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:

________________________________

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!

 

 

The Red Devil (hint – it’s gross)

I was a senior in high school when “Purple Rain” came out. I’ll never forget loading up my parents’ old rust colored Vega with some girlfriends and several foreign exchange students and going to see this Prince guy on the big screen.  Let’s just say he seemed more than a little worldly and quite the hipster to kids coming of age in small town rural Minnesota.  His look was remarkably different than anyone we’d ever seen before (no one at the legion ever looked anything like him – and let’s face it – it’s not just anyone that can pull off that much purple and sequence).  For once, it felt almost cool to be from Minnesota.  His music is embedded with so many memories of my final year of high school, my college years and well into my 20’s that it jolted me in ways I didn’t expect when I learned of his passing.  While I can’t claim to have been the biggest Prince fan on the planet – I did love some of his music, and I vividly remember that line in “Let’s Go Crazy” about punching a higher floor because of the fascinating dance moves we all had for that part of the song.  Learning that he was discovered in his elevator made me hope in some profound way that he found his way to that higher floor.  I wish him purple peace.

Pondering your own mortality is fairly unpleasant – at least from my perspective. For me, it’s always been in the abstract, though every once in a while it bubbled up mostly as it relates to having kiddos with life-long disabilities and the fear of not doing every single thing in our power to help them in the here and now.  Still – the topic is unsettling at best.  Breast cancer has changed all that for me, and in big and small ways, I’ll never be the person I was before my cancer diagnosis.  That still feels weird – I was really ok being pre-cancer Kammy – with all the funkiness and imperfection that involved.  But having a clear PET scan gave me a glimmer of hope that I have a shot at becoming post-cancer Kammy – likely just as funky and imperfect, but also filled with hope and possibility and quite a lot of gratitude.  Ok – I’ll own it – continued inappropriate humor as well.

Following the news I received about my PET scan (no spread beyond the areas removed during my surgery) I got to meet my new oncologist, Dr. Zander. He’s a snappy dresser, and a bit serious but thorough, brilliant and with just enough kindness.  This is a person I hope to have a long and productive future working with – and I’m very grateful for the chance to be his patient.  He’s exactly the kind of person I believe can help save my life, and I wanted to have a positive first meeting, but also wanted to be me – so let’s just say I’m grateful I didn’t opt for my “Cancer is an Asshat” necklace during this initial visit.

Dr. Zander is the guy who had to give me my numbers and percentages after interpreting my surgical pathology report, and to be fair, they were gross. That said, I learned a ton, and he was patient with me when I needed time to process some of this information and then cry and say things like “that’s gross”.  He took the time to explain that the reason my cancer was so much different than what any of us expected was that it had lobular characteristics, meaning it hid quite well, and was undetected by all my mammograms until it started forming more typical tumor characteristics.  It kind of reaches out in little arm like fashion, and so even though it was measured at 10 cm from end to end, he explained that it wasn’t like I had a solid baseball hiding in my breast – that within that tissue, much of it was healthy.

Still, because it was so advanced, and because of the spread to my lymph nodes (which he said he would have expected to be far more significant considering the size of the tumor) my stage is classified as 3A, and my chances of recurrence are larger than most. That said, I need to treat this aggressively with a dose dense regimen of chemotherapy followed by 6 weeks of radiation and then hormone therapy for 10 years.  Even after all of that, my chance of recurrence is still 30%.  Yep – that was a bitter pill to swallow.  Still, I needed to hear it, and to recognize that no matter how gross these next steps are – they are my best shot at staying in the 70%, and therefore, I got a good cry in, shared an IPA with Tom, photographed a toilet in my front yard (it’s now gone), and woke up the next morning with a more positive attitude.

My chemo will begin May 12th.  I’ve already had some sort of special heart scan to ensure that I’m healthy enough for the “red devil” which is the special name given to my more aggressive variety of chemo.  I’ll be getting 4 cycles of AC (Red Devil) chemo 2 weeks apart, and then begin 12 weekly cycles of a less aggressive chemo called Taxol.  I will lose my hair, and I hate that.  Everyone hates that, I get it.  I hate that it might be especially weird for my kids – so I’m doing my best to share all of this in bits and pieces and on the advice of my friend Sarah who has traveled this path 6 years ago, I hope to include them in the process and maybe take Ada along when I donate my hair to Locks of Love and just have it a shorter length before treatment starts to reduce my trauma.

Most days I have medical appointments of some kind, and it can be mentally and physically exhausting digesting everything. Still, these amazing oncology folk “get” that, and they do their best having worked with lots of others before me.  I’ve also been tremendously lucky to have support from near and far in making all this work – and that’s no easy task!

Thankfully – my sense of humor remains, and sometimes it’s all I’ve got. Tom aka “Hop-a-Long” since falling off a ladder 2 days before my surgery, breaking his leg, and wearing a boot and crutches wherever we go, gets much more attention than I do when we visit any medical establishment.  People are often trying to put him in a wheelchair or guide him to orthopedics and offer him candy, while I am left simply as his door holder.  Until I am bald, I’m considering a temporary “cancer patient” tattoo.  Whatever!

Our home renovations stemming from the dishwasher flood in February continue to be a comedy of errors. Last week, when moving the washing machine back to the laundry room from in front of the tv, something dislodged and caused more flooding when the contractors hooked it all back up.  Now, they must rip out all that flooring, reinstall, and deal with the water damage in Elliott’s new room located below the laundry room in the basement.  Ugh.  Sometime soon I will be able to locate our pizza cutter – it is likely in some box stacked on my red couch somewhere . . .

Autism doesn’t seem to care whether or not I have breast cancer, and although the kids are surprising us in new ways and stepping up while Tom and I are unable to do any lifting, etc., there are days that are more challenging than others. Trying to get plans updated and in place for everyone before chemo begins has been stressful – it could be I’m not always the biggest fan of special ed evaluation language as I’m much more comfortable sitting at a table and chatting things through over brownies.  But, I have faith in the system, and believe we can find common ground.  Plan B will involve me wearing a sombrero to all future meetings.  Wish me luck.

The kids were quite jazzed to welcome their cousins to MN last Friday. My sister, Kristine, her husband Chuck, Nikolas and Xander are Eagan’s newest residents!  They have purchased a home walking distance from us, and will be moving into it in early June.  Xander is especially thrilled with my chocolate chip supply and Nik will be starting at Ada’s school next Monday to finish out his elementary school career in style.  I’m ever grateful to have them here as the next steps in my treatment begin.  That said, I’ve decided to pass on Chuck’s suggestion to ask my plastic surgeon for bright flashing blue light breast implants that will signal my arrival from several blocks away.  Keep in mind he’s from Boston, and has yet to learn the importance of cream of mushroom soup and proper MN waving etiquette.

Most of all, we are enormously grateful for the kind messages, meals, cards, gifts and even people stopping by to see the toilet that was in our yard. When I was beyond frightened about the PET scan and asked for your support – you shared your well wishes, good vibes, prayers and even an interpretive dance number or two – it was humbling and helpful, and I will always remember that.  There is no doubt that cancer is very gross – but every day I’m astounded by how many people I’ve crossed paths with in my life that are reaching out from near and far – wow!  One of the nurses I’ve come to adore said it best – “cancer has a way of reminding us how much we are loved” and I now know how true that is.  Our family has had a really rough few months, but I know with every fiber of my being that what we will all remember looking back at this experience is the amazingness of those we are lucky enough to have in our lives.  Yes, even Chuck.

So take that Red Devil! Time to enjoy the children complaining about how awful it is to carry laundry baskets and scoop the litter boxes – all while I research wigs and listen to “Purple Rain”.

Love ya, man!

I Need You! Conquering the Grossness

Friends – things continue to be gross. Frankly, in epic fashion.

Here’s the deal. I tried putting off writing this update under the umbrella of having nothing nice to say blah blah blah, but to be honest, I’m not so great at dealing with all of this, and I’m hoping for your positive vibes yet again (yes, I’m being greedy).

Let me back up just a moment and give you the low down so you know what the heck I’m even talking about. Last Wednesday, I had my bilateral mastectomy surgery.  The plan was to remove the 2 small tumors that had been identified by my biopsy , and check my lymph nodes to ensure this cancer craziness has remained in the breast only.  Guess what – sometimes things just don’t go your way, which I’ve been able to demonstrate repeatedly on this crazy  journey nearly every step of the way thus far.

When I woke from the surgery, the first question I asked Tom was about my lymph nodes. I was more than a little devastated when he had to tell me that the sentinel node had tested positive, and my surgeon had to remove additional nodes for testing.  I couldn’t even speak – just tears running down my cheeks – it was about the worst news I could imagine.  Except it wasn’t. (Cue dramatic music)

Friday morning as I was preparing to be discharged from the hospital, my wonderful breast surgeon, Dr. Bretzke, arrived in my room and let me know the pathology report was in a bit earlier than expected. She let me know that the 2 small tumors they thought I was dealing with in my right breast were actually 1 very large tumor measuring 10 cm, and that 2 of the 16 lymph nodes she removed had tested positive for cancer, so I was now being classified officially as stage 3A.  I could barely speak nor function. Even her quiet confidence didn’t soothe me – not one little bit.

Talk about kick you when you’re down (not my surgeon who did all she could to help me, I just mean the whole damned process) it’s pretty crummy to be doing your best to recover from major surgery only to learn that things are significantly more serious and life threatening than expected. Let’s face it – things were decidedly not going my way.

Dr. Bretzke then informed me that because of my standing as a stage 3 patient, I was automatically required to undergo a PET scan which is an imaging test to check for possible cancer invasion in other parts of my body. That lovely little test is scheduled for tomorrow (Thursday) and I won’t learn the results until sometime on Friday.

Here’s where you come in. Friends – I have had absolutely no luck thus far on this crazy cancer road, and to be honest, I could really stand a little good luck tomorrow.  Not lighting up that scan like a Christmas Tree would be kind of awesome, and I would certainly be grateful for that tomorrow.  Even so, what I’m learning is that I face a very long, difficult road ahead of chemo, radiation and hormone therapy and to be blunt – I’m in for the fight of my life.  This is so gross I can barely type it.  I hate this post, and I hate having to ask for your good vibes, prayers, well wishes, etc. once again.  I so wish I didn’t need them, but in fact, I do.  I need them a lot because I’m about as terrified as any human being can possibly be before sliding back and forth on that scanner tomorrow.

Ok – it wouldn’t be a red couch entry without some kind of positive spin, and believe me when I say it’s been a stretch this week. To be fair, I wasn’t trying to be a jerk about not updating everyone, but this has been a tough one for me to wrap my own head around, and truly, I kind of thought it might be easier to wait to post anything until I had the results of the scan.  But, I think I need to feel those good vibes from my amazing village (if you have any to spare – Lord knows I’ve been greedy lately) before this damned appointment tomorrow, and therefore I’m spilling it in hopes of any sort of positive news from this test.  Seriously, I just have to believe I’m due to have even a hint of hope – it would be kind of awesome at least.

People are unbelievably kind and know how to convey it in meaningful ways that make me realize I need to buff up my own skills. Truth – I’m an introvert by nature – often needing lots of alone time to process things, write, ponder, and make action plans.  Sometimes I get way overwhelmed by too many meetings and things, but this always goes in spurts for me and has to be about things I’m completely passionate about or I don’t do well.  Don’t get me wrong – I adore people, and appreciate the variety and depth of friendships/relationships I have accumulated throughout my funky, slightly left of center life, but I’m not what anyone would describe as a people person.  I never know what to say to people, I struggle to put into words anything that makes sense when crummy things happen to others, and I am not such a great friend to most people in my life because my children take up the majority of my time and energy,  and I don’t have much left over.  In short – I’m kind of an asshat in a multitude of ways, even though I wish I weren’t.  It’s a work in progress – I’m trying – but being a good friend is not a strength for me despite my genuine compassion for others.  All that said – while I clearly don’t deserve it, I have somehow collected some of the most amazing, compassionate, caring people in my life that are stepping up, showing support and compassion to me and our family, connecting me to people who know this journey, cooking meals, sending me cards and gifts, and just going above and beyond in general.  Tom and I are humbly in awe nearly every day – for a couple of so-so asshats, we have the coolest village on the planet, and no matter what this crappy scan says tomorrow, I hope that’s what I’m thinking about and remembering no matter how awful the news.

The kids are hanging in there. I’m sharing bits and pieces at a time as not to overwhelm them.  They know I face a long course of treatment, and I’ve shared with them we are going to need the support of our family and friends in order to make this summer work at all.  I can’t even go there right now because the thought of how this is going to affect my offspring is just too much to bear at the moment, and needs to be a different post.  But I’m sad.  Yes, I will spin this positive, and they will learn great life lessons and we will find our way together as we’ve done so many times before with other crazy stuff, but I’m just sad, angry, frustrated, and overwhelmed about it at the moment.  It’s so gross.

Yet, my physical recovery is going better than I expected. I feel quite strong most of the time, and am healing nicely.  I’m not out and about yet, but by next week, I hope to start getting back into the swing of things a bit more.  All of this makes the kids feel confident and our house not so off for them. They continue bickering about who gets the biggest piece of something sweet or who hid the Doritos remain constants.  Frankly, it makes me smile.

So, that’s the scoop. I’m grateful for all the love and support you’ve shown to me and our family over this past month, and humbly ask for your support as I face “the scan” tomorrow.  If you are willing to cross your fingers and toes – I’d appreciate that as well. If you see fit to knock on a few extra pieces of wood – all the better!

It’s a beautiful, sun filled day today. My friend Sarah came to sit on the deck with me and laugh and share stories and let me be sad.  Let’s take some of this vitamin D and turn it into some good news tomorrow – shall we?  If I’m going to get any, this would be a great time to start with the positive stuff.

Last, thank you, wherever you are, and however we are connected – I appreciate you. This process is scary and overwhelming and unbelievably gut wrenching, but despite me being a little too hippie-esque, I believe in the good of people, and have been able to see the very best of what so many people have inside them and consider that a true gift.  I believe that can trump cancer – at least I hope so . . .

Bad Breast Cancer Day

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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 . . .

Breast Cancer, Autism & Home Remodeling – why not?

 

Ok – things are still gross (just want to throw that out there – I’m nowhere near ok with this craziness yet), but bit by bit, they are taking shape, and every once in a while, I feel like this is going to be doable. Most of the time, I remain kind of crabby and wallowing in self-pity, but I have found my way to inappropriate humor for fleeting moments, and for now, I’ll take that.

Yesterday, I got to meet my reconstructive plastic surgeon, Dr. Migliori, and he’s my kind of people. I had heard from my friend Sarah who has traveled a similar path that he was the bomb, and indeed, he really was.  He expressed compassion, he inquired about our children and how they were doing with all of this, he made discussing boobs as comfortable as possible, and best of all, he “gets” that ridiculous humor is going to be the key to me making it to the other side of all of this crap.

We looked at photos of lots of different breasts, which were all different women he had worked with, each with different “case numbers” below them and no doubt hundreds of cancer journey tales both different and similar to mine. It felt strange looking at breasts and envisioning what this process will look like and feel like during the different stages of reconstruction.  I needed to do that, but it was still funky.  Sure, it wasn’t horrific for this mom of 3 in her late 40’s to hear that in all likelihood I will be able to go running in a year without any form of “support” and be rock solid (I’m still frankly dismayed by this!), but I’d no doubt rather stick with what I’ve got and accept gracefully what age, experience and gravity have done to me.  Importantly – because of cancer that choice is no longer mine, and so, I’m trying with all my might to see any hint of faint rainbow at the end of this very ugly storm.

Most of all, he was kind, he acknowledged how painful, icky and jarring it is to be thrust into all of this craziness so abruptly, and he assured me that while he could not take all this grossness away, that he could do his best to help me feel like a new version of me complete with tattoos if I choose. Wow.  He really does “get” this, and I am beyond lucky for the chance to work with him, and with my breast cancer surgeon, Dr. Bretzky.  They team up for this type of project – roughly 1 ½ hours per surgeon, which frankly seems remarkable to me.

After the scheduling teams chatted, they reached out to me this afternoon to let me know we’re tentative for April 4th.  Ironically, that’s my 49th birthday.  They asked if that was a problem for me, and I said no – these rogue cells need to be gone, and that seems as good a birthday gift as I can imagine this year.  Game on.

It’s been a crazy few days filled with ups and downs and kind reach outs and seriously whacky situations galore. My aunts came to town in an attempt to cheer me up despite me sharing what a crappy place I was in.  Indeed, they did get me out into the sunshine, made me laugh, helped me do fun junk with my offspring, and prepare our toes ready for spring.  Sometimes I was a crying jerk, but that’s not that unusual to be fair.  I don’t deserve them.

Sunday afternoon, Ada shared with me that she didn’t want to hug me as she didn’t want to catch my cancer. She also said that Elliott told her I was going to die soon because of cancer.  This caught me off guard, and I tried with all my might to keep it together while bringing the trio up to speed on what we know and don’t know at this point.  Our discussion was honest, and while I can’t promise my kids I’m going to be fine, I did let them know that everything I’m learning from my medical team thus far is positive.  I hope to be here causing great problems for them well into their adulthood.  Come on – they owe me that!  This situation reminded me this needs to be an ongoing dialog done regularly.  Just another new spin on ASD for our family – we’ll just need to keep learning together, and we all have a long way to go figuring out how to do this.

Yesterday, my friend Kris came over and was an enormous help distracting me before my surgery consult apt. Our kitchen/living room area is still completely ripped up/nails exposed floor as we had decided weeks ago to take this opportunity (given to us by our faulty dishwasher last month) to make some additional changes to our kitchen layout.  While this kind of thing overwhelms me anyway, throwing in breast cancer as we prepare for home renovations is just plain crazy pants.  She had me out taking photos of light fixtures, carpeting, and even cabinet hardware, and I only cried a few times.  She easily downsized our giant bag full of samples and craziness into a small ziplock – and that really does rock!  Without her, Elliott and Ada would have bright pink everything.

Today I got to accompany Ada’s class on their field trip to the zoo. It was actually quite fun to just forget about all the ugliness of thinking/planning the upcoming months and just hang out with 3rd graders watching penguins bicker about who got the biggest fish snack.  She loved it, and sometimes it’s nice for me to just recognize how far she has come on days like this where all the kids just enjoyed one another and laughed and negotiated where to go next and which animals smell the worst.  I need to remember this day when math makes her want to resign from school again.

While the field trip was fab, we did have a fascinating exchange at the bus stop this morning. Ada and I were chatting with one of our neighborhood pals waiting for the bus, and out of the blue Ada looked at me and said “Mom, I’m not going to touch your breasts – you know, because of the cancer” – yikes!  Just then the bus pulled up and while our friend looked a bit freaked out, I’m quite certain I did as well.  Just another reminder that we’ll need to find a way to work on socially appropriate breast cancer dialog or our check-out friends at Target are going to be hearing all about my breasts in no time.  Wow.

Most of all, this remains a roller coaster. I have so many thoughtful, heartwarming, and encouraging messages/notes/emails from people that I haven’t even come close to responding in a timely manner and thanking them.  I feel like a big jerk as I hate not feeling like I’m using my friendship skills and manners, but right now, I’m just not able to be on top of things.  Trying to get things – yes, even big-deal-important things – in order before surgery and whatever comes next is stressing me out a lot.  I know I can’t keep up with what I do now, but how the heck can I not?  We will muddle through, I know we will – but I hate that this is all happening, and I can’t help it.  It just blows – and I can’t pretend it doesn’t.  Ugh.

Ok – tomorrow morning is Ada’s IEP. I am less prepared than I’d like to be, but I have faith it will be ok.  Besides, who knows what all these wonderful people have heard from Ada about my breasts?  This could be a fascinating discussion – wish me well . . .

 

 

 

Peace, Love & Asshats

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I’m going to be upfront with you – I’m feeling a bit sassy today.  Oddly enough, when this crazy, scattered and somewhat ridiculous story is done, if I’ve set out to accomplish even partially what I’m envisioning, this little story will weave around a bit, and hopefully end with a message of compassion.  But that’s not going to happen right away because I feel like it’s important to focus initially on asshats.  Let’s just do this, shall we?

Let me own here and now that asshat is currently one of my favorite words.  While not necessarily appropriate in front of my offspring (they remain critical of my use of “jerk” so asshat would really get me in trouble) I just like it.   It works in a fair number of situations, and while it does have a slight edge to it, it is far less edgy than a lot of words – for instance, almost anything spoken on the middle school bus.

While jerk and asshat feel like synonyms to me, I did look up asshat in Urban Dictionary, and here’s what I learned:

asshat

A person, of either gender, whose behavior displays such ignorance/obnoxiousness that you would like to make them wear their own ass as a hat.

Usage: “Can you believe that my boss is making me stay until 9 pm on a Friday!?” “What an asshat.”

 

Here are just a few instances where asshat has come in handy during the last week (note:  this is a very small sample).

  1. Whoa – it’s not cool to act like a total asshat even when the Packers are dorks!
  2. Elliott changed my ringtone again, and I felt like a complete asshat when “Noir” went off in the middle of a meeting.
  3. Donald Trump made fun of a reporter with special needs? What an asshat move!
  4. The administrators of that Facebook group lack compassion, have rigidity issues and are complete asshats!

If you know me at all, you will likely be able to decipher 1-3 with ease, and if we are connected by Facebook, then #4 will not be a giant leap to figure out either.

Granted, I don’t believe I even spoke #4 out loud, but it was very prominently in my thinking bubble last week, and to some extent is still there today which is why I think it’s time to chat about it here on the red couch.

In short, I got kicked to the curb by a private Facebook group for Parents of Special Needs that live in Minnesota.  This was a first for me.  Believe me, I have my fair share of asshat moments, but as a general rule, I’m not known as a controversial Facebook poster.  True, I’ve taken some heat from my extended family about too many cat photos – which is fair.  I own that I straddle the crazy cat woman line frequently, whatever.  Gosh darn it, my cats are attractive!  But I’m mostly about kid pics, funny kid quotes and stories, and puberty drama (i.e. Henry scowling).

For those who may not be a part of the special needs community, there are a lot of private groups that specialize in just about everything you can imagine and they can be awesome.  It’s terrific to have a place to exchange ideas, joys, accomplishments, ugliness, and humor.  Humor is vital.

One of the biggest challenges I felt when our journey with autism began in 2003 was isolation.  It was such a difficult time in a myriad of ways to process a crazy array of feelings, figure out what acceptance meant to me, and build connections with others who were on a similar journey.  The pain and ugliness from that time in my life is still too difficult to look back at with any clarity even now.  I made so many mistakes that asshat doesn’t even come close to encompassing the wrongs I have yet to right.  Yet, in the midst of all that craziness, raw pain, anger, and above all – desire to do everything in my power to help my child(ren), I received the kindest and most unexpected gift I could ever have imagined – the gift of compassion.

Slowly but surely, I crossed paths with others who followed similar journeys – some were much farther along than me and kindly shared their wisdom and experiences with me.  Some were going through similar joys and challenges, and we were able to celebrate small victories and help one another through the ugly stuff.  When I couldn’t bear the pain of being around my friends with typically developing kids – one of my biggest regrets/most astonishing asshat moments – I found peace and acceptance for taking whatever small steps I could – i.e. occasionally washing my hair, or getting through a mountain of paperwork.  To be blunt – when I was the least deserving of kindness and compassion, I was shown an abundance of both from those who knew my struggle in a way few others ever could.

This was old school of course, so I’m talking about support groups, Mom’s Night outs, phone calls and emails.  Had Facebook existed then, I wouldn’t have felt the need to run a marathon, but then again, I would certainly have publicly made even bigger and more public asshat mistakes – best to have left all of that ugliness out on the mean streets of Eagan I think.

Now that my path to acceptance for all things autism ebbs and flows a bit more, I try very hard to remember the kindness and compassion that was shown to me, and whenever possible, I pay it forward.  Whether helping someone through challenge, sharing my own cocktail to surviving diagnosis (Prozac, really strong coffee and the occasional margarita), or just listening and letting them know they are not alone, I consider it a privilege to show compassion and build a sense of community.

That’s what was so discouraging about my oust from this special needs support group last week.  For whatever reason, lots of people I know are going through some really tough times – autism and way beyond.  I felt genuinely sad to have so many people in my life having a tough time of it, and it reminded me so vividly what a bit of compassion and kindness can do during difficult times.

On top of all that, a friend had emailed me that morning to share that she learned she had been booted out of the same group when she tried to post something, and realized she was no longer a member – no notice of “violation”, no note explaining what had happened, or why the decision had been made – she was left to reach out herself to find those answers.  As it happened, something she had shared the day before was a rule violation in this particular group.  It was news of the death of someone in the special needs community with details about funeral arrangements that were of interest to many.  However, at the very bottom of this article was a link to a “Go Fund Me” site, which was obscured and not at all the main thrust of the article.  Frankly, you had to dig to find it (which I did), and because fundraising was a rule violation, she got the boot.  Granted, she didn’t even realize the article had this link, and unless someone was searching for it, few others did either.  But, according to these administrators (there are 6 but 2 seem to be the outspoken majority), a rule is a rule, and that was that.

This particular group has an abundance of rules – more than most if I’m being honest.  It’s not a group I posted much in because it was obvious that those who administer were a bit prickly about what they felt was appropriate for the group.  Plus, I had heard through the grapevine from many others who had run-ins with these administrators resulting in oust or firm warnings, and while I had not experienced any run-ins with these folks, I did feel they lacked a sense of humor.  That said, the group is composed of over 1,000 members and includes parents of children with a variety of challenges – not just autism.  I liked learning about things outside of autism, and enjoyed the information the group posted.  But, on this particular day, I was sad that they had so heartlessly kicked out a friend going through a really challenging time, and thinking about so many others I knew experiencing their own struggles.  I felt it was a great time for a compassion reminder – here is how this went down for those who are not already done hearing about this saga:

 

I wrote the following on the group wall:

FB group post

 

And here was a response that I received from a group administrator:

FB group response 1

 

While our correspondence became private following my “warning”, they shared with me that they believed my intent was to “stir up drama”, and ended with my being ceremoniously booted.  Word on the street is that my comments regarding compassion were all immediately deleted, and all that remained was my response to one of those dorky “what are you thankful for” things that I responded to after they were privately attacking me and in a semi-jerky reply, I answered “booze”.  I’m told booze is all that remains of me in that group, and to be fair, maybe that is for the best.

At the end of the day, I don’t regret that I chose to make a statement about forgiveness and compassion.  They were wrong when they wrote of my post “It was about guilting us admins for our actions.”  The group is private, and they reserve the right to axe people and statements they don’t agree with, but they don’t get to tell me what my intensions were.  Frankly, I can’t “make” anyone feel anything – they have to do that on their own – and clearly they have.

It’s unfortunate that rigidity is preventing these group administrators from exercising the kind of compassion that was shown to me all those years ago when I needed it most.  But you see, I happen to know a little something about extreme rigidity, and the need to have very black and white rules when so much of life falls in the gray.  It’s not easy to learn gray stuff – and I’m hardly exempt from that (apple doesn’t fall far and all).  After all, my original message about remembering to show one another a little extra kindness and compassion was as much for me as anyone – I have plenty of asshat moments, and I own that.

Let’s spin this positive shall we?  This time of year can be really tough for many of us.  Many of our kiddos struggle with holiday stuff.  Heck, I only have 1 kiddo left in my house who genuinely believes in the “S” man, and here’s a clue – it’s not Ada.  That’s just another reminder of how far away from typical our family will always be – sometimes that hurts.

Here’s my hope – I hope you’ll join me in being kind to someone who doesn’t always deserve it or someone who has made a mistake – whether they know it or not.  Heck – I’ll take it a step further and ask that you show a pinch of compassion to someone who may be acting like an asshat.  If it would help, we can declare a “Be Kind to Asshats” day.  Take it from this asshat – it made a world of difference to me when it would have been easier for people to look the other way and go about their business.

You know what else?  It wasn’t just my autism pals who gave me a pass when I didn’t deserve it – but so many of those “typical” friends I had turned away from when it was just too hard have become part of my crazy life again.  And even better, they’ve taught me a valuable lesson- typical kids are not all lollypops and roses – who knew?

All of this has taught me compassion for the various struggles we all face, autism and beyond.  And for that, I am truly grateful.  From my red couch to you, wherever you may be, I wish you peace – yes, even you asshats . . .