The Unconventional Life

Sometimes life seems so full, so fast, so scheduled and other times wide open, even a little slow or boring.  In between all of this I do a lot IMG_4296of keeping my antennae up for what I see and hear around me that may pertain to helping the boys.    I’m like a magnet for what is helping other kids in our situation.   I’ve become a bit of a skeptic regarding the medical community and have really found it more useful to rely on other parents experience and go directly to the source of success versus always following protocol.   I do not like getting the run around (who does?)  and especially when there’s so much at stake.

A few weeks back Chase got an MRI, we got extensive genetic test results back for both boys,  we saw another neurologist (the third we’ve seen) and we saw a Physiatrist (a rehab physician).    Welcome to our life of many appointments.  You would think I’d have something interesting to tell you about any or all of this.    Nope, I don’t.  The genetic test results were inconclusive and so was everything else in regards to finding any answers about my boys condition.    It’s all very vague and circular.    This is where I make a conscious decision to focus on the ‘how’ and not the ‘why’.    Where does one go from here?   I think what I’ve known all along is the only place to go is outside of the ‘box’.    I’ve truthfully never like being inside any box anyhow so it seems par for the course.   I’ve come to the conclusion I/we/they will not have the ‘conventional life’ (defined as:  what is generally expected by people based on what is common, at a specific time, in a specific culture). – I had imagined that I’d have a husband, a couple kids, go to sporting events, playdates abound,  live in a cutely decorated home and of course, take Tahoe vacations with our besties.     HA!

Let me tell you having two special needs kids doesn’t bode well for having the house that is aesthetically fabulous  (I do realize having kids in general can interfere with the option of having pricey decor anyways) …  then add to that picture a couple clunky walkers, various support systems (hall railing, handles on everything) and special benches and chairs (and I’m not talking about the cute Pottery Barn ones :).  Practical and accessible beat style any day in this household.  This is not the Z Gallery snaz I’d dreamt of.   But before I make the unconventional life style all about the kids and my equipment-based home, let me back up a little.   I became an unconventional life-stylist when I said “yes” to recovery for my ‘issues’ with food and alcohol.   I was 29, living the SF life and everything I thought was cool, sexy, sleek, ‘in’ or the right way was about to change.   No more 9PM apps and vino for this girl.   I was now an early-bird-special-eater and in bed (often) by 9PM.   I was venturing into completely unchartered territory of complete sobriety.   I’d had crazy eating patterns and been actively drinking since I was 14 years old.  Now here I was in my 30’s and all of a sudden things like dating, dancing, schmoozing and anything involving people or making decisions seemed awkward, overwhelming, anxiety producing and/or not nearly as interesting as they had been with a little sugar or booze in my system.  It took me 10 years living sober and free from craziness in the food to meet and marry my beloved husband.    My unconventional lifestyle had become my new norm and by the time I met my husband I didn’t care too much what people thought, how I looked or whether I fit in.   It worked for me on many levels and I finally had courage of my conviction.  We all have our norms in how we live, how we think, and how we act.   Many of the norms I had previously acquired were a hodge podge of what other people were doing – I just followed along (not that I didn’t enjoy myself much of the time, but I also secretly struggled for years).   I borrowed these norms until they no longer worked for me.   For some eating only organic is the norm, for some junk food is a main-stay, for me tupperware filled with weighed and measured food is norm (yep I’m THAT girl who shows up with her own food).     I have finally embraced this norm.

I am grateful that I have a foundation of ‘unconventional’ living as an anchor to support me while I learn to embrace my new-ish special-needs-norm.  There are days when my heart sinks with self pity, anger and/or resentment because I don’t want to be different (truth:  this is where my FOMO kicks in).   I want the fantasy of what I thought would be and my reality to match.  When we / my boys are invited someplace I often run through the logistics in my mind to check whether it will work for them / us.   And, there are certain activities or locations that that unfortunately just don’t work well for us (at least not now).  It pisses me off and breaks my heart  to have to say “no”.    I want to be a “yes” mom and a “yes” wife.  I want to be the person who says I know we have some adversity but we can overcome and do anything.   In a perfect world, this is my truth but somedays this feels impossible or too tiring.   I know we are doing everything we can to give our boys the most ‘normal’ (what is this, by the way?), fun, experience-rich life they could hope for and we are learning where our limits are.    At the end of the day I’m beyond grateful for this out-of-the-box, incredible spiritual adventure we’re on – my boys make it all worth while – everyday.  It is vastly unique and incredibly satisfying.    Just because it’s not what everyone else is doing (not exactly sure what you’re all doing – but I can come up with some good stories :), doesn’t mean we’re going to be left behind or excluded  although, we’ll likely move at a slower pace.  😉   This is my /our journey.     We all find our way conventional or otherwise if we stay the course.