Posted in Autism, breast cancer, compassion, parenting, Special Needs Parents

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!

 

Author:

I'm Kammy - Mom to Elliott (20), Henry (18) and Ada (14). Both Elliott & Ada have autism. I enjoy strong coffee, pretending to run, and writing about our daily triumphs, struggles and light-hearted moments. Oh - and I was diagnosed with stage 3 breast cancer in March 2016. That's gross.

3 thoughts on “Moving on . . .

  1. What you have been through has been a true wham bang, No fun at all. The kids look terrific, no worse for the wear. The new house goes with your new foobs or noobs, can’t keep it straight. A long time from now when your kids have graying hair you’ll reflect on your survival,physically and mentally, and think it wasworse than you expected in some ways, and some days pretty special as your kids and Tom were always there which was your most important support. Thanks for bringing back the Red Couch. You’re someone I’ll always admire.

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  2. Surprisingly, this blog showed up on my Facebook page this morning! Thanks for the shout-out. You know I love love loved working with Ada every day during the year. Excited to be her school- neighbor this year while she conquers 5th grade. So happy to hear about these updates.

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  3. Hi Kammy,

    I’m getting in touch because I’m in the process of starting a community of bloggers who have experiences or expertise relating to cancer, and I wanted to ask if you’d like to be part of it. I work with an organisation called Live Better With Cancer – here’s our website if you’d like to know more 🙂 https://livebetterwith.com/

    Every month, we’ll be sharing our favourite blogs, articles and thoughts on different topics around living with cancer. The aim is to build networks between all the great writers out there, and hopefully share some of our readers/viewers around too.

    I thought you’d be a perfect addition to our community – would you be interested? We’re happy for members to contribute as little or as much as they’d like, but we’d love to feature a guest blog with you at some point in the future.

    Hope to hear from you!

    Emily x

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