Friends – it’s been far too long. I can’t tell you how many random paragraphs I have saved in my red couch file – some with awesome (mostly inappropriate) titles, or some bright idea I got but promptly forgot when I suddenly remembered where I hid that bag of Halloween chocolate. There are a million reasons it’s taken this long to write and frankly they are boring. Besides, it’s all the same reasons anyone struggles with anything.
But even while I’ve had trouble finding the words, I’ve missed being here. It’s like your old worn out jeans on a sunny weekend day – even better with a strong coffee and a good friend. While some of our crazy family joys and challenges are painful to put down on paper, it is also amazingly freeing to be able to leave them here and not carry them around all the time. I’ve got much to get rid of, but am mindful that what I share is my own perspective. As the trio ages I’m ensuring I seek their approval before sharing anything that may bother them (Tom, not so much). Granted, there are some days when E feels like “hey – what did you have for lunch?” is too personal to share – but I think you know where I’m coming from here.
While there are many directions this could go (some much more humorous than others), I think it might be best to save topics such as wacky medication side effects, crazy ass hair and wildly uneven noobs for another day. I think we’ll stick with oversharing of my current level of ridiculousness and then something controversial as hell – awareness. (insert some sort of inappropriate sound effect here).
FYI – before we continue, I think it’s wise to mention that my ovaries were removed last year leaving me without my stop and think about it filter, so this seems like a perfect time to incorporate a topic almost no one can agree upon, right? I’m trying to work on rebuilding this skill but the truth is I remain a work in progress. For those that know him, think Grandpa John Elliott Norman with fake boobs – that’s me.
Here’s the deal – I miss old me a lot – more than I realized in fact. Maybe I just need more time to work through this or maybe I’ll always look back with a hint of sadness for the loss of who I used to be prior to April 2016. I don’t quite know the answer to that yet, but I do feel there is a very defined “before” and “after” around this gross cancer thing. Some days I can’t help but feel like the rest of the world has moved on with life and I’m partially stuck in some sort of cancer hell that is really hard to break free of.
I know, I know – totally inspiring visual, right?
It’s like my post cancer self is searching to find where I fit now because I’m different (& old & have really weird hair) and the things I did before just don’t seem quite right at this moment – and I don’t know why. It’s just awkward and a bit uncomfortable – like trying on clothes that don’t quite work even though you’ve shopped there for years. And, this is not so different than what our kids are going through. Man, it is hard to watch through that parent lens as our teens/preteens try to figure out how they fit and where they belong. I sense that from the trio in the same way I’m now recognizing it in myself – and some days it really sucks.
Truth is, I struggle to think about anything long term because it causes me anxiety. I try, I really do, but it makes me impatient, edgy and worried about trying to squish all the important life stuff in right now for fear of losing the chance for good. Then, in my moments of clarity (rare as they may be) I recognize just how ridiculous I am. Somewhere in that foggy chemo-brain of mine, I know we are and will always be a work in progress. Life is not meant to be rushed – not even the gross parts.
My sense is that some of this is my way of processing the harm I caused our trio by not being the mom they needed during my illness. Yes, I “get” it wasn’t done on purpose, and that on some level they will have hopefully learned how to deal with whatever craziness life throws at them. But right now it just feels really hard, and we’ve had an especially rough time of things these past several months. Tom & I spend most of our time being reactive instead of proactive – and that’s gross and a sure way to fail when parenting offspring that need structure, routine and positive planning. All we’ve got going for us at the moment is a deep love of 80’s music, and sadly, that’s not enough.
Ok – let’s forge ahead. This is getting to be a downer. Time for a topic change – sort of.
While there are obvious differences, I do believe there are similarities with the autism and cancer communities. Maybe all this crazy stuff I’ve been thinking about is swirling around in my brain because it’s April – Autism Awareness & Acceptance month and I’m bombarded by lots of articles/FB posts/news from a number of different angles, a variety of viewpoints and a giant heap of anger and frustration. It’s not so different in October (Breast Cancer Awareness month) – the NFL is wearing pink shoes and those that have anger/frustration with pink are sharing messages filled with emotion and sadness (and some new clever vocab words).
Both cancer and autism are large, diverse communities filled with passionate advocates/self-advocates, a great many committed families, service providers, medical teams, etc. – and some very deep divides. Whether it be blue lights & puzzle pieces or pink & ribbons, (or a million other things), it feels like the way we disagree more so than what we disagree about stifle both communities from making more genuine progress. I’m not suggesting the issues that divide us are not messy or unimportant – there is a lot to work through, a lot to learn and maybe there will be things that are just going to be polarizing no matter what. This is not so much finding answers as much as it’s about how to navigate different viewpoints – ideally without being Asshats. This isn’t easy (hell, I’m struggling mightily without my pause and think filter so I own contributing to the problem), but I do think we can and should disagree better. I just wish both communities would find a way to focus on something – even one little thing – that most can agree on as a way to bring the community some sense of unity. As it is I wonder what regular folk think when they see all the ugliness? Maybe it is of notice only to those who are entrenched – I don’t know? No matter what, the time will come when it will be helpful to work as one whether you have blue or purple lights or choose to throw a can of hot pink paint on your garage. While my inner hippy might be shining too bright here, I truly believe that it’s hard to make a difference when we only focus on our differences.
So there. I’m jumping off my soapbox in full recognition that these divides exist and that no matter what I wish, I must do more than chat about it. So I did – or better yet we did. My sweet Ada G and I have been embracing a new passion – creating our own bath bombs and soaps with jazzy colors and scents. We like the ones that fizz like crazy, (we disagree about glitter) but lavender is our favorite scent. Pictured are some of our favorite soaps. Ada likes the little puzzle pieces because they are the perfect size for her, so we have them in an assortment of colors – she digs green but is fine with blue (orange – not so much). Ribbons are not so easy to pull off with soap, but I kind of love my new boob shaped soap mold. Ada and I like a soft peach tone (they smell like lilacs and rain). I want Ada to care about boobs because I hope she gets to keep hers forever. She’s teaching me a lot about autism and I’m ever grateful to have such a great educator!
Life can be hard and messy and hormones (or the lack thereof) can get in the way of peace and tranquility. This my friends is something we have had our fair share of experience with of late! (Sweet Jesus!) And while we may be weird even by weird standards, we also believe in possibility. Heck – we’re foolish enough to believe that spring will one day come to Minnesota. However – we’re not complete dorks – we have a back-up plan. The day after the trio finishes school – we’re heading to the Emerald city and hope to frolic about the Pacific Northwest which will be a new adventure for all of us. So far, our “to do” list contains climb a space needle, see baby whales and take Henry to the mothership (Microsoft). Then, we’ll head out to see some national parks where we can use our hippy boob soap and yell NATURE!
Love ya, man.
reflectionsfromtheredcouch 