Showing posts with label Parenting 101: good luck. Show all posts

A couple weeks ago I had written a blog entry about the pressure I sometimes feel to explain O.I., or what is more often the case feeling like I need to provide an explanation for my existence. There have been countless incidents where the awkwardness of "feeling like I should" answer those questions of "why?" "what's wrong?" "what happened?" have made me spit out words I would rather swallow. Or they are incidents where I have wanted to reply with "why do you want to know?" but, for whatever reason, felt that I would be making a social faux paus by refusing to answer. And instead I make myself feel worse after all is said and done.

Of course the next follow-up post to that entry would logically be so how do you tell a person to kindly mind your own beeswax? (Okay so in actuality a parent of a young child with O.I. phrased the question much more eloquently than that in her comment to me... but the point is still the same!)

I don't always know how to say "no. I'd rather not talk about that right now.." or "I don't feel comfortable telling you about it.." And I think in part I struggle with refusing to answer probably because I am an adult who has too much awareness of 'what is expected of me' vs 'what I can do.'
But let's pretend for a moment that I really am fearless and uncaring about what would be socially acceptable. If I were approached by some random adult who wanted to know "so umm can I ask you a question? What's your deal? Why are you in a wheelchair?" Here are some options of how I would say "please piss off" in my ideal fantasy world:

1. Is there something specific you want to know? I'm in a wheelchair for the same reason you decide to put boots on when it's a blizzard out, or when you put sneakers on when you're about to go for a run. It helps me get around.

2. I don't really want to talk about it with you right now, or like...ever.

3. That question is going to cost you something, like a drink. 

4. I don't think your question is something I feel like I need to answer.

5. Tell me why you're curious. And no, your curiosity will not be answered by asking to test drive my wheelchair.

6. Well, what's your deal about my deal? 

7. What's my deal (or problem, or disease, or condition, or disability, or sickness)? It's just mine to deal with, and yours to stay out of.

8. I just am what I am. And what about you? 

I know, I know, many of those responses above are borderline snarky and even hostile. But that's because their question, in some instances, can make me feel vulnerable and pathetic. There are a lot of variables at play in each incident when we are confronted with "WHY?!" The age of the person asking the question, the situation, the environment, the mood we are in, the weather, whether we are late to go somewhere, etc etc. I think that maybe just as we might be getting in the way of ourselves explaining to others, we might also be getting in the way of ourselves being in the right. I keep telling myself that this is one of those things where the more I do it, the less awkward and weird it will feel to me. Because I cannot be wrong when it comes to explaining (at least not at my age, and with my knowledge), and that's just what I need to continually remind myself each time it happens.

Several weeks ago I was waiting for the elevator at a train station and an elderly woman approached, and waited for that familiar *ding!* beside me. She seemed a bit unsteady on her feet and was carrying heavy bags loaded with odds and ends. My city-dweller-radar told me that she might be feeling unwell, or otherwise not necessarily be of a sound mind. She gave me a once over and then mumbled, while looking down at my legs "what happened?" Just as I was about to respond the elevator doors opened and I entered, pressing the Door Open button while she shuffled inside with me. She asked me again, still, looking down at my feet "what happened?
Uncertain of how much she would be able to comprehend, but also certain that the doors would open again in ten seconds - I said, "I was just born this way" with a shrug. Because in ten seconds I made an educated gamble that I probably would never see her again. Even after I told her my answer she repeated her question, in the same muffled and confused manner "what happened?" I took a deep breath in, the kind you do when you try to find some crumb of exasperated patience somewhere in your Friday afternoon at 4:30PM, and I said "I just have trouble walking." All the while silently pleading to the Elevator Gods that the doors would open. They did, but not before she asked me once more: "what happened?"
I sped out before the doors even opened their full width and felt a rush of freedom. It wasn't the freedom from the awkward encounter, it wasn't the freedom from being in a smelly train station elevator, it wasn't even the freedom from her confusing demeanor - it was the freedom from having to explain to someone "what happened."

The point of this snippet is that I realized no one really explained to me here's how you decline talking about your disability, or medical condition. 

In school and at home we are taught "how to say 'no'" to strangers, to unwanted approaches, to shady characters, to negative peer pressure, to unrequested solicitations etc. But, at least for me, I was never taught how to say "no" to the question "why are you disabled?" There are a couple obvious answers to this: First of all, as children we are often surrounded by adults who explain in some way to others why we are disabled. I would think that in this way the process of explaining appears natural to many of us. Also because adults in our lives did it, there is probably this (however childish) idea that 'it is the right thing to do.' Secondly, there might be some component of protection and security for explaining. In my experience explaining that my bones are fragile is not just a way to educate others, but it's a survival technique that I have used countless times to protect myself! To prevent harm from coming to me, to avoid pain! This is not a terribly revolutionary idea to wrap our minds around, right? Lastly, and I think this is only true in some instances -- 'justifying' our existence somehow makes us seem "right" as opposed to wrong. Whether the explanation is made out of a sense to answer someone's question, or to clarify confusion we are 'right' simply in the act of closing that gap due to their misunderstanding.

Despite all of these practical reasons for our reasons that we give, the option to "say no" always exists - and it should always exist. I'm not positive that young kids with disabilities are necessarily taught this, but in my opinion I think it's important that all of their options are made clear to them. No child should ever feel pressured into explaining their disability to anyone, but I can't tell you how many times I have felt that way because no one told me I had any other choice. In the same sense that we are taught what appropriate and inappropriate acts of physical contact looks and feels like, we should also learn to recognize that uncertainty in our gut when someone asks "what happened?"
For me it's the onslaught of questions that come to mind: who are you? Why do you want to know? Why do you need to know? What are you going to do with me? If these answers are not immediately clear to me, then I begin to proceed cautiously with the words that are about to come out of my mouth. It is also this sensation of fear edged with creepiness that lets me know, this is probably not someone who needs to know the answer because they may not use the information in your best interests. 

Look, all I am saying is that we have options and the most freely available among those options to us is the way we communicate to one another who we are. Let's not leave any of those behind because the consequence may be that sometimes even the right words can feel so wrong.

From a young age I was often told "you should feel lucky that you were born in America." I didn't really understand why my parents who were from Hong Kong, and Vietnam made such a big deal about my birthplace until I got much older. Until I experienced some of the opportunities I have had, until the day I went to Macau on a family vacation and felt like a tourist attraction with the way many of the natives gawked. "They're not used to seeing someone with a disability out with their family on vacation..." It was explained to me that typically people with medical conditions are kept in their homes, held in research institutions, or simply become societal pariahs on the street. Indeed on my first trip to China, when I was around four or five, my parents visited a hospital and they were told they could leave me there so that researchers and scientists could do experiments on me. Needless to say my parents didn't opt to do that.

Instead of talking about the multicultural perspectives on disability, what I actually wanted to talk about today was how family shapes a person's perspective on disability. Sure, a child is sent to school and is surrounded by their peers - they may even have access to media and other resources that influence their own ideas of their disabled selves; however, I think that the biggest influence on a person's identity (if not the one that is most lasting) is a person's family. I was fortunate that my mom's presence was something of a trailblazer, a go-getter, and a conscientious student. My dad always the hard worker, vigilant in his respect, and one who valued kindness towards each other. Some of these things you could attribute to their cultural backgrounds as the only child, or the eldest son from humble beginnings in Hong Kong -- together they meshed these values to begin a family and raised my two brothers and me. My mom also used to tell me how fearful she was of people with disabilities when she saw them on the streets in Vietnam, she'd walk on the other side of the street or avoid crossing paths with them altogether. To this day I'm not sure if there was ever an explanation for that, or maybe because she simply feared and felt uncomfortable around what she didn't know.

Clearly my being born in the States helped to change that perception for my family. In America I was born in a state that valued early childhood education, that encouraged all kinds of therapies and services for kids with 'special needs', and slowly over the years (until well into late elementary school, and middle school) they would become more comfortable and less afraid of pushing me to the same standards and expectations as my non-disabled brothers. But being receptive to a community that was more inclusive & embracing of children with disabilities than they were familiar with, believing in their child's potential, and being comfortable with being wrong with what they once knew -- all had a tremendously positive impact on me. I think that I was able to grow-up with a strong sense of myself (expectations of myself, how I expect to be treated, goals I set for myself, etc.), and even though conceptualizing "what it means to be disabled" was not something I thought about until my early adulthood - my family's foundation certainly gave me the ability to think about this on my own.

Although I can only imagine it, I think being surrounded by those who undermine your individuality and potential can have a greatly negative impact on a person's eventual ability to be independent. Independence isn't just something that manifests itself in the physical sense (independent mobility, or living on your own, or getting dressed on your own, etc). There is also such a thing as independence of mind and I think that's the strongest and most valuable form of independence there is, the one where other forms of independence can then draw their strength and experience from.

I feel like I am starting to ramble into one too many directions here at this point, but the take-away of this entry is to emphasize the importance of a family's influence on an individual with a disability. That's often the first impression of how disability is seen by others, how it can impact the way you conduct yourself, and eventually (I think) plays a part in how far a person goes.

In a previous post I had mentioned one of these milestones. It then occurred to me that there are several other such milestones that - at least for me - I consider milestones. Whether they were recognized as such (probably recorded in some medical notes, or jotted down in a physical therapy evaluation) is another story. The important thing is that I recognize that these are personal moments I can feel accomplished about.

1. Getting in and out of my wheelchair.
Vaguely I remember in pre-school that I would need to be lifted from my wheelchair to the floor, or to my extremely tiny wooden chair, or on to the blue mat. There is something exciting about a child figuring out how to independently transfer in and out of their mobility device. It's a decision that their peers who walk or run don't necessarily make a conscious decision about, it's a brain signal for the rest of them. But at some point in my childhood I was able to say I want to get from Point A to Z, and I want to get in my wheelchair at this point, out of my wheelchair at the next point, into my walker for that point, or reach the point after that in my crutches. Figuring out how to move is critical and even though I still look back on those hours of physical therapy with annoyance, I get it now ... I totally get it.

2. Going to the bathroom.
No I don't mean recognizing when your bladder says it's time to party. I mean going to the bathroom with a cast on, by myself. It's something to do with age, privacy, dignity, respect, and simple human necessity that comes with being able to relieve yourself alone. Whether it's a slide transfer, or figuring out at what point you pull the pants down, or how to lean towards your other side because the dominant hand is in a sling - these are all things that yes, someone else can help me with, but how about no. How about someone else helps me do it once and then I figure out how to balance the long leg cast in a way that doesn't weigh my entire body down. Or how about someone stand there and help me figure out how to angle the wheelchair next to the toilet, until I've figured out a safe transfer strategy? It's just one of those things, and maybe you just have to be there to understand and see why the white elephant in that stall always says: I wish I were alone. It's a simple way to say dammit I can still do the simple things everyone else must do too!

3. Asking for help.
As super overly protective as my parents and the rest of my family were, there were moments when I was left alone as a kid. Whether it was in school or during a play date, at the YMCA during swimming lessons, or at summer camp - my parents or my school aide were not always within arms reach. I couldn't just turn my head, look up silently and have someone rush in to fix the situation. Knowing that I could get assistance from those who may not have had the "special training," or may not have been pre-screened by my parents' 200 question interview was both powerful and comforting. It must have been discomforting for me those first few times because even today I still hesitate to ask for someone else's help - preferring, of course, to do it all on my own. But being reassured that I can 'fend for myself' for even the smallest reasons during those initial asks certainly gave me more space in the realm of independence. These are the moments that no child or young person should feel fearful or unequipped in.

Are there other moments you can think of?? Let me know!

This is something that I often get asked by parents of kids with O.I. "What do you wish your parents had known?" "What do you wish your parents had done differently?" "What advice would you give to us?"The answers that exist for these questions are simultaneously too numerous and yet not enough it seems! That means that this post with only three pieces of advice is already going to be insufficient. My only excuse for this is simply: I am not a parent.


1. Know that you are not a failure.
There will only be so many times that you will be prepared for a fracture, and more times than you're comfortable with that you won't. I have yet to meet or hear from anyone with O.I. who deems their parents at fault for not having been at the ready to prevent a break, a fall, or some other mishap. You're also not a failure when the way you slip your arm underneath a broken leg one time suddenly seems to be totally inadequate the next time. Just because something worked once doesn't mean it's going to work the next time - I think that should be Lesson #0 for parents of any child. You're not a failure when you forget to bring the right sling or splint, and you're standing there doing a major face-palm screaming silently at yourself. You're also not a failure when you don't cave in to our every beck and call when we break a bone, because we may think that the world should suddenly bow down to our needs every time a fracture happens. We might think you're a little bit of a failure if you call us by our siblings' names instead. I mean c'mon, we look nothing like them!

2. There is such a thing as over-worry.
I'm not in any kind of position to tell you to worry or not to worry (because even if I did I'm sure we would all know what would happen anyway..), I'm just saying that the line of over-worry totally does exist. We all know that you will and there will be less of a white-elephant feeling in the room if you are honest with us about it. Worrying means that you care and we get that. It also means that our well-being has an impact on you that we ought to know about! I think one way of keeping a distance from the line of over-worry is to not worry alone. It won't all be that feeling in your head, your chest, and on your shoulders. I would like to think that there is some sense of relief when you can say to yourself well at least she knows how worried I am. So please, don't do it alone because there is support and power in numbers. Once in awhile when we take that step we are also lucky enough to find a solution!

3. We're going to pick and choose.
It is partially your job to ideally give us everything that we might need (think beyond the medical and disability sense.) Things that you think we might need. But ultimately we are going to pick and choose from among those things, selecting the things that we think that we need and those things that we know that we'll need. This isn't some attempt to for us to criticize your parenting skills or for us to show how ungrateful we are. This isn't an attempt at all, in fact. It's how we're becoming our own individuals so that we won't be total and complete miniature versions of you! (Because while that thought might be fun in theory, in reality don't you think it might be a little bit of a nightmare? A little bit freaky?) But even as we do pick and choose there's no doubt in our minds that you're going to be there.... adding in your two cents and then some. Right?

As one of the lucky ones who managed to wave a red flag with a large question mark while in womb, I probably don't realize how lucky I am (or was). The doctors who caught sight of fractures and healing fractures in an ultrasound were alerted that something was up. From there I imagine a plan was set into place, possibilities were considered, tests were proposed, and above all caution was urged towards its slow plodding momentum. Mere days after I popped into the world that red flag had toned down its alarm, there was now a name for the little piece of land I claimed: Osteogenesis Imperfecta type III.

Having spoken and met with many other O.I.'ers I know that this isn't the experience for many of you. I have read the other blog posts about babies who are taken away from parents accused of child abuse. I've seen the frantic facebook posts in many of the O.I. groups from parents, grandparents, aunts & uncles of those crowd-sourcing for resources to come to a diagnosis faster. Heard from parents about the months their family spent waiting for the results from the battery of tests, realizing that any result would bring some relief. All of this for the sake of a diagnosis, for clarity, for a label, for a definition, for answers that are a little less vague.

When people ask me if it matters whether or not they refer to "the thing that you have" as a condition, disease, illness, syndrome.. I am quick to respond "yes it matters a lot to me." Because of all that my parents went through, because of all that other babies with O.I. have gone through - yes it matters a lot to me.

But now that I am older and have grown out of the confines of those bullet-point symptoms of O.I. type III, I sometimes wonder if the labels only matter a lot to me because those around me have made it matter.
Something tells me that as a day old, or even as a one or two year old infant -- the idea that my upbringing was wrapped tightly around the fingers of a diagnosis was about as important as saying "excuse me" after I was burped. I simply had no clue. O.I. type III was important to my parents, my medical team, my care takers and those who loved me. Why? Because they were the ones who were responsible for my safety and wellbeing. And it probably wasn't until half-way through elementary school that I had some idea of why I should talk to my classmates about my differences. It was important to me because my teachers, classroom aide, and my parents said "this is a good idea for you."

To be totally honest, O.I. type III probably wasn't something I really considered a part of my identity until I began this blog in May of 2011. Up until that point it was just a way to take care of my medical needs. Now? Now I think it's something I'm fiercely over protective of not because I'm afraid of losing it, but because I know there is so much I have yet to learn and I stubbornly want to do it all by myself! (Picture the first time you are baking your family's secret recipe. You've done it so many times with your mom, your dad, or your grandparents -- but this time you demand total control. My family has done enough and all that they possibly can, now it's my turn to finish this off.)

Let's also keep in mind that for me the label O.I. type III and the label "disabled adult" are two very different concepts in my mind, at least for where I am right now! There are distinct values and experiences that define my identity as someone with O.I. type III, and a wholly separate experience that define my identity as someone who is disabled; what's important in this instance is that 90% of both of these identities are shaped by my own experiences, and how I have interpreted them. While there are many areas where these two identities overlap I think there is a lot of personal pride that I'm comfortable enough with myself, finally, to identify strongly with both.

This isn't meant to belittle the value of a medical diagnosis. It also certainly isn't meant to influence anyone in one way or another, this is just me trying to make sense of the jumble that is me inside my own head; and to think that this is only one slice of all there is to me!
But I will say that for the parents and family who are raising the child with O.I., go ahead -- cling to the diagnosis and consider everything that your child's medical team believes is best. Cling to those definitions and labels, do whatever you have to do to come out the other side of tomorrow with your sanity intact... but realize that eventually, if everything goes right, your job will come to an end at some point and the diagnosis won't be up to you to cling to anymore. Instead it'll be your child's decision to cling or mold, or set aside, or even toss it away. I don't know anything about parenting, it's true, but I do know that when that happens you've done something right.

For many of us, the total time from when a fracture happens to when we register it in our minds that we broke a bone (yet again) - happens within the same time frame it takes for someone's eyelid to go from top to bottom in a blink. Sometimes it's while we're holding our arm or our leg as we wait to go to the orthopedic's office that we replay the events in our mind. Did I see the sneaker my wheel hit before I tumbled face forward from my wheelchair? Did I see when my younger brother let go of his crib and fell on to me? Did I realize that my turn was far too sharp in my tricycle before I toppled over? 

And it's so easy to respond to each of those questions with a guilt-tripping If only I were more careful... If only I had paid more attention... If only I had cleaned my room... If only I had reacted faster. While it doesn't necessarily sound like we are doing so, each of those statements in effect makes us responsible for our own fractures. In some cases this might be the case! Should I have been horsing around with the boys in fifth grade and throwing punches at each other? Probably not. Was it my fault that I didn't put my walker close enough to my chair, so that when I reached forward I instead face-planted? Maybe so. Should I have been hopping on my parents' bed right after my tonsil surgery? Nope.

There is nothing worse than sitting with a broken bone and blaming yourself for an injury. I've done it hundreds of times before: now dad has to take time off from work to sit for hours while I get a cast. Now mom is going to start crying and get really upset. Now both of my parents will have to wake up a little earlier in the morning to help me get ready in the morning because I have a body cast. It's awful! The spiral of thoughts that run through our minds is dangerously fast, and dangerously negative. Sometimes they happen just as fast as fractures happen!
I think that what many people with O.I. (including myself!) tend to quickly forget is that fractures will happen regardless of what is done or what is not done. For someone who enjoys control and structure, and having agendas and schedules for what is to come -- having brittle bones can really trip my sense of self and ego big time! And you would think that having lived with O.I. for a quarter century I would have gotten over some of this by now.

I haven't really completely figured it out but I'll share what I have come to see:

It does make me uncomfortable that I won't know if this winter my colds will bring on broken ribs or not. I dislike the fact that when I go away on vacations, I have to pack splints, braces and slings *just in case.* And I don't know if bumping my leg will have caused the screws in my leg to have loosened themselves. What I do see is that beyond all the thousands of possible things that could go awry, and of those things only a small handful I can really prep for - I have a life to live and on most days I see the structure of my life so vividly in my mind. I see my to-do lists, my color-coordinated google calendar, the goals I have for this semester, the professional benchmarks I'd like to meet, or the parties with friends I have to plan, the books I have on my to-read list, the guys I crush on, the pranks I pull on friends, the beers on tap at the bar I have yet to try, the blog stats I pretend to understand, the dream jobs I come across online and sigh wishfully at, the killer leopard print boots I want.

And at the end of the day I realize that for all the hundreds of things that I don't see, I would never trade being able to see them for the things that I do see so clearly. Is it easy for me to say that? (Because you're probably thinking well Sandy, you don't exactly have a choice in the matter). That might be true! But if preventing fractures for the rest of my life means that I don't get to do that one thing in my life that I have my sights set on, I don't think it's worth it. Call me an egotistical freakazoid, call me whatever you want ..but ya know what? My bones heal, the gaps in my life that I miss might not. 

We were getting ready to move to a new house, a new town. It was a time of overlap: revisiting what we experienced in this setting to shift into a brand new environment. I remember labeling shoe boxes with "Sandy's Fragile Stuff" and "Middle School Box" - I surveyed my childhood room, the toy chest overflowing with plastic gadgets or plush dolls I was ready to part with. My parents had asked me to put my clothes into open cardboard boxes, but I was decidedly "not in the mood" to deal with my clothes, instead I crawled up the fourteen steps to the second floor.

Mom was sitting on the floor in front of the linen closet next to the bathroom, surrounded by clear plastic bags stuffed with ace bandages, slings, old casts, bi-vals, and varying braces.
"Look at all this! There's so much here, you don't even fit most of it. Time to throw away a lot of it."

I watched as she gently folded the slings I refused to wear, the blue one my friends decorated after I hurt my arm in a game of four-square during gym class. She set aside a small bi-val cast that was for my left tibia, it now looked like it would barely fit my ankle. There was the ace-bandage, the yellowed velcro was bespeckled with pieces of lint wedged between its teeth. That was the bandage my parents first put on my leg when my younger brother fell on me as we played in his crib. Stacked in a small pile off to the side she had rolls upon rolls of white medical tape, tape that I knew she had stealthily learned to pocket each time we went to the cast room. It was the tape she would rip between her teeth, handing each strip over to my dad as they put an old splint back on to stabilize a break on the way to the hospital. My casts had faded sharpie drawings on them, each one had squiggles, pictures, made-up signatures, and smiley faces that reflected my changing group of friends over the years (the friends who stayed the same from 3rd grade to 8th grade) - and, more noticeably, when it was we learned how to spell "feel better soon" correctly.

For my parents I imagine cleaning out this bin of medical supplies, and emergency braces held a different meaning. They didn't see the crowd of kids who swarmed me during recess, each one eager to write their initials on the ridged cast -- many of whom I had never spoken a word to. My parents didn't see the days in middle school when I secretly slipped out of my sling during study hall. They didn't know when I would loosen up the bi-val splint during the bus ride to school. They didn't know about the time the nurse gave me a plastic bag of ice, and it had leaked - the cold water dripping past my toes and settling in the heel of the cast. For them these old bandages probably meant how fragile their daughter was, and even though I didn't grow at the same rate my brothers did - it was clear from the tiny bandages that I had grown, but perhaps more apparent was that I had done a lot more healing in the process. Cleaning out this closet may have also offered some sort of tangible relief for my parents; for them it was also a time to clean out the past injuries and think look she got through this one, and look she healed from that terrible break too - oh and how she fussed and cried when they put that on her.

Regardless, for the both of us, the empty casts and bandages that surrounded us had become artifacts of history, a history that in many ways would remain the same but served to remind us that better days exist. 

It began something like this: My friend said "I invited a bunch of the other kids from class too! We're having pizza and we might also have a water gun fight, we really want you to come!" This was the age when talking on a cord-phone with a springy wire with your friends was the "in" thing to do. This was back in the day when "hanging-up the phone" required more than just pressing the "end" button.

We were old enough to be left alone to our own devices in the neighborhood, but still young enough to require parental play-date permission.

My permission was granted and my mother dropped me off at my friend's house later that afternoon. This was a friend's house I had already been to hundreds of times before. In other words, my parents felt comfortable leaving me on her living room floor and expected that I would be waiting in the same spot later on that night.
In a matter of seconds a group of my buddies circled around on the floor with me. Looking back at it now, I think their excitement was in part because another one of their trouble-making pals was involved, but also because I was not in my wheelchair. I was in a different state during playdates, one that may have appeared to look more accessible to my able-bodied friends. By this point in our friendship my friends knew that I crawled around, or used my walker that my dad had left on the front porch of her house.

"Some of the boys are upstairs playing video games. Do you want us to tell them to come down? Or do you want us to bring you up?" Growing-up with an older brother meant that I rarely got a turn on the nintendo, it didn't take me long to choose to latter option. My friend dashed around the house probably looking for her mom to bring me up the stairs. Instead,
"...this is my laundry hamper. It has freshly clean underwear in it, I checked. Can you climb in here and then we'll carry you up in it?" I probably nodded, probably also threw in something about how I always climbed into laundry hampers at home. And in I went, then up I went.

Hours after Sonic had raced around collecting coins, our stomachs gave a collective grumble. Back in the hamper I went, and down the stairs we trooped. I crawled into the kitchen, under the dining room table, and climbed up onto the chair - stuffing my face with cheese and pepperoni, swapping gossip and summer plans.
At some point someone got bored, and our 12 year-old selves began to scheme and then the conversation probably went something like this:
"Let's have a water gun fight!" 
"Do we have enough squirt guns for everyone?"
"I'll run home and get mine, and steal my brothers."
"Let's call up some more people and see if they can come over."
"We can all meet-up at the park, by the baseball field." 
"We'll start here, in the driveway. I'll go turn the hose on and fill-up some balloons."

The same friend who had rigged up the hamper idea, now turned to look at me:
"I think I have my old red wagon in the garage. I'll go look for it. But we can put you in that and then you can come with us to the park! We can even put the water balloons in with you." 
She threw a beach towel down on the bottom, I climbed into the red wagon and there was still enough space behind me to stack half a dozen water balloons. Someone had handed me a SuperSoaker and off we went, behind her house, through the wooded path, and towards the park - I bumped along and remember telling her that she was smart to have thought of the beach towel.

I don't remember much from my summer as a 12 year-old, but I remember that day. It was great. Everything about it was wonderful from the creepy daddy long legs that I killed in the wagon, to all those water balloons I got to hurl, to the boy who said "no, I don't shoot at girls", and especially the look on my mother's face when she came to pick me up.
My nike shorts, t-shirt, socks, and puma sneakers were drenched. But I sat on the same spot on the living room carpet, smiling up at her with my arms stuck out - sad to go home, and I knew in my head: this is one of those days that your parents won't ever find out about. This is one of those days that you can leave to their own worst nightmare. Today's the day when you figured things out and they don't need to know how it was done, they just need to know that I'm safe and happy. 

I am falling. I don't know from where I am falling, or why I am falling - but my entire body has gone clammy and rigid with the knowledge that gravity is going to smack me awake, before I actually break a bone.
Though there are worse ways to be jolted from your sleep, that is one of my personal annoyances. Dreams where I am falling. I then spend the next two or three minutes furiously yelling at my subconscious: how could you forget that I have brittle bones? What kind of sick joke is this? Get a grip on yourself and don't you dare dream it again! 

My friends are all heading towards the staircase, I hang back a few feet waiting for them to notice - already a big smirk on my face. I can't wait to make them feel like jerks. 
"Oh wait, Sandy can't go this way! Sorry Sandy!" 
"Yeah whatever. Some friends you guys are, I'll just go the long way by myself." 
If I call you a friend, it means that we are comfortable enough with each other that you are allowed to make fun of me - and I am allowed to ruthlessly make fun of you. Among my friends, forgetting that I am in a wheelchair is a joke that gets as much play as those well-timed "that's what she said.." lines.

I have never been a person that dog-ears pages in books to remember where I have left off; I just remember the page number. In my family I'm the one who remembers all the errands that each person has to do. When I was younger my parents would stick me into the carseat and tell me "remind me to go get the milk on the way home" or "don't let me forget to go to the bank.." The weirdest thing my memory can do is recall the due date of each library book sitting on my shelf. (But this doesn't explain for why I always had so many overdue library books as a kid - remembering something doesn't necessarily correlate with action).
It was and is easy for me to remember these things because they have meaning for me. They are often the relationship between point A and point B, they are the reason for why C leads to D, or when E then F must follow. I am not able to recall facts on demand, but I am able to build bridges between two facts or concepts - it's in the process of understanding the relationship between two things that I am able to come up with the rest of the picture. In school I was never a flashcard kid. Flashcards were about as effective for me as repeatedly banging my head on a brick wall, trying to find the way out.

This also means that most basic information completely slips my mind. The log-in information to my work computer. The numbers needed to access my voicemail. The fact that when my shoelaces are untied, I need to tie them before they get tangled in my front wheels. The socks on my floor should be folded or put in the hamper, not left there for 2 weeks. The weather says that it's raining, this means I should bring an umbrella. These are some of the things that the hinges of my brain just never seem to be able to close on. Oh, and of course -- I have a brittle bones condition. These things slip my mind faster than raindrops through a child's fingers.

Yep you read correctly, sometimes I forget about the O.I.

I forget that sometimes expecting myself to make it through a day in my wheelchair that begins at 6:30AM, and lasts until 10PM is unrealistic. It slips my mind that as my friends are ordering another round of drinks, I should probably sit the next one out. I don't always realize that driving up the grassy hill to chase after my brother means I cannot safely get backdown. I forget that when I get angry, punching a wall is not the safest catharsis. I don't always remember that when my hearing-aids sound their alarm, it means I should have packed spare batteries in the case. It slips my mind to check to see if a place is accessible before going out on dates. I forget to check to make sure that all the elevators on my subway route are working before heading out in a blizzard. I often underestimate how rugged my wheelchair is by going out in a blizzard. I don't always remember to tell the bus driver that my wheelchair needs to be tied down during rush hour commute. It doesn't usually occur to me that a day of bone pain means that I should go easy on myself the following day.  

I forget about all of that because I'm too busy remembering to live. Sometimes it's just not worth the weight on my shoulders to remember to build the bridge between myself and the O.I. Sometimes it's just not worth my time to continually traverse that bridge over and over again, in hopes that I won't slip-up and end up hurting myself as a result of forgetting.

I forget not because I'm being irresponsible, or reckless. I forget because I'm being cautious in my choices. I am choosing to forge ahead and take risks instead of willingly holding myself back. The fact of the matter is that when I need to trek across the bridge between myself and the O.I., I know how to. It's a journey and path that is well worn and travelled, but the point is that I get to choose when I cross that bridge and when I don't. I am free to forget, and it is one of the most liberating things about my life that I am thankful to get to do.

For the trillionth time my mother asked me if I had put my leg braces on yet.
"Yessssugggghhhh" I whined.
"If you want to play in the snow, you need to put your leg braces on!" She piped from outside the bathroom door. I glowered at the door, my eyes shot x-ray beams of irritation and frustration. My snowsuit was only half-way pulled up, the velcro straps of my leg braces were pointing in every which direction, by the time I was able to stuff myself in the puffy nylon I probably looked like the Michelin Tire guy. I was old enough to not need help getting dressed, but young enough to still enjoy flapping my arms into a snow angel.

Every time I became frustrated with one of my parents' hovering-frets, their suffocating nervousness, their nail biting anxieties, and broken-record commentary I think: What if mom and dad didn't worry about me? 

Imagine if every time I got into the car, my parents didn't also throw the words "seat belt!" over their shoulders with the snacks and juice boxes. My brothers and I would have been free to slide into each other in the backseat, colliding against the side of the doors, our bodies would look like bobble head dolls that belong on the dashboard. Imagine if every year school began, my mom didn't send me with a plastic bag of slings and ace bandages. I would have had to spend even more time explaining to the school nurse exactly what not to do. If my parents didn't worry about every friends' birthday party outing I attended, I could have flung myself onto trampolines, dove head first into ball pits, or tried swinging from the monkey bars. Could you even fathom that day my parents hadn't attended every single IEP or 504 meeting with a laundry list of questions, demands, and concerns? Maybe I wouldn't have turned out to be such a nerd. Maybe so, but I definitely wouldn't have learned how important an education is. What about when it was time to go to middle school, and my parents never turned ghost-white at the idea of me zooming through halls of bulky backpacks and reckless teens? Would I have realized what it meant to balance my health and social-life? Probably not. If mom and dad didn't ask the surgeon about all the other side-effects or options, would I have realized that even scariest moments have options and choices? That it is ultimately my choice on how to manage my healthcare? Probably not.

If my parents didn't worry about me I wouldn't have known what is important, what is necessary, what it takes to succeed, and to be independent. Maybe I would have eventually figured it out, but even so I wouldn't have been as certain as a person - who I am and what I want. I'm not, even today, certain of who I am as a person and what I want - but I do have an inkling, I've got a map that I have the freedom to follow or not follow. This isn't a map that was created for me just because I was born and exist; it's a map that started somewhere and by someone, so much of this outline was done by my parents' efforts in raising my brothers and I. If my parents didn't worry about me I would have had to do much of this outlining myself. It would have taken me more work and struggle to figure out where the boundaries are, where the ocean meets the land, or where undiscovered places still remain.

My parents worried about me so that I could be safe and healthy. They worried so that I would have the freedom to pursue my goals, as successfully as possible. Mom and dad worried because they cared and regardless of how annoying, or ridiculous I appeared during the process of their worrying -- I am a better and happier person because of it!

"Mom I'm done!! Get my walker, I am outta here! Did Timmy already go outside??" I waddled out in full Michelin Tire get-up, excited to add another fun snow day to my memories.

One of the reasons for why we adamantly and anxiously protect our right to speak is because it is a means of validation. It validates our identity as independently thinking beings, it acknowledges that we are capable of expressing our thoughts/beliefs/opinions, and it allows us to 'own' the notions that drift in and out of our heads. Rather than launch into some politicized verbal-vomit on the right to free speech, I'll take you into a life memory:

She gave me a quick .005 second glance, looked up at the clearly taller adult male figure standing next to me and proceeded:"What grade is your daughter in?" The woman asked my dad.
Sitting in my wheelchair next to him I watched the verbal table tennis match carry-on over my head. The serves and spins each side took were happening too quickly for me to jump in and interfere. The woman began shifting her eyes from me, and then back up to him. I could feel my dad gripping and twisting the foam handles on my wheelchair. His frustration under wraps, he hid it well. I held my breath uncertain of how the match would unfold, but silently pleading for a Team Dad win! In a matter of seconds it took only a slight tap of the ball for my dad to send his final, and victorious serve to the other side and catch her off guard: "You can talk to her, she's 19. She's an adult now." My dad responded, with a good-natured smile.
"Oh! Okay!" The woman quickly replied - simultaneously her eyebrows raised, and her neck jerked back in disbelief. She then knelt down next to me with audible crackles in her knees, the sounds of defeat and a polite gesture to the victor.

This is not some bizarre phenomenon that rarely happens. It's a fairly frequent occurrence, and happens regardless of who I'm with! Surely we can agree, no matter where we stand on our rights or freedom to speak, that the above incident is totally weird - right?
My dad was right. I was 19 at the time, and I had become an adult. But being a legally-recognized adult wasn't the reason for why the woman should have directly asked me her question. She should have asked me because I was capable of speaking for myself. I was more than capable of answering her question. And because the question was about me, not about what grade level my dad was in.

For awhile my parents, like many parents of young kids, spoke for me. They told people who I was, what I liked to do, what I could or could not do, what I needed etc. But it got to be a certain point where I began to figure some of those things out for myself - and it validated my progress as a maturing individual to be able to express my own ideas on those things!
After that point whenever someone answered for me, (be it friend, sibling, doctor, classroom aide, parent, relative..) it took away the life experiences and conclusions I came to for myself. Over my head they answered for me, and down below this is what I heard: whatever you decided doesn't matter. It also told me: you should expect others to speak for you, you can just sit back and let them do the work. It said to me: whatever people say for you is the right thing for you. In a literal way it blurted out: you can't have these conversations because they are literally above your head, out of your reach. Whether people intend to imply these things or not, through their manner of communication, isn't what's important here. It's the fact that internalizing those implications were tough for me to first accept, then reject, and eventually find solutions for this bizarre behavior.

"Well actually, I just finished 13th grade." I responded to her wide-eyed puppy dog face. After hearing my answer she looked puzzled. I decided to cut out my smart-aleck answer and said:
"I mean that I just finished my freshman year of college."
"Oh, okay. I get it now." Gone was the look of shock and disbelief from her face. All that was left was a blank-slate, the groundwork for mutual respect and understanding.

I think that there are lots of parents out there who talk about how being the parent of a disabled child makes them different from parents of non-disabled children. I'm glad that they do talk about that difference because it's important that our parents have support systems! In this post I share my own observations from the perspective of a daughter.
I know you are different from other parents because: 

1. All of your patience first went to me.
You had all the time in the world to transfer me inch by inch, from the floor to the car so we could go to the doctor's.. yet again. You had all the time in the world to stand by and go through all those days, weeks, months of healing and then recovery. You had all the time in the world to help me adjust to what the world sounded like through hearing-aids. How I would loathe to be the the nurse who changed my diaper the wrong way. I fear for the healthcare providers who dared to leave us waiting around for 2 hours. I sometimes feel bad for my brothers who were hurried to Being a Big Boy Helper because you spent the night with me post-op. I tremble for the police officer who was suspicious of your explanation of why my spica cast wouldn't fit in a car seat.

2. You are always ready for interruptions. Always. 
I never had to wonder if it would be okay to interrupt you at a work meeting. I never questioned whether or not I'd have to call the neighbor instead. I never thought to ask if you needed time to go look for the cast or brace, or pain medication. And when you did show-up you made it look seamless, like you expected to be there the whole time.

3. You worried about the expected, never the unexpected.When it was time for that first sleep-over, or my first over-night trip, or the first time I went away from home alone, the first time I crossed the street alone - those moments were vacuums of sleep and sanity for you. And yet those are things every average child experiences in his or her lifetime. When I climbed on top of my wheelchair to reach, or when I still preferred to do a half-bunny-hop-half-crawl at the age of 12, or when I slid down the stairs with a full leg cast... you simply shrugged your shoulders, assuming that those were just behaviors I used to adapt. Those are not things every average child does, but they are the things you expected your child to do: and that's how I knew you accepted and understood my differences. This is how you made me feel normal.


What other things makes parents of kids with disabilities different? What else am I missing?   

These are a few of the things I used to tell my parents or teachers so they'd get off my back. And for all the kids out there -- I really hope I'm not blowing your cover!!

5. "I'm fiiiiiine!" Every now and then we are afforded a 'free pass' to fractures. Maybe we got lucky and braced ourselves from a fall the right way, or maybe we accidentally bumped into something -- but miraculously no bones got broken! And as long as there was no sharp pain of a fracture I gave myself a clean bill of health. Arms crossed over my chest, face pouted, and I adamantly refused to allow anyone to "check to make sure.."

4. "It doesn't hurt that much." I never knew how to accurately gauge the amount of pain I was in. (I still don't!) When I was asked "on a scale of 1-10..." I never knew how the pain at 7 differed from the pain at 6 or 8. After awhile I did away with trying to figure 'just how badly it hurts' and realized that by saying "it doesn't hurt that much" I could knock off several birds with one stone! By saying this I knew that my parents wouldn't be so worried, and I also figured out that the crazy pain medication they'd give me would be a smaller dose. In other words I associated the pain with the medication, and the amount of medication was related to how long I could remain at school to goof around with my friends.

3. "I'm not tired." This is uttered out of the mouths of every child. After operations or major fractures it was expected that I would need to rest. And no matter how physically exhausted I felt I refused to sit around in bed for more than a few hours. For someone who does a lot of sitting in her wheelchair, I am quite frankly terrible at remaining in one position. I fidget a lot, I have a tendency to move around a lot, and being told to remain stationary sounds like you're punishing me. But of course after I came home from operations my parents would get me set-up in bed, and while I complained.. the second my head hit the pillow I would doze.

2. "I didn't scratch or pull the cotton out." In every cast I have ever had the cotton padding that lines the edge is always pulled out. Why? Because I itch. Because I scratch. Because I'm an impatient person who can't wait the 3 months until the thing gets taken off! Every time I go to the cast technicians they look at me knowingly, "I see you've been scratching again Sandy...there are red marks on your skin..." What can I say? If I had a dog I'd probably tell them that the dog did it.

1. "I won't get hurt, I just know it!" Somehow having O.I. also gave me the authority to be a licensed fortune teller. Whether it was jumping into the ball pit at someone's birthday party, or maybe it was trying to climb ropes in P.E., or the time I tried jumping on the trampoline, let's not forget when I sat on a roller coaster I was at least 6 inches too short for... I insisted on being allowed to do all these things because somehow I just knew nothing bad would happen. Spoiler alert: I never actually knew the outcome beforehand. I just wanted to try all of these things, but in my mind the more I confidently proclaimed getting hurt won't be a possibility - then maybe my chances of getting the green light would increase in my favor. Sometimes my persistence worked, often times it didn't... c'est la vie!

5. Invincibility: Whether it's soaring high on a swing set or the freedom of doing flips underwater in a swimming pool - life doesn't always need to feel fraught with worries of fractures. By showing young kids that it's possible to grab life by the bull horns without feeling pain, it instills a spirit of joy and 'can do' attitude early on!

4. Rehabilitation: There are numerous life lessons that are taught when anyone is in rehab. Whether it's recuperating after an injury, exercises that stress patience & persistence, or just the mental focus of putting one foot in front of the other: the experience of rehab is humbling. For a child it's important to not only teach how to 'bounce back' after an injury or operation, but in doing so you are showing him or her the process necessary to come back after any other future set back.

3. Self-Advocacy: It doesn't matter that children are 'only minors' or that children have parents and other adults who will make the decisions. Start simple and small: are they the ones to choose what they want to wear in the mornings? Are they advocating for how much something hurts? Can they choose what color the cast is? Aside from the decision making skills or the self-awareness that this builds, it also helps children begin to realize that they can speak up about what their disability needs vs. the disability speaking for them.

2. Collaboration: This seems almost silly to include because it is virtually impossible to avoid doing. But I think, at times out of fear for safety, there is a hesitation among the grown-ups of children with O.I. to allow kids to work with others - of every ability. Since O.I. is such a rare condition it's important that kids learn how to step out of their comfort zone and collaborate on projects, team sports, at camp etc. Working together, regardless of how rare or common the differences people have is a valuable skill as adults.

1. Adaptation: Childhood presents itself as a period of exploring the world around, and learning what your body is capable of doing. In other words, for a young child with O.I. childhood is also a period rife with opportunities for adaptation; learning how to do so successfully and unsuccessfully inspires creativity, problem-solving skills, possibility, and what is so often the most difficult thing to do: to simply try. 


    

Now they're rolling the gurney down the hall, into the elevators that will take me to the surgical floor. I sit huddled in the swaths of bleach-free blankets and sheets, wondering what is happening to you. Just minutes before the surgeon explained, for the hundredth time, exactly how the procedure would go - reassuring you for the millionth time that only he would be making the actual incisions: "These are surgical fellows who will only be observing in the operating room. No touching." 
But at least they will still get to see me on the operating table. You, as my family members, are only privy to updates that I imagine are given by a surgical nurse every now and then. And to be honest, the only reason why I think that happens is because of what I've seen on all those hospital shows: ER, House M.D., General Hospital.. Does it really happen? And do they update you in that monotone voice the actors have in those shows? Or is it a little more humane? What are you thinking after they give updates? Do they tell you exactly what you want to know? These are the questions I'm wondering as I'm rolling towards the surgical floor, getting a little farther away from you.

Now I'm in the operating room. During the brief trip over the prep nurse and anesthesiologist have been making small talk with me. What grade are you in school? What's your favorite subject? What book are you reading? Do you have siblings? Do you have pets? I read in your medical records that you want to be a lawyer someday? I know that these questions are meant to calm my nerves. But it's hard to stay calm because you are so far away down the hall, down several floors in the elevator, and sitting in some imaginary Family Waiting Room that I have only seen on t.v. shows. I am thinking that for every question that the nurse is asking me, your synapses are firing off only a hundred more.
Did I follow the pre-op instructions correctly? Did she have anything to drink in the past 8 hours? What were the risks the surgeon told me again? Should I look at the fine-print on the copy of whatever I had just signed? Will my son remember to lock the door when he comes home from school to an empty house? How long did he say recovery would be? Is this really worth it? 

I wish you could be with me to see how metallic the inside of an operating room is. Metal is reflective, shiny, sterile, and cold. Just looking at all that metal in there makes me shiver a bit. Would you like another blanket? The nurse asks me. They've lifted me onto the operating table, it's slim, black, and has a place for my arms to be strapped down onto. Someone begins to place 'stickers' with vein-like wires attached to them. The anesthesiologist waves the little tube of cherry-flavored sleepy drug underneath my nose, my stomach turns.
In my head I'm not thinking about how straight my bones will be after this operation. And I'm not thinking about what color cast would you like? I'm thinking about something I know best, the most familiar person my brain can conjure up in this frighteningly silver room: you. Are you sitting in the chair with your legs tucked underneath you, with your hands clamped between your legs as if you really need to go to the bathroom? Except we both know that you don't, you sit like that - curled up and tense when you are nervous.
Has someone brought you something to drink? Jello, apple juice, and popsicles are for patients so what do hospitals give to family members in that Waiting Room? A styrofoam cup of coffee? Non-caffeinated tea? Hot chocolate? Do the graham crackers you are nibbling on suddenly taste like cardboard? What are you thinking about now?
How long will this take? Will something go wrong this time? Will she be okay? What did the nurse just tell me again? What does that mean in plain English? 

Don't be nervous. Because I am not nervous anymore. I'm looking up at smiling eyes hiding behind a surgical mask, thinking about you and the questions that you are wondering about. Somehow I believe that there is comfort in the unknown that we are both facing, hundreds of feet away and in drastically different rooms; because as long as we are both thinking of each other then whatever heart-wrenching-hand-wringing-hair-graying-pulse-stampeding incident we must deal with - will never - sway our confidence in one another.
"Okay Sandy, ready to go into a deep sleep?" The anesthesiologist asks. I am looking back at him and only manage a nod as I imagine someone coming to tell you, "The operation has just begun, and she is doing great." 


See you soon in the recovery room,
Sandy 

There are a slew of things that I worry about on a routine basis: will that spider drop on my head and lay eggs in my ears while I'm sleeping? Will I stay employed? Will my wheel get stuck in the gap between the train and the platform? Will I get stuck in the elevator? Will my wheelchair suddenly break down? Will I find another gray hair in the morning?

Here are some other "But what if's" that I have:
What if I...

• Get into a car crash. Commercials that showcase a car's safety features with the billowing air bags that explode on impact into the face of a crash dummy freak me out. There should be no need for explanation as to why that is the case. 
• Am alone when I sustain a fracture. Seeing whether or not I can reach the highest cabinet in the kitchen by climbing on top of my wheelchair, and then swinging from the knobs on the cabinets is probably a bad idea.. but particularly if I am home alone. I am also not great about having my cellphone near by in case I need to reach 911.
• Start fracturing a lot again. I have heard that my 20's will probably be my most stable period in terms of physical health (especially for someone with type III). The frequencies of fractures has dwindled and I am able to put all my energy into life goals without being tripped up by healing time or bones breaking. I dread the day when the frequency of my fractures increase once again; I am afraid I will not be able to have the same stamina and energy as I did when I was a child.