DAILY LIVING & MOBILITY

The Fragility of Life: Osteogenesis Imperfecta

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Christine Hart

In the Beginning with Osteogenesis Imperfecta

I’m 37 years of age, single & disabled. I was born & raised in Chicago with a bone condition called Osteogenesis Imperfecta, otherwise referred to as Brittle Bones disorder. Simply put, it’s a disease that effects the collagen in the bones making it easy to result in a fracture or break, often times with little to no trauma at all. Regardless, I’ve lived a rather normal life, whatever “normal” means in this generation. I’ve gone to college, graduated with 2 degrees; one a B.A. in Management & the other a Certificate in Paralegal Studies. I had finally reached my dream of obtaining a career in the legal field.

proving yourself worthy

Working as a Contract Paralegal wasn’t easy for me. While I was an excellent worker, I experienced a great deal of fears from my coworkers. I noticed how, just like in college during group projects, no one was reluctant to work with me. I began forcing myself on others just to gain respect, aggressively engaging myself into conversations only to often become "silenced" by the group leader. With hand gestures in all...I had to show them that I deserved to be here just as well as my counterparts. That, alone with living life in general was a daunting task. While you live with an “I don’t care what anyone thinks about me” attitude, there’s still times when you subconsciously struggle to prove yourself worthy, that you can do it too!

My Normal with with Osteogenesis Imperfecta

Earlier on, I mentioned how I live a rather "normal" life. Normal for me is getting dressed in as less as legally allowed (Haha!!) & going out club hopping with my crew to scope out which guys I can get to buy us drinks. Normal for me is cruising the streets with my crew on a hot summer night. Normal for me is heading to the beach for a dip in Lake Michigan, the park for a family barbecue & a little retail therapy. After all, every girl deserves to look & feel her very best. As you can tell, I utilze the term "normal" the same way the general population uses it.

Living life as a single mom with a disability

Motherhood was a whirlwind. It came & went for me. I carried my only child for 7 1/2 months. Being a small woman in a wheelchair with a large belly definitely came with looks & stares. I was alone, left by her father who wanted nothing to do with me or a child that was going to have lifelong health problems. In the short time she was here, he refused to see her “like this.” I decided a long time ago that NO MAN stops a show. I made up my mind that I would do this alone & I did. With no regrets & no hesitation I moved on in life as a single mom with a disability.  

Many felt pity for me. I don’t like pity, it’s a poor attempt at temporary love. She spent 6 months in the NICU & has been in & out of the hospital; PICU being her second home. In spite of, I loved her the way she was; Perfectly Imperfect. My Haley Jean earned her wings March 18, 2015 from cardiac & neurological complications. To experience motherhood in its rawness is a blessing that I will eternally be grateful for.

Dating with a disability

Dating has turned out to be a disaster! I decided to try online dating...Even worse. In my experience, most men that are online are only interested in fulfilling their fantasies of being with a woman with a disability. Especially one who’s a little person, not to mention if I can feel anything down there & if the wheelchair can join us in the bedroom. I’m a beautiful woman & I say that humbly.

I love to dress, fashion is my life & it shows when I go out with my crew. I post photos of me in my wheelchair, yet I receive very unflattering messages. Then there are times we hit the clubs...I will get at least 3 guys to buy us drinks all night, yet not ONE of them will ask for my number. They’re most definitely interested in my sister though. If only they weren’t so afraid of the chair.  I truly believe people fear what they don’t understand. I would love the opportunity to date again, to party & do a one night stand!!! To meet at least a few guys to date on platonic levels & see where it leads.

Giving birth with Osteogenesis Imperfecta

The disorder I have comes with many prerequisites, one being empathy, which I believe to be the reason I was able to care for & advocate for my daughter in such intimate & nurturing ways. I’m an intensivist so I’ve been told. I operate on such an intense level, I give my all until I’m all tapped out. The night before I gave birth via cesarean, I wasn’t nervous. Excited yes... But not nervous. I saw it as just another surgery, only this time it would result in the presence of a baby. My giving birth was nothing short of uncommon.

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