Showing posts with label OI parents. Show all posts

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.

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. 

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. 


    

These incidents happened more than a handful of times, but not too frequently to make them a regular occurrence. But every now and then a fracture would happen and my parents couldn't get me to my orthopedic right away.
When these injuries happened it meant my parents would put a temporary brace or splint on the fractured area. They would help get me into a reclined position on my bed, keep my brothers from playing near me, put a stack of books and a bronze bell in case I needed anything near by. Going to sleep this way was the toughest part of the whole situation for me. Despite the temporary splints and braces, the fractures was still fresh and sensitive to any movement or the slightest touch. Fresh fractures also seem to be the breeding ground for muscle spasms, and though I wasn't physically moving it felt like my muscles were tripping the light fantastic till the break of dawn. I would go to sleep repeating in my head, "don't move in your sleep, don't move in your sleep, don't move in your sleep..." hoping that maybe I could teach my body that having brittle bones can be less painful if it would just understand: don't move. 


Eventually after drifting off and then jolting awake, and then slightly shifting my body weight, or itching a spot, or cracking my back, or ringing the bell for another glass of milk, or flipping the pillow over again -- I would fall asleep. Finally I would reach some sort of compromise between the fresh fracture and my body's clear exhaustion. Both would collapse across some invisible dotted line that stretched between Point A: Moment of Fracture to Point B: Moment of Healing. The two parties are completely zonked out, snoring, drooling, deep into la-la land - it translates into some rest for me.

And then morning would come. Usually I would try to wake-up before my parents awoke in an attempt to enjoy the calm before things started being moved around again. Even to this day, there is nothing I despise more and find more uncomfortable than a fresh fracture being moved. I hate it. I would rather repeat all of high school math than be moved around with a non-stabilized broken femur. Please, spare me. But that dreaded moment would come. When I got older, around middle school, I would tell myself it needs to get much worse before it gets much better. And that was the only thing that I kept in my head as I gritted my teeth while my parents, inch by inch:
Transferred me from the bed to the chair. And then from the chair to the toilet. And then from toilet back to the chair. From the chair to the car.. (all the while I am whimpering like a baby)... and on until we had arrived in the x-ray room, and are well on to making a little bit of progress towards Point B: Moment of Healing.

The mental and physical sensation of pain is always going to be overwhelming. What's more is that it's only ever going to be an overwhelming sensation that you can understand. You're the one who knows how big it is, how persistent it is, when it will appear, when it fades, why it comes, or when it goes. So with all of these facts in mind, what are ways that we can better manage the pain? There are a million pain management techniques and tips out there. There is only one that I have found that works, for me, every single time. Inch-by-inch and bite-sized pieces:
When I lay in bed with a fresh fracture thinking about how I need to somehow get from there into the car, and then onto the highway with all of its swerves and bumps - I will only want to curl up into bed and refuse to move. However, if I think - now I need to move 4inches over and into my chair. The pain seems far more bearable and less infinite. In fact, the pain becomes finite because soon I know I'll be able to say: now I need to move from my chair to the examination table so he can put the cast on and it's all done. Destination Point B: Arrived. 

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.

Parents of kids with O.I. are often referring to "the scream." This is the noise that sends our parents scurrying to our side and then whipping out the bag of old splints and bandages that appears out of thin air. It is not the same cry you hear when a toddler is getting a booster shot, and it isn't the same heartbreaking wail when a child's hopes are crushed at the toy store. It is part shriek, part cry, part scream, and all of it is directed at a sliver of wispy gray-white that no one can see until hours later on the x-ray. And even then it is sometimes invisible.
There comes a time when the scream doesn't serve so much as an "alarm" for our caretakers because we realize for ourselves what has happened -- we begin to recognize that the pain is coming from a broken bone, just another fracture. And instead of "the scream" we are then able to say "I just broke a bone.."
So when is that moment? How can caretakers or parents help kids develop that recognition? How do kids with O.I. become better aware and more knowledgeable of where a fracture is? How do we know how 'badly' it is broken? Or even how many places the bone is broken in?
There are a few tips that can help make the experience a little less frightening and a little less uncertain ---

Structuring the Suddenness: 
Warning: Just because you are raising a "Dr. Self" doesn't mean medical opinions should be ignored! 

• It is always most important to listen to the child! Or become acutely aware of where their hands are gripping, or which limb has become oddly limp and unused. Just because you may have heard a crack coming from there, doesn't mean that may be where the bone is broken!
• Let the child hold the broken bone as much as possible - particularly during the transition before going to the doctor's. I know that from my own experience it is difficult for parents to not want to rush in and 'fix' everything themselves; however, knowing how the broken bone feels to us, where it is, how tightly to hold, what position to rest the broken arm in are all small details that begin to build our awareness of our bodies. The body is learning even when things may be breaking down.
• Know which questions to ask. At the time of a fracture, especially for an O.I. fracture, "how did this happen?" Might be one of the first two questions that are on the tip of your tongue. But think about it!! The child has O.I.!! And most of the time, especially for young children, we aren't always aware of how the bone suddenly broke. From my experience, I used to become extremely frustrated with school nurses who would ask me "how did this happen? What happened?" before they would assess where the injury was. It doesn't help the O.I. child when you are trying to figure out the "how and why's" while they are in pain; in my experience in fact, it only made me feel worse. Instead figure out "where does it hurt?" "What hurts?" "How much does it hurt?" "Can you wiggle your fingers?" "Does your leg feel numb?" Thinking about fracture prevention is important, but not until after you have taken care of the incident at hand first!
• Let the child be a part of the 'grown-up' discussion. This might be difficult because the fine line between protecting and shielding are so often blurred. However seeing the x-ray, listening to the doctor talk with my parents about healing time, and becoming 'naturalized' to the language and vocabulary all became useful tools to becoming self-aware of my body. Of course no parent wants their child to hear the doctor say "healing might take about 5 months.." but the reality of it is that we begin to connect the pain to healing-time that is required. It is a difficult connection to describe in words, but understanding that my arms heal faster than my legs or that my ribs take about 2-3 weeks to heal have helped me become better equipped at assessing my own physical abilities.
• Routine. No one likes the idea of breaking bones becoming a routine. But because of the frequency of these incidents the truth is that there is some kind of routine to each of our own fracture management procedures. Whether the child fell off a trampoline, broke a clavicle, or sustained a bruise to the bone -- try to keep some semblance of order in the chaos. I know, I know many of you are thinking Sandy, you just wait until YOU have a kid with O.I and THEN you try doing this..but growing up I have appreciated the order in which my parents dealt with broken bones. It helps to know that small instances in life that can quickly be turned upside down are not reasons to feel despair. It helps to know that just because you broke a bone doing something your brother does all the time doesn't mean you were wrong to do it. And it helps to watch that no matter how badly things feel anything can be righted once again!  

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 --

Most of you already know that I am the only one in my family with O.I. When I was born my parents opted to not have the genetic testing (skin biopsy) to find out which side the gene was on. As a child my parents explained to me that knowing where the 'cause' of the O.I. came from didn't change whether or not I still had the condition, and I grew up being okay with that decision. I still am. I suppose that for the most part I am someone who would prefer to learn how to adapt, manage, or solve a situation as opposed to being curious about the origins of the problem. At the end of the day I go to bed still with the O.I. but I learn each day how to deal with it.

With that said, to my knowledge, I am a mutant. A genetic mutant. Growing up the Teenage Mutant Ninja Turtles were wildly popular among kids and I loved them. (I even dressed up as one for Halloween.. the picture is somewhere..) Rafael, Michaelangelo, Donattelo, and Leonardo were my buddies and it wasn't just because they loved pizza as much as I did. Or taught me to say "cowabunga!" It was because they were the first to make being genetic-errors cool. They were mutants too, the closest thing I had to people who were 'like me.' They were my mutant role models.

When you're a child you lean on your family and parents to show you how to be a person. Everyone comes from some perspective, rules, ideals, values, culture, or some understanding of the world/society in which we live. It is through this construct that our parents and family raise us. If a child is black their family teaches them about what it's like to be black; if they are Eskimos a child is shown how to survive as an Eskimo; if a child is born into a family of politicians they quickly learn about life in public office. But when a genetic mutation happens it means this is a child that has something no one else in the family has. Who does the kid lean on? Who is going to tell the child about the perks or pitfalls? Who serves as the role model? Who is going to show him or her the ropes?
For me much of that was whatever I was surrounded by. Whether it was the Teenage Mutant Ninja Turtles or Roald Dahl's Matilda or Wheels (the wheelchair character from the Burger King's Kids Club).. I learned early on that I couldn't expect my parents or family to have all the answers for me. Other kids might be able to go home and ask their parents why they don't celebrate Christmas and have a Christmas tree, but I couldn't go home and ask my parents "how do I tell my friend I can't go to her gymnastics themed birthday party?" Or "How do I tell my friend about what a genetic disorder is when we're only just beginning to learn the song 'heads, shoulders, knees and toes..knees and toes'?" Well I COULD ask them these questions, but I already knew they wouldn't be able to help. They just wouldn't get it. There were a lot of other situations where I was at a loss in. Who was going to show me how to dance in a wheelchair with that boy at the middle school dance? Who was going to teach me about wheelchair sports? What about all the politically correct and incorrect terms that differentiate a disabled and able-bodied person? How do you open doors with one hand and push with the other? What do you do if you can't reach something and no one is around? What happens if I break a bone and no one is around to help? I am sure that there are a lifetime of these situations that I could list, and I know that these are situations that I will continue to find myself in - questions that I will continue to discover answers for on my own.

There is no doubt in my mind that I wish I had met someone else with O.I., or someone else who used a wheelchair earlier on than I did. I think it would have made a lot of things easier for me, both logistically and socially speaking. But this doesn't mean that I resent the rest of my family for having missed out on this mysterious gene. When I was a kid and was fracturing more frequently (at least once every 4-6 months), when all of the commotion was done and I had gone home in my cast - I used to wish that at least ONE of my parents had O.I. too. Maybe that way they would have been able to warn me about how much it would hurt, or maybe that way they would know the most comfortable way to be picked up when you have a fracture. But no, instead as a kid I was always the one screaming my head off in the cast room -  crying because I didn't know it was going to hurt this much, and because I didn't know when it would stop, and because no one had shown me the way first. Maybe it would hurt less on that hospital table if I knew one of my parents had also felt the jagged burn that comes with a fracture... and then had grown up to raise a family, to have a life, to have survived the ordeals.
But these are thoughts that I would never allow myself to think too long on. I would immediately begin to feel guilty. What am I doing? Why would I wish this on anyone? Sure. It's true that I have managed and have done fairly well with my life, but that doesn't mean that I would want to put anyone through the same situation. Having non-disabled parents and family members is the only family that I've ever known, so of course I wouldn't trade them for anything! In some ways having unaffected family members has forced me to adapt earlier on, and to push myself to 'be like them' (and the majority of the rest of the world) as much as I am able to.

Here's a take away thought: Being a genetic mutant shouldn't just be limited to super heroes or medical labs. For me it's a way of life; it's a way of life that I do my best to live and it's not something that I think about constantly or even daily (or monthly). I live like anyone else does, I have the same questions and life challenges that you do, and in the mornings I put my pants on the same way that you do. After all of the differences that being a genetic mutant may come with - I would argue that there are a lot more similarities between me and the rest of the world than whatever lab tests may reveal, and that is how I continue to proceed.

Posts from this week can be found below --

Most of the posts for this week were more focused on my current/adult life. I talked about my college years, gave advice on the college essay, and went into the joys of being in your 20's. So when I got this week's Fracture Free Friday question it was nice to think back on my childhood... who could dislike the memories of a whimsy and carefree time! :-)

• Monday: In my opinion (and from what my friends say) being in your 20's with a disability is not much unlike being in your  20's without a disability! So, what's it like now? 

• Tuesday: It can be highly amusing to me when people freak out over incidents when my friends are more seriously injured."Trust me, I'm fine."

• Wednesday: This post was geared more towards high school seniors or those applying to college, but the decision of whether or not to disclose your disability is something I am sure many have faced. 

• Thursday: Our society now has a wider and more innovative definition to accessibility because of Steve Jobs. 

• Fracture Free Friday: This week's question dealt with one mother's uncertainty of how to encourage her daughter's dreams of becoming a ballerina but also being realistic. Dreams vs. Reality 

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.

In a previous post I had mentioned that there are a handful of things I wish I could do but I can't, for everything else I have figured out an alternative. Here are those 5 things:


1. Run a marathon. Well, I wish I could run in general. I'm a sucker for all things fast and speedy. But there is something about marathon runners that's incredibly dedicated and determined. To be able to say "I pushed my body through 26miles.." is probably something I won't be able to do any time soon.

2. Snowboard down a mountain. A lot of my friends snowboard. No, I don't want to ski - I want to snowboard. My friends make it sound cool and it looks awesome! Besides there aren't too many ways I can really enjoy winter and the never-ending piles of cold white stuff that we get here in the Northeast. To race down a mountain on a board, fly through the air while you're doing gravity-defying turns and flips, and then land upright (hopefully) -- what's not to love?!

3. Diving into a waterfall. I can't really explain this one but it's just something I want to do.

4. Climb stairs in my wheelchair. This would solve a lot of my day-to-day problems, not to mention it would make it SO much easier to hang out with my friends (most of whom are not wheelchair users). Not only are these special chairs way out of my budget but I also doubt my health insurance would ever say yes, climbing stairs in your chair would dramatically improve your physical health - we will buy it for you. Even if I did somehow manage to get one in my possession some day, I would probably still be paranoid of it malfunctioning in the middle of the staircase or something! What can I say? I'm suspicious of technology..

5. Stop breaking. This would be the ULTIMATE dream for me - but it's not something I've figured out how to do yet. I know, I know, we can't STOP breaking but we can do our best to prevent fractures from happening and strengthen our bodies so that fractures are not as frequent -- but don't we ALL wish we could just STOP already?!


For everything else that I have ever wanted to do that may have seem slightly ... impossible.... I have either just done it with all the risks & consequences in mind, or I have been lucky enough to find an alternative. As someone who is an adult, my capacity to "just deal with it" is a lot greater than when I was five years old, and unable to "deal" with not being able to run around with my friends. There isn't an easy answer to teaching kids that unfortunately their disability is limiting in some capacity.


(Major bonus points & automatic friend for life if you message me telling me how I CAN do one or more of those things).

Tips on "getting over it" :

• Instead of saying "You can't" it's less harsh and less definitive if you said "I'm not sure..." or "I don't know..." 
• Don't bullshit. At a certain age it's appropriate to cover things up and say "well you can't go on the Superman roller coaster but the kiddie one is just as fun!" But after a certain age we all know that's just not true. Being honest and owning up to the facts and reality builds on a younger person's ability to cope. "I worry that you might get seriously hurt if you went onto the 'bigger' kids' rides.." is legitimate, honest, and also introduces the idea of consequences
• Personally I have 'gotten over it' by finding things that only I can do well that other kids aren't able to do as well. These are things that I am passionate and interested in, practice a lot of because I enjoy doing it, and have found my own 'thing' to hold over other peoples' heads and have THAT be out of reach for THEM
• Allow the time and ability to express how upsetting it is to not be able to do something. Brushing it off and moving forward too quickly is just another way of 'covering things up' and it will feel like you are not legitimizing a young child's feelings or dilemmas

Special Note: This is my 100th post! Let's hear it for 100 more =) Thanks for reading & for your support!!
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"Does having a broken bone slow you down at all?" My high school journalism teacher asked me. To this day I don't know what spurred her to ask me this; maybe it was because that time I had my head down, and was heading to my next class away from the rest of the crowd - taking care that my broken arm wouldn't be further jostled.

I have often re-visited the question my teacher asked me in my head, do I have a 'fractured' mentality? One that is more than just taking extra care, moving about with caution, and taking care to keep the cast dry in the shower? And if I do have a broken-bone mentality, how do I make that transition from being 'whole' and in my 'normal' state to one who is injured?
When a fracture has just happened I get very quiet. I stay away from the group and generally prefer to be left alone. In this state I definitely do have a 'broken-bone' mentality in that all my energy is focused on assessing the injury, stabilizing it, and 'getting used to' the feeling. A fresh fracture heats the surface of my skin and is sensitive to the movement my body makes with every breath that I take. Aside from the extraordinarily annoying distraction that comes with the pain and discomfort a broken bone brings, I think around this point I'm already trying to figure out how to "move on" from the fracture. I talk myself out of being totally succumbed by the pain and annoyance of the fracture:
It's just another fracture. Bones grow. Bones heal. This isn't going to be forever. Be calm. Ignore everyone else. Make sure no one touches the broken bone. Defend and protect it. 


I am only 40% listening to anyone who is not a doctor or a nurse when a fracture has just happened. Don't get me wrong, I always appreciate friends and family who are there with a comforting word or are trying to help - but my world suddenly becomes limited to the fracture and managing it the best way only I know how. There is an underlying fear in me that if I get distracted by other people talking to me I won't be paying attention to the broken limb. I won't be holding on to it the right way. I won't be paying attention to when my skin has stopped heating up. I won't notice when someone accidentally bumps into me. All of these slip-ups on my part can cause a lot of pain that I have somehow taught myself can be avoided. From this point on whatever pain can be avoided I will leap towards! If it means waiting for my orthopedic doctor to come back from his vacation before setting the bone again, I'll wait. In my 'broken bone' mentality I will only do things that I am most comfortable with, know the outcome of, and take no risks; this is pretty much 200% contrary to how I usually am.

After the broken bone has been stabilized and there is a cast over it I try my best to get right back into my usual routine. Of course there are things that will need to be adjusted. The way I transition from the toilet to my wheelchair. Or the way my family or friends carry me. The technique I use to open doors while in my wheelchair might need to be adjusted. The way I get dressed. There are a thousand things that need to be tweaked a bit but because I am old enough, have had the experiences, but most importantly have learned -- I usually do these things now without a second thought.
Aside from all of the day-to-day tasks my 'usual' routine has also consisted of school, work, hanging out with friends, volunteering, going out with friends, hanging out with friends, and did I mention hanging out with friends? Here's the biggest obstacle for me whenever I have a broken bone: FATIGUE. I sleep a lot when there is a fracture, and usually almost immediately after a cast is put on I am fast asleep. It's hard for me to accept that I am not able to do as much with my day. It's annoying to admit that I need to stop and rest. The toughest part of this part, for me, is when I am resting I realize that I am resting because I broke a bone. During these moments it's usually just me and the cast, and right then at that moment - Yes. I hate to admit it but yes, my life is slowed down a bit when I have a broken bone.

I s'pose the title of this entry is inaccurate. My mental state is never fractured and I wouldn't say that it is at all slower when I have a fracture. The lull moments are when I realize how fortunate I am, those are the times when I am teaching myself how to be stronger, when I am 'talking' to my body and telling it to heal quickly; these are the moments when I am learning how to roll with the punches and adapt quickly but cautiously. All of these are things that I carry with me long after the doctor has taken the cast off, I might not remember every fracture incident or every bone that I have ever broken - but I do remember the things each one has taught me and how each one has subtly shown me more of life than I am otherwise conscious of.


Mending a 'broken' mind:

• Growing up in an environment that encouraged my abilities helped reinforce my coping abilities when I had a fracture as a child. Sure, my parents were a little extreme in that they always sent me to class after they splinted a broken bone themselves - this insanity actually had its benefits!
• It's easy to slip into the "why me?" mentality. And the few times I have done this I have always been frustrated by the lack of answers, and also by the ultimate pointlessness of this thinking. I think that this is a normal process of thinking and one that each person has to figure out on their own, but for me the dead-ends that I always wound up in taught me to just stop asking the question 
• This took me forever and years to recognize and it's actually something I recently have come to understand - but it's okay to cry! It's not a sign of being pathetic or weak, it actually helps get stress out when there's little else that you can otherwise physically do
• What I wrote above is only true for me. Each person has a different way of reacting to injuries and different ways of dealing with your body. It's important to take time to understand how your body reacts to best know how to manage and deal with it! So even though I'm a huge proponent of getting back into the routine ASAP, I know that taking time to rehab and let your body & mind adjust is important to managing fractures
• Surround yourself with people that you enjoy being with and do things for you! 

This week I got back from the Easter Seal's Explorers Camp in Maine and hit the ground running with loaded entries! Miss any of'em? Check them out here:

• Monday: I started the week off by writing a Post-Camp Letter to myself summing up my week away

• Tuesday: It wasn't until recently that I thought about how my self-image has changed over the years. In this 2 part series post I wrote about my self-image from childhood to high school

• Wednesday: Part 2 of "My Evolving Self" was a tough entry to write but an important one nonetheless!

• Thursday: Originally written in 2003 by my 10th grader self, it was then published in the OI Foundation's Breakthrough! "The view from the bottom..."

• Fracture Free Friday: The line between staying safe but having fun can be a difficult one to manage. This week I give tips on how to make the decision process a bit easier! 

Hey everyone, I had a great experience during my week away and I hope you enjoyed the posts from this week. Next week I've got an exciting announcement and will write a more detailed entry about my time in Maine at Explorers Camp! If you missed any of the posts while I was gone catch them here:

• Monday: Before I left for camp I wrote a pre-camp letter  where I shared my excitement for the adventure to come

• Tuesday: In the process of writing this blog I have found that I've been unintentionally giving advice about what I would do if I had an O.I. child

• Wednesday: This was an entry where I could share a bit about me, thanks for the questions!

• Thursday: There are times when P.T.'s can be like physical terrorists to me! But in the end I have come to learn that rehab time is vital to the healing process

• Fracture Free Friday: This week's question dealt with young children who find my appearance to be a little "off" or different. What do I tell them? 

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.

• It's really easy to only think of the progress OI'ers make in terms of fractures: "oh she hasn't had a fracture in 5 months now.." or "he had a rod surgery 6 months ago and is now able to walk for much longer distances!" As in the above story I shared, it's important to note all the intangible things too!
• What I didn't appreciate then that I understand now, I really learned a lot from the decision my parents helped me with in the 8th grade BECAUSE they included my doctor and me! Although my parents were initially against my decision to go, the fact that they heard me and wanted to make the safest decision for me paid off a lot now that I am an adult! I now know about the things I need to consider when I make decisions like this
• No matter how ridiculous and stubborn your child might be in trying to 'make a call' in his or her life, let them! It's the only way I learned what my limitations are and how to problem-solve in 'the real world' without my parents by my side 24/7
• Parents might be losing hair, sleep, and gaining bags under their eyes over the decisions their OI'ers might be making - this is probably normal (although I wouldn't know cuz I don't have kids). The best thing to do, as hard as it probably is, is to be supportive while GENTLY and QUIETLY voicing your concerns. Badgering and screaming "WHAT IF THIS HAPPENS?!" Is probably going to put distance between you and your child for the next 'big' decision
• Though I don't TOTALLY know what I'm getting myself into, the fact that I am willing to take this risk AND look forward to doing it, I think, speaks volumes about how my parents raised me. 

I don't know about you but this week just seemed to drag on forever for me! In between work and getting ready for the upcoming fall I managed to squeeze in a Red Sox game and saw the movie Friends with Benefits; then my younger bro turned 18 and I attended an event that honored the 21st Anniversary of the ADA.

• Monday's post: Though difficult for me to put into words I know that the 'guilt' some parents may experience about having/raising a disabled child is a common feeling. This is an on-going issue so I'm sure I will return to this topic in the future

• Tuesday: In this entry I wrote about my most traumatic fracture to date. After a fall from my manual wheelchair: two fractured femurs, a pool of blood, and an ambulance ride later I learned what to do in the event of a '911 fracture' incident. 

• Wednesday: In elementary school I had a lot of specialists come work with me. My memories of special education were not as "fun" as the adults tried to make it out to be though....

• Thursday: Despite two-decades of sitting in my wheelchair it doesn't seem like my body is getting any more 'used to it.' Here are some tips on sitting for hours on end! 

• Fracture Free Friday: What's the point of having a rod surgery if you can't walk 'normally' afterwards? I talk about some of the pros & cons of rod operations in today's Fracture Free Friday post over at Unbreakable Journey! 

• The fast facts of telling someone in an emergency setting about O.I.: it means she has brittle bones, there have been numerous fracture before, there is a specific doctor and hospital that she always goes to. This allows strangers to the condition to know what it is they are dealing with and where the end destination for them is
• If possible it's important to keep awake. During the wait for the ambulance and on the ride to the hospital I remember that everyone was trying to keep me awake and conscious
• In this incident I was in middle school and old enough to know what was broken, but this might not always be the case for younger children. Use your best judgment because you probably know the child the best! And if you're unsure it is probably best to have them be transported to a hospital right away so that x-rays can provide the confirmation for you
• I was lucky  that my doctor was around at this time and I would advise the emergency team handling the situation to speak directly with the orthopedic doctor. Otherwise, now you know to that added pressure is not the way to go and should be avoided at all costs when transporting someone with O.I. Use tape! 
• It was helpful that my family and the emergency crew remained calm. I probably would have been in far more discomfort and unable to focus on where I was most injured
• Listen to the person who is injured
• I don't know how my mother got me from being face down on the ground to being on my back on a pillow, but she did it - and the best thing about all of that is that I don't remember the transition so I don't remember how much that probably hurt
• If there was a traumatic fall of some kind it will probably take a few minutes for shock to subside and for the person to connect with their body again - trust that the injured person will tell you where it hurts when the time comes!