Moving on . . .

Last year at this time I was bald, sick, scared and very sad.  I now know that there is no “other side” to this breast cancer craziness, and while there is plenty of “new” in my life, very little seems “normal” to me yet.  Someday, I hope to be able to combine “new” and “normal”  with ease, but for now I stumble and bumble, wishing my many weird post treatment side effects would subside much faster than they do and figuring out what I’m meant to do next.

In so many ways I’m a bit lost right now – but slowly I’m coming to grips with that and giving in to the grossness rather than trying to ignore it.  Wow – that sounds unbelievably dorky – sorry about that.  Maybe I’m out of sorts because my red couch is currently in a storage unit somewhere in Eagan, and I’m a bit lost without it – more about that later.

The uneasiness of not knowing what might be can be painfully difficult to navigate some days, and while chemo, radiation and surgery were all gross, the possibility that they will give me even one more day with Hop-a-Long and my Trio makes having endured every ugly moment of it worthwhile.  Still, I don’t know if it worked, and that feels like a giant question mark hovering over me at all times and I hate that.

While the GHQM (let’s get real – Giant Hovering Question Mark is just too long to type!) is certainly more subtle than being bald, and (gratefully) not as obvious to random folks at Target, in some ways and to those that know me well, the GHQM has changed who I am in big ways and small.  Some days the GHQM is barely there and some days I struggle to fit it in the car with me as I try to go about my life.  Truth – it’s been a harder pill to swallow for our family than we’ve owned – and while so much about life remains the same, still more feels weird and uncomfortable and sometimes hard.

Ok – time to move this along, as I really do have a point sharing this with you after far too long between posts.  I get that life has its messy moments for all of us, and that challenge is relative.  I’ve genuinely tried to sit down and pen something many, many times since April, but just couldn’t for too many reasons.

Because I must be time sensitive which is never easy for me when writing anything, I’m going to have to share things out of order while giving you just a snapshot of what’s been going on and what’s coming down the path.  I do want to give each of the following topics their due so consider these future red couch entries (even if ridiculously overdue).  So, here goes:

    

  • My “I’m Still Here” party was awesome in a million ways, and while my extended family may never forgive me after the stress I bestowed on many in order to pull it off in short order including a few epic meltdowns of my own, it went rather perfectly in the end.  The unseasonably warm weather made for a lovely spring day spent with amazing people from so many corners of my life, thoughtful notes from those far away and those who couldn’t make it, and memories I’ll hold near me for all my days.   The cleavage cake from Nadia Cakes set the tone (thanks Kristine & Chuck), and the slushy machine got a great work out as I am reminded of when my shoes stick to the hard to reach corners of our garage floor.
  • I’m taking part in a medication study and was selected to receive the study drug for two years.  This in addition to the hormone blocking medication I will take for 10 years (hopefully – thanks GHQM).  My side effects are remarkably similar to those that live in this house navigating puberty –  boy is that fun some days!  Fatigue, joint stiffness, thinning eye brows, systemic yeast just to name a few.  Yep – it’s a regular party around here (I wouldn’t blame you if you skip reading this one – I might).
  • Because of the lovely spring weather we enjoyed, I started doing a bit of running.  Well, I call it running, but I recognize not everyone would.  Trotting might be a better description.  This produced a number of unattractive, ridiculous and even hilarious moments throughout the mean streets of Eagan, including making small children cry.  Not sure if that was because of my weird looking hair or when I forgot I had headphones on and was singing the refrain from Arrested Development’s “Mr. Wendal” (2002)  This was likely very unfortunate on many levels.
  • My foobs are gone – and now I have noobs!  (Fake boobs to new boobs).  This has been quite a journey like no other complete with new vocabulary words like “side boob” – who knew?
  • Hair – I’m certain having to listen to me whine and complain about losing hair, being bald, and then struggling with gratitude for the craziness that is ever so slowly growing back must be growing old.  Finally, I have a positive update!   Tiffany from West Coast Hair Extensions is my new friend and has helped me craft just enough bang to feel like someone I sort of recognize.  I do have photos – and this may provide comic relief for some you for years to come.  I hope one day I can laugh – for now, I thank Tiffany for helping me even if it’s just an illusion from certain angles.   Also – she’s fascinating and has had an incredible life, which made for a really fun day.  I felt like I’d known her forever after about 15 minutes.  And she’s a talented artist.  I dig her.
  • The trio has completed another school year.  3 kids, 4 schools, and a village (a fairly large one to be fair) of amazing folk helping us navigate our particular brand of craziness – especially this year.  This will be tough to write about, even more so because of the uniqueness of the experiences for each of our offspring.   Even though everyone has been in different buildings, because we are one family, what happens to each impacts the others.
    • E – Dramatic highs and some sobering lows.  Amazing folk who have helped to give him experiences we could never have imagined just a short time ago, and other things that should never have happened, and that took a tremendous amount of effort to repair, but because of a kind and caring village and open communications genuinely did repair .  Most of all – a reminder for us that while Tom & I will always be E’s biggest fans, this journey is his.  Even when it got unbelievably hard, we tried to keep that front and center while facing some tough decisions.  In the end, we feel positive he is where he needs to be, and where he wants to be.
    • H – Truth – I’ve rewritten this section at least 10 times so far, and hoped that waking up at 5 to tackle it when things were quiet around here might help – not so sure that was a great plan, but here goes.  To be quite blunt, Henry’s middle school journey didn’t have to be as challenging as it was and I am sad and hurt by how things were handled.  With permission from Henry, I’m referencing a series of escalating mental health issues that we sought help with even before my breast cancer diagnosis, and to put it simply, were told no.  (It’s not quite that simple, we’re not referencing the vast majority of the amazing day to day educators he worked with, we get the exceptionally limited mental health resources available in our schools, and with Henry’s help, we’ll share more in hopes of preventing this type of situation for other families.)   Henry will move on to high school this fall, and in some ways we’d all like to move on and not look back, but we face the difficult decision of choosing where Ada will attend middle school in one more year.  At this moment, my lack of faith due to what happened with Henry makes it hard to envision that this building could be a very different experience for our girl.  But the thought of ripping her away from friendships that have taken hard work and many years to foster feels like a worthy reason to try to inspire some positive change.  Speaking of the girl – it’s time to share some amazing!
    • A – We want to adequately honor the enormity of amazingness that was Ada’s 4th grade year – because of the incredible Mrs. S!  Ok – I’m already tearing up – there were so many amazing and beautiful moments sprinkled throughout the year that inspired much positive growth and change for Ada – all because of an incredible educator who just “gets” it.  Having heard how pivotal and often difficult 4th grade can be for girls on the autism spectrum like Ada, we were worried that my having cancer combined with Ada’s social difficulties and splintered academic skills would significantly limit her time with her mainstream peers.  Because of Mrs. S. – that didn’t happen, and in fact, it was quite the opposite!  Ada loves her school and has worked with an amazing special education resource team for years.  She’s always had great teachers, but we knew 4th grade could be a game changer.  Because of all that, likely from being in the midst of “red devil” chemo,  I went from being a bald/frightened crazy mom the month before school started to crying/gratitude filled crazy mom with awkward hair just a few short months later – because of the amazing Mrs. S.  Most importantly, Ada’s life will forever be richer because of this amazing and kind educator who went above and beyond in every way when Ada needed it most.  We will forever be grateful.  Life.  Changing. Stuff.

Ok – so hopefully this gives you a snapshot of what’s been going on in our little corner of the world since April.  So why the heck am I up at 5 a.m. scurrying to throw this together?

Because we are moving.

Isn’t that crazy?  Had you told me in April we would be moving to a different house before the next school year, I wouldn’t have believed you.  Truth told – we are still in shock.  We were not looking for a different house, and this all came to be in a mere 24 hour time-frame.  We’re not going far – .6 miles to be exact.  No school changes for anyone and Elliott can still get to CVS with remarkable speed to check all the latest deals.  It’s a whole lot of change, but not really anything other than the house.

Tom & I built this house 17 years ago this month – this is the longest either of us has lived anywhere.  We have many wonderful memories that we’ll carry with us, and this is the only home our 3 kiddos have ever known.  We have wonderful neighbors and have done many things through the years to make our home work for our ever changing family needs.  It’s a perfectly fine house – truth be told, we just need a change.

For all the amazing, we’ve faced our fair share of challenges within these walls as well.  It just feels like the right time to start anew in a different home and create some new memories.  It does have a little more room, and a quiet, nature filled back yard that made all of us smile.  For some reason, the stars aligned, we have the support of family, and we hope to be situated before the start of the school year.

Which is why I’m up at 5 a.m. writing – because sorting through 17 years of life with 3 people who have never moved is time consuming and stressful.  The trio likes that nature filled back yard, but not so much packing up boxes and preparing this house for sale – hopefully by next week.  Yikes!

There is much uncertainty about how all of this will go, and without a doubt we will put our own unique spin on all things moving.  We take for granted our positive rapport with our neighbors – who knows what the new folk will think of us?  But with change and uncertainty comes hope and possibility.  No matter how tough some of the next few weeks will be, we will get through it all with forced teamwork and bad 80’s music.  Fingers crossed.

Hopefully, you will be able to join us in the new backyard soon to frighten some new neighbors.  Heck, maybe we can all have some fun shouting NATURE!

 

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Run, E, run!

Many years ago when we were first processing and accepting Elliott’s diagnosis, Tom & I made a decision that while autism was always going to be a part of our family, that we would do our best not let it define us.  Truth be told, especially in the early years – it was easier said than done, and there were some periods of time in there when we failed miserably.  Ada’s diagnosis a few years later added a new layer of difficulty to our goal, but we still hung on to that hope and slowly but surely, we sort of evolved into our own unique brand of family funkiness – including autism, but not defined by it.  Sure, there are still days here and there where autism seems to fill every inch of space in this house, but there are just as many days when it’s just hanging out in the background.

Now it’s time for cancer to do the same.  Let’s face it – cancer is gross, scary and completely overwhelming – not just for me, but for our whole family.  It really has taken over my life and by extension that of our family since March, and has been all consuming.  Going through the trauma of diagnosis, learning after surgery that what we thought we were dealing with was actually quite a bit more serious (stage 3A instead of 1), and then digesting really icky percentages regarding recurrence and beginning a long road of treatment that won’t end until December.  All icky and gross.  Blah.

So much of these last few months is a total blur to me – it’s like a giant swirl of the most horrific and unimaginable nightmare possible combined with some of the most incredible gestures of love and kindness our family has ever known.  We’ve met even more amazing people on this new journey, and learned that despite our many faults and failings that when something really awful like this happens, people in your life show up and give the very best of themselves to you.  Makes me weepy even thinking about all the big and little things that have gotten us through this far – humbling doesn’t even begin to encapsulate it.  My heart runneth over.

While cancer (at least the treatment aspect of it) will remain in the forefront for me for many months, it is slowly but surely becoming just another part of my life.  The really gross red devil chemo treatment is done, and I’m tolerating the new treatment (Taxol) much better.  Sure – my hormone levels are whacked out and I’ve been a bit edgier than I’d like to be, but frankly, it helps me relate to the teenagers that live here.  I’m also not a giant fan of steroids that make me swell up like a balloon – but then I remember that it prevents life-threatening allergic reactions to Taxol, and I apply my women’s Rogaine and go about my day – puffy but also more present in the lives of my trio – I’ll take it!

Speaking of the trio – they rock!  While Tom & I have each faced health challenges this year that have made us slightly ridiculous parents, they have stepped up in new and surprising ways, and we’re realizing that all those years of chat about how families stick together and help one another during thick and thin must have actually sunk in on some level!  Let’s just say if any of us were wearing clean clothing during April, May or June – it was because of the trio.  Sure – there was plenty of whining involved – but to be fair, likely less than from their dorky parents.  Without a doubt, our offspring have weathered the ugliness around here far better than either Tom or I, and our pride runs deep just thinking about how each of them has made the best of an otherwise crummy year.

This week is a perfect example.  E man has accomplished something that not that long ago seemed truly impossible, and he’s doing it with his own personal style and with the support and encouragement of many amazing people.

Here’s what I posted on Facebook a short time ago about it:

senator clausen and E

Last winter, my special needs Mom pals (Heather TiddKelly Sue Kausel) & I asked to meet with our 196 Director of Special Ed., Mary Kreger, about community inclusion and the many ways we can come together and improve upon what exists today. For some crazy reason, she said yes! Despite their busy schedules, our Senators Jim Carlson & Greg Clausen attended as well because they have invested time and energy learning and understanding more about families like ours, and how they might be able to contribute ideas and solutions. I’ll never forget sharing that it is just not feasible for our Elliott to participate fully and independently in extra-curricular sports and activities, and how sad that made me, and most importantly, Elliott. I was suggesting some alternative recreational possibilities for kiddos like E when Sen. Clausen asked me how and why E wasn’t able to participate in any of these school activities? He reasonably wondered if given the proper plans/supports this could work given inclusion with his typical peers would seem the ideal whenever possible. While I tried explaining the many obstacles our family has faced doing just that, I couldn’t stop thinking about it & it weighed on me that I had in a sense given up. It hurt. Two days later he called me and passed along the contact info. for a 196 sports coordinator willing to help us. Suffice it to say, Sen. Clausen was right, and thanks to him, I was reminded of what true community inclusion can look like when lots of committed people work together. I’ll never forget that lesson nor his going above and beyond to help our family. Because of the generous inclusive spirit and commitment of many, today I can share with you this photo of Sen. Greg Clausen & the newest member of the Eagan High School Cross Country team, Mr. Elliott T. Kramer. Thank you, Sen. Clausen, for caring about community inclusion and working hard to make it happen for our family and countless others! Run, E, run!

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When I penned that we had just heard from some amazing and helpful school administrators at E’s various educational settings that the Cross Country Coach would happily meet with us and give him a chance, and while I own that part of me was so anxiety ridden I didn’t sleep for a few nights, I was also unbelievably excited and proud that E was now ready for something like this and that we were honoring his hard earned wish to participate in a school sport.

Last Friday, as I sat around a table with E’s amazing Special Ed. Coordinator, Mrs. T. and Coach B., I realized once again how deeply many of our educators want to make a difference for kids and their families.  Taking time out of their summer, agreeing to meet with a crazy, bald mom who cries too much, and strategizing terrific and creative ways to utilize E’s many strengths while also preparing for the inevitable bumps in the road – it was amazing and positive, and all of a sudden everything felt more hopeful.   I left that morning realizing how far E had come since the monumental challenges he faced in middle school, and while the 2 buildings share a parking lot, it suddenly didn’t provoke my own anxiety levels just being there because E’s toolbox is filled with lots of new strategies, an incredible support system, and a strong desire to succeed.

This Monday morning at 8 a.m., E & I pulled up to the front door of the high school for his first practice.  He flat out refused to allow me to walk him in and then was even more insulted when I asked if I could photograph him in front of the Eagan High School sign on his first day of Cross Country practice!  All I got was a bad shot of him running away from me as I hung out the car window, and to be fair, he was in the right.  (This one was at home – still not pleased with me for wanting to document the day).  e cross country

It took everything in me not to immediately reach out and find out how his first day had gone.  He was tired from his long run, but all smiles when I picked him up.  Still, he didn’t want to overshare, and reminded me this was mostly his private business and that he would let me know if I needed to be aware of something.  While I knew deep down that I would certainly have heard about any serious challenges, it was still exciting and scary to let him be on his own, hanging out with a group of typical high school guys and doing his best to fit in.  Something that we had always hoped for him, and more importantly, something he wanted for himself.

Then, the email arrived from Coach B.  You know the kind – the ones that make your autism mom heart swell and nearly explode out of your body.  Here is an excerpt:

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Hi Kammy,

Just wanted to send you a quick email.  The first two days of cross country have been great and Elliott seems to fit right in with the team!  Coach M ran with Elliott on the first day and helped him with strength training after.  And today we did a workout as a team and he did AWESOME!

Please let me know if you have any concerns on your end but as Coaches we think it is going great!  We are glad to have Elliott out for the team 🙂

______________________

Yep – you know that one’s getting framed!

I let E know that Coach B thought he was off to a great start, but he told me he already knew that because he checks in daily.  Still, I could tell he was proud.  And after running several miles every morning and using the weight room he’s extra mellow the rest of his day, and frankly quite pleasant to be around.

He’s even inspired Ada & I to start some morning running – well, it feels like running to my water-logged steroid filled body as I sweat and turn red and look next to me while Ada is simply strolling with an occasional jogging step and lots of dancing hands.  At least she encourages me even if she doesn’t like my “old mom music”.  Come on – “Hippie Chick”?

Today, E is baking up a storm.  He arrived home earlier this week with his Cross Country fundraiser packet, and told us he needs to raise money for his team to have enough coaching help, for team awards, and for post meet treats.  While we’re grateful this does not involve wrapping paper or magazine sales, it’s been a challenge for E to practice his sales pitch.  His Grandmother’s got some interesting phone calls, and then we decided to play to his strengths – brownies and monster cookies!

The trio has been converting our basement from a toy area to a teen hang-out, so after clearing out the items they are ready to part with (yes, even Henry the packrat), they have decided to do a garage sale/bake sale tomorrow (Saturday) morning.  The proceeds from their “stuff” will fund whatever fun extras they choose when we spend a couple of days in the WI Dells next week, and the bake sale proceeds will benefit E’s Cross Country team.

So, if you’re around tomorrow morning, pop over to our house for a cookie or a brownie and give Elliott a chance to practice his “please support my team” pitch.  It’s likely to be a bit rough around the edges, but he’s determined to do his part.  As always – with his own unique spin.

Run, E, run!

 

 

Bad Breast Cancer Day

bunny 3

Yesterday was a crap day.

Not even going to try to sugar coat that one, nor pretend that I dealt with it as best I could. In short – I didn’t.  I just fell apart – multiple times, in front of my children, my cats, and some random guys who were here pounding really loudly on my kitchen floor.  Yep, that was awkward.

So, here’s where I’m at. Really gross radiology appointment where I was first told I had a very suspicious mass that was likely cancer, followed (a few days later, no stress there) by a biopsy where I learned it was actually two areas, and then the phone call revealing both biopsy sites confirmed breast cancer.

Note – that few days between the radiologist telling me I’m likely in for one really difficult year to confirmation that it was indeed cancer was when the fear was craziest and I was barely functional. Really the only thing that kept me remotely able to get through the day emotionally was some serious anxiety medication from my health care provider that had me sleeping almost constantly.

Next was my initial meeting with my surgeon, and while that likely sounds super scary, it provided a small sense of comfort. She was soothing, honest and upfront about what she felt was going on – two fairly small areas likely not connected, and no obvious signs of spread to the lymph system from the radiology reports.  She was straight up about my need for mastectomy instead of lumpectomy, but to be fair, I think there was almost a sense of comfort about that just because of who I am and where my mind travels during the dark.  Knowledge is power, and she laid out something far better than what I had feared during those days between finding “something” and meeting her.

Then, the reconstructive surgeon appointment, which once again was oddly soothing. Part of it was just him – he’s very good, and deals with sad women thrown into this crappy situation all the time.  Still, his large 3-ring binder filled with before and after photos provided a small sense of comfort, and the visual confirmation that a year from now, my new “me” might be ok (depends on “side boob” according to my friend Sarah, but let’s save that discussion for another day).  Maybe the best part of that appointment was when he acknowledged that while this was emotionally devastating for me, that for him and for my cancer surgeon, I had what he referred to as “garden variety breast cancer”, and there’s this odd sense of comfort about being what they suspect is kind of ordinary in this situation.

Next up – surgery scheduling. Ok, here’s where the funkiness begins.  Both of my surgeons practice at different hospitals, but connect a few times a month for people like me.  They are also both kind of awesome, which is beyond fabulous for me, but not so easy in the hooking up for surgery department.  On top of that, my breast surgeon was out last week on vacation, so my very sweet cancer coordinator could only tentatively schedule my surgery which we penciled in for April 4th – my birthday.  She told me that the surgery was a bit later in the day than typical for my breast surgeon, and she didn’t anticipate a problem, but also didn’t want to interrupt her vacation to confirm so she said I’d hear back on Monday.

The trio has spring break this week, and (of course) the contracting company our insurance company has on board to help restore our dishwasher flood damage is starting their work this week. It was Monday afternoon before I realized I had not heard back, so I sent a quick email to my coordinator.  That’s when I learned that she is now out of the office on vacation, and her fellow coordinator is helping her out this week, so I forwarded my note to her.  It was late Monday by this time, so it didn’t surprise me that I didn’t hear back.

Yesterday (Tuesday) morning, I received an email from my coordinator’s partner, and that’s when I suspected an issue. Though I had explained that I was just waiting for my confirmation on the time for the 4/4 surgery date, instead her email was something like – ok, just confirming that we’re doing a double mastectomy with reconstruction, right?  And then letting me know that the surgery scheduler would be calling me shortly with further details.  Red flags were up – I took extra Prozac and made sure Elliott was up to date on his cannabis.

Late morning, I got the call – it didn’t go well. She told me she was confirming my surgery date for April 18th, and then I lost it.  Literally just freaked out – not in anger, zero to ugly cry in 2.2 seconds complete with sadness/confusion/alarm & exceptional discomfort.  I told her I was confused as we had been just waiting for a time confirmation on the 4th and she explained that the earlier procedure my surgeons are completing together on the 4th is a complicated case and they just couldn’t squish me in.  I was devastated.

So, in the midst of all this, the guys working on preparing our kitchen floors for installation left our front door open, and the kids could not find our rescue kitten, Franni, who loves to run fast and climb tall trees. That said, here’s the scene, sad kids in tears about not being able to find Franni (except Elliott who just kept yelling “2 cats is enough – just let her go”, exceptionally loud pounding and sanding machines creating a sort of fog, and some emotionally difficult news from my surgery scheduling friends.  All this, on the only decent weather day the kids are likely have this “spring” break in MN which naturally already has my mom guilt on high.  Suffice it to say GIANT ANXIETY ATTACK.

I couldn’t even form sentences, so I texted Tom with the details, and he immediately sprang into action. He called Carol, who is the amazing coordinator the biopsy radiology center has that actually chooses to work with crazy people like me.  She’s the kind of person I’ve always wished I could be more like, and has what I would imagine is one of the hardest jobs ever – calling people and telling them they have cancer.  Believe it or not, she does it as gently and with as much grace and compassion as is humanely possibly.  Rather than remembering for the rest of my life how horrible it was to get that phone call, what I know I will remember was the skill, care, compassion and heart that Carol utilized.  She’s just all around good people.

You see, Carol is the reason I even got in with my surgeon. As often happens in my crazy life, different paths collided, and the sweet nurse that works with the biopsy radiologist who had my case was an autism mom.  She even “got” what the heck I was talking about when I told her it would be difficult for me to drive up to Maplewood, get my original disk of scans, do an IEP meeting and then head off to a biopsy appointment in Edina.  She went above and beyond to help me (we even talked social IEP goals for girls), and she hooked me up with Carol.  Carol used to work with Dr. Bretzke, and had booked my appointment with her prior to even calling me with “the news”.  She’s that good.

So Tom detected this was kind of a big deal to me (yes, I’m deleting some vocabulary words here that shouldn’t be in print but you can likely imagine them and insert them right here) and reached out to Carol – they were also breast cancer bff’s by now. She somehow worked some magic with people who help coordinate two ridiculously busy surgeons and their schedules, and I am now booked for surgery at 2 p.m. on April 6th.  There’s a whole bunch of in-between that Tom hasn’t even shared with me about how this went down, but I’m certain it was gross.  All in all, Tom Kramer is all right, and I am lucky to have him.

The 2 week delay thing – well, it was just too much. I know that it’s just my anxiety, but in my darkest moments, I can just see those sneaky, creepy little cells cruising around and hiding somewhere and every day that I wait around with my poisoned, bruised (from biopsy) right breast gets more difficult.  Logically, that’s not consistent with what I’m hearing from my medical team, from the articles I’m reading, etc. but that’s just who I am, and the Prozac is not taking that away.  The boobs need to go, as that’s when I’ll get more concrete answers about what the heck is going on in there, and the best ways to keep it away.  Whew – I’m grateful my village worked some magic, and that the path ahead seems to be coming more and more into focus.  It’s just a journey I’m not so comfortable with in general, but no one is, right?

About 30 minutes after this fun, a migraine came on at full strength, the pounding and sanding in the kitchen got louder, and the meds got stronger. It was just not my day – emotionally and physically, I was dangling at the end of my rope – and feeling like a crappy mom who doesn’t know how to share any part of this process with my trio without scaring the crap out of them.  Autism and Breast Cancer are going to continue to be a very funky mix – I’m not at peace with facing both simultaneously yet, but it’s not my choice to make.

Frankly, everything about this is just overwhelming – people are truly good, and often junk like this brings out the very best in folk. It’s like having the creepiest thing imaginable (cancer in this case) remind you that no matter what, when something like this happens, your village appears, and shows up right now!  It’s humbling – it just is.

Ok – two small ASD related updates because let’s face it – my breasts have dominated my thoughts and this blog a bit too much of late.

First up – E man. Remember all those amazingly long and depressing red couch posts over the past 2 years about how E and middle school don’t pair well?  Since last spring, he’s been hanging out in his smaller, more structured school, and while we worked through a road bump or two – he’s been having some rock star success.  Get this – I just received one of those IEP Progress Reports school sends out that usually make me want to puke detailing any progress toward specific IEP goals, and he’s already met 2 of his goals (remaining on-task with non-preferred tasks & appropriate social interactions including sensitive subjects).  Best of all, because of his hard work, determination and appropriate self-advocacy, he started attending Henrys middle school last week (no, I’m fairly certain Henry still has no idea and yes, we told him) for a 1st period math class each day, and it has been very successful thus far!  He told me he got to meet the Principal, but “not in a bad way – in a manners way”.  E man rocks, and so does medical cannabis.

Second, Ada’s IEP was last week. Sure, IEP’s and breast cancer may not seem fun, but I’m going to flat out say it – this was by far the very best IEP we’ve ever had for Ada.  Not because she doesn’t continue to face challenges navigating a mainstream setting as a girl with mild autism/language deficits, but rather because we’re all the on same page.  Her team just “gets” Ada, and we even got to brain storm with one of the amazing special ed. coordinators to get some social goal ideas for girls (this can be quite tricky), and she had some great ones.  Ada’s pride about her school and her blossoming social connections are hopeful, and I think we’re all prepared to hoist that bar just a little bit higher, and empower her to embrace 4th grade with zest. Ok – that was a bit overly optimistic, but I think you get it.  The girl is happy, holding her own, and continuously trying to boss the brothers around – win-win!

No, I’m not purposely leaving Henry out here, but he has inherited my anxiety and is not quite himself at the moment.  Positive goals & meetings forthcoming.  That said, he has used spring break to share with Ada why people laugh when talking about the planet Uranus.  I’m certain the 3rd grade educators will be thrilled with this development!

Last night, Ada and I were reading the new book our friends from Amazon delivered – “Have You Filled a Bucket Today?” which is a charming little story meant to encourage young folk to be kind and spread good will by “filling buckets”. The book maintains that every person has a bucket, but it is imaginary, and it can be filled or depleted based on your actions (you get the drift).  My sweet, creative, somewhat literal Ada G really enjoyed this story, but struggled with the whole imaginary bucket concept.  We decided to sleep on it.

This morning, I was doing paperwork on the red couch when she appeared at the top of the stairs holding a small stuffed t-rex, an overweight Siamese cat and mismatched pj’s and said “Mom, my bucket kind of hurts this morning”, and you know what? For some reason, that just made complete sense to me today.  My bucket kind of hurts too . . .