Land of the Misfit Toys

All my life I've had the privilege of being one the most intriguing types of people on this earth...Physically disabled! Now, as you can see I didn't say that with any inkling of narcissism, but rather a smidge of sarcasm. It's no secret that I'm in a wheelchair I make no effort to hide it. How can I...Right? For as long as I can recall, my wheelchair was a part of me. My parents made it clear that I wasn't an invalid, the chair wasn't a contagious contraption but that it just an accessory. Though it was necessary, it wasn't there to define me in a negative or degenerative way. Unfortunately these were the ideals & beliefs of my family...Not those of society. I found out the hard way that I was "different". It wasn't until college that I truly was forced to look in the mirror & see what others saw: A wheelchair. I wasn't the first to be asked to join a discussion group when the instructor gave group assignments. In fact, I was never asked. The teacher almost always had to ask for me by making suggestions of how I'd be a wonderful asset to the group...How it would be a return of an investment. Kinda like bargaining on my behalf. I felt small, invalid & unimportant. Didn't at all feel a part of something extraordinary. I've experienced this in the workforce as well. You know....A trouble-shooting dilema comes up & everyone in the office asks each other but me...Can you imagine sitting there trying to make suggestions & someone talks over you, puts their hand up & says.."No, no it's not that".. Though I'm the only one that notices this segregation. I don't blame anyone..In fact it's just the way the world is designed...We all are guilty of associating with what's relatable to us. For instance, Typically we all have a tendency to have a "type" in terms of being in a relationship. Most times, we don't date outside this "type" because it's what is relevant & attractive to our preference. It's the same thing....When it comes to the moral values of society in this generation, we're not as progressive as we thought. So, to the able-bodied community, welcome to the Land of the Misfit Toys...:))))

After I'd gotten pregnant & I started to inflate in some very delicate areas of my body,I had realized it was the "Glow." It wasn't long before my mind started to tell me that EVERYONE knew I was with child & the looks began to pierce.  I wasn't married nor in a steady relationship so my antennas were already on edge. Half were actually staring & the other half was just my extreme paranoia. For instance my first appointment almost ended in disaster, only because I was certain the patients waiting to be seen were wondering .."Is she pregnant, but she's in a wheelchair, she couldn't be, she's just a child." Call it what you want, they were. As time persisted & my belly expanded, the looks were even more obvious. So, I'd politely say "Hello, how are you?" It was nicer than "Wtf are you staring at you asshole?!!" I figured you get more flies with honey than vinegar so I knew that from now on it was best to break down the walls of anxiety as much as possible. People were more reluctant [interested] in talking to me. Afterall, I didn't look like the average pregnant woman. I was pregnant, 3" 9', in a wheelchair & to others looked like a 12 year old...When I'm not wearing make-up :)..There was mystery, intrigue..I think a certain intensity about me that welcomed attention. I didn't want to be perceived as a freak of nature, I wanted to be viewed as a woman. Pregnancy is a blessing from God & meant to replenish the earth. It isn't a curse or abomination but a magnificent gift that I'm thankful for each day...:)

A New Life

Forgive me...My goodness it's been a hectic week. So it looks like my schedule won't allow me the time to blog a few times per day as I hoped. Since becoming a mom, my life has taken a dramatic turn. It's really been a life-altering experience, one that I wouldn't trade for nothing in this world. I do what I can to be as flexible as possible, such as being more conscious of time, proactive, organized & productive.

So, a typical day consists of (when she's home) round the clock feeds via g-tube, administering meds, a couple baths, laundry, playtime, naptime, OT/PT, chores, dinner, lunch, errands...All within a 24hr day!!!...Whewwww...Most times I force myself to let others take over because I tend to go at it full speed ahead..My days start around 6 am. Before I know it, it's 2pm when I realize that I haven't eaten breakfast. Traveling is especially a chore. I have my wheelchair, my purse, diaper bag, O2 D tank, stroller....And we're usually on a tight schedule, which is important for us to get to & from a Dr's appt asap due to the time frame of the tanks. It's an event in it's own right. That while, at one point taking on contracting projects full time is a lot on this 65lb frame. I'm not sure how I get through a day. Pain management [me] has been included in our daily regimen. With bone pain becoming more frequent as I get older, I'm forced to be more health conscious. For OI'ers, watching our weight is imperative. I'm lucky to have a high metabolism but some aren't so fortunate. Carrying too much weight on the an already stressed skeletal frame compromises the bones as well as the lungs. It becomes harder to breathe & bones are more likely to fracture easier. Don't quote me...Haha!! Since having my baby I've picked up about 5lbs. That's a lot for me. I'm thinking of writing our elected officials to request squeezing into a pair of jeans be added as an Olympic event!!!! Overall, for an OI'er my age I'm actually in pretty good health. I use my self-propelled chair as much as possible, that keeps me pumped & energized, it also is a method of exercise. Well I'm tired, it's been a long one...Talk to ya hopefully sooner than later..;)

A New Beginning

Hello all!! It's my 3rd post & I'm kinda excited about  sharing today. As I look back during the first weeks of my pregnancy, I can't believe how far we've come. Though I've always been positive & optimistic about life, I couldn't help wonder how life would turn out. Days had passed after finding out the good news & still a lot of people didn't know. I was cautious about telling others because I had a bad case of the jitters. Didn't want to jinx anything, especially due to my own health issues. And I wasn't ready for the strange looks. Overall, I my excitement was met with anxiety & fears which ultimately made my telling people much harder. My first OB/GYN appointment was an awkward one. I'd decided to take a short day at work so I can mentally digest everything. I was about 8 weeks by then & my body was indeed going through a major overhaul. I looked somewhat the same but on the inside I felt like someone else. I thought I knew all there was to know about pregnancy & childbirth. Until I experienced it firsthand, all that "knowledge" disintegrated. I've been physically challenged my whole life & it's had it's ups & downs...So many, I can't tell which outweighed the other. I've had some days where I felt self-conscious all the time & others were more confidant. Upon entering the Women's clinic I was greeted at the door by self-conscious. It's funny how life reintroduces you to those old feelings that were repressed.

Surrealism...

Hi friends!! How are things?? I'm very new at this, only a few hours new so please bear with me as the goal here is to catch up from when I found out I was expecting up until today. I'll start off with two posts a day. It's a lot but I'll do my best not to ramble & share what I think is most important & relevant.

The idea of me having children was a figment of my imagination. Due to my own health issues, it was strongly recommended by many medical physicians that peopl with OI should consider other alternatives in having children. Surrogacy was most recommended yet expensive for the average person. I had read stories of cases such as these in the past so it gave me a little hope that having a family was a possibility. My finances were nowhere near comfortable & my love life wasn't consistent so that option was out. Some women with type III have safely carried full term, others have not. I wanted to try but the harsh realities of carrying a child began to grow. Finally I had made up my mind that it was best to give up that dream. Once I actually got pregnant, things changed. For me, abortion wasn't an option but to some, it was the best thing. I've always been a risk taker, never allowing circumstance to dictate my life. If something arise, I address it. Done. I've always felt that "disabled" feeling in the back of my mind. When I got pregnant, I felt like a full fledged woman. I think many people saw that in me as well, just didn't realize it until now. These are feelings of any woman, disabled or not.  I believe women with a disability that effects growth body image can relate to these feelings. We've been dependent majority of our lives so when something drastic & grown up happens, people scramble to make sense of things. I didn't think I was pregnant until I realized my body was changing. I didn't feel like myself. I thought I was getting my cycle; cramps, bloating, tender breasts. The results made me euphoric & felt surreal. This experience showed me how inexperienced I really was, as I had no idea that the first signs of pregnancy were similar to menstruation. My body was in for a wild ride, and I was the only passenger...:)))

Ultimately I had found myself in that gray area of my life; that uncertain part that forced you to make decisions with not much time to think. It wasn't long before I was hammered with opinionated pessimists...It made my decision clearer & concise....;)

Greetings!!

Greetings my friends, old & new! My name is Christine, I'm a 33 year old single mom of an adorable little girl name Haley' Jean. She & I were born with a rare bone disorder called Osteogenesis Imperfecta Type III, otherwise known as brittle bones disease. It is characterized with broken bones with little or often times no trauma at all. Approximately 25,000 to 50,000 people in the United States live with this debilitating disease. The reason the numbers are so broad is due to misdiagnosis. There are about 8 known types [type III being the most fatal] with each differing in symptoms. When I was born, each of my extremities were broken beyond disbelief. Since then, technology has vastly grown providing children the chances of walking & an improved quality of life. Treatments such as Bisphosphenates to increase bone density while decreasing fracture rates by more than half, corrective surgeries of the upper & lower extremities; rodding, physical therapy & swimming have made the dreams of longevity a possibility. My daughter Haley Jean was born February 28, 2013 at 30 wks gestation via c-section. I was placed on strict bedrest for 6 wks prior to delivery due to compressed lungs from my expanding abdomen. There was a 50/50 chance that she'd inherit the same mutation as I have. After my genetic testing was complete, it showed just that: The potential of the child having OI was 100%. It didn't change my decision to have her, which is part of why I opted out of an amniocentesis. Because I had her premature, she'd developed a lung disorder called Broncho Pulmonary Dysplasia or BPD...This is caused by a huge lack of surfactant , a liquid in the lungs that help them expand as the baby inhales. Without adequate amounts, it can cause the lungs to collapse making it harder for the baby to breathe. Since then, she's been on si-pap, bi-pap, endotracheal tube, high flow nasal canulla....Whewwwww!!!! I can go on & on. For the most part, the OI has been the least of her troubles. With only a few fractures since birth, a significantly low amount, it's rejuvenated my faith that she'll be just fine. Spending 6 months in the NICU & on & off hospital stays since then life has been one huge journey. I've had to learn to adapt to taking care of an infant with special needs with my own physical limitations. My semi-chic bachelorette pad soon turned into a nursery/hospital ward. She came home continuous o2, meds every 12 hrs, a feeding pump hanging on an IV pole, pulse oximeter to track heart rate & respiratory status & an apnea monitor. Life never stopped for us. As I went back to work, things seemed even more hectic. I was working 10 hour shifts 5 days/wk. With home nursing not yet set up family stepped in to take over. People ask me all the time "How do you do it?" And my answer is always the same..."I just do it" There's not a day that passes when I don't think about how did I get this far. I'm always baffled that the answer is still unfounded. I've never been known to quit anything that I do. With the Grace of the Most High, it is only with Him that I can make it through one day. I hope this blog will bring encouragement, strength to those that are struggling with health issues, or life in general. My goal is to bring awareness about OI, awareness to those unaware of disabled parenting & the hardships of acceptance. A lesson motherhood has taught me is that sitting down doesn't mean you're less than a parent. It doesn't validate your competence, but it solidifies your innate ability to love....<3

`HJ's Momma...

About 20 weeks here, just before I was placed on hospitalized 24 hr bed rest

Two days before showtime :)