So in this moment I am sitting here posting in my "stream of consciousness," the ramblings going through my head the past few weeks.
I LOVE this quote, and will explain why:
This has been a summer of strange reconciling.....one of odd "coming to terms" with things. Honestly, the experience has had a lot to do with letting go.
And it has been, and will continue to be a process.
It has not been a process which seems particularly heroic or brave, but rather, one of exploring different identities....some of which "fit", some of which don't, and some (most) of which I still am struggling to own. Most of this experience has to do with struggling to embrace different aspects of disability.
Disability IS a concept, and it is a concept encompassing varying degrees. I would say, as a rule, folks think of the word as something which "takes away" (the prefix dis) from ability....and creates a part of one's identity as "outside the norm" to a degree.
Three and a half years ago, we came to learn that our son has "some degree" of autism. Because of his unknown genetic history and known difficult early years, we believed that with enough effort and tenacity, he may shed this diagnosis and eventually hob-nob with his same age-peers. (in layman's terms, we felt that that one day he would be normal.)
A year-and-a-half ago, on the day I landed in the ER after my accident, I learned that I "may have some degree of residual disability" due to my injuries. I'm still teasing that all out.
So we continued to plug ahead in my son's therapies (to the point where he "tested out" of needing further services), venture on in my physical therapy and reconstructive surgeries, and embrace life as a family in the best way we knew how.
Perhaps the stars have aligned this summer, or the cobwebs have cleared from my brain. Maybe the reality of the crossroads I'm at (regarding my ankle saga ) has strong-armed me out of my fuzzy belief that someday we will be "normal." In an odd sort of way, I'm kinda glad we're at this point. Why??? Because trying to make "normal" happen is painful and difficult. I would even venture to say that, at this point....continuing to plug-away in this fashion would make me a horrible mom (okay, maybe not horrible, but definitely sub-optimal in the genuine department).
Here's where it gets hard.
We SEEM normal (well, with the exception of Scott). Unless you spend significant amounts of time with us or in our home, you are not likely to see "disability." But it is there.
- I feel it when I drop Kai off at summer camp along with his same-age peers. Coyly, I will stand back and watch him, silently hoping that his verbal and social abilities will match theirs....only to be disappointed and reminded again and again of his deficits in this area.
- I think about it every time I find Kai lining up his cars, positioning doors at right-angles, noticing mundane patterns (or deviation from a pattern, such as change in direction to a particular destination), or obsessing about anything with wheels (far beyond the typical-boy fascination thing).
- I feel it in my subtle dis-inclination to take part in some social outings (mostly active ones) whereby I don't want to feel like a drag on the plans of others because of the things I just can't physically do.
- I realize it as I drive around the parking lot looking for the closest parking space to avoid walking longer distances..... occasionally even pulling a pass on the shopping thing, just because walking is too damn painful. (Luckily I eventually bucked-up and got the temporary disabled parking permit...woot woot!)
- I am reminded of it every evening as we assist Kai taking out, cleaning, and replacing his speech prosthesis (what he calls his "rainbow" It is something he needs to wear as a result of his cleft palate). An interesting, yet little-known fact is that without this device, Kai is relatively unintelligible.)
- I am humbled by it during times which I need to stand for long periods of time. Between lower back / SI joint and ankle pain, I can be caught off-guard and experience a sort of emotional and physical wilting...my body's way of shutting down as pain becomes less and less manageable. ( A real bummer, as I don't want to disappoint family and friends. I prefer to "hang in there" and have fun, but the body is not always willing. Hrrumph!)
- I am aware of it when I witness my son having the most difficult time with word tenses, vocabulary, or recall. Verbally he really struggles...which is typical of a lot of kids on the autism spectrum.
- It is realized during all the times we carefully discern the perceived "fallout" of our decisions, trying to be sure our plans are realistic rather than blindly optimistic (as we can tend to be....)
- Lastly, my inability to return to work has been tough. I had hoped to return to my career when Kai was exited from therapy and started school, but my medical turn-of-events (and subsequent setbacks) put the kibosh on that. So financially, we've taken a hit as well.
I feel that for many years, we have worked hard to shed the perception of disability....and finally, finally...are coming to embrace the strength imbued within that label...if you will. (While I had thought we bought the ticket for the short ride, it appears we got suckered into the long haul one.... ) Further highlighting the misperception of non-disability others have of us, as we've informed various folks about our participating in the No Barriers Summit, a common question has been "will you be volunteering?" Ugh.....no.
After heels digging in, I have come to appreciate getting off of the hamster wheel of perceived / desired normalcy....and am now looking forward to being with others with similar experiences.
When I contacted the folks at No Barriers and inquired about our family's participation, I was peripherally aware of the "invisible" nature of our disabilities....but the more we talked (and I shared the Easter Seals video of Kai's progress), we became excited about how this experience would be amazing for our family. It is this mindset we are embracing....The "tackle life head-on" mindset.
(let me diverge a moment....one of the luxuries of "stream-of-consciousness" posting...)
Wanna know something that will knock your socks off? Recently I've been chatting with a few other folks who have been on the same limb-salvage roller coaster...Tricia and Tony are two of them. Tony is a snowboarder (and writes this awesome blog ), and Tricia is a skier. Both ended up developing debilitating post-traumatic arthritis and underwent numerous surgeries/procedures in attempt to decrease pain, increase function and gain their active lives back (Tony endured three years of this song-and-dance, Tricia endured ten.....[Tricia interestingly had the same ankle-replacement I'm slated to have in the fall, which was not successful]) In early June, both elected to have trans-tibial amputations. Admittedly, really, really tough decisions. But you know what? They're both saying that they're feeling a whole lot LESS disabled now. In fact, both said that now that they have their permanent disabled parking placards, they feel that they no longer need them. Walking is not painful, and they are no longer hobbling around on their painful, un-useful, cobbled-together limbs.
A couple of weeks ago, both posted action videos of walking and dancing on their new prosthetics. I messaged Tricia that I was jealous....jealous!!! This winter, both will be participating again in the sports they love. How cool is that? As someone toward the front end of what they've been through, it was an odd but really cool feeling. Knowing that one can lose something to gain something better. SO...
Yeah....like I said....I love that quote.
I'm dyin' to figure out this "new normal" thing. I still don't know what that is. ("New kinda normal-ish?)
This whole experience makes me keenly aware of others who find themselves in similar situations. Folks who are unable to participate due to debilitating anxiety, depression or PTSD; Those who experience chronic back pain; recurring bouts of illness, injury or arthritis. There are so many things which factor into our ability to enjoy life.....and there are lots of folks who just want to participate.
We do what we can...and reach out to connect. We clear our minds of how things are supposed to be...and we just press on.
UPDATE: We are still in the waiting game.....my doc continues to see bone-healing in the graft area, and we continue to try being patient as to when to go ahead with an ankle replacement surgery(my last-ditch effort to fix this painful and not-very-functional ankle). Unfortunately, the statistics aren't the best for someone of my age, with my poor bone-quality and previous soft-tissue compromise having this type of procedure. Still, it is the best option at this point.... fingers are crossed! We will see... stay posted.