Tuesday, October 18, 2016


Greetings friends, family & strangers both near & far..... This post is a bit unorthodox from what I typically write about. It's rather different from what the premise of this blog entails. So......Lifetime TV has a show called "Little Women: ATL" that comes on weekly & I often times view it because like them, I'm an LP as well. This particular episode that caught my attention discussed the birth of Emily's baby JJ, who just before the birth found out for certain via [ultrasound] that the child did indeed have the same mutation of dwarfism as the mother. She underwent a planned C-Section, which by the way was a successful one. But prior to the delivery scene, when the OBGYN informs her of the child's mutation, she's happy to know the child "will be an LP like her"....If you know me, you know that my thinking & feelings immediately went into maximum overdrive!!!! Later on in the episode she discusses with her best friend her excitement about the child "being like her" & how "it's no problem, we'll just teach him to adapt".......Then the scene cuts to her discussing the results of the ultrasound with the child's father, who voiced his hopes of the child having no issues...She's upset that he doesn't see or share her sentiment. He's saying that it may be best that the child is healthy & strong..What's wrong with that?? What's wrong with wanting the child to be strong & prosper? So if I'm correct, her thoughts was that because he didn't want the child to be an LP, she equates his disdain with him not accepting her as an LP. Now I'm sure if you're reading this you might be wondering where I'm heading with this.........As I said after she & her best friend is elated once finding out the results of the ultrasound, my thoughts zoom out of control. Everyone knows how sensitive I am to this very subject considering my recent experience. While many may feel that although I didn't want my baby to carry the OI gene, the mere fact of my getting pregnant knowing the possibility is synonymous to wanting her to have OI. On the contrary, that is NOT my intent. However, I respect one's opinion. Though my baby was born indeed with OI Type 3 like me, I prayed against it during the entire pregnancy because I knew the dark side of OI & the manner in which it rears its ugly head. My wanting her to be free of the disorder is something that I will NEVER regret nor apologize for & as I've written previously, even though I wanted a healthy child, I was ready to accept her in ANY way she came to me.

So one can imagine my haste to Tweet her, with no intentions of being insensitive of course. Here's the exchange....

Also one can imagine my confusion & dismay at her response. I took a few days after this defending myself to her fans, being ridiculed for my statement that I assume many took it as an insensitive remark during a rather difficult time for her & the baby. Now as I've said before, I'm VERY SENSITIVE to this as well as many things since motherhood & so I take my remarks very seriously. Meaning that I think before I speak. I spent the next couple days thinking about my statement, how I wanted others to understand where I was coming from. I received mentions, tweets etc as her fans riddled me with defensive remarks. I attempted explaining myself but to no avail. I even tweeted her again, with my blog handle so that she could SEE that I was speaking from common ground. I wasn't pulling rat-infested comments out of my ass!!!! Again.....to no avail. I simply commented from what I heard on the show, what was aired, from the perception of a home viewer, I re winded, paused, listened again, with the closed caption on the screen just to be certain that I didn't misunderstand or misinterpret her because if I did misunderstand her then I'd  After all this, she never replied back. 

There's nothing wrong with a can-do attitude, especially when you're born into a world that wasn't built for you. I see this in the disabled community often. People [not all] with disabilities seem to carry this chip on their shoulder, subconsciously daring anyone to challenge them to carry it...Due to the obvious limitations. That "anything you can do I can do better, I can do anything better than you" chip, which hinders that person to be realistic. Anything I've ever done in life, I've always kept my disability in my radar or peripheral because while it doesn't dictate my capabilities, it is my reality. Figuring my situation Many [disabled] people that I've encountered have the idea that "I'm just like everyone else" instead of "I'm just like everyone but..." because the truth of the matter is no situation is typical.  I don't know Emily personally, this observation is based off my viewing the show & merely responding to what was aired. Living with similar issues as Emily, I can relate to much of the same experiences as she. I can empathize with her. 

As this blog post was being typed in the many days after this encounter, I found out that sweet baby JJ died of complications relating to his ailments. I was devastated!! In fact I reached out again to share my condolences. I wanted so much to send her a bracelet but I never recieved a response. 

I was torn between sharing this post & keeping it to myself in light of JJ's transition. But I want to share my feelings about this & how deeply it effected me. There are many things in this life that I've done, some good and some not so good. But one thing I will NEVER regret is my feelings towards having a healthy child, free of OI & the devastation that comes with it. No matter how independent I am, that will NEVER interfere with the realities that OI entails....I hope my Haley Jean & JJ have found one another in the Heavens...I know they both are free...They are free!  

End The Awkward...

I'm Christine, 35 yrs old single mom of one, born & raised in Chicago, certified Paralegal, never married....Oh & I'm disabled! Yea I know that was a mouth full. The irony is that when explaining or introducing myself to someone who's just met me,(and hasn't seen me) not only do I sound like a Match.com ad, but they're not expecting me to be disabled. The goal of this piece is to share with others my most awkward moments transferred with people who aren’t familiar with those with a disability. In my experience, I’ve found that people get tongue tied, often confused as to what to say and do in my presence. College life was the first time I ever really had the opportunity of exchanging pleasantries with individuals who were visibly different than I; able bodied. In fact I noticed how students were only social with those they felt more relatable to. For example, the Asian students only engaged with each other, the African American & Caucasian students were close etc. However the few disabled students were ironically loners, perhaps so withdrawn that hanging with other disabled students would assume that exact same pattern as other students. That or hanging together made more of an eyesore. So I did what any other self respecting disabled person would do….Hung out with the old foggies!! During all 3 terms of college life, I’ve found this pattern to exist in every setting; Junior college, during my two year Associate's Degree program and Undergrad, all conspiring to one enchanting fellowship with a more mature audience. Honestly, I’m fine with that. I’ve always been told that I was an “Old Soul” so I assume it’s only appropriate. Don’t get me wrong, it’s not that I minded, though it would’ve been a nice change of pace to interact with my generation, occasionally discussing who’s cute, the latest gossip or “Did you hear that new track by R. Kelly?”

One of many encounters that were rather odd began on my first visit to my OB/GYN, after finding out that I was pregnant. This particular office is for pregnant women ONLY or for women trying to become pregnant. So when I rolled my bloated belly in this predominantly able bodied office, all eyes were on me! I felt so uncomfortable. I can remember calling my sister telling her that I was about to leave because I just couldn’t handle the stares. Even though I get stared at a lot, these were different stares...These were stares of “Hey, what’s she doing here? She must be lost! She’s not pregnant, she’s in a wheelchair! Is she pregnant? She can’t be, she’s in a wheelchair!” At least that’s how I fathomed them to be. Typically I can handle 5 year olds following me throughout the grocery store or that creepy guy leering at me around the coat racks in Target…. I handle that by saying…”HEY, HOW Ya DOIN?” rather loud & obnoxious….Then he’ll speak, totally unaware that he just got served!! I like to see the look on his/her face when I do that!!! When children stare they don’t understand, they’re merely making an observation of someone that looks very different from them. They don’t see a person like me everyday, so for them to stare is totally expected & normal. Anyhow, I began to not look forward to my visits. Each visit seemed harder & harder to deal with because I would always encounter those same glares. So one day, I felt for pairs of eyes inspecting me like an exhibit in a museum. Finally I said “Hello, I’m Christine, and you?” The conversation went from there. While I didn’t want to make the forefront of our conversation about being pregnant and disabled, I found that it actually was the Pink Elephant in the Room so once I minimized it as being just a “Pregnant woman” things went smoothly and after I broke that chain of curiosity, they, including myself felt totally relieved. I knew then that my pregnancy was much more than that; it was a learning experience for all that I encountered. I realized that many people just weren’t used to being around a person with a disability. I’ve always wanted the opportunity to educate others about me, Osteogenesis Imperfecta and the effects it has towards my quality of life. We can all learn from each other...There are many ways to End the Awkward, one way is to simply start by saying "Hello!" Typically the conversation can proceed from there. Ask questions, just as you would to a person without a disability. Initiate a general topic and you'll be surprised where this will take you. I've made friends by allowing them to break the ice, friends whom are still very dear to me now. Don't be afraid! Talking to a person with a visible disability is just like talking to a stranger on the bus. We can talk, in fact if many are like me I LOVE it!! Making new friends is a way to spread your story, you'll also be surprised how impactful your journey just might be for someone else. Let's join the movement & let's End The Awkward!!!