back to trying to use the high chair as a ladder, and trying to gain access to any other high surface she could scale.

Maggie, I think, perhaps also saw that this wasn't the best idea.

Over the course of the rest of the day I would hear a bang, usually near where Maggie had been when I'd turned my back, and because it had been where she'd been standing I'd say "Maggie, what is..." and trail off as I turned around and see her standing, looking at Tessie, who had gotten into some new sort of trouble, with the same look that the rest of us have generally had as Maggie has concocted new ways to get into things she shouldn't have access to for the past seven years of her life.

And she would give me a look like she could not believe what Tessie was doing and I'd say "I know.  What can you do?  She's a baby." but all in all, with the exception of opening the baby gate to let Tessie come downstairs with her to play, Maggie had a remarkably unmischievous day.

I think because she was watching Tessie in disbelief that one small person could make so much trouble.

Exhausted from trouble making.
Yesterday we took down the second baby gate, that one that cut off going upstairs (and more importantly tumbling down, which had been the concern) and left the door to my bedroom open to see what Tessie would do with totally unrestricted access (which is unlikely to happen again for quite a while because of her a) climbing skills and b) the bookshelves in our room).

This is what happened next.

She raced up the stairs, climbed up on the bed, tumbled across it, got to the book shelf, threw herself at it, slipped down between the bed and bookshelf as I reached for her and grabbed her by the back of her dress (I'd been watching to make sure she didn't get into too much trouble), pulled herself up, and grabbed a bottle of iron pills.  Then she threw herself backwards onto a pillow, and while I waited ready to grab them (but testing my theory) she took less than sixty seconds to remove the child proof lid (theory proved, I had it out of her hand immediately).

She didn't cry.  She was pretty sure she shouldn't have had it and was probably surprised I hadn't grabbed it earlier.

Thanks to Mags, the only rooms not super child proofed in our house now are the master bedroom, the kitchen, and the laundry room, so now that the stair gates are down she has pretty free access to the house and I just have to make sure the climbing built in surfaces doesn't get too out of control.

If she continues to follow in Maggie's footsteps... it most definitely will.  But we're ready for it.

And Maggie is here as an awesome big sister to help us along the way, having already given us some pretty good tips for raising a baby mermaid.

I'm going to throw this in at the end because I love Sadie's expression where she talks about how she loves babies and is pretty good with them, then turns around and sees Tessie climbing on the bed behind her getting into stuff.  We watched it last night and couldn't stop laughing because of her face as she turns back around.

Monday, January 22, 2018

Sunday Afternoon Fun

This might be my favorite Youtube video so far.  Paul and the kids haven't gotten a chance to watch it yet because it finished processing at eleven o'clock last night (I had fallen asleep an hour earlier and woke up and saw that it was uploaded and complete) and I typed a few words with half closed eyes and hit publish, because I was hoping to get it posted on the same night as the game.

I think what I love about it is that it offers a little glimpse into everyones personalities (well Paul's personality when a game is on), and it offers an eleven minute look at the energy level in our house on any given Sunday.

The highlights included Tess spinning around like a top, Patch doing a million summersaults (I didn't even get them all on video), and none of the kids being able to remember for more than two seconds who Daddy was cheering for.

For anyone who's interested, I won't be posting all of our videos here or on the blog Facebook page, just a few of my absolute favorites (I know I've been enthusiastically posting the last few days as I've got things started and it's all been so new, but now I'm giving the page it's own twitter (@coffeendcupcake) and it's own Instagram (@CoffeeandCupcakesFamily), and so now I am also giving Coffee and Cupcakes it's own Facebook page so that it wouldn't be annoying to anyone who wanted to follow the blog who wasn't interested in quite as many videos.

Now maybe I can get the kids to remember the name of Daddy's team before Superbowl Sunday...

Saturday, January 20, 2018

Another Sleep Study (for Someone Other Than Tessie)

Yesterday I loaded a reluctant James into Paul's car and we headed north.

Within moments he was soundly asleep.  

He was going to see the pulmonologist at the office that Tessie goes to at the clinic at the Children's hospital a little over an hour north.  

I sighed as I thought about the process of getting Tessie an appointment there.  It had taken me months to be believed and get that first sleep study and then over a month to get the referral there, for a second opinion.

With James (I'm certain because of Tessie) things went quite differently.  It only took two conversations.

First I had told his neurologist what I was seeing (because I was fairly certain it was a "brain thing" because of Tess) and he told me to tell his primary doctor.  

So, reluctantly, I brought it up under "concerns" at his well child visit:

"I really don't want to tell you this," I began, "because I can't imagine him tolerating a sleep study."  

He had barely tolerated being weighed and measured. "But he gets up in the early morning and sneaks out of his bed and climbs up into our bed.  It's a king sized bed and a lot of the time I won't even notice that he's there."  

"And about four times now I've woken up and found him asleep, with nothing touching him, nothing over his face, on his back, not breathing.  And because of Tessie I knew to put my hand on his chest and I counted and I waited. I have seen him not breath for over twenty second before I shook him and he gasped.  So I know that he has at least four apneas that I had witnessed in which he was totally silent making no effort to breath.  And if I have seen it happen four times... well.... I don't want to think about how often it must be happening when I'm not watching."

Because, without the alarm I would have witnessed maybe four of Tessie's apneas over a year.  So four in a month... makes me uneasy.

His doctor felt strongly that he needed to be referred to the same doctor Tessie sees.  And this probably was another reinforcing piece in the puzzle of the likelihood of an underlying genetic cause... there are now a lot of questions about how Maggie slept as a baby (like a rock), and whether I suspected apnea with her (not at the time, but in hindsight... I believe it is incredibly likely... now I have no idea because when she goes to bed she tells me good night and says "Out please.  Door closed." if I linger.).  

If James does have central apnea, I guess we'll have to consider the possibility that he might not be the only kid that has it (I guess that would also offer fairly concrete proof of some sort of genetic abnormality that's causing the apneas, because central apnea without an apparent cause is incredibly rare, which is what her doctor seems increasingly to lean towards anyways) , but I'm going to try not to cross that bridge in my head before we get to it.  

James was so dramatic about the exam (being weighed, measured, having his eyes, nose, and throat checked, and breathing listened to, so nothing particularly extensive) that he managed to escape the office, clutching the a new toy motorcycle, car, and two stickers.  When we arrived home I think Patrick started to wish he'd gotten sent to the pulmonologist.

I will admit that I am planning this sleep study as a very special "Daddy-James" slumber party at the hospital.  Both because I hope that James will do better with his Dad there... and because after a half dozen sleep studies with Tess I'm a little burnt out.  

Thursday, January 18, 2018

Just... Be Kind... Kinder.

Yesterday was odd and at the end filled with an odd sort of internet drama that I'm almost reluctant to write about.

But I'm going to because I keep coming back to it and to a point that I don't want to forget.

I was tired yesterday.  

I'd woken up early for no particular reason and I couldn't sleep because my thoughts were going and wouldn't be stopped and so, because it was five, I got up and got dressed and started the day, my mind on Tessie.

Facebook reminded me of where we had been a year to the day earlier, and so that was on my mind too.

I thought about that day, driving to the hospital and sitting with the doctors who hadn't told me that they'd planned on doing a tracheotomy the moment we walked through the doors (they didn't), as they went over our entire family history, searching for clues and answers and finding very little to go on.

It seemed appropriate that I had just finished editing a video talking about Tessie's story, the words spilling out with surprising ease and so I put a few finishing touches on it and shared the finished product before going on with my day.

I got the kids up and ready, and onto their respective buses, then went about the house, doing laundry, cleaning, and wishing that it wasn't quite so cold.

And I worried.  It's been a worrisome sort of week.

I got a call this week from a social worker who got a call from Maggie's therapist.  They're considering accepting the results from Harvard.  And if they don't take them they're considering bumping Tessie up the list.

If they do either of these things it will be nothing short of a miracle.  These things don't happen.  They just don't.

And I'm almost afraid to believe or even to hope, that they're really and truly a possibility, because I don't want to be crushed if nothing happens and we have to wait eight months for her appointment.  Eight months, developmentally, when you're slipping behind more and more, is a very long time.

When the school bus arrived I sighed.

I didn't want to load the little kids up in the car.  I was so tired.  And a certain not entirely reliably potty trained child was insisting that he didn't need training pants, so I felt like disaster was looming as we trudged out into the icy cold, and loaded up the van.

And then we got to gymnastics.

This summer we discovered the gym that three of our five kids go to. We came upon it by chance when Maggie had an appointment with a specialist that wouldn't allow other children in the exam room.  I called, unsuccessfully, all over town.  Then I found them.

The gymnastics gym had a summer camp that would allow one day drop ins, at the last minute, and they saved the day.  And the kids had a blast.

Fast foward to the school year.  I have two kids who have pretty poor gross motor skills.  Like the sort of gross motor skills that get you into physical therapy.

We aren't going to gymnastics because I'm hoping to raise little Olympians.  We're at gymnastics because I have one kid who was in the 2nd percentile for gross motor skills three years ago, who walks across the room and falls over for no particular reason other than the fact that she's inherited her two left feet from her father and I, and a three year old who has officially graduated from PT, but who seems destined to follow in his big sisters footsteps.

Patrick has somehow managed to escape the clumsy gene and has hoarded all of the coordination that Maggie didn't get, for himself (he accidentally landed a front handspring the other day without meaning to), so he's just along for the ride.

With two minutes left until class started I shuffled three tiny kids into the bathroom, where the potty training rebel proclaimed the potty "yucky" (it wasn't) and refused to try and go, and then began to shout "It's yucky! No! No! Yucky! Yucky!" at the top of his small, loud lungs.

So we embarrassingly shuffled back into the gym, where everyone turned to look at the source of the commotion, and the boys sprinted to their class, while I said a small prayer for dryness (it was answered).

Then Sadie waved.  Her class was starting late.  "Can you take a video of me?" she asked, suddenly shy at the idea.

She pranced back and forth on one of the low balance beams, slowly, carefully.

When she'd first begun, at the end of summer, she had fallen off the taller beam that they use during class over and over and over again. And she'd had to learn to get back up.  That had taken weeks of the beam portion of the class.

And so I watched her, proudly, both before class, and then during her class as she slowly made her way back forth.  She wasn't doing anything fancy.  Her feet didn't leave the beam together.  But sometimes she stood very still, with a look of utmost concentration, and one foot would come up, or she'd lean to touch the bar with her hands, or she'd walk backwards, and these were all things that were impossible three or six months ago when she could hardly stay on the thing.

So I posted a picture on Instagram, mostly so that her grandparents could see the picture.  That is pretty much why I post 99% of my photos.

I knew that my mom would see and would remember the class that she attended in fall and would know how hard Sadie had worked for this small, sweet moment.

Paul came by after work, and took over supervising the little kids when they were done with their class, and I ran to do grocery shopping, and met the entire group at home, pulling into the driveway five minutes before them.

After all the food was put away, and dinner was cooked and the kids were fed, and tucked into bed I saw an Instagram alert.  There was a comment.

And that was when I saw that someone had scolded me for posted a photo of gymnastics "today."

Of course I knew what he meant, although I hadn't for a moment thought of it when I posted the photo, and for a split second I wanted to say that here it almost feels like everyday has been "today" for a while now.  And I imagine that it will be "today" for quite a while longer.

We don't have cable.  I don't know what the national news coverage has been like.  I can guess.

But I have watched the story unfold on local online news sites and I've waited for an evil man to face the punishment that he deserves to face here on earth.

And it has been heartbreaking to watch, and realize that one of the boys' favorite people in the world was one of the brave young women standing up, a brave survivor.

And it didn't for a single moment occur to me that someone would take me posting a picture of the kids at gymnastics, which I basically do every Wednesday while I'm sitting there bored for an hour and a half, and twist it into something sick and evil.

Mostly because it was one of a thousand things that was on my mind, and it wasn't near the surface, amid many more pressing concerns and worries.  But also because it wasn't anything sick or evil.

I stopped.  I thought about defending my motivation for the post, about trying to explain that I was just posting a picture of my daughter so her grandmother could see.  I thought about explaining that I've been praying for the survivors, especially those we know who've been personally effected.  And I briefly thought about using stronger language and telling the person to mind their own business because I hadn't had any ill intent at all, and the picture in no way supported the people or organizations that had dropped the ball and screwed up.

In the end I didn't do any of those things.  I blocked the user and deleted his comment.  He had never interacted with me in any way in the past.  If I'd recognized his name, if he'd ever said a kind or respectful word, I would have responded.  But he hadn't.

Once upon a time I tried harder to please everyone.  But those days are long gone.  And if your first comment is an arrogant scolding, or if you appear to be a troll, I'm probably not going to waste my time hitting publish or even reading the entire comment.  There just aren't enough hours in the day anymore and I don't have the energy to pretend.

Which brings me to the whole point of this post.

Yesterday someone who follows me was scrolling through my Instagram feed and they saw a photo and made the conscious choice to think the worst of me.  And then they decided that I needed to be scolded (I briefly considered replying "Next time please email your concerns over my behavior to my husband as he is the one to rightfully scold me in this situation" but I feared that the sarcasm would be missed... sigh.).

Maybe, just maybe, we should be a little gentler with each other.  Maybe we can think, hey, everyone is going through something.  Everyone.  This world, it's not an easy place.  This year, it hasn't been an easy year.  For anyone.

Instead of coming out swinging, when that's your impulse, be kind.  Say something nice.  Don't drag the other person down.  Even if makes your feel bigger.  More important.

Because maybe they're a small time blogger who's just posting a picture for their mom to see.  Maybe they spent the weekend driving to Boston for their baby to be diagnosed with autism, and they're potty training another kid, and they slipped and slid in the snow and they're so excited that their daughter can walk across that stupid balance beam and don't ruin it jackass.

Don't ruin it.

Oh yeah, you can't.

But don't even try.  Please?

Because we really shouldn't make life harder for each other, even if we can.  Right?

Disclaimer:  Yes I know.  I could have ignored this little internet obnoxiousness.  I very nearly did. But I've seen so much of it lately.  Maybe it's winter and the cold.  But too often in the land of the interwebs it feels like there are people looking to take things the wrong way.  And that's why I wanted to take this opportunity to use this example to say this.  Give people the benefit of the doubt.  Just... be kind.

Monday, January 15, 2018

Our Very First Vlog

The kids have been watching a couple family Youtube channels and this morning I let them convince me to make a channel of their own.

After watching a few videos on video editing I told them that if they picked up the downstairs (where they'd spent the morning playing) I'd film them playing and this is what happened next.

I threw on an introduction and added some clip art and we now have our very first Vlog.

Sadie was incredibly excited when we watched it before she went to bed and asked if we could make the second one tomorrow.

I told her I didn't think that was super realistic, so her new goal is to get one made by Saturday...

That's a little more realistic.

I guess we'll see.

Here is the latest.

They had a lot of fun making.

Actually we all did.

Sunday, January 14, 2018

Answers and Autism

We made it to Boston and I nervously bundled Tessie into the car, relieved that Maggie had been calm all morning long so Paul would be able to make the drive with us into the city.  

He was totally calm.  I was a bundle of nerves.

"We know what they're going to say, right?  This isn't a surprise.  We've known for a long time.  This isn't news." was his calming advice all the way there, as I chattered about being nervous, jittery and impatient now that we were so close to officially being told what I'd suspected for a very long time.  

We arrived an hour early and grabbed lunch at the bagel place near the Cognitive Neuroscience Lab and then it was time.

Tessie was not a fan of the EEG cap this time around (she is not a fan of hats in general) but after being bribed with a slew of animal cookies, bubbles, and the Curious George movie on TV she relented and sat still.

She relaxed and watched three of the videos they wanted her to watch with the cap on, to see what her little brain does when she sees people saying simple words she should understand and what her brain does when she sees people making random sounds, and then it was time for her autism testing.

After that we went into another room, across the hall.

First they did an ADOS.

The ADOS is basically done where the test administrator plays with the child, or in Tessie's case attempts to play with the child.  Tessie used her rather considerable willpower to ignore Ms. L, and wander around the room, testing out the baby gate that led to the hallway, and refusing to give the baby doll a bath, make the frog jump, or look cast a glance at the board book.

When the tests were done we sat and went over the results.

Tessie qualifies as having autism according to the test results, although the study doesn't offer official diagnoses.

We'll receive the test results in a few days in the mail, on the official university letter head, to give to her doctors.

The results will look kind of serious and scary at this point (or so we've been warned), but that's in part because of her lack of interest in the test giver, one of the difficulties in administering these tests to tiny kids on the spectrum, and they told us to remember that Tessie is a happy, easy going baby who does communicate in her own way quite well, even if it is without words.

We talked a bit about Maggie's results, when she was three, on the same test, and how I'd remembered opening a the packet and seeing her scores in the lowest .5% "of kids on the spectrum" and being afraid of what that meant for her future and now she's doing things that I couldn't have imagined back in 2013.  "I imagine it's not unlike that." I said, watching Tessie throw blocks around the room.

The girls have similar verbal skills (looking back to one year old Maggie) and neither one was particularly interested in playing with the toys in a neurotypical way.

So that's where we are now.

We're eight months away from her appointment for autism testing in Michigan.

We're praying that there are enough cancelations that she can get in sooner, because until she gets seen for that test she will get one hour of week of therapy and that's it.  Which, knowing how important early intervention is, is killing me.

Even with all the trainings I've done, and everything I've learned with Maggie, I'm not even close to be on par (success wise) with the therapy Maggie receives and doing what we do at home her delay has grown from 20% to 40%... it makes me feel physically ill to think of what it will be on August 8th.

The lab strongly recommended we come back for testing at the Developmental Center at Boston Children's.  Paul's going to call our insurance company as soon as the weekend is over the try and get it approved.  I am not optimistic.

Our last conversations with them have involved them denying Mags' seizure/migraine med last week suddenly (apparently, after years, they suddenly objected to the sweetener in the compound... sigh...), which was ultimately approved, and the denial of Tessie's genetic testing to determined whether or not she needed a tracheostomy and a ventilator when they were still afraid she had CCHS, which they continued to deny testing for (and which the genetic testing company ultimately covered).  So. My faith in them is very small.

I'm going to be making some phone calls and trying to determine how much of a difference going will make, and I'm going to be trying to get a feel for the length of the cancelation list at the moment, and I'm trying to see if they'd allow us to travel inside Michigan for testing at another location (pretty sure the answer is no, but I might as well ask... because if traveling to the UP meant shaving off months I would be in the car like that).

If the insurance says no to the developmental testing the lab recommends I'm not really sure what we'll do.  I guess we're taking it one day at a time right now.

For the moment the most important thing is that our tiny whirlwind princess is happy, and healthy and communicates remarkably well with us and all four of her older brothers and sisters who are only too happy to answer her babbles and rough house with her and keep her out of the trouble that, like a certain older sister, she tends to get into.

Who turned out the lights?
And that is the latest.

At least this time we have an idea that the road ahead isn't nearly as scary as we thought the last time we were here.  It's just different.  Challenging, certainly (but everyone has challenges).  I just wish I could get those tests through now.

The waiting is the hardest part.

Friday, January 12, 2018

From the Plane to the Van: A Change of Plans

I've been too nervous to write, or email, or even text.

I've been pacing and cleaning, but not packing, not yet.

Tessie and I were supposed to leave tonight, flying on Jet Blue from Detroit to Boston.

The weather, at least from what I'd seen all week, looked mild.  We don't have cable but every time I checked I would see "flurries in the a.m."  That looked non-threatening enough.

Still, even as the snow melted yesterday and a balmy breeze blew through the yard I was uneasy.

As I drifted off to sleep last night I laid out the day in my head.

Get Sadie to school.  Patch doesn't have pre-school on Fridays, so he would be home with Tessie and James and me.  Put away the last load of laundry that was still in the dryer and pack.  Scrub down the spare car seat and adjust the straps to fit Tessie. Pack a bag. Clean up any messes the boys had made in the mean time, and meet with Tessie's early interventionist for the last time, to be introduced to the special education teacher that would now be taking over her case.

Sadie would get home.  Paul would come home from work early. And I would install the carseat in his car and off we'd got to the airport for our seven p.m. flight.

I noticed how tired I felt at seven last night, as I was helping get the boys ready for bed, and didn't relish the idea of wrestling my twenty five pound lap baby for an hour and forty five minutes while I felt like dropping off to sleep.

At 5:45 my alarm sounded and for the first time in months I hit sleep, thinking that Sadie is always ready fifteen minutes before the bus arrives anyways, and that she could sleep in a few minutes too.
Before five minutes passed, my phone rang.

It was Maggie's school with a robo call, canceling the school day for "anticipated weather conditions."

I rolled onto my stomach and hit the email icon on my phone as Paul said "I got a text that the flight is canceled."

The next half hour was a blur.  Sadie's school called next, and then a text came from Maggie's therapy center and Tessie's therapist canceling their sessions as well.  Our entire days had been effectively cleared.

JetBlue had rebooked me on a flight the next day at 6am, which technically should get me to my appointment but I had played that game before.  Our first flight had been the afternoon before the appointment.  It had been cancelled.  They had then promised to get us on a flight the next day.

That had also been cancelled.

I didn't feel confident taking another flight that would make us vulnerable to the whim of the airline.

Which is what this felt like... I understood being grounded for the blizzard in Boston last week...  but it was harder to accept being grounded for a snowstorm that was dumping a few inches of snow and that would be out of Michigan hours before my flight was set to take off.

I'm sure there's more to the decision to cancel the flight, and that obviously I'm not privy to the decision making process, but at 6 am I knew that I wanted the decision of whether we were going to Boston or staying to be out of JetBlue's hands.

After checking the weather online and out the window we agreed to give driving a try.

I became a packing whirlwind.  I threw together a bag for Paul, Tessie and I, and then grabbed backpacks and packed four backpacks for the four big kids, each one full of everything they would need for a weekend away from home.

At the end of an hour of getting kids dressed and packing I woke up Tessie, got her a quick breakfast and everyone piled into the car.

It had started to snow.  There was maybe an inch of powdery white stuff turning Michigan back into a wintery wonderland.

It did take a little bit longer than normal to get down to Ohio, which was especially disappointing to Sadie who asked "are we in Ohio yet" approximately fifteen minutes after we pulled out of our driveway.

The storm was moving along with us, but by the time we got midway through Ohio we'd outrun the snow and now, nine hours into our adventure, we are halfway across New York, and we should make it to our destination just past Boston a little after ten.

"Are we there yet?" is our family motto.

Unfortunately so far the answer is a resounding no.

The entertainment of the moment is spending the afternoon on hold with JetBlue as I write (so far this entire) post.  Last time after the cancellation the first person we spoke to attempted to charge us to reschedule the second cancelled (by JetBlue) flight.

I'm not sure what is going to happen, or what I even want to happen, when they pick up the phone this time.  Because I really don't want their tickets... anywhere.  

If I ever get to talk to I guess we'll see.

Here is a glimpse of our day:

Update: JetBlue refunded the tickets!  So at least that is done with!

Friday, January 5, 2018

One More Update Before Sleep

Paul is the hero of the day.

He sat on hold for four hours this morning.

After the first two hours jetBlue picked up and he told them the situation, that our first plane had been grounded and we'd been moved to a second plane that had also been grounded and that now we'd missed our appointment in Boston.  

We had good news though.  We'd managed to get an appointment on the 13th.  Could they help us get a ticket so that I could get there with Tessie.

We'd be on our own now, he'd be staying home with the big kids, but at least she'd be seen and we wouldn't be waiting until summer for that ADOS.  

There was going to be an up charge for that, the woman on the phone after two hours said.  The thirteenth put us outside the travel window where moving our tickets would be complementary.

He asked to speak to a supervisor and while he waited he was cut off and the phone went back to a dial tone again.  

After four stressful hours on hold it was straightened out, without the additional fee and, barring any disaster, we're hoping to be there next week. 

I'm a little more nervous after everything that's gone wrong up until this point though.  

If there could not be any blizzards next weekend that would be really, really great.

Thursday, January 4, 2018

A Change of Plans

The last twenty four hours have been tough. 

We were supposed to fly to Boston early this morning for the study that Tessie's part of, which includes, autism testing there.  It's her 18 month visit.

Last night that flight was canceled.

Paul got on the phone and managed to get us moved over to two seats on a flight early Friday morning. And then we waited.

We got an email asking us to check in this afternoon and when I clicked to confirm it, the confirmation wouldn't go through.  Paul called to make sure that everything was fine and he was assured that it was.  

I had just finished repacking our bags, and was about to move Tessie's car seat over to Paul's car so that we could leave at 3 am, when my phone dinged.  

I glanced down and saw the words "flight canceled" flash across the screen not ten seconds after Paul told me that the woman at JetBlue had assured him that all was well.  

But apparently word must not have come down to her yet, that basically all the Friday flights were going to be cancelled too and we were out of luck.  

We're not really sure what is going to happen now.  Because I really want to find a way to get there.  I really would like to know how Tessie would do on an ADOS and Mullin now, instead of in ages, in August.

Nani and Bopa were here from California staying with the other kids while we flew with Tessie to Boston Children's and it is highly unlikely I'm going to figure out an alternate plan before they return home in a few days so... today was tough.  

The number of tears that followed that text were not insignificant.  I did not take that news super well.  This trip was kind of a big deal. And not going was/is... a big deal.

Out of all the days that I randomly picked a couple of months ago I had to pick the blizzard "bomb cyclone" week to schedule her appointment.   

There is so much coming up in the next few weeks, but I'm hoping we can figure out something quick out, even if it's just me and Super Tess. 

Wednesday, January 3, 2018

The Moon and Taking Off Her Backpack

Maggie has found a new passion.  

For the first time in years she's found an interest that rivals mermaids.

I first posted about it on Facebook when I told this little story:

"The other day Maggie was strolling by and said “Sun. Moon. Planet.” And then pointed out the moon outside the window.
Now she primarily speaks in scripts (when she's at home), the same ones over and over again and usually lists of nouns. Rarely anything new. This was new. 
So I said “Comet. Meteor.” Just to throw something else out there and she turned around around and gave me a huge grin. 

Today I was sitting in the same chair and Maggie strolled over and said “Moon. Sky. Satellite.” before continuing on her way across the living room. 
Did we just have a conversation that wasn’t about mermaids?"

A Mermaid. By Maggie.
For the past few days she's kept bringing up the planets and has been extremely excited every time the moon has passed by one of the windows in the house. 

When I described her new interest to Paul I said "You know those old videos of teen girls seeing the Beetles? Like that.  But with the moon.  Outside our house."

I finally put on a show about the planets on Netflix and sat with her to watch it.  Every time the moon came on she would cheer and ask me to lift her up to the TV so that she could touch it as it passed across the screen. 

Then she ran into the bathroom and returned with something cradled in her hand. She stared at it for a moment and then brought it over to show me.

As she held out her hand she whispered "Moon Doll."

My heart just about split in two.

I love her so much.

The social story didn't work out quite the way we hoped.

I read it to her. And she was very sad.

She understood what it was saying, about not going to school until the eighth. There were tears because eleven days is a very long time.

But she hasn't put her jacket and backpack back on since we read it.

So the drama and disappointment of each morning ended, after about an hour, and she's been able to enjoy her holiday, now that the expectation of school is out of the way, and is actually having a lot of fun, which is wonderful.

I texted her therapist and told her that it worked, not quite how we thought, but that it had been awesome none the less.