Single and disabled is the foundation of my life. I never dreamed I’d have children in a million years and the very thought of it seemed unreachable and impossible. I was born with Osteogenesis Imperfecta Type 3, otherwise referred to as brittle bones disorder. It’s a genetic condition that lacks collagen, which allows the bones to break or fracture with the slightest or often times no trauma at all. I’m 3’ 5” approximately 70 lbs and in a wheelchair. I’ve had multiple corrective surgical procedures on my lower extremities, numerous fractures and a multitude of hospital stays. Thirty-four years later, I’m still here…still trying to figure out my purpose.
After years of finding my niche in life, I decided that college was the way to go. Of course once I finished high school, I landed in a world of able-bodied creatures that wasn’t accustomed to my “kind.” Adjusting to this new lifestyle of independence and freedom, I did my best to prove that I deserve to be here just as well as my counterparts. I graduated with a BA in Management and simultaneously earned my Certificate in Paralegal Studies at Loyola University Chicago. I’ve always had a penchant for law. Its complexities and the dynamics of the entire judicial system alone was always captivating to me. I finished school, moved out on my own, got a job. Isn’t that what life is all about? Following the corporate American dream and climbing that ladder? Just when I thought surgeries, social acceptance, getting an education and living on my own was the height of my life, I was hit with a surprise of a lifetime. I’m pregnant!
I met this guy during my undergrad term at Loyola. Able-bodied, tall, charming and much older than me. We hit it off immediately. I was extremely attracted to his simplistic and charismatic perception of life. He was somewhat cultured, well traveled and was in the military. About six months after our initial meeting we began a loveless, lustful relationship with NO prospects of marriage or commitment, strictly physical.
I loved the comfort of being able to be vulnerable with someone who had “been there, done that.” That level of comfort doesn’t come easy for people like me. We tend to wear our hearts on our sleeves and have to work doubly harder to ‘woo’ or win someone’s affection, hoping that it’s natural. Dating for us definitely comes at an expense; an emotional one. I’ve never allowed a man to dictate who or how I date. By that, meaning if I like a guy it’s not because I’m trying to prove a point of “anything you can do, I can do better” deal, it’s more along the lines of “Hi, I’m Christine, I’m a Capricorn, I love seafood and the idea of Donald Trump for President tests my gag reflex.”
I don’t define myself as the girl in the wheelchair, because that’s not all, but only a part of who I am. I use my wheelchair to get around 100% of the time & I do rely heavily on it. However, its purpose as an assistive device is its only function. I’m not saying the chair doesn’t exist, but that it doesn’t define me completely. In my experience, fashioning the wheelchair as the forefront of my foundation makes others ill at ease and uncomfortable. It’s like reminding people that water is wet; no explanation needed.
By accepting myself for who I am, others will too. Anyhow I believe that’s why we hit it off so well. He didn’t see my condition as an imposition, never treated me like a charity case. In fact, he’d joke about my being bossy and at times a Bitch on Wheels. I was probably the more aggressive one in the relationship which he says is what attracted him the most. He also noted often how I was full of depth, substance and sass.
While the relationship was clearly void of any real commitment or substance, the level of intimacy was at an all-time high. We had great chemistry and I was captivated. We were “Insignificant Others” for two years. Unwed, in debt and disabled was the reality of my life. The most humorous part of our relationship was how others perceived us; he was older, virile and handsome. We seemed total opposites.
There’s a stigma that people with disabilities should date their “kind” or are at least expected to. I was always the type that didn’t adhere to such rules. When others are looking left, I’m looking right. I had dated one other man with a disability once, but if I didn’t fall for another, then I didn’t fall for another. Actually I enjoyed the glares, the mysterious thoughts that clearly ran rampant in the minds of those around us. I basked in the ambiance of the provocativeness that followed. But as time persisted, I became more and more intrigued by the thrill of it all. I knew it was wrong but we were good friends none the less.
We had many talks of being careful during our relationship. I explained that while I was indeed capable of getting pregnant, it wasn’t a good idea. So we tried as best we could to protect ourselves, obviously we didn’t try hard enough. During a routine visit with my gynecologist, she was adamant about my using a birth control method. I wasn’t a fan of medications; I actually had a phobia about taking new medications after a terrible experience with an antibiotic. I promised her I’d use protection each time he and I were together. That visit was approximately two months before I found out I was pregnant.
Before it was official, I was having dreams of a bright skinned baby girl with lots of curly black hair, lying across my lap. He even told me I was pregnant before I even knew. He said how I looked “different”, that he’d seen this look before. Although I was a few days late, I started showing signs that something wasn’t right. My breasts were itching like crazy! I could recall sitting and having a conversation with my sister once, just scratching under my shirt rather nonchalant. She stares at me sort of mysteriously and says “You’re pregnant!” Of course, I denied it. I was so bloated and had terrible cramps. But I figured it was PMS, as my menstruation is always brutal on me. Not this time. This time it was different, this time I was pregnant. So as you can see, it wasn’t planned.
After everything he and I experienced, the fun, the laughter, excitement and joy, it all came to a devastating end; I was pregnant. Gradually we became more adversarial than amicable which wasn’t good for either of us. He became more distant, even stoic in terms of expressing any affection toward the matter. As you can already imagine, he wasn’t thrilled. Shortly after we found out, he and I decided to part ways.
We both had different ideas about it and he was afraid that the child would have my “mutation”. While I understood his position on the matter, I didn’t share the same sentiment. I don’t believe in abortions personally, however I saw it in a manner that if I aborted the pregnancy it would be for the wrong reasons. It would be due to him not wanting more kids, not because of a potential genetic issue. People don’t realize how the mere thought of getting an abortion isn’t an easy one. I considered it but just couldn’t do it. Soon after, the thrill was gone. All I was left with were memories of the time we shared and my first ultrasound photograph.
Upon finding out, my initial reaction was to run away. After word had spread about my being pregnant, it was met with some hard edged questions from the most unexpected of them all; extended family. All the years they’ve supported me in anything I’ve done, this seemed to be a spectators sport for them more so than a cry of concern.
Word began to get back to me that I was being used, manipulated and controlled by him due to his age and because he wasn’t disabled. Little did they know, our relationship was completely mutual. He wasn’t using me. This only added to the embarrassment I was already experiencing. It was a devastating blow. I couldn’t deal with it, therefore choosing not to deal. I kept to myself, worked tirelessly, rested when able and attempted to get the best fulfillment out of the situation as I possibly could.
Since deciding to keep the child and raise her on my own, I knew the terrain wasn’t going to be smooth. Haley Jean was born indeed with my genetic mutation: OI Type 3. I knew approximately 20 weeks. My ultrasound was showing signs of OI; bowed and shortened femurs. She was also underweight, meaning at a certain gestation period, she was expected to measure a specific length. She hadn’t even met the growth chart.
I carried on as if nothing had changed. With me, it was business as usual. Although I didn’t plan on doing this on my own, it sure seemed to end up that way. I went about my life pregnant, unwed and trying to hide it from co-workers. It wasn’t long before it got to the 9th floor that I was expecting. Of course they were thrilled, but they were also curious. “How’s the dad taking it? Is he excited? When’s the wedding?”
My hormones were out of sync, I couldn’t contain myself most days. I’d have to take longer bathroom breaks to sit in a stall and cry. It was so much pressure to endure…alone. I finally decided to do move on. I couldn’t handle the inconsistencies and the arguing any longer. I knew the consequences of my decision. It was the only way I could get past the hurt and anger. Once I accepted that, I moved on. No regrets.
Mom welcomes Haley Jean into the world.
After a grueling 7 weeks in the MICU [Medical Intensive Care Unit] I finally had her by C-Section. I had been there so long that I figured out how to differentiate our heartbeats. Often times I’d help the nurse find it during NST’s. She spent 6 months in the NICU due to respiratory distress among other things OI related. As time persisted during her stay, I received training such as how to feed her via g-tube, replace it. I had to learn her saturations, what her normal heart rate and respiratory rate was so that I’d know when or if something was wrong. They taught me CPR just in case, they showed me what to do should she require more oxygen. I learned to listen to her lungs and heart with a stethoscope and what to listen for. I remember how I wasn’t comfortable with holding her.
It wasn’t until two weeks later that I held her for the first time and since then, I never let her go. Learning to lift and change her diaper was so frightening but the more I did it, I grew more confident. I learned to care for her very special and unique needs. Gradually my cute little bachelorette pad became what looked like a mini hospital ward. Oxygen tanks, concentrator, g-tube feeding pump. I had to learn how to use the equipment. Eventually it became so natural, like second nature to me. I could change her diaper while talking on my cell wedged in the fold of my neck and shoulder. Drawing up medications in a syringe became so easy, I could draw it up with one hand, bottle upside down. I never EVER knew I’d be doing this nor that I could do this.
I had become a very active part of her care, advocating for everything in terms of decision making for procedures, plan of care, even being more presumptuous when it came to debating with residents and attendings. For instance I wasn’t thrilled about administering pain meds preemptively because I didn’t want her getting immune to something that she probably didn’t need. We had numerous discussions that her cries were related to just being a baby, not pain.
Another time I was told that she would have to live in a medical group home such as Misericordia for children with special needs. It wasn’t due to her needs alone, but that I was disabled and in their opinion was incompetent; lacking qualification and ability to physically care for my daughter in a safe and productive manner. Typically I’m level headed and easy to get along with. However I wasn’t shy about expressing my feelings toward the matter. That just wasn’t an option. I felt trapped and railroaded because it’s not like my disability went unnoticed throughout this entire process and so one can imagine my anger, frustration and impending fear that my daughter might be taken away from me. Emotions and opinions dominated the countless conversations but they realized my feelings were unchanged and negotiations were non-existent. Once they saw the amount of support I had from family and friends, we never had that conversation again.
Someone told me once that if you can’t hide it, celebrate it! And that’s what I did. I know I’m not the ideal mom and I wasn’t trying to be something I’m not. I never rejected my limitations; instead I embraced them even more than ever because those limitations were indeed a part of who I am. I’d always find myself coming up with different ways to engage and interact with her that would be conducive to my rare situation.
Carrying her was different for me and at times was challenging because I’m not very physically strong. I found a baby carrier or wrap that was just perfect for tying her against me so that I could roll around the house. A crib was too high for me to reach so I got a cradle instead. They’re smaller and much more efficient in what I was trying to accomplish. Traveling was a chore, her stroller, car seat, my wheelchair and all of her equipment would be a production all in its own.
My sister bought an SUV for the extra room for us and her children as well. We’d pile in, kind of in an assembly line technique. The more we did it, the easier and less time consuming it became. For me, lifting her had its pros and cons. Leaning down to lift her wasn’t all that easy because she began to get bigger at a faster rate than I first imagined. So I’d get out of my chair to sit next to her then lift. Then there were days where the OI made its presence known. Stress fractures in my ribs became more common from the strain of lifting. I also had emotional days where the joys of motherhood were replaced with reality; that I’d always need someone. But I loved EVERY minute of it! No way was I going to allow my limitations to dictate my outcome.
There are so many stigmas and misconceptions associated with people with disabilities. Lack of ability and competency are just a couple but the list continues. Although others are free to their opinions, it is my duty to attempt to change people’s perceptions of the disability community. As a society, we aren’t as progressive as we think when it comes to “different” people. There’s a natural reaction to stare or point when seeing someone in a wheelchair or physically impaired in some way. We are a productive part of society with a work ethic that pales in comparison to able-bodied individuals. I want to extinguish that negative perception with my story by showcasing the diversity in parenting, family life and work ethic. We make up a percentage of the population that doesn’t dominate the general public, therefore resulting in a severe lack of empathy.
So the disconnect kinda comes as a default also due to people not personally knowing or engaging with disabled people on a regular basis. Over the years I’ve discerned that people will only associate with what or whom they can relate, if that other person isn’t conducive to their reflection in the mirror, the potential relationship is non-existent. I got that epiphany during my college years. I almost always hung out with older people, never anyone within my peer group.
I don’t regret my child, in fact she was the best part of the journey in spite of the circumstances. However if I had to do it all again I’d be more careful in making better choices in men. Although he was an upstanding citizen, his moral compass became more and more off centered. He wasn’t able to see the situation from my perspective and many times didn’t view it as way to become more unified. I wouldn’t base a relationship on the shallow and insignificant like I did before. Also, I’d work towards something more meaningful and substantive in a relationship than just the physical aspect.
Physical relationships lack expectations exceeding beyond the sheets. Practicing safe sex, disabled or not, is imperative. Using a safe and effective birth control method especially if you have a higher likelihood of genetic problems such as myself, it is so critical. When the chance of genes spontaneously mutating is higher than average, it is most vital to protect yourself.
One time I saw this tv show called “I’m Pregnant And…. My Husband is A Little Person ” The guy’s wife was average and they were expecting their first child. They opted out of revealing the sex of the baby and if the baby had a form of dwarfism until the child was born. Throughout the show, he was exclaiming how happy he’d be if the child was a dwarf so “they’d have something to relate to” After the birth, the doctors came back and reported that the child’s web-like fingers and disproportioned skull were clear indications of dwarfism.
The father was ecstatic, like his favorite basketball team just scored a basket sending the game into a tie with 7 seconds left, his team at the free throw line. Seeing that inflamed me so much so that I was in tears. Now you might say that I’m being hypocritical, that I had a kid purposely knowing she would carry my genetic mutation. But I implore you, while I got pregnant on accident or not practicing safe sex adequately, I wasn’t hoping the child had OI. I chose to keep her and prayed for a healthy child. I’ve heard many stories of individuals with genetic issues wanting a child to “relate ” to them and personally I think it’s sick.
Why want a long haul of physical pain, emotional distress and anguish for a child that didn’t ask to be here? I mean I get the whole #TeamDissAbled mantra & that we should celebrate and embrace our unique assets, but to pray for this kind of life… No! There’s no way I’d WANT a child to be born with OI primarily so we can relate. Hell, we can wear matching outfits & that’ll suffice! Problems on top of problems are guaranteed to ensue and I’d always said I wouldn’t have kids because of that, but once it happened, I couldn’t go forward with terminating it. I asked God every day and night for a healthy kid. Although this was inevitable, I made the best with what I had and tried to make the best life for her possible.
After all the joy, laughter, heartache and struggle, it is with immense sadness to report that my days of motherhood ended on March 18, 2015. My daughter transitioned to be with the Lord at approximately 2pm due to the many respiratory infections and a heart defect associated with OI. My world, my life and perception of everything logical came to a complete misunderstanding. My heart was broken. I never thought I could love something so tiny, innocent, pure and receive that same love in return. She taught me more in her 2 years of life than I’d learned in my lifetime. She taught me to love unconditionally, to love hard when hope seems bleak, to love immensely during my darkest hours, to love when the world sees otherwise. I’ve gained a new level of strength I didn’t know existed. People asked me often how do I do it and my answer remained the same…”I don’t know, I just do it”
It’s like explaining why do we breathe or blink, we just do because that’s what our body is trained to do. In spite of the emotional strain and trauma I’ve endured over time I wouldn’t trade anything for nothing in this world. She’s brought me immaculate joy and peace that only a mother could understand. A calm so serene that attempting to describe it’s feeling is nearly impossible. I’ve started a blog with the premise of detailing our lives together as a single mom with a disability, caring for a child with special needs and hardships of social acceptance. Also spreading OI and disability awareness while coping with life after.
I’m thankful for the journey that I’ve endured, for without it I’m not sure where I’d be. I’m thankful for the lives she’s touched, the hearts she’s softened and the courage she has given me. She is and will forever be My Darling, My Blood….My Haley Jean <3
What are your thoughts on this topic? Christine will be replying to comments and questions.
Until then, make an audacious life one audacious moment at a time.
Christine Hart was born and raised in Chicago, Illinois to a homemaker and an electrician. Being the only child out of seven born with Osteogenesis Imperfecta made adjusting and accommodations a new way of life. Christine attended Loyola University Chicago and received a Bachelors in Management as well as a Paralegal Certification. Currently she spends time oil painting, abstract art, and jewelry making before returning to work as a Contract Paralegal. She hopes to attend Graduate school if time and energy permits.
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