Showing posts with label family matters. Show all posts

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.

There is a saying about how the bond between parent and child is strong, unbreakable, the closest. While my parents have no idea this blog exists, and talking about "what it feels like to be the only one.." wasn't exactly dinner table conversation (or any kind of conversation ever) - I believe that bond is true for me. This reflects not just the wholly dynamic and complex relationship between my parents and I, but goes to show that the differences in my genes isn't enough to get in the way of anything.

This doesn't mean that there were not some rough moments from my perspective as the child of able-bodied parents. There were definitely incidents that I felt isolated, times that when I look back are cringe-worthy and likeohmygawd so awkward.

I remember days of trying to clack-clack around in my mom's high heels in my walker. The plastic of my leg braces were wedged into the very tops of those points, where my mom's toes would come together snugly my toes remained rigid. The sides of the brace's plastic foot piece jutted out against the sides of her shoes, it was like my feet were rectangular blocks. It wasn't just that when I wore them the back of her heels still had room to easily fit a beanie baby or two, or that I wobbled precariously to the point where I just slid along inch by inch. My mom didn't have the experience of trying to look lady-like while wearing braces. And no matter how many reassuring words she could offer just didn't fill in that gap - it wasn't something that I recognized at that point, but it is something that I realize now.

Then there were those times when I would be plopped into the carseat to go run an errand with them: the bank to deposit a check, to the grocery store to grab that forgotten item, to the library to drop off books for return - quick errands that lasted no more than ten minutes. Instead of taking me out of the carseat, getting the wheelchair out.. I would remain in the carseat. "Read your book, I'll be out very quickly." And I don't remember if it was ever told to me directly, or if I just mistakenly overheard one of my parents saying: "it's okay if we leave Sandy alone somewhere for a few minutes, no one is going to kidnap a child who uses a wheelchair.. too much trouble." I didn't ask why or how come. To me it all made sense, and there was definitely a part of me that was glad for this logic! How come someone would potentially kidnap my younger brother and not me? How come not everyone knows how to fold and unfold a wheelchair? How come I would be too much trouble for a kidnapper? None of these questions, in my mind, really needed to be asked. I just knew the answers from the way my parents acted.

It took multiple instances of when I would be sent to lunch detention, and when my middle school guidance counselor would call home to say something like: "Sandy keeps getting away from her aide..." It wasn't until I simply ignored my aide for a good two months that my parents realized that unlike my older brother I was not getting teased, and I didn't feel like a 'loser,' and I wasn't embarrassed because I was a dork or a "teacher's pet." My parents went through their own days of classroom teasing but they couldn't tell me to stand up to my bully, were unable to tell me "go talk to the teacher.." because they had never experienced the awkwardness involved between a thirteen year-old girl and an aide breathing down her neck. The larger issue here is my parents weren't naturally able to help me figure out how much help is too much, and how to ask adults I "depended" on for space and boundaries. It was decided through a series of IEP meetings and meetings about "responsibility" in my guidance counselor's office that sorted everything out.

There are lots of other times that I can recall as well. The thing is that even though my parents were not able to give me first-person insight on "what it's like..." that is often not what's necessarily important, or what I needed most in those instances. What I needed most (and have always needed) is to know that my parents were always there to guide me, to help, to support, to explore options, and to just try to understand.

She was my grandmother. The mother of four children, my dad being the oldest. She was also my first care-taker, at least during my earliest days when mom was still working full-time. To her my scream-cry-wail meant that her granddaughter was injured somewhere, again... it meant that when my parents came and took me home she might have offered little else than a shrug and prayers for explanation. She was also the reason I saw my dad crying for only the second time ever in my life.

Someone called to tell me that she passed away. I don't remember who it was, or what words were said. Actually -- wait. No. Someone called to tell me that she had been taken to the emergency room, something about a sudden heart attack at the subway station. I think I asked whether or not I should go to the hospital. Then awhile later someone else called to tell me that she had passed away. They broke the news to me in Cantonese and in English, translated, that person over the phone said "She has left." At one point, when I was not much younger then I was then I didn't realize the implications of what that phrase meant. I took it literally, as children often do.. when I first heard that phrase I followed-up with "Where did they go?" But when my grandmother "left," I knew what it meant then.
Windows were opened in my dorm room, the breeze carried in the pregnant smells of spring in New England and drunken cheers of my senior class in the midst of Senior Week. I sat there shocked and stunned, not really understanding where I should be or what I should be doing. I knew this much: Senior Week was not where I was supposed to be, and cracking open a bottle of Blue Moon was not what I should be doing. I think at one point I tried to make myself cry, but nothing happened. I think my younger brother told me dad wasn't at the hospital but had decided to finish up his work day instead.

The order of the next few days are just a jumble of scenes in my mind. If you asked a kid to put them in order it would be cruel to not add "there's no right or wrong answer to this puzzle.. just do your best."

Not wanting to see anyone or deal with the questions, and certainly not those "feelings" that were still lost in the vacuum of 'shocked & stunned' I did what any savvy college Senior did: sent out a facebook message to my closest friends, quickly and dryly letting them know what had happened and "sorry I will try to make it to the Senior Week events that I am able to.." Social networking gave me the time and space to pause my world while real life unfolded in its natural procession. I also facebook chatted my cousin whose name appeared amongst the other Friends Online (35). We exchanged HTML constructed condolences, I asked him about funeral arrangements. Quick and efficient. At least now I knew what to expect in the hours and day to follow.

There was the funeral home that I was carried up and into. There was the framed picture of my grandmother that the oldest son of the family carried. There were the stiff backs, the sunglasses, the dark attire against the white and cream colored walls. There was the too much make-up permanently on her face. Family sat in chairs that lined-up in rows and columns like ink dots against a newspaper, sobbing and remembering the history of my grandmother. Then there was the ride to the church. Bibles written in Chinese were handed out, Amazing Grace was sung in English and Chinese. Stories were shared, relatives expressed their grief. I wanted to say "thanks" to her. I wanted to say "I'm not a screaming-wailing-crying baby anymore, and thanks for watching me when I was." I wanted to say so much more that the pews of her family and church friends wouldn't know a thing about. Because the thing is.. I don't really know much about it, I was only a baby, an infant who experienced her surroundings through the senses. I wish each of my senses could have their own memory. I only know that she did what she had to do.

White gloves were passed out to those carrying the coffin. I was carried back down the stairs of the church and then into the hearse. We were driven to the cemetery. The coffin was taken out and put on the raised platform, more people gathered beneath the tent. Someone decided that the wheelchair wouldn't be able to trek through the muddy grass area, that I wouldn't be able to huddle underneath the tent. I sat in the hearse with all the doors opened, the tent and coffin only twelve feet away from me.
I sat on the very edge of the seat of the car and tried to hear what was being said. I listened and made a conscious effort to hold everything in my memory: the way the driver stood respectfully away and guardedly by me. I tried to remember the way the fringes of the tent flapped in the wind. The lady bug that surveyed the area atop the blade of grass by my feet. The coffin that would fit into the ground in that same way you finally find that one lost puzzle piece. I tried to remember the way things were at that moment and that entire day, because I don't remember what it was like back then. I wanted to do whatever I had 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.

1. Sharing is caring. The first and most important piece of advice I would give to a parent would be to keep your non-OI children informed of what is going on with your OI child at all times. Even if your other child is 5 years old and doesn’t quite understand what is going on, they still care and it will make them feel more involved. They will ALWAYS be concerned about what is going on with their brother or sister. And it lets them know you are still thinking about them through all the stress, when you take the time to share information with them. It may help that child understand why your OI child requires so much attention, and they may even be more willing to help if they know what’s going on with their sibling.
2. Families help each other. The second major piece of advice I would give to a parent is- even if your child is younger- let them help with splinting or giving medicine, or whatever it is that needs to be done (unless there really is nothing at all that they can do). It makes your other children feel important and a part of their sibling’s life (of getting better!). If they don’t know how to do whatever it is, teach them. It gives them an opportunity to be included. They may not complain as much about attention if they are included in what is going on with their sibling. It will also be a good bonding opportunity for you and your child if you teach them these things. 
3. Inclusion makes the world go 'round. The last big thing I would say to a parent is to get your OI child involved with sports. Maybe not a club, but go to the local park a couple times a month and play baseball or something (make adjustments or accommodations as needed). If you’re playing baseball, play with a tennis ball or a whiffle ball instead of a hard- ball. If you decide to play soccer or tennis maybe use a foam ball. Or have your OI child be a referee. There are always ways to amend the game so everyone can be involved. It will keep everyone’s life running as smoothly as possible. Everyone can be included, active and it’s good family time! It will also teach your other children to be a little more flexible and to adapt to situations creatively.

Some other miscellaneous advice: make sure your non-OI child understands why your OI child needs the special attention; especially if they are young. Keep reminding your young child because it may be hard for them to understand. Don’t compare your other children’s hardships to those of your OI child either. It makes your other children feel as though you care about your OI child more than them. And it’s just not a good idea to compare children in general. I promise I am not trying to tell anyone what to do! Like I said, none of this may apply to some families, or these may be things you already keep in mind. They are just things I have learned in the four years I have been a sibling to an OI child and 13 years of being the oldest of 3 other children. I love my family very much and I know that every family is different, and no family is perfect. Every family is special and I respect that.

Here's the scene: I am in my senior year of high school, there are only five more months until I graduate. At that point I will no longer consider myself a child, I will be done with high school, I will think: to hell with how anyone else sees me. I will be moving on to college, eager to jump head first into young adulthood. But until that point I will be rushing ahead, antsy with anticipation of being treated like an adult. Excited to make my own decisions, without having to actually make any real decisions yet. That is until I am confronted with the question of a rod surgery in my tibia. Here I am trying to talk it out -  as an almost-adult  - with my parents.

(Please note: what is in bold italics are my own thoughts. These are the things that I never actually said to my parents during this conversation).

 Parentals: Sandy what is the point of this surgery? Will you be using your walker on campus in college? Probably not, right? You won't still be getting P.T. services during school hours, right?

Me: But Dr. S said it's a good idea! He said that the bone is terribly bowed. That it will be better, long term, for it to be straightened.

Parentals: Okay so he says it's a good idea. But what do you think? Do you think this is a good idea? What was the point of getting your other leg rodded when you were younger? It was so that you could walk on it more. And now you don't walk as much, and in college you probably won't be walking on it.

Me: "Probably not walking on it" is not a good enough reason to not have the operation. "Probably not" risks losing too much in the future, too much potential that you might not see for me - but maybe I see it for myself. Well, maybe I will walk on it in the future. What about then?

Parentals: It's going to be a lot of pain and recovery time for something that you're not even certain will benefit you in the future. Do you really want to spend your summer before college rehabbing? You want to spend it in a cast for 3 months?

Me: You think I don't know the risks and sacrifices I'm making so that I can walk better? You think I don't know?! I'm not stupid, of course I know I'll be in a cast and there will be lots of pain. This obviously isn't my first rod surgery, and obviously this isn't going to be my first broken bone. I know what I'm doing.

Parentals: You're a teenager and you think you know everything --

Me: Because I DO when it comes to this!! You guys are the ones who know nothing when it comes to this, because You Do Not Have O.I. D'uh!

Parentals: Does it hurt you right now? Is that why you want to do the surgery?

Me: I stopped telling you when my bones hurt a long time ago. If it wasn't an obvious fracture I've long stopped telling you so that you wouldn't worry. I'm not about to start that again. Only sometimes, only a little, off and on. Only because the bone is so bowed, every few weeks or so there are little cracks in the bone. That's why Dr. S thinks it'll help the bone be stronger, so it won't break. But the truth is yes, it does ache and it goes numb at night in ways that freak me out and keep me up at night. 

Eventually, and after many days of this aggravating and frustrating back and forth - my parents became okay with my decision to go ahead with the operation. I was not yet a legal adult, still had to have parental permission, and while it was endlessly annoying for me to have this conversation: I have immense respect for my parents because they allowed this talk to happen. It is necessary, because the fact of the matter is that no one will always agree with medical decisions regardless of who it comes from (the patient, the nurse, the doctor, the parents, the physical therapist etc). But it is necessary regardless of who it comes from, that that individual is able to provide reason and clear understanding of what making a medical decision means for the present and future.
For adults the above may be obvious. But for young people, particularly those who are not yet legally able to call the shots - but clearly able to have a say in what happens to their body, this is another example of managing their own healthcare. Making healthcare decisions big or small can be frightening, talking it out with those who know you best and respect you makes it a little easier.

You were my first sleep-over buddy. We'd snuggle under your blanket dotted with little orange flowers, the one that smushed me in between you and the bedroom wall. Under that blanket you told me countless bedtime stories, spontaneous tales which as the night went on became interrupted with your halting melodic yawns - I don't think any of those stories ever got finished. "Good night" I'd say as I sensed your drowsiness; most of the time I was just pretending to be tired, going to bed early with you was a cool privilege I didn't yet know how to put into words. "Kiss kiss, good night" you responded in Chinese. I'd soon drift off to sleep enveloped in your scent, the one that I grew-up to recognize as "grandparents' smell!" The one I grinned happily about, the one I knew would keep me safe as I scurried in the darkest corners of your cluttered closet in the Baby Room during hide-and-seek. As long as I surrounded myself in that things would turn out okay, you'd always find me.
You helped me practice my Cantonese, patiently going over words and gently correcting me. Smiling as you laughed at my half-assed Chin-glish when I stuck English words awkwardly in the middle of Chinese sentences. I never felt any shame in not knowing something, I always felt freely able to ask you anything - hopping from one subject to the next: "what are mutual funds, and why do you invest in them?" "How do you make your chocolate chip cookies?" "Why is it called dim sum?" "How did you knit that?" 
For some 20 years you worked at the Boston Public Library, eagerly telling me "you can get any book you want, I can borrow it for you, renew it as many times as you need.." On the weekends you'd tell me about how you walk every day to work from your little house on Mission Hill (my first home mere minutes from Children's Hospital). You'd tell me about the vegetables and fruits you got every week from Haymarket Square, the prices of each and how much you'd saved. You'd talk to me about all of this and more as we sat snapping stems off the pile of string beans, the ones that you'd bought for $3.00 at Haymarket.

There wasn't anything that you didn't seem to know. Nowhere in Boston that you hadn't already been. Nothing that you didn't already attempt to try in this new foreign city that you immigrated to so long ago; a city whose sidewalks and public transportation you knew as well as the soft wrinkles in your hands.

Then one summer day, not so long ago, we were celebrating my younger brother's 19th birthday at your house. We were all gathered around that same glossy brown table, the one that is now cluttered with things that you have collected or found - and grandpa brought out your walker. I looked at you, the char siu bao half hanging out of my mouth: no this couldn't be! When did this happen? How? My silent questions begged to leap from my mouth, but I knew somehow that there wouldn't be a right answer for any of them. No answer good enough.
"Oh I don't need that yet, but it is there just in case, for the future. Traveling on the buses and subways with that is going to be so troublesome." You said in response to my silence.

At once I knew that you seemed somewhat ashamed of the walker. I recognized that tough-voice meant to brush off the adaptive equipment; saw what you saw in it: the hindrance to the life you've created and known for so long, perhaps even felt the slight fear you feel of needing it.
It is weird, Po Po. Here I am having been born with a disability, and fairly dependent on my wheelchair and my walker for so many years - those are things that I see as giving me the boost of independence, so that I may create the life that I know without any hindrances.
I will always be your granddaughter, the one who asks annoying questions and pips in with random comments - always asking you if you'd like to try this or that. And you will always be the independent, sharp, friendly, kind, and patient grandmother. I just hope you know that no matter how wrinkly, shaky, stuttery, and no matter how many heart medications or pieces of adaptive equipment you may need - nothing will ever change how I see you. I will help you see to that.

With great admiration & awe,
Sandy

*Po Po in Cantonese means maternal grandmother

Alright, I will try. I will try to explain myself during those moments I have had as a child, as a teen, and as a young adult. Maybe it will aid in clarifying the fog for that other person. Maybe it will help you understand why your spouse, child, friend, grandson is thinking these thoughts. Enough with the maybe's already, I won't know until I try:

"It's my fault that mom cries so much..." "It's my fault that we can't go anywhere fun this summer.." "It's my fault that dad has to work so much.." "It's my fault that we are taking so long.." "It's my fault dad has trouble lifting me and the cast.."
Why did I do this? Why did I think these thoughts? Because it was, and is, so easy. It happens with such speed and ease that when I really think about what just crossed my mind - it is a little disturbing I can get there that quickly.

When I was a child it was the simple explanation that would morph into some uglier thing in my head. The simple explanation was usually something like, "it's not safe for you to do this..." and of course somewhere in my screaming tantrums that translated to: "you have brittle bones and the consequence is you cannot do this." That wasn't the reality of the situation at all! O.I. was never used as a negative consequence when I was growing-up - it was never presented to me that way. However, in the world-view of a child everything is black-and-white; my perception of reality was clear-cut and concrete, I had no ability to think about anything other than what was five feet in front of me. So began the phase of "it's not fair!" 
Recognizing that something "is not fair!" essentially acknowledges that there is an alternative that would be preferable; however, that alternative is not attainable or allowable. In other words these were my teen years. For any thing I was not allowed to do my brain schemed of ways to do it anyway, just more hidden or away from prying eyes. My teen years were riddled with alternative-half-cracked solutions I jimmied up. But I did some of those things because it was my way of not having to deal with the reality; I refused to accept any part of me that prevented me from doing what everyone else did. In my mind I thought that if I did accept myself, I would be facing some alien I was too cool to give the time of day to. I didn't realize that facing myself wouldn't make who I was my fault. Whatever foresight my tunnel-vision managed to obscure did not let me see that my differences did not exist in order to be blamed.
Through some series of events and life experiences I got tired of playing Bugs Bunny. I got tired of always trying to escape from the traps, from being the clown with a trick or twelve up her sleeves - always at the ready to slip away. So I have begun to take the time to see what the heck is in the mirror when I look at my reflection. Some days it is easier to do than others; some days I am lazy and would rather not take the effort to grapple with what's in front of me. Some days I still mumble "it's not fair, if only I weren't..." and I get this immediate sense of coziness, because that is what I grew-up saying for so many years. It's cozy not because it 'fits' with how I see myself now, but it is cozy because that was a saying throughout my childhood - there is a great familiarity for me in that mentality. It's still so easy to do.

In between all of this, of course I had family, friends, teachers, etc. who said "this isn't your fault.." "don't think like that, you didn't ask for this.." "don't blame yourself, you can't help the way things are.."  And usually I would respond with a tireless huff and a long drawn out "I KNOooooowww-uhhh" like a foghorn warning away the obvious.. because I did in fact know I was not to blame; I knew that the explanation was much more complicated than that, and that it had to do with making babies, genetics, and other weird things.
But just as I eventually grew-up and learned (am still learning) how to accept/manage the things I get thrown, it might be helpful for someone out there -- if the individuals in that person's life... also learned to accept the reality of these thoughts. Because chances are that they will be thought regardless of what we are told by our loved ones. Acknowledging that such thoughts do wander in and out during various life stages just might help that person try a little less fleeing, and try a little more growing. Now it's your turn: You won't know until you try.

This summer I have several teen writers who will be sharing their perspective on living with O.I. The first post in this series comes from older sister H who has a younger sister with O.I. H is a busy high school student who will be going on a mission trip to Jamaica later this summer! 

Having two brothers means there is usually something ridiculous and goofy going on at home. I am the middle child and my two brothers are Timmy, and Andrew - the boys are ten years apart but these days it can be difficult to tell them apart from afar. Growing up with them involved many hours watching soccer games, purposely destroying their Lego structures, playing with transformers, and being the victim of Tickle-Tortures. Tickle-Torture is exactly what it sounds like except when you're forever smaller than your younger brother, it somehow seems even more torturous.

All in good fun, of course.

But when you're in the second grade and seven years old, it might not immediately seem like having two brothers is all in good fun. When my parents first told me that I'd have a younger brother I wondered what it would be like to be a big sister. And now that I think about it, it never actually occurred to me that there was a possibility Andrew could have O.I. (He doesn't - neither of my brother's do).
Instead I wondered what it would be like to have to share a room with a baby brother. What would it be like to have to share my toys with him? What would it be like to teach him how to read? What would it be like to have crawl-races on our living room floor together? As I sat next to my parents on our couch that night when we found out, I felt an immediate enormity - both in size and in importance!

What if that day in 1993 hadn't happened? What if my parents never said I would have a younger sibling? How would things be different? Who would I be today?

For starters I don't think I'd be half as responsible as I am today. When he was a baby, Andrew used to have his own set of medical issues involving G.I. problems - he vomited a lot and for almost his first year one or two years required a feeding tube inserted through his nose. From the perspective of a young child - a seven or eight year old - this was horrifying! I was terrified and worried constantly about whether or not he would grow-up to be 'normal' in the way that I, of course, considered myself to be normal. Would he be able to go to school without kids making fun of him? Or would he need to walk around with a tube up his nose forever? Around that time I made up my mind that I would be the one to teach him how awesome it is to be visibly different, and how you can still have plenty of friends and lead a normal life despite any challenges.
I also saw the stress and strain that this brought on for my parents. Mom and dad fought constantly during this time because of the difficulties involved with caring for two children with special needs -- so I immediately began to try my hardest to take care of myself. Although I could always see the worry lines and stress that weighed on my parents every time I fractured a bone, watching them go through separate medical issues with my younger brother had a wholly different impact on me. It led me to believe the baby needs mom and dad more than I do right now. Someone else will always need more help than I do, and there are somethings I can do on my own now. Whether that meant picking out my own clothes in the morning, changing the batteries in my hearing-aids, or learning to do my own transfers from toilet to wheelchair with various casts on -- at seven I began to learn that independence is a skill that isn't just for my own benefit, but because it would also be helpful to others if I were more independent.

Me and Andrew celebrating his birthday.

By the time Andrew was in Kindergarten all of his G.I. problems had gone away. Like any other teenage boy Andrew now eats everything, and will probably be taller than my older brother if he isn't already (despite whatever Timmy says). Between the time Andrew was transitioning from preschool to kindergarten we found out that like me, my younger brother also has a hearing-loss. The neutral colored clunky ear pieces that hung off his ears were a source of embarrassment for Andrew. He despises drawing any attention to himself, and in general would much rather blend in and cause as little disturbance as possible. That is, until he came across the violin.
Most who know my younger brother (in real life) also know that he is a brilliant musician. He took up the violin not long after we first discovered his hearing-loss and has never looked back since. When he plays the last thing on your mind is hearing-loss or hearing-aid because the precision of his finger-placement, the exact timing of every note is so perfect that when he plays in the background when I am on the phone - friends often say "Sandy what recording are you listening to?"

By watching Andrew find confidence with his hearing-loss through his passion for music, and playing the violin -- I have learned to find confidence in connecting with others through my writing. Had my younger brother not been born I wouldn't have been able to see this magic creativity offers by watching someone else perform it.

So had my younger brother not been born, those are just a few of the things I would be missing out on. Sure, maybe I would eventually learn to become more independent. Maybe I would have eventually learned how to do my own transfers with a cast on. And maybe I would have discovered the pleasant effect classical music has on my concentration -- but would it have been the same? Would it have been as hilarious or surprising? Would I have cared about the things I do now in the same way? Would I still be the same person? No, absolutely not. 

In what I am about to write I might be stating many erroneous generalizations and stereotypes... I assure you that I'm not doing it out of ignorance. And I can pinky-swear promise that I never mean to offend. This is just another blog post, and as usual, I am only writing from what I know and have experienced. (Can you tell that I am extremely nervous about the topic for today? Because I am). 

I'm not really sure what it is about Asian families or Asian-American families but many of our parents like to compare us to other children. Specifically, our parents like to compare us to other Asian kids within our own family, to the Asian kids of their friends, to our classmates who are Asian, to the Asian kid down the street, or compare us to the Asian kid (we don't even know) sitting two tables away at the Dim Sum table. These were the types of conversations that surrounded my dinner table, and after dinner table discussions:  
"Your brother scored a perfect SAT score so why can't you?"
"At the parent-teacher conference I heard [Insert Asian classmate's name] got top honors in science, she's so smart - why don't you be more like her?"
"Why don't you eat more vegetables and tofu? Look at how many vegetables she's eating."
"Look at how respectful he's being and how terrible your behavior is, be more like him." 

For many of my American friends/readers it might be difficult to understand this mindset, but for me and my brothers it was just a part of the culture and parenting-style. These conversations took on a this is the-way-things-are-done-in-our-family attitude; I am sure every household and family has some example of this, regardless of race, ethnicity, and culture. That's what makes your family your family. 
It seemed like whatever aspect of our identity our parents felt was most important to "shape-up and perfect" would be most likely to be critiqued, or sought out for comparison. Usually this was intellect, grades, work ethic, parental respect, physical appearance etc.

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 

In previous entries I have talked about what is going through my head as my body registers that a fracture has just occurred. But what is going on around me? Let's shift the camera lens to my mother --

Having had O.I. for some twenty odd years it is interesting to reflect on how it has changed in the span of my lifetime. While the most obvious changes are in the areas of medicine and treatments, there are many other aspects of life that O.I. affects too! For this post I thought it would be neat to write a blurb on how O.I. has changed in the Educational, Familial, Social, and Legislative realms.

Educational
Since I've spent my entire life as a student, stepping out of this perspective and looking at how O.I. has changed in this area was a bit difficult. But I've managed to come up with a few things: First off I've gained independence and trust. It used to be that students with disabilities were looked down upon, or treated in a condescending manner. I'm not saying that this behavior has completely vanished, but in my experience I have gotten a lot less of that attitude. It seems to me that throughout my education schools have been more willing to let me lead my own life, and be my own expert in terms of what services / assistance I needed. There is also more of an effort to have inclusive classrooms and lessons that seek to teach the value of each student's differences and abilities. Secondly, expectations have changed. Twenty years ago it was rare that a student with a disability would go off to college or attend a study away program. Now access to higher education is encouraged! There are services and agencies that will help with transitions between high school and college; colleges and universities are increasingly more adapting and accessible; and more and more children with disabilities are able to realize their own abilities and impact with their education. Of course the saying here is all too true: we have come a long way but there is still so much to be done!

Familial
I am nowhere near this state of life but I've noticed the increasing number of O.I.'ers starting families. The kind with children, family vacations, and maybe even a pet dog. What I meant to say here is that the possibility of having offspring is now more medically possible than it was twenty years ago. A few years ago I remember a major news story about the mother with severe O.I. and her unaffected husband who had a child; the story covered the conception, birth, and described some of the family's day-to-day life experience and worries. Not only was this made known to the 'mainstream society' but in doing so it normalized what an O.I. family might be like. It let America and the rest of the world realize that, for us, having a family is possible! Another major influence in this area was the Picoult book Handle with Care. Whether you thought it was a good book or not doesn't matter; it's the fact that the trials and realities of an O.I. family was put forth into mainstream culture. This book brought a lot of chatter and awareness for the O.I. community; even more so it also allowed many in the O.I. community to bond over the challenging family dynamics that having a disabled or O.I. child can bring. Lastly, is the area of adoption. Twenty years ago I'm not sure that children with O.I. or any other severe / complex disability would even make it onto an adoption agency's radar. Now there are outlets for children with O.I. who are waiting for a home and are (hopefully!) being placed in knowledgeable, aware, capable, and loving families.

Social
As a twenty-something this is the most exciting area for me. With the seamless incorporation of social media into my life, it made connecting with other O.I.'ers that much more effortless! NEWS FLASH: THIS BLOG'S EXISTENCE! It took only 6 months for me to connect with some 300 odd people from all around the world who all have some connection with O.I. Many of you are parents of O.I. children and others of you have O.I. yourselves, but twenty years ago that would not have been as easily or quickly accomplished. Our social connections have had a tremendous influence on our day-to-day lives. Everyday there is someone reaching out for support on one of the O.I. online forums, someone else is looking for resources in her state, and always a young kid looking to see if there's anyone else out there like me? Socially our lives have changed because we are all less alone. While this has some drawbacks, I believe that for the disability and O.I. community the pros are life changing. We are able to share, connect, reach-out to, and support one another in ways and numbers that weren't possible twenty years ago.

Legislative
The Americans with Disabilities Act (ADA) was enacted in 1990. This was well within my lifetime although at the time I was probably just beginning to read chapter books. This act enforces and ensures equal access and opportunity in the areas of employment, transportation, telecommunications, and public/government accommodations and commercial facilities to Americans with disabilities. This is the document that prevents discrimination when I'm trying to look for a job; it allows me to be heard when I complain about broken elevators in the public transportation system; it mandates appropriate accommodations for me in the workplace; those are the words that allows public libraries to be accessible to me... and so much more! Since that time the ADA has been amended to for language - in 2008 the President broadened such terms as "major life activities" and revised its definition of "substantially limits;" it also changed language so that those whose disability is episodic or in remission would be included in its coverage, ultimately in doing all of this the document now becomes more inclusive of those with disabilities that may have otherwise not been protected under the ADA. Another piece of legislation that happened during my lifetime is the Individuals with Disabilities Education Improvement Act (IDEA) of 2004. For those of you with children who are in special education programs this is the act that covers IEP plans or 504 plans - both of which I have personally benefited from throughout my education.

The second we entered the Children's & Young Adult reading room I'd squirm out of my dad's arms. At that point I was still about the size of a three year old but was actually between the ages of seven and ten; my manual wheelchair wasn't yet fold-able and so my parents thought  it easier to carry me everywhere in their arms. They'd set me down on the carpet and, as if I were in my own home, I'd comfortably do a crawl-hop around the bookshelves - pointing to the ones I wanted as my mom or dad took them out for me.

When I was much younger my mom would bring me to the library with her. Every week we'd come and she'd set me down on the soft red carpet, showing me how library books were organized by author last name, and how to tell which books were appropriate or good for me to read.
"You see how this label has the 'An I Can Read Book' on it? Those are the ones you should choose." Soon I would learn to not only find those labels, but also recognized the pictures on the cover and then the words of the title - unsurprisingly many of these books turned out to begin with Frog and Toad....
"Do you see this shiny medal sticker on the book? That's also a sign that it's a good book." Most of the time while she was doing that I was clambering on top of the over-sized stuffed Curious George that sat slumped in the corner. That was my routine every weekend, from when I could first confidently crawl-hop around until at least the first grade.

As immigrants to the country my parents didn't know what made-up the canon of children's literature in the U.S. So as I got older they were unable to choose books for me, couldn't decipher which were the 'good books', but still they would insist that I read all the time. Soon they entrusted my literary education to not only my teachers at school, but to the librarians and the reading lists organized by grade, kept filed away in a milk crate. My dad would pick a list and I'd simply make my way down it, crawl-hopping around to each of the towering red shelves. I'd crawl to the end of each shelf and from the ground look up at the index card taped to the side, following the instructions my mother had taught me years before about the alphabetization of author's last names.
Thinking about it now it must have been quite the odd little sight. There was me on the ground bunny- hopping around. My dad standing behind me with the list in hand following my lead, usually holding one of the little reference pencils (the ones that never have erasers) to cross off each title that I found. If I was only borrowing any less than four books I would shove them along in front of me, pushing them ahead on the floor like a stack of hockey pucks and then bunny-hop towards it. Being low to the ground I never paid any attention to the other adults around me, and the librarians all knew my name and were used to my 'peculiar way of doing things,' in fact if anything they loved my act! But once in awhile I would see the reaction another adult had whenever they saw what was going on,

"You know, you really shouldn't let her do that." I recall one lady telling my dad.
"Pardon?" My dad had set the stack of library books by the check-out counter and had picked me up while we stood in line.
"Why would you let your daughter crawl on the floor like that? It's dangerous and probably not very clean." She continued in one of those obvious-parental-styling voices.
"She's fine. She's not as young as she looks, she's eight, almost nine. It's not like she'll eat things off the floor. This is just the way she does things. She doesn't bring her wheelchair to the library." I watched my dad trying to explain and could see his words bounce off her face like rubber balls off a wall. It was pointless. Even at that age it was clear to me that she would never understand even if we spent all day explaining. And, perhaps more importantly, it was also clear to me that it didn't matter whether or not she understood my 'way of doing things.' My dad explained all that he felt he needed to explain, he spoke truthfully and defended his daughter's differences. That was all the situation required and as his child I learned that most of the time you won't ever get people to see your perspective, the point was that you tried and gave it your honest effort. And then you continue on doing your own thing because it works for you. At the time bunny-hopping and crawling around the library was what worked for me and that's all that mattered.

The line had moved on and it was our turn to check-out our books. I tugged forward and leaned towards the smiling librarian who was waiting for us, like a horse following the pull of its reins my dad walked up to the counter.
"Hi Sandy! Did you find everything you were looking for today?" I happily nodded at her and watched her scan the books, sliding it over the mysterious metal scanner and into a plastic bag. As my dad hoisted the bag over his shoulder and held me in his other arm I waved good-bye,
"Have fun reading these, I can't wait to see what you get next week!" 
--
Side Note: 
I can't stress how important reading is for children. Literacy and education are probably among my top three most important 'causes' in life. Every time I write another blog post I am always humbled by the comments and feedback I get, sometimes they are about the tips I offer and other times about the stories I share. Whenever someone compliments me on my ability to express myself though I always think back to those days that I shared above. Had I not been pushed to read, read, and read - this (among so many other things) probably would never have been possible to begin with. SO PLEASE, READ & READ TO YOUR CHILDREN!

This post comes from a story my mother used to tell me.

At first she didn't think she would be able to do it. She doubted whether or not she had the mental and emotional strength to care for an extremely fragile and tiny human being, that human being was her infant daughter, me. My mother was afraid of hurting me, of causing more damage, she didn't want to be responsible and probably felt a certain amount of dread and guilt when it came to taking care of me. Although it used to hurt to hear her tell me this, I have come to be able to place myself in her shoes: and I just can't blame her for how she felt. Mentally I have decided I cannot choose to be angry at her, and emotionally there is no longer any feeling of hatred or resentment whenever this is brought up in my family. I can't be angry with her because she wanted to give up on me when I was born. It must have been scary and terrifying and a whole slew of other emotions that ... quite frankly... I hope to never experience myself. (Being able to forgive is a whole different story though, that process has taken many years of my 20 something years of living). And so it was that for much of my early infancy I was sent away, placed in the care of my paternal grandmother.

"All of my paycheck went to babysitting and nannying fees that you and your older brother required" she would tell me. It didn't surprise me that my mother only trusted family members to look after me, her only disabled child. I am also sure that it would have been difficult or near impossible to find a babysitter skilled enough to know what to do with an infant who had O.I.
"I only trusted family members. At least this way everything would still be kept in the family, especially if something went wrong. There was no need to involve other people or strangers. I was tired of hospitals and strange doctors already."

In the re-telling of this story my mother always made it a point to let me know that she came and visited me every opportunity she had.
"Whenever your father had the day off or any free time we would drive over and come see you." I lived at my grandmother's apartment, "all of your furniture and medical equipment was over there. Your crib, your bathtub, the special seat you used, any of your splints and casts -- all of that was over there. You lived there. Most of the time you just lay on the couch and watched t.v., you were quiet unless something was wrong, and other than the broken bones you were a non-fussy baby." For awhile there didn't seem to be any issues. I was content, healthy, and seemingly happy. My grandmother was getting paid and had no complaints, and my mother was able to continue on with her job and career as an accountant.

It happened when she came to visit one afternoon,
"One of your arms wasn't moving and I noticed it right away. You were a baby and normally babies are constantly fidgeting and moving about, everything else was moving except for one of your arms and I realized something was wrong." To this day I find it shocking that my mother could immediately tell that something was wrong, but it is also relieving. It's relieving to know that despite sending me away as a baby my mom was somehow still connected to me, in fact it makes me glad to know that her mother-instincts were still on point when it came to my well-being.
"I told your grandmother that I think something is wrong with your arm and that I should take you to the doctor. But she refused to believe that anything was wrong. She kept insisting that you weren't crying and that you were happily watching t.v. But I knew something wasn't right. My gut told me." Somewhere in the conversations my mother and grandmother were having was a great misunderstanding.

My grandmother interpreted my mother's concern as accusing her of having done something wrong, or worse injuring my arm. But this in fact wasn't at all the case.
"Since I knew you had a brittle bones disease I knew it wasn't because of anything your grandmother may have done. This is just something that happens with you and I am not sure she ever understood, I wasn't blaming her" my mother would say.
"I told your grandmother that even though you were a baby, in your mind you probably knew that it was broken and you had taught and trained yourself to not move something that was broken. I assumed you weren't crying because you had probably cried enough. I believed you had no more tears to show that you were in pain, I thought you were probably tired from having cried so much already."

Every time I heard this story I was always amazed by how much my mother "just knew" and how accurate her "gut instinct" was. This relationship isn't something that I can really describe but I am sure many other OI parents are familiar with this 'feeling.' Although now that I think about it it's probably not just limited to OI parents, probably every parent has this ability -- it's like a superpower, another sense that clues parents into what may otherwise be indescribable for a child. (Pretty cool for a parent! Sometimes slightly annoying for a child!) 
After that incident occurred (and it turned out my mother was right, I did in fact break my arm), she decided to stop sending her children away for other people to care for. She realized that not only did she just know what to do but in fact with practice, and by being around her kids everyday she did in fact have it in her to raise and care for us. Over time and with numerous struggles in the process my mother became less fearful of my limitations and disability. My mom's ability to be my full-time care taker as a child took patience, experience, failures, mistakes, and a strength that grew over time; as her daughter I won't know what else it took but I'm sure there is much more to it than just that. (I MEAN, LOOK AT HOW I'VE TURNED OUT! :-P)


Now that I've written this post I'm beginning to wonder why I felt the need to write it out. I think this is going to be one of those stories I wrote without fully understanding the point myself. There seems to be too many lessons to be learned and those lessons will probably vary depending on the point of view (are you a child with O.I.? Or are you the parent? Or are you the relative? Or are you a caretaker?). I believe that this is one of those stories where the meaning will evolve over time. When I read this in five years I will probably get something very different from the story than what I get now...and that leads me to believe that you probably will too.

At this point in my life I would rather raise a drooling three-headed dog than a human being, I'm just not interested in having kids. It's more than the genetic risk or the potential damage it would do to my physical anatomy, right now I have an aversion to all crapping, gurgling, milk chugging, and diaper-changing babies. When other people are "ooh-ing" and "aww-ing" over babies I automatically zone out. To me the wisps of fish-scale clouds are far more interesting. Of course given how old I am this could easily change in the next 10 years...(is this what people mean when they say life is an adventure?? Because to me it's just shit scary!)

But this doesn't mean that I have my own ideas of parenting. In the natural progression of this blog I've written many entries that inadvertently comment on parenting, and what I think is "the best thing to do." Probably .009% of these comments come from my brain, but the rest comes from experience - from what my own parents have done. Whether I intended to or not I have done it over and over again: What would I do if I had an O.I. child? What would I do the same as my parents? What would I do differently? 




5 Things I would do Differently:

1. Instead of isolating me from other O.I'ers I would encourage more interaction with O.I'ers. Whether that means camps, or conferences -- I now understand the benefits of being a part of the community. Too many times growing up I would wonder this question silently to myself What do other kids like me do? How do adults with O.I. do this? It'd be so much easier if I knew someone like me. Sure, O.I. might be a very rare condition but from my facebook page alone, I know that 241 of you exist!! 
2. Though my parents did this on occasion I wish they would do this more, particularly when I was a teenager: Put the person first and the O.I. second. Not only does this enforce a life time of 'can-do' mentality, but it strengthens skills in adaptation. Learning to adapt life and the things you want to do to the disability instead of the other way around is empowering, and to me, is critical to living successfully with a disability. Had my parents stressed this more with me I would be less afraid to try new things or feel less like I need to "prove" myself.
3. Trust that I will figure things out on my own. My parents had a tendency to jump to me and my brothers' every beck and call (we were/are incredibly spoiled and in many ways I find it wrong and slightly embarrassing). I think this is similar to the point above -- allow me to figure out how to adapt instead of being reliant and counting on someone else always being there. 
4. Perhaps it's because the rest of my family is unaffected by O.I. that it's difficult/impossible for them to do this, but I wish my parents had been more open to discuss the differences between having a disability and being 'normal.' Especially during the time of my life when it was most consciously obvious to me, during adolescence. 
5. Don't hide feelings of being helpless or scared. I've said this before but I will say it again: when kids see you are vulnerable that's how they know you're human too. Parents will seem less like they are 2000 Light years away (Green Day reference!) and it will be easier to bridge the gap, especially if the gene is a mutation and no one else in the family has O.I.

There's tons of literature out there about this topic. Lots of doctors, therapists, psychologists, psychiatrists, disability & child specialists have all commented and given their 'expert' opinions. Before you read on you should know this: I have read NOTHING on this subject. Just like everything else in here I am writing from experience and from my perspective (unless I say otherwise).
--

It didn't matter how many times she whispered "it's okay now," all the smiles she forced, or the joy she shared with me as I bathed a newly freed limb from a cast. I always knew that there was something about me that did something to my mother. Whatever that SOMETHING was I could almost hold it in my hands when she let me hold my old cast on the way home from the hospital, I could almost feel it when she gave me sponge baths while I was in a body cast, and I almost saw it along the tight rope line of her lips that quivered when she was just about to cry. I knew, growing up, that this something was a thing only I had, my brothers didn't, not even my dad had this effect on her - no one else in my family could do what I did to my mother. And that isolation is what made things so tangled.

My mother made it no secret that she saw a therapist shortly after I was born. I think that's when the alone-ness and the solitary struggles began to set in, because she also made it no secret that she found the therapy sessions to be "useless. At the end of the day talking about my feelings didn't cure you, you still broke just as many bones, and no one could help me." Since I'm the kid with the disease that no one else in my family has, I know what it feels like to live with something alone. Sure at times it has been difficult and frustrating, but it's a feeling that I was born with and something I continually learn to cope with. It feels natural to me. But I have often wondered many times what it is like to help and love someone alone. To not know whether your next decision will hurt or help? And when things do go awry, who do you turn to to vent? Or for a solution? Which gut instinct will you rely on when the smallest nudge of one domino will cause a series of others to collapse at random? And those collapses could bring such a screeching and visceral pain regardless of the good-nature of the intentions.

So at a young age I learned, in a very literal sense, that actions have consequences. Most of the consequences I had experienced by the time I was six or seven were negative; they were painful and involved a lot of screaming and crying that sounded like it came from a wild animal that had been forced against its nature into shackles. Sitting next to your parents in a hospital waiting room, not being able to move leaves you little else to do but observe (or read); I observed my parents, my mom in particular, fascinated me. Around then, I think, was when I began to realize that just because I was the one living with O.I. on my own, that didn't mean I was necessarily the only one "dealing" with it. I saw how my parents had to help take care of me, had to help me get dressed in the mornings when I had a cast on, had to help keep the cast dry in the shower, and helped me to turn onto my side in the middle of the night. I saw how hard my mother would try to not cry or get too worried as she sat next to me. I saw how she would wince in pain whenever the x-ray technician positioned me wrong, or how relieved she looked when I was finally laying on the table as the fiber glass dried. It occurred to me then that just because she didn't have brittle bones, it didn't mean she couldn't feel just as I was feeling.
From my perspective I didn't understand (and I still don't) what the pain she felt was like, or where it came from. When she winced, what was she wincing from? From looking at me? Or did she feel something too? As the years went by I have long stopped trying to figure that out. But I did recognize that it was pain for her. I also recognized that somehow it wasn't a pain that could heal in the same physical sense that my bones could heal after three months. This was a pain that I think she harbored, internalized, and added to it with every fracture that happened. I'm not sure if these pains were ever healed or maybe they were just forgotten as my fractures dwindled when I got older; but the point is, I hated that. I began to hate that she would feel this agony with me, I despised the fact that I didn't have evidence that my mom's pains healed in a way that I could see on an x-ray, and most of all I was frustrated by its cumulative presence. It wasn't fair! I'm the one with the brittle bones, I should be the only one who has to deal with this! But of course as I continued to get older I knew that this was not the way a family functions, that though the isolation will always be there with effort and communication we could become closer - minimize the isolation. I have often thought that family members are the closest anyone could be to another person while still being completely distant.


I could go on and on and on about this but to be honest this is as much as I have been able to put into words. Everything I have shared here has taken me years to understand and think through. I have pummeled these thoughts into a pulp and it is with incredible shyness that I share them. I hope that someday I'll be able to return to this topic and share some more, but until then that's all I've got for now.

The intangible stuff between mother & child:

• Whatever tips I might offer here are dependent on so many things I don't know about you. Like family dynamics, the severity of O.I., what the birth was like, etc. But I have always felt that honesty is a good place to begin, and from what I have learned so far in my life feelings are some of the most honest aspects of a person.
• As the child I will tell you that we are all very intuitive. You might think you're good at hiding it, but chances are you probably aren't. Sorry.
• I've said this before but I'll say it again: Everyone needs to know it's not their fault. 
• Guilt can come in so many disguises. What I wrote above is only one form of guilt but I know that there are many others i.e. the guilt of giving birth to a disabled child, the guilt of causing pain, the guilt of causing a fracture, the guilt of knowing you could have stopped a fracture etc. Whatever form it comes in I think it's important to know that it's natural to feel these things/have these reactions, but it's also important to address them. Help your child understand these feelings instead of sweeping them under the rug! Like I said before, your child probably has some sense that something is up even if they can't put it into words yet. 

I'll be honest, I wish I could offer some more tips in this area because I know that it's such a prevalent issue among so many families with disabled children - but I think I also need to recognize that there's somethings in life that I have yet to fully understand myself.