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Wednesday, December 20, 2017

Sink or Float? Surviving the Holidays Like Goldfish Can't

I love some of the traditions of Christmas.  The decorations.  The family-specific rituals each of us creates for our families, borrowing from our parents, borrowing from our spouse.  Tradition anchors my memories of Christmases past. 

But tradition can also be the anchor that drags our spirits down. The holidays are stressful for everyone. We're all trying to jam so much into them. And it's all good stuff. Like...how is it that we reach a place where you try to jam so much good feeling and holiday spirit into it that it ends up going so wrong and creating so much stress? It's like eating too much because you love it.  Like we're fucking goldfish and if it's in front of us then we MUST eat it until we gorge ourselves and die.  Maybe not EXACTLY like goldfish.  But you get it.  Christmas cards and parties, decorations and obligations, finding the right gifts and getting them wrapped...when it's all over and the tissue, bows and wrapping paper drift gently across the gift-strewn wreckage of your house like tumbleweeds across a post-apocalyptic landscape, maybe then you can look back and smile at all the joy. Or maybe not. Maybe you'll look ahead to the clean up. The putting away. The diet. Whatever.

It's okay to ditch the anchor. It's okay to create a happier healthier holiday for yourself and your family.  One of the best and most ironic lessons autism teaches is to abandon traditional parenting methods in the face of  neurology and look for new/different ones that work for your family. It teaches flexibility in the face of rigidity.  It teaches us to look for a "better" way, instead of the "traditional" way. To focus less on the tradition and more on the results. What works for some or most DOESN'T work for you.  It's okay to stop trying to make shit that doesn't work work.  I'm not saying this very well no matter how many times I rephrase it...if you don't see the irony, trust me it's there.  I know irony. 

It's okay if you didn't send Christmas cards.
It's okay if you didn't make cookies.
It's okay if you buy the "weird" present that your child wants instead of the "normal" present that you WANT him/her to want. 
It's okay to skip the holiday party because sitters are impossible to find at christmas.
It's okay to skip church.
It's okay to decorate less.  Or decorate differently.  Or decorate late.  Or skip decorating.
It's okay if your child didn't sit on Santa's lap. 
It's okay if your gifts are in gift bags instead of wrapped in paper.
It's okay if you give gift cards or money.  
It's okay if you can't afford to give what you really WANT to give.

It's all okay.  Celebrate in a way that actually feels joyful.  Abandon the stress and the rigidity of tradition if it makes you and your family happier...healthier.  How many of your traditions are for you?  Because it's the way YOU were raised, not even because you or your kids want/need them?  How many of your traditions do you KNOW you actively have to push energy into almost constantly in order to maintain?

It is a week before Christmas.  Less than.  I got the Christmas cards out.  I'm making Christmas Eve dinner.  I have the gifts bought (not wrapped yet).  Decorations have been up for weeks...two Christmas trees.  Teachers' gifts are on their way to school in my daughter's backpack.  Two Christmas parties yet to attend; both are this weekend.  I'm living the dream over here in Single Dad Autism Parent land.  Except that
I'm fucking stressed out.
I am stretched THIN.  I could do it, so I did it.  And now I'm at the end but I don't have anything left.  Not going to church on Christmas Eve this year.  Even thinking about it causes me stress.  So I'm not doing it.  Because I'm done.  DONE.  This Christmas will be awesome...probably in the way that winning your first marathon feels like...YES!!  I WON!!  Now I'm going home and I never want to put on another pair of running shoes again.  I didn't take my own advice...until now I guess.   
It's more important to me to maintain my sanity and my holiday cheer than it is for me to go to Christmas Eve Mass.  I probably won't take my decorations down until March.  Maybe not.  Maybe I'll leave them up ALL FUCKING YEAR.  Christmas cookies that Emma and I were going to make?  Meh...maybe. 

My point...my POINT is...you don't have to get to this place.  You don't have to jam all this fucking cheer down until you bloat like a goldfish and float to the surface of the holiday aquarium.  LET GO of the idea that you NEED to jam all this shit into the holidays in order for it to be...HAPPY.  BECAUSE...are you happy?  NO!!  You're fucking stressed out!!  I know!  I'm in your tribe!

Okay...anyway.  I'll close by saying...I.  LOVE.  CHRISTMAS.  Love it.  It is my absolute favorite time of the year.  And I love THIS Christmas even if what I've written above might make it SEEM like I don't.  And even if I AM capitalizing every third word so you can see how emphatic I am.  I love this season.  But it seems to me it is a bitter irony that this season we love can be destroyed by too much...cheer.  So...learn the lesson that having an inflexible child can teach...try a new way to reach holiday happiness.  Ditch the traditions that only LOOK good on Instagram and Facebook and find NEW ways to reach for something less...surface.

PS...I'm so torn about the fact that I'm comparing traditions to an anchor that holds you down, and then comparing them also to fish food that bloats you and makes you die and float on the surface.  We're floating...we're sinking...WHAT IS THE FUCKING ANALOGY JIM??  SINK OR FLOAT? 

I don't know...But if "It" taught us anything, it's that floating is bad.  So whatever.  Sorry about the analogies.  Focus less on tradition and more on happiness.  Create true happiness for yourself even if it doesn't make for a good facebook pic. 

The actual End.

Monday, December 4, 2017

The Fabulous Stains

"Ladies and Gentlemen, The Fabulous Stains", was a movie that came out in 1981.  It was about punk rock and about feminism, and a super young Diane Lane played the lead.  I'd never hear of it, but maybe 1985 or '86, they showed it on USA network's Night Flight.  I never really understood Night Flight, but it was trippy late night TV mostly centered around music, but I'd often watch the obscure movies they'd show.  In the case of the Fabulous Stains, I'm pretty sure I just wanted to see if they'd show Diane Lane naked.  They didn't. 

None of this has anything to do with the post today...except the title. 

This morning I was looking out the kitchen window at my crappy patio table.  It was covered in mildew/moss stains from constant exposure to wet weather, and I had an epiphany.  "I'll bet Tilex would clean that right up!"  So after the kids were off to school, I got the Tilex from my bathroom and sprayed half of the table down.  I gave it a few minutes to work, and then, sure enough, the stains cleaned up almost without effort.  I was so excited I went back in the house, retrieved the Tilex and sprayed down the rest of the table.  It was good as new. 

I beamed.  At one point I brushed against the table and I remember thinking..."I gotta be careful" because I was wearing a good pair of pants and Tilex would bleach the shit out of them.  I also remember after thinking that I should be careful that "I probably shouldn't wear pants like this when cleaning with bleach."

Anyway...magical.  The stains came right off.  I took the Tilex back upstairs and was brushing my teeth.  In the mirror I could see my closed bathroom door.  It had a dark smudge on it very similar to the outside patio table and I thought..."I'll bet Tilex would clean that right up!"

The stain on the back of that door has been there...sort of present but somehow beneath my notice...for years.  It came right off. 

So THEN i thought...I ought to just clean this whole fucking door!  I was so excited.  Mad with cleaning power.  And as I wiped the sponge down the door panel, a large foaming splotch of Tilex dripped on my pants and IMMEDIATELY stained the navy blue pants pink where it landed.  Did I mention expensive? 

I was still sort of happy about the stain cleaning, but in the end I just sort of transferred stains from the patio table and door to my pants.  And now I have to get new pants.  I changed out of my navy pants and put on a lighter blue/grey pair I had before leaving for work.

I just spilled oil on them. 

So anyway.  Stains.  Fabulous.

Tuesday, November 28, 2017

In a Nutshell

"So little to do; so much time.  Strike that.  Reverse it." - Willy Wonka
 Well we made it.  If you're reading this, we have not been obliterated in a nuclear war over some dipshit's twitter account.  Or, I suppose if we have, then Blogger's servers are robust as hell and your post-apocalyptic priorities are seriously out of whack.

We're in the home stretch of 2017 and it's been a doozy.  This is not, however, an end of the year wrap up.  Mostly just checking in.

I'm older and fatter than I was last year.  I KNOW WHAT I SAID!  And it's still not an end of the year wrap up.  Just...sayin'.  I'm going to attempt to jump back on that old wagon.  The diet and exercise wagon, I mean...not the fat wagon.  Although, if we're being honest, the fat wagon sounds pretty kickass and would also be an awesome band name.  "Fat Wagon".  I digress.  My metabolism has finally caught up with me and I'm going to take my own advice and not wait until the very end of the year as my "starting point" to resolve to get more fit.  Now is as good a time as any. 

Lily is still sleeping weirdly, but I actually think that's gotten a smidge better the last few weeks.  She's been falling back asleep quicker after waking at 3:30 or 4.  That's good stuff...if it lasts.

My home computer was on the fritz, so I had to take it to Best Buy.  They couldn't do anything with it and sent it to some data retrieval company.  They told me it would be anywhere from $250 - 5000 and I was REALLY hoping it wouldn't be $5,000 because... I had a bunch of pictures on there of Leslie and the kids that were duplicated nowhere else.  And I was thinking...I might actually have to pay $5,000 if that's what it takes to get those back.  Even though I don't really look at them, it's nice to know they're there for me and for the girls.  The charge was $450.  I was "happy" with that, honestly.

Now I'm thinking about getting my first Mac.  I've been a PC man all my life, so this change is big.  But it's probably time.  I've been using the lack of a decent computer as my justification for not starting my great american novel.  So I'll remove that hurdle and see what hops in front of it.

This time of year is stressful for lots of reasons, but mostly for me it's just how much shit you have to jam into the remaining time.  Lily's birthday is in a week and a half so that just gets added to the top of everything else.  And buying for her has never been easy.

If there's a saving grace to being slammed schedule-wise it's that it's easier to overlook missing people in our lives.  Obviously I miss her presence, but apart from that sort of...ambient grief, Leslie was a huge part of making the holidays go smoothly for the girls and me, and I'm constantly worried about how the holidays are affecting the girls in that regard.

The weirdest thing for me is how smoothly and effortlessly I can navigate my day without giving it a thought.  Like at times it feels so easy.  But also, if I stop at any point in time, I only have to focus on the loss for a minute.  Not just thinking...Leslie's gone...more like examining our lives without her.  And the tears are flowing.  How can both of those things be at the same time. 

It's like a scab that never fully heals.  Sometimes it itches a little and you think...I'll just scratch the edge and it'll flake right off, but instead it rips away and starts to bleed.  Meh...I'm looking for the right analogy.  That's not it.  Because I want to scratch that itch from time to time.  And I think it's a healing process, not something that makes it worse.  I'll come up with it.

I still have no home health nurse for Lily.  It's been since September.  I started out guns blazing.  I called every week for an update.  A few folks sounded positive.  But then one by one they either bowed out or said, "we'll start recruiting for the position" and I never heard back.  Now I call every few weeks, the list of agencies who haven't outright rejected her case slowly dwindling.  I have to keep calling, at some point my parents are going to burn out.  But they've been handling it since then.
I have to call the neurologist about Lily's epilepsy.  They were supposed to attempt to push through the blood test on my insurance and then notify me, but I haven't heard for months.  This is to determine what medicine she can use as a maintenance drug for seizure control.  It seems...importantish...since they tossed out the term SUDEP during our appointment.  And yet...here we are.

I tried making an appointment with a therapist to chat about 'things', but my first choice was a bust schedule-wise, and my doctor gave me a second name on a sheet of paper that I promptly lost.  It turned up a week or so ago and then I lost the damn thing again.  And there's no magic to this particular person.  My doc actually was like, "Oh!  I had a really great therapist to recommend to you but he died, so here's the name of someone who makes rounds here at the hospital instead."  Not much of a recommendation, but at least it's a name.  And the fact that I know that name is floating around somewhere at home is actually stopping me from just finding someone and calling them.  At the same time, I never remember to look for it when I'm there.  Meh.  I'll get there.

Lily had a great Halloween...visited every house in the cul-de-sac...HAPPILY.  She dressed as Anna from Frozen (second year in a row, but the costume had to be biggie sized).  I didn't dress up...

my attempt at pennywise

stranger things...


Emma finished "Sleepy Hollow" and next week are auditions for the musical.  "Anything Goes"  We'll see how auditions go.  I really hope she gets a part she'll enjoy.  So many talented students at her school, but I think she's one of them, and I'd like her to at least get a taste of the 'limelight' in high school.  This year has been SOOOOoooooo much better for her gradewise.  I don't know if it's just understanding the expectations of high school better?  More mature?  Whatever it is...keep it comin' baby!

Emma and I drove to DC for a "road trip".  We stayed at the W and their rooftop bar overlooks the White House.  That sounds more impressive than it was.  You could see it.  But it wasn't like you could launch water balloons at it.

We went to this cool exhibit of "nutshells".  This woman basically recreated crime scenes in dollhouse form to help the FBI train crime scene investigators wayyyyy backintheday.  It was neat, if somewhat morbid.




We piggybacked that with a trip to the Holocaust Museum.  That is a well done museum.  Probably could have spent a lot more time there, but we needed to check out and head back.  All part of my..."dedicate some time to Emma" campaign.  I need to ramp that up a bit.

Bought a new car.  Finally did what I said I was going to do early this year.  Sold my Altima and then traded the minivan in to attempt to buy one car that:  I could commute in (gas mileage), drive in the snow, drive to the beach.  Got a Subaru Forester.  It's super nice.  I already love it. 

Alright...anyway...busy month.  More later, but I already blew off buying candy for the kids' advent calendar to write this post, so time's a'wastin'. 

Merry ChristmaKwanzakka

Tuesday, October 17, 2017

All the Ribbons of the Rainbow

hat hair is not currently in the DSM
I can't remember what I've written and what I've left unwritten.  I'll write this chapter style because there is a lot to unpack, and it's all related and also completely separate...So let's hop in the wayback machine and adjust our dial to late winter of 2016...

Chapter 1:  A Lil Help Please

Because of the severity of Lily's disability, she qualified for a case manager through her ID (intellectual disability).  That person put me in touch with an agency.  That agency suggested I solicit my doctor's office for a "letter of medical necessity".  That letter, forwarded to Lily's Medical Assistance insurance got her approved for a home health aide.  Basically they would pay for an aide to stay with Lily 4 hours per day on school days that I worked, and 10 hours per day on non-school days that I worked (ie. the summer). 

Amazing benefit, right?  Except that the problem isn't even getting approved for the benefit.  The problem is finding someone to actually provide the care authorized BY the benefit.  Nobody had anyone to offer.  Six agencies told me they would recruit for the position.  Meanwhile my parents and in-laws continued to commute to my house for daily bus duty.  I speculated that maybe because there were limited hours...or the pay offered through insurance wasn't enough, or the hours were weird.  I wasn't sure, but wasn't getting a lot of interest. 

After two or three months, I finally had a string of interviews (they call them "meet and greets").  The first one didn't show up to the meeting.  No thank you.  The second one didn't show up to the meeting.  No thank you.  The third one showed up to the meeting and seemed quiet, but was fine.  A fourth meeting was scheduled but canceled before the meeting. 

Four interviews.  Three no-shows.  The person who "showed up" was hired.  It made me extremely uncomfortable.  But...she was the solution. 

Okay, let's put a pin in the aide situation.

Chapter 2:  Hidden Results

Around the same time as I was getting Lily's ID "label", I had reached out to Lily's developmental pediatrician to ask him about Rett Syndrome and Lily.  We had gone back and forth a few times about it in the past.  He asked me if we'd ever done the testing.  I told him I thought we had, but that the results had been negative.  Over the course of time, I had looked through all of Lily's genetic testing information and eventually came up empty despite feeling CERTAIN that we'd done the testing. 

I reached out to him again and asked if he had access to any other genetic test results that I didn't, because I couldn't find any record of it being done.  In March or maybe a little later this year he finally got back to me via phone to tell me that he found it.  And it was positive. 

And of course I was like...what.  the.  actual.  fuck.  dude. 

It turned out that yes, he'd ordered a genetic test for Rett for Lily back in 2013 or 2014 and that the results HAD come back around the same time.  And that they had been positive for the genetic marker for Rett.  So...what happened?  Why did I always think that she absolutely had been tested and absolutely didn't have it?

It turns out that the genetics lab had sent a cover letter to the doc indicating the preliminary findings, with promises of a report to follow.  The doctor filed the cover sheet and waited for the report...which never arrived.  He forgot the cover.  Forgot he was waiting for the report.  And everyone moved on.

But Lily continued to show some pretty stereotypical Rett's traits...hand wringing, pressured breathing, etc.  And, forgotten results notwithstanding, the doctor treated Lily as if she DID have Rett, or at least "prescribed" supplements that were supported by science for the treatment of patients with Rett Syndrome. 

So we found the cover sheet.  Genetics lost the report.  It's gone.  But Lily has Atypical Rett Syndrome.  Atypical in all the best ways...she CAN walk.  She does NOT need a feeding tube.  Those sorts of atypical things.  But with the new Rett diagnosis came a referral to meet with a geneticist.  I started looking into setting up an appointment.

Chapter 3:  Seize the Day

In April Lily's school reported her first seizure activity.  Absence seizures.  She was unresponsive for a minute or two, rocking rhythmically and drooling.  Then she would snap out of it and be okay again a few minutes later.  They loaded her in an ambulance and I met her at Children's Hospital ER. 

A long day in an emergency room followed. 

Fun fact:  Children's hospital does not have large pullups for children.  So, if you are meeting your child at the ER and somehow did NOT pack pullups in your car for work, they have no way to control potty situations.  Might as well duct tape a fucking roll of paper towels to your daughter, sir...we at "Children's" hospital ER are not equipped to handle your special needs.  Dicks.

They wouldn't let her eat.  Or drink.  Had tests to run.  It wasn't fun.  Ultimately left the ER without any sort of confirmation of the seizure itself, but other tests that came back "normal". 

We also left with a recommendation for a new sleep-deprived EEG to be conducted, and a sedated MRI, along with a followup with a neurologist.  Lily's developmental pediatrician seconded the recommendation.  I began to look into setting up those appointments.

From April to August she would have another two or three seizures, and I finally witnessed one myself.  I didn't love it. 

Looking back, people have been reporting seizure-like activity all the way back potentially to her being three or four.  It was always maybe once or twice a year someone would say she would just sort of stare and rock and drool and be unresponsive, but we'd never actually witnessed it, nor had a nurse (like the school did in April) witness it.  So, although we DID do a sleep-deprived EEG years ago (2011 to be precise) the results then were inconclusive.  The saw no seizure activity.  And the followup recommendation they made was met with a polite but clear "fuck you." At least in my head.

Chapter 4:  Appointments

I don't remember what was first, and I'm too irritated right now to look it up for accuracy's sake.  Lily did a sleep-deprived EEG.  She did a sedated MRI.  She met with a neurologist and a geneticist. 

The results of the EEG were...inconclusive.  According to Lily's developmental pediatrician...they showed "normal background slowing consistent with someone with Lily's diagnoses".  Only this and nothing more. 

The results of the MRI showed a Chiari type 1 malformation that was not shown on a previous MRI Lily had when she was like 2.  That generated a recommendation that she see a neurosurgeon.  I scheduled that appointment.  We visited. 

I will wrap your head around all this awesome appointmenty goodness momentarily. 

I met with the Geneticist.  Did you know that 90% of people with Rett Syndrome have seizures?  No?  I didn't either.  90.  Percent.  So yeah...she seconded the idea that Lily meet with the neurologist, who I was already scheduled to meet with, but it was wayyyyy out in the future because apparently it's all the rage to have a neurological condition.  I asked about followup.  She said, "I'd love to continue to follow Lily, most of my Rett kiddos end up being followed by neuro though."  k.  She recommended a bone density scan, and some other stuff.  I haven't looked into scheduling that yet.  At this point the number of appointments that branch from each previous appointment requires a fucking diagram.  hmmm.  Maybe I'll do that.

I met with the neurosurgeon.  Chiari Malformation isn't really a thing in kids.  I mean it is and isn't.  They did this study in the 50's.  All these people who died.  They found this statistical incidence of some measurement ratio in the brain.  Like...these people all shared this ratio in their brain stem and it was when measurement X exceeds such and such a percent of measurement Y...we shall call this ratio a Chiari Malformation. 

But it was a study done on adults.  And there is no data on children.  Soooooo...when MRI technicians see this magic ratio, they spike it out and a neuro-surgeon magically appears to follow your child through the rest of her days like you said "Bloody Mary" three times in a mirror.  Symptoms to watch for...loss of balance, dizziness, head banging, etc.  We don't see that. 

I asked about followup.  She said, people follow up yearly and get a new MRI every five years.  But if there are no symptoms, we won't really have anything to discuss.  I said...okay...so a year from now can I just reschedule for the following year?  "Yes.  That would work."

And then I met with the neurologist.  She put a giant purple ribbon on the entire encounter by telling me that because Lily two or more seizures we qualified for the "Epilepsy" package!  So it turns out that by virtue of Lily's seizures she's considered to have epilepsy.

Here are some things to think about that maybe I never thought of before...Don't leave Lily unaccompanied in the bath (in case she has a seizure and falls under the water) ...or in the swimming pool (jesus...not that I ever would)...or really...anywhere that she could fall and get hurt in mid-seizure.  ALSO...we're going to give you an emergency medication in case her seizures last more than five minutes.

Also also...we need to do a prolonged EEG to see if we can observe her seizures to better prescribe seizure medication for her moving forward.  Okay...but doc...doc...hold up.  Her seizures have all been pretty benign.  I mean...she just sits and rocks and drools.  No thrashing or tongue biting or whatever.  Why even bother prescribing meds.  What can it do for her?  She only has one about once every three months if that, and when she does...she's recovers in a couple minutes and is good as new.

ohhhhhh...yeah...about that.  We have this little thing in the world of epilepsy.  Probably you haven't heard.  It's called SUDEP.  In order to minimize the risk of SUDEP it's important that we get her seizures managed. 

Oh...okay..what's SUDEP? 

Uh...well...it stands for Sudden Unexpected Death from Epilepsy.   Fan-fucking-TASTIC!  So yeah...

So yeah, we need her to be medicated.  So I asked whether the results of a prolonged EEG would dictate which med she took.  The doc more or less said that odds are it will be Depakote, but it might be this other drug (can't remember).  But before they can prescribe Depakote they have to first do a POL g test because if the results of THAT come back positive, then they can't use Depakote.  So I'm on standby while they negotiate with the insurance company to see if they can get the test covered. 

Chapter 5:  Revisiting the Aide Situation

In September my aide quit.  Awesome.  It'll be sooooo easy to find a replacement.  (spoiler alert...I haven't yet found a replacement).  A week after my aide quit we had a meet and greet with an aide.  Again...she showed up.  Again...I wanted to proceed.  I took the day off on her first day to go over stuff with her.  She didn't show up to get Lily off the bus.  Thank god I was there.

It was probably for the best anyway, because it turns out, an aide can't legally give Lily any medication...including the emergency seizure med already in my house (for a seizure lasting longer than five minutes).  So even though she'd have been covering Lily...once the med was prescribed she would have had to get replaced by a nurse.

I had to reach back out to the doc for a NEW letter of medical necessity including the NEW diagnosES so that the insurance could review and approve (they did...and did) a NURSE in place of an aide. 

Soooooo...currently looking into the nurse situation.  To date...One nurse interested in a meet and greet...failed to show up.  In her defense...the agency indicated she had to go to the hospital.  That was two weeks ago.  She must be REALLY fucking sick.  That agency offered me a male nurse instead.  I politely declined. 

I was super excited to take a half day off today to do a meet an greet with another nurse that was interested!  But they called this morning.  She took someone else's case first. 

If you're keeping score at home that's six no shows.  This morning's no show made me a lot sadder than I expected it to.  I think I got my hopes up (the nurse thing has gotten more bites in less time than the aide thing ever did) but basically I'm still in the position where the one person who actually makes it to an interview and shows up for work...gets the job.  I feel EXTREMELY comfortable with that.  SARCASM!!! 

Meanwhile my parents have been covering the bus drop offs and I've been attempting to work afternoons from home...which actually works pretty well, but does NOT have the blessing necessarily of my boss's boss and I'm worried that at some point it'll come to a head. 

I'm frustrated.  I'm anxious.  I'm worried.  I'm upset.  I'm tired.  I'm standing. 

A friend of mine said this morning when I told her about the latest fucking no-show..."what now?"

And I told her, and I'll tell you...

What now? 

Recover my mood.  Reclaim my patience.  Breathe in.  Breathe out.  Follow up with agencies.  Wait.  Beg favors from family.

Local nurses looking for work?  I can actually guarantee you a job with any of the agencies that staff this shit.  Insurance dictates the pay, but it's work.  Inquire within...

Fin...

Epilogue:  I've been  meaning to write about Rett for a long time.  But the cascade of new appointments and diagnoses all needed followups to understand and unpack.  And each new appointment generated NEW appointments and diagnostic followups, and it never seemed to coalesce into "the big picture". 

So now it has.  I mean...I still have bone density scans and other stuff to do, but basically it's a relatively clear picture at this point.


Emma cut straight past the bullshit to a spectacular question..."So does this mean Lily doesn't have autism?"

For 8 years (seven?) I've been blogging about autism, participating in autism groups, even leading them.  And here we are...not...autism?

The neurologist indicated she is still on the spectrum, officially.  I guess it would be difficult, especially since Lily's Rett is atypical, to separate what is Rett and what is autism.  And certainly the symptoms put her squarely within the DSM's current guidelines.  But Rett IS genetic.  You CAN run a "simple" genetic test and KNOW that your child has it.  There's no grey area.  No refrigerator mom bullshit.  No engineer dad bullshit.  No internet caused it bullshit.  No overweight moms caused it bullshit.  It's just a genetic anomaly...like Down's Syndrome.  

But yeah...Lily is still autistic...

...with Rett, epilepsy, and a chiari malformation, and no fucking nurse.  I'm going to run out of room on my chest for all these awareness ribbons.

Monday, September 11, 2017

Anniversaries

***The first half of this was written a couple weeks after Leslie passed**

I don't know how to do this.  There's too much ground to cover.  Eulogize?  Explain?  Vent?  Maybe all of the above.

My best friend...my wife... passed away on April 7th.  I didn't have a lot of time to prepare for it, but I suppose I had more time than most people do.  She'd been sick for years.  Cancer. 

I know, fuck cancer, but I don't even really hate cancer.  I just hate the circumstances.  This was round three.  The first two times we knew we'd beat it.  But it was like that cat in song that just kept coming back the very next day.  Always a sucker punch away.

It all started with a cat, actually.  We got Emma a cat.  I'm allergic.  Leslie always said, "I'm not allergic to cats, just dogs," but when we brought the cat home, she started coughing and wheezing just like I did.  She didn't like her PCP (primary care physician) so she hated making appointments, but my doc gave me Singulair and I started taking it and I got better.  She finally caved in and got allergy meds too, but she didn't get better.

We finally went to the doc and had an x-ray that showed fluid in the lining outside her lungs.  I can't make this super medical or complicated, or this post will be impossible to read, but where most people inhale and their lungs expand into the empty lining around their lungs...Leslie's lining was slowly filling with fluid that wouldn't allow her lungs to expand into it and she couldn't breathe.

They biopsied the fluid and it was cancer.  "But the cat came back the very next day..."  Metastatic breast cancer.  I made the mistake of googling what 'metastatic' meant.  Leslie didn't.  She didn't like to know the odds against her.

Scans/tests/new chemo...pleural drains/dressing changes...it got worse.  A couple months later she switched chemos and things started to stabilize.  But then they didn't.  And then the other lung couldn't expand.  And it got harder and harder for her to breathe.  And then she was wearing oxygen.  And then we were turning the oxygen up higher.  And higher.

It seems like that process took forever.  It seems like she was on oxygen for years in hindsight.  But she wasn't.  I think I/we were so busy reacting to symptoms that we forgot to tell people she was sick again.  Or maybe we were just tired of giving people the same bad news all over again.

She started working from home when she couldn't climb the stairs at work.  She never made it back.  She worked from home for months.  On good days she'd bring her laptop downstairs and we'd all be in the same room together.  On bad days she'd stay in bed.

I was leaning heavily on family and friends.

Leslie and I used to say that we'd never been tested.  Despite perceptions about what Lily's diagnosis meant for our family, with a few hiccups here or there, she never really tested our capacity to care for her.  As Leslie's ability to help around the house dwindled, I picked more up.  I had the room.  It's amazing to realize how much your wife does when she's not longer physically capable of doing it.  I picked up more and more things as she was able to do less and less, and STILL I thought..."I've got this." But it was only because my in-laws and parents were picking the kids up every day after school.  Leslie had lost the ability to walk to the bus stop to pick up Lily.  I started feeling tested.  I started to wonder just how any single parent could do that day in and day out without support. 

I'm very supported by friends and family.  But I know not everyone is.  I tried to imagine how I'd do it without support but couldn't.  I was getting to work late so I could drop kids off before leaving for work, but at least I was able to work a little later because grandparents were there to get my kids off the bus for me.  Sometimes they'd start cooking so that I didn't have to when I got home.  Sometimes they'd make the kids lunches for me.

Leslie was guilt-ridden.  She felt like she was abandoning the family.  She felt like she was failing me.  She felt like she was a burden.  I tried to tell her that caring for her was my greatest honor.   I struggled through tears to tell her every time, but I did..."Caring for you is a privilege.  I feel like I finally have a chance to pay you back for all the care you've given our family."

We finally went to the hospital when the oxygen concentrator at home pegged out at 5 lpm and Leslie still couldn't get enough to breathe.  She was having panic attacks in the middle of the night.  Sometimes three or four of them.  She'd wake me to help calm her down, fetch medicine to help her, turn up the oxygen...but then there was no place to go.  We needed help. 

We went to the hospital for a tune-up.  Get the meds under control.  Get the breathing under control.  Get the anxiety under control.  Her parents were worried.  It was their 50th anniversary and they'd arranged a cruise.  Leslie begged them to go.  Told them she was fine.  The day after she went to the hospital she was like a new person.  I emailed her folks to tell them how much better Leslie was doing.  But that was the high mark of her visit.  It went down from there. 

A few days later she was still in the hospital.  She had some close friends visiting and the physician's assistant pulled me out into the hall to talk to me.  "I'm telling you this because I think it's the right thing to do."  They told me that the cancer in her lung had progressed beyond their ability to treat it.  They gave me the option:  make her comfortable or keep fighting.  She had chemo scheduled the following week.  I asked how long they thought she had...sucker punch...absolute best case scenario, "months"...worst case..."today".

So I pretended I knew nothing while I went back in to smile and chat with Leslie and her friends and inside I was thinking..."Jesus, this can't be happening.  How did this happen?  How could we not have known?"  I think I spent the night that night.  The staff met with me the following day and I told them I needed to find out whether Leslie wanted to know.  It's something she typically wouldn't want to know.  I had them ask her hypotheticals about what if THIS doesn't work, or what would you like us to try if THAT doesn't work.  I knew that if I asked, she'd know. 

They got to a point where she told them she wanted to know and they told her, and then I went to see her and we just sat there and cried and held each other and I felt like somebody had just put a big hourglass on her bedside and the sand was running out.

We told each other so many nice things.  Every day from the day I learned, I resolved never to leave anything unsaid.  I told her how much I loved her and how much I respected her and how much she'd changed me and what a great mother she'd been and how much I'd miss her.  And we knew we had to tell Emma.

I talked to a social worker and a grief counselor and googled things and by the next day I'd made notes on what to tell her.  There is nothing I have ever had to do that is harder than having to tell Emma that her mom was going to die.  Nothing. 

So here are the notes...I more or less memorized them for our talk with Emma, but these are them:

"Some doctors think that the cancer on Mommy's lungs is too far along to stop. They don't think they can make it go away. And that Mommy's breathing will continue to get worse and not better, and that all they can really do is to try to make her more comfortable as it gets worse, not cure her.

We just found out about this. We didn't know how much damage to her lungs the disease had done. As soon as we found out we started talking to people about the best way to tell you. We don't want you to think we've been keeping it from you.  We just didn't know.

1) Doctors don't know everything. Mommy's cancer doctor still wants to treat her. They can guess. They can estimate. But every one is different. We just know that it makes sense to make the most of our time with mommy right now while we know that we can.

2) Your mom is a fighter. She is not giving up on treatment and neither should you.

3) God is with us always. God has provided mom soooo much comfort throughout this struggle. This isn't God's fault. Lean on God. Pray for comfort. Pray for guidance. Know that mommy loves God and that God loves us all.

4) No matter what, mommy will always be with us. Her love, her guidance. We want her to live with us as long as she can, but if she has to go, just know that her spirit will never EVER be gone from our lives.

5) We need to love each other and be here for each other. This is the hardest thing we will probably ever have to do. But we can do it because we are a strong family with a lot of love."

Leslie's three biggest worries...that Emma would hate God, that Emma would think she was giving up without a fight, and that Emma would think we'd hidden how sick mommy was from her.

And she took it very well.  She just sort of slumped slowly against Leslie in her hospital bed and Leslie stroked her hair, and she cried and buried her face in bed.   She spent the day with us in the hospital just being with her mom.

When Emma finally went home (staying there was too traumatic with the panic attacks) Leslie and I talked again.  About how much time she had.  And Leslie said, "I just want to see Emma get married," and I just shook my head and we cried.  And then she said, "Then I want to see her recital," and I knew there was no way, but I just said, "Let's get to chemo and then work on getting to the recital."

****

This is as far as I made it two years ago when I first attempted to write about Leslie's final time with us.  I decided to write about other things.  Good memories.  The stuff we've missed together already...the stuff she'll miss in the future...that stuff is just too hard.  Too sad.  Too unfair.  And ultimately...not a healthy way to approach this loss.  I eventually wrote more about it here...One to Make You Cry...but that day I just couldn't.

It's 9/11 today, and while most people are thinking about the lives lost in the Twin Towers and the Pentagon, and in Somerset...I'm thinking about my wedding anniversary, and the woman I lost.  The woman I married 18 years ago. 

A friend asked me if today is hard for me.  It's not.  I don't know why it isn't...but it isn't.  When I think of our anniversary I'm not thinking of hospital beds and labored breathing.  I'm not thinking of future anniversaries uncelebrated.  I do try to take some time to think back on a pretty happy, mostly successful marriage that...yes...ended before it should have.  It IS still sad to me.  When I allow myself to think too much about it, it's so very sad.  And honestly, I know that the hearts of the people who love me are in the right place when they reach out on our anniversary to give a little extra love or tell me to hang in there...but...ironically...this isn't hard for me unless I'm deliberately thinking about it, which those messages invariably force me to do. 

And please...if you're one of those people, don't stop doing you.  I know you're supporting me, and thinking about it, though sad, is worth my time.  It's worth it to remember something special.  Always. 

But...apart from snot-nosed blubbering from rereading what I wrote two years ago...this is still a happy day for me.  I made the right decision 18 years ago.  All the branched paths that our decisions took us on together led me here.  My family is doing alright.  Our children are such a joy to me.  The house we picked together continues to grow and change (for the better I hope) and I continue to remind Emma and Lily of all the little ways that their mom's love and life brought us joy.  Just as they remind me daily of how blessed I was in having children with her.


I thought I'd written about our wedding day and put it in drafts, but I didn't.  I kept inching up to it incrementally and then not writing it.  I thought maybe I'd  write about it for our anniversary, but there's too much.
 
*long breath in...hold it a few beats...long breath out*

I feel like I'm pretty mentally healthy.  But there's some weird stuff going on in my head space (heart space?).  As I move forward in my life and try to find "ME".  Not me without Leslie...just me...I'm encountering some residual fear and anxiety about relationships and opening up that may or may not have something to do with losing her.  It's nothing earth-shaking.  But it's something that I see is...NOT healthy.  Or MIGHT not be healthy.  So anyway, despite basically badmouthing the therapy industry my entire adult life, I'm making plans to see someone to just talk about it.  See if there are things I can think about...homework maybe...that will help me keep moving forward. 

Anyway, I feel like that's something people should know.  Not necessarily about me, but about life.  Sometimes you need help.  Sometimes you don't "got it".  And then you get help.  Sometimes going into the woods and breathing the clean air doesn't "fix it".  Sometimes "pulling yourself up by the bootstraps" doesn't "fix it".  Sometimes compartmentalizing doesn't "fix it".  There may be no fixing it at all, in fact.  There may just be "adapting to it". 

I'm happy.  I really am.  This is just something I need to address to be happier.  HappiEST. 

In conclusion...thank you for all your thoughts/prayers/hugs.  Please don't stop sending them when you think of it.  But also, just know...every day is just like every other day.  I honestly don't feel any sadder on the anniversary of the day Leslie passed than I do on the day we were married.  I don't measure time that way (maybe that's a good/bad thing...not sure).  You won't see yearly posts about THIS being the Xth anniversary of the day Leslie died (That day isn't something I care to commemorate.  I'd rather celebrate her life) or THAT would have been our Zth Anniversary.   

But...I'm fine.  I'm happy.  And when you ask me how I'm doing because today is X...it makes me sad but only because it takes it all out of the compartments I have carefully set up for it and dusts them off and makes me look at it.  But it's worth doing.  It's worth remembering.  It's worth being sad.  And then remember happier times together, celebrating them, and moving forward.







Tuesday, August 22, 2017

A Touch of Lace

Lily has been growing like a proverbial weed.  She's sprung up almost overnight, finally cracking the "growth chart" she's loitered below for so many years.  Every time I take her to a doctor's appointment...and that is "many"...I note her measurements.  You know that baby book you keep for like the first 18 months of your baby's life and then forget where it is?  That's going on in my iphone right now.

See attached chart below:
I like charts.
She's gained almost 30 pounds in less than two years.  It's pretty amazing.  So much of my "autism narrative"...so much of how Leslie and I reacted to Lily's behaviors was overridden by a desire...a NEED to get her weight into a more healthy range.  Now though...game on.  The kid's killin' it at the dinner table.  Now I don't feel so...threatened by her loss of patience when she eats.  Now I don't feel like it's imperative that she get SOMETHING in her, so why bother with working on her self feeding.  Time to refocus.  Kid's got some wiggle room (no wiggle-related pun intended).

So anyway...growth spurt.  Her feet apparently also grow.  Sometimes I forget that.  My parents noticed her toes might be stretching the fabric of her current footwear and took her shoe shopping.  Mom sent me a picture.  Lily's favorites were the powder blue ones, but I liked both.  She refers to colors by their corresponding wiggle.  The powder blue were "Blue Anthony Shoes". 
Side by side comparison of blue anthony shoes and also...blue anthony shoes

It will become more complicated when she wears the red and navy blue ones.  All blue shoes are blue anthony shoes...so... pointing may be involved. 

At Lily's current shoe size...(Big kid size 1) the velcro options are dwindling.  I reached out to fellow autism parent, blossoming autism blogger, and AC of PA staff member, Jen for suggestions on clickable shoe closures.  I knew her son had them because she had initially struggled getting them on his shoes.  She pointed me to Zubits website.  I then went to Amazon and found a pair of knockoffs (Aircity) at half the price.  I bought white because I thought they'd look sharp with the shoes, but also look decent with ANY athletic shoe.  But they have tons of colors.

In a nutshell...they are powerful magnetic closures that you lace your shoelaces through then use the magnet to open and close them.  They look like this...


The magnets are STRONG, but you can get varying strengths for bigger (or smaller) people up through active adults using them for running shoes.  I Amazon Primed them and a couple days later I followed the simple directions and within a couple minutes (like seriously, Jen, what the hell was your problem?) had them on her blue anthony (not the other blue anthony, they have velcro) shoes.  I was pretty excited. 

She's been wearing the powder blue ones pretty much, but when I picked clothes out for her first day of school I thought the darker shoes would be a better contrast and not too "one note". 

Note shoes. 
Yeah...I um...didn't try them on Lily before I fully tightened the laces into the closure and snipped the ends.  I tightened them so much they wouldn't fit over her feet and then close.  I um...can't fix them because I already clipped the ends of the shoe laces so there's no flexibility to loosen the laces and start again (so...sorry Jen). 

So...today I'm shoelace shopping.  We'll try again tomorrow.

Thursday, August 10, 2017

Conversational English

I was telling my friend Bec that "I'm well" in response to her question asking me how I was doing the other day. I told her that's my new default instead of "good thanks", and told her this story.

My boss's boss's boss is named John. That's not super relevant to the story but I figured John would be easier to type than "my boss's boss's boss". Anyway, John has the corner office on our floor and he's super nice and outgoing and every time he sees me he says, "Hey, Jim, how are you doing?"

And I say, "I'm good thanks, how are you?"

And without fail he says, "I'm doing really well, thanks." And I immediately think...you sonofabitch...did you just fucking subtly correct my grammar??

So I'm like...god dammit...this is my boss's boss's boss. I will be damned if I'm going to allow this shit.

I'm doing well...I'm doing well...I'm doing well...I practice it in my head. It's so informal and "Montana" to say "I'm good, thanks". It's ingrained.

I'm doing well...I'm doing well...I'm doing well...

So the next time I see that son of a bitch I'm all prepped and ready.

And he says, "Hi Jim, how are you doing today?"

And I reply..."Good, thanks, how are you?" ( GOD DAMMIT )

More practice...

The NEXT next time I see him I'm fucking ready. He says, "Hi Jim, everything going alright?"

What. The. Fuck. He flipped the script. Well...i have no response to THIS. we didn't prep for THIS. Who can answer something like that off the cuff?

"Doing good thanks" (FUCK!)

The NEXT next next time I landed it, but stammered a bit, (.5 deduct)...

I used his own words back at him. "I'm doing really well, thanks," but it tripped over my tongue. Wasn't "natural".

And I realized that for some reason I OFTEN say, "I'm well" to people. But...for some OTHER reason...never in response to John. So...now when people ask me how I'm doing...it's "I'm well". And I'll keep fucking saying it until it's so ingrained in my head that when that friendly sonofabitch asks me it'll flow as smooth as McDonald's soft-serve ice cream..."I'm well, John, how are you?" I'll say. See how he likes THAT!

Meanwhile...he has no idea that I'm hostile about what is probably not a subtle grammar correction, but just the same thing he says to everyone.

UPDATE:

So today, he sees me in the hall, and basically now I have a brain block around John. I start breaking out in a cold sweat whenever I see him. I've got the conversational yips. So I see him walking toward me and he says, "What's the word?"

And I froze like a deer in the headlights...because­ who the fuck EVER knows how to answer that question, and also...because I was still all "I'm well, thank you, how are you?" like I'm just learning to speak English and think everything anyone says is "how are you". Couldn't get my high powered brain to just go on autopilot the way it's supposed to with conversational niceties.

So instead, I just totally ignored his comment and gave him mine "I'm well, thank you, how are you" and then he said, "Doing okay, how about you?"

"Good thanks"

DAMMIT!
 

Monday, July 17, 2017

Reminders

This weekend I finally marked "complete" in my phone reminder to "Add polymeric sand to patio".  I think I put that reminder in my list while Leslie was still alive, if that tells you how long you can ignore a daily reminder.  The first week you're like..."RIGHT!  I have to get that started."  That continues off and on for a few months.  After that you realize you're not doing it, so you turn off the notify thing, but you're still thinking..."I'll get to it," so you don't actually delete it.  After about a year you just don't even actually see the reminder.  I think I stubbed my toe on the polymeric sand in my garage getting out of the minivan and that got me thinking I should complete it this year.  That, and I've been actually using my reminders more consistently as a tool to combat my continuously-decaying short term memory.  (Highly recommend this)

Last year I ALMOST did it.  The job has more to it than just "add sand" though.  I had weeds growing through my patio cracks pretty much...everywhere.  And the sand fills the cracks like grout would.  It's super simple but...

First I needed to kill the weeds.  Roundup.  Fine.  I did that last year.  Then waited a couple days...did it again for the ones that lived.  Then pulled them.  Then stalled out before I could reach the next phase...

Pressure wash patio.  I almost stalled out on that again this year.  It seems the $100 pressure washer I bought 15 years ago is no longer getting up to pressure.  I thought maybe my hose was too long (ba dum bum) and almost stalled out again holding up the project until I got a shorter hose.  But after pressure washing it a few times (my dad loaned me his pressure washer and even took a turn pressure washing it before I got to it) and then pulling any remaining weeds not already dead or dying, I finally got past that stage. 

When the patio was originally installed...seven years ago maybe?...they had me fill the cracks with polymeric sand, and it probably lasted three or four years without any weeds poking through before each subsequent year stared getting worse.  It looked horrible.  Finally had enough.

Anyway..."completed."  Thanks for the reminders.
----------------------

I've been having some great successes lately with cooking.  I'll share some of those on the blog at some point.  But this weekend I had a couple "setbacks".

Yesterday was National Ice Cream Day (I guess).  I recently bartered for my friend Kate's unused Cuisinart ICE-21.  I've always wanted an ice cream maker.  For Emma's birthday in March I actually made "no churn" ice cream that turned out amazingly well (and was super easy), but I was eager to try "the real thing".

I talked to Emma about it and we decided to start out simply before doing anything crazy.  We decided on vanilla.  Kate gave me a couple pointers (put the inner tub in the freezer for at least 24 hours before starting, chill your ingredients as much as possible before starting, and don't run the machine more than about 15 minutes unless you want to burn out the motor).

I needed a recipe and asked her for one, but she was on the road and just told me to google cuisinart recipes, which I dutifully did.

Except.  Except I didn't pay attention to WHICH cuisinart ice cream maker I was getting the recipe for, and ended up making about twice as much as the ICE-21 can fit.

I followed the recipe.  It said 30-35 minutes in the machine.  I thought about Kate's warning...but it was the Cuisinart recipe...how could that be wrong?

I discovered my error about 35 minutes later when my mixture was still soup.  I reread the recipe book and saw that the filename of the Ibook was ICE-35 recipes.  uhhhhhh...

The bright side is...the mixture isn't wasted.  And I didn't burn out the motor.

So Kate advised me to just split the mixture in half and try again the next day.  (That's today, by the way).  So...my mixture is in the fridge chillin', my tub is in the freezer, freezin', and hopefully tonight I'll be making ice cream.  Happy belated National Ice Cream Day!
------------------

Meanwhile...I decided to make a roasted red pepper for hamburgers.  I thought...roasted red pepper, avocado, and provolone would be a nice burger combination.  So I took the red peppers out to the grill and started them cooking.  Once I got back in the house I changed my mind about the burger, deciding we'd had them too recently, and decided on spaghetti instead.

I remember thinking...maybe I should set a timer for the pepper so I don't forget them.  But I decided I wouldn't.

This morning I woke up and looked out at the patio...it's so bare with all the furniture still off in the grass, and it looks so nice with all the cracks filled with the hardened sand/grout and not a weed in sight.  I glanced at the grill (which I'd rolled back the previous night to roast the red peppers) and froze.  The red peppers!

They were done.  The gas was gone.  They were done and sitting on the grill, black as pitch but perfectly in shape.  I picked one up.  It was paper light.  I squeezed and it cracked, crumbling to powder under the pressure of my fingers.

I should have set the timer.
Delicious..."blackened" roasted red pepper...patio with polymeric sand in the background.


Thursday, June 29, 2017

Easy Shrubs

The first time I'd ever heard of a shrub I was trying desperately to decode Smallman Galley's cocktail menu.  In general, the whackier the cocktail, the more I want to try it.  Smallman Galley (a local "chef incubator" has a bar menu filled with whackiness.

I didn't actually even TRY the drink with the shrub in it...just noted it on the menu as I tried to make sense out of ANY of their offerings.

The cocktail in question, "Here and Now" was a solution of "Market Alley" gin, dry curacoa (don't know how to make the little tail on my c), summer berry shrub, and lemon.  The one I tried instead was Vilified.  I found its contents more exotic.  BUT...I noted the term "shrub".  And learned that it was a way of preserving fruit juices/syrups in a vinegar solution.  It sounded kinda gross if we're being honest.
each ingredient less likely than the last

Except, a month or so later, at a Yelp Elite event at Muddy Waters (an amazing local oyster joint (probably they wouldn't appreciate that appellation, but here we are)), Boyd and Blair Vodka gave a two station presentation...1)  Making a shrub, and 2)  Creating a holiday punch from said shrub.  I tried the shrub.  The shrub was delicious.  I took pictures. 
the shrub

the punch

Right then  and there I vowed to make a shrub.  It was easy!  I would make a holiday punch for thanksgiving from the shrub I'd made (I didn't) or maybe Christmas (I didn't).  But the thought was there.  And I did make a shrub that November.  I just...I just kept forgetting to buy cheesecloth to strain it when I was done.

For months that shrub sat in a 32 ounce mason jar in my refrigerator, and two days after I finally pushed the button on my amazon app purchasing cheesecloth, it arrived on my doorstep (on a Sunday...god bless you, Amazon).  I strained.  I invited my sister over later that week.  And we got to work. Drinking.

Okay...

Apparently the idea of the shrub dates back to colonial days.  Seasonal fruit was preserved using vinegar and sugar, jarred and stored until needed/wanted, straining the fruit through cheesecloth left a mildly vinegar-tasting fruit syrup, or shrub.  Mixed with club soda, or carbonated water, you basically have shrub sodas, or drinking vinegars.  Mixed with spirits...you have excellence. 

Boyd and Blair's original recipe (they handed them out on printed cards at the Yelp event) was holiday-esque, it was spicey and wintery and delicious, and although I wanted to replicate it, I was missing some of the fancier ingredients. 
I still have this card in my recipe box.

Couldn't find it on their website, but they have some awesome drink recipes WITH shrubs.
http://boydandblair.com/recipes/

But you can basically make a shrub out of any fruit/vegetable that's juicy.  The more fibrous fruits/vegetables don't work as well.  I loved the idea of strawberries and basil.  I got a package of strawberries and some fresh basil along with unfiltered cider vinegar and some mason jars and a fruit masher and a canning funnel (that delivered months before I realized I needed to place my cheesecloth order).

There are several ways to make shrubs.  Two main ways...hot or cold.  There are several great posts on the merits of each (easily searchable..."how to make a shrub"), but broken down into very basic terms...cold keeps the brightness of the fruit better, hot minimizes the tang of the vinegar better.  Why I use the cold method, however, is because it's suuuuuuuuper easy.  And I'm a single dad raising two kids, one of whom is autistic.  I like things easy.  Easy is my jam.

Okay...Cold method...there are a couple approaches to this as well:

1)  mash fruit, mix/mash with sugar, let sit a few days, add vinegar, mix, let sit a couple weeks.
2)  mash fruit, mix/mash with sugar, add the vinegar, let sit a couple weeks. 

I picked the easier method of...just throw all the shit together and mash it up and then let the vinegar and sugar do its work. (method 2)

If you look at the Boyd and Blair recipe, there are some decimal places there that I thought were too complicated.  I simplified my own version to be...in essence this:

1)  1 1/2 cups of mashed fruit (take a bunch of cut fruit, toss it in the mason jar and mash the shit out of it until it's down to 1 1/2 cups.  Add more fruit until you get 1 1/2 cups mashed.
2)  1 1/2 cups of sugar (I then take the fruit muddler/masher and mash the shit out of the fruit with the sugar until it's all one big syrupy mulch)
3)  1 1/2 cups of unfiltered cider vinegar (or however much room you have left in the 32 oz mason jar)

Easy.  Close the lid, shake all up until the sugar granules are all fully dissolved (if they weren't already) and put it in the fridge.  I labeled my jar with the date since you're supposed to wait a couple weeks.  Every day I'd grab the jar, mix it all around, and put it back in the fridge.  Until...I didn't anymore.  Because it was months before I had cheesecloth.

When I finally had the cheesecloth...I strained the syrupy mashed fruit mix through it into another jar and I had my shrub.  It smelled amazing...strawberries and basil...and yes, a hint of vinegar.


I encourage anyone who wants to try a shrub to start with strawberries and basil.  It's amazing...

My sister and I collected some mixers together and made the following:
1)  Strawberry basil shrub mule (with ginger beer, vodka and a bit of lime juice)
2)  Strawberry basil shrub old fashioned (bitters, bourbon, teaspoon of sugar)
3)  Strawberry basil shrub with rum and lime juice
4)  Strawberry basil shrub margarita (tequila, cointreau, lime) (not pictured below)




They were ALL.  UH.  MAY.  ZING.  Seriously, I would have thought at least one of those things would have sucked a little.  None did.  None sucked.  They kicked ass.  No sucking.  All kicking.

So...I made more...blueberry ginger, cherry, grilled pineapple with jalapeno, and, in honor of Donald Trump...peach mint!  mmmmmpeachmint.  All soooo good.
peach/mint...skins...no skins...no worries!

blueberry ginger

cherry

And then I was at another Yelp Event at Tres Rios where they served a roasted red pepper margarita.  "Nobody else in the city is making this margarita," they said...NOT.  SO.  FAST, Tres Rios...I roasted red peppers and jalapenos...I mashed, I mixed...and right this very minute there is a roasted red pepper/jalapeno shrub aging in my refrigerator waiting for its turn in the margarita merry-go-round.  It smells soooooo good.


It's gotten a bit out of hand, I'm not going to lie.  The other day, Emma tried to put something away in the fridge and she said, "Dad, can we move all your 'special juices' to the basement fridge?  There's no room for food."  And she's...she's sort of right.

I'm taking a brief break from shrub-making and transitioning over the fourth of July holiday to shrub DRINKING.  But there will be more.  So many more.

If you decide to shrub here's the equipment you'll need:

1)  32 oz mason jar
2)  Fruit masher
3)  cheesecloth
4)  canning funnel (optional...but it's less messy)

The recipe is constrained only by your imagination and budget.  Healthy people are drinking unfiltered active yeast vinegars these days, and while I can't speak specifically to any health benefits I'm observing...I did feel pretty amazing after my sister and I finished our cocktails.

Despite the health benefits of the unfiltered cider vinegar, nothing is holding you to it.  Use champagne vinegar, red wine vinegar, balsamic vinegar...whatever you think.  The same is true of the fruit the sugar and any spice you use.  The recipe amounts to:

1)  fruit or vegetable you want to preserve/shrub
2)  spice (optional) you want to mix with it (I recommend basil/mint/jalapeno...it cuts the vinegar smell and taste and if you pick well, pairs really nicely with your fruit)
3)  sugar (this can be any sugar...cane sugar, raw sugar, maple syrup...whatever you think would be a nice mix with the fruit/veggie you selected)
4)  vinegar (again...any vinegar will do, but I highly recommend the unfiltered cider vinegar)

and that's it...1 1/2 cups of mashed fruit veggie of choice with spice of choice, 1 1/2 cups of your sugar of choice, 1 1/2 cups of  your vinegar of choice....mash/mix...refrigerate two weeks, mixing daily.  Strain and mix in cocktails or carbonated water.
mash up your fruit

add sugar

mash it all up

add vinegar

label with the date (if you're forgetful...like me)

refrigerate two weeks, mix every day or so
strain a couple weeks later!  voila!

Experiment with how much you want to use.  With cocktails we basically used 1:1...1 shot of shrub with 1 shot of liquor.  With carbonated water, there weren't any other flavors so 2 shots of shrub made a nice fruity flavorful summer ...shroda (props to Kate for the portmanteau name).
cherry shroda!

Great for summer bbqs.  Kids or adults...

Drink responsibly.