Tuesday, October 18, 2016

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 However the few disabled students were ironically loners, perhaps so withdrawn that hanging with other disabled students would assume that exact same pattern as other students.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!!!

Tuesday, May 17, 2016

Strand by Strand...A Day at a Time...

The past few weeks have been rather difficult emotionally. Struggling with pain both physical & emotional has placed dire strain on my body. Most days I can't get out of bed in the morning without some type of incentive..i.e. scheduled transportation  to the clinic for a doctors appointment. I'd much rather lie there in silence, captivated by my wandering thoughts & aching body. However, the stress of my emotions believe it or not trumps the physical agony of bruised ribs & pulsating stress fractures. I'm so accustomed to it that I only notice a difference when I'm NOT in pain. It's such a normal part of my life that I'm able to function day to day activities with a pain level of a 7. You'd be surprised at how sadness dictates ones quality of life. How the mere comings & goings are decided by each thump of the heart. Sometimes I wonder what will become of me. I think, how can one live in such darkness & despair, not to mention  the loneliness. I keep myself occupied with my bracelet project but I have to say, as much as I LOVE it, even getting the "Blues" won't allow my pencil to scratch a dot on the paper. I am in a deep, dark place......What brings me to the surface is thinking of the fantastic parents who may feel alone, isolated....fearful & uncertain. What motivates me is thinking of my beautiful Haley Jean's memory...How the thought of not blessing others will do a serious disservice to not only the cause, but the very things she personifies. In that alone, I can create!! Not 1 second passes my thoughts without her. Not 1 night goes by without my lighting her candle......In that I feel her near me...Her soft touch, deep eyes & infectious smile, captured in the stillness of her. Each night at 10pm, her candle is lit, her teddy at my side then I sketch...... Everything about the bracelets are a reflection of both her & I in very unique ways. For one thing I ALWAYS search for strands with worn or cracked beads....That representing the rejected stone...My darling, My blood. And it is a reflection of my style, taste & personal liking. I'll NEVER make something for someone that I wouldn't wear myself. NO bracelet is the same....I want to emphasize each piece is special to the recipient by reflecting one's individuality.

So I've been asked about many things in terms of how I've been keeping busy, to the process of shopping for beads....First let me say....I'm a NEUROTIC when it comes to selecting beads! I select them the same way I shop for clothing or home decor. I touch, feel, ponder, think....touch again. Nothing cheesy, always selecting beads with depth & abrasions which in my opinion tell a "story"....those with weight & bulk....Also I purchase strands consisting of imperfectly perfect beads; those with cracks, scratches, bruises & abrasions. Those kind reflect my Haley Jean & her many ailments. Though her health wasn't perfect, I accepted her in spite of.....i.e. the rejected stone!!





A more masculine look :) 



By the way.....;)



http://teamhaleyjean.blogspot.com/2015/09/finding-me-again.html

Monday, May 9, 2016

Psalm 118:22...


When I first found out I was pregnant one would say that I was full of many emotions. Out of everything  I was experiencing, fear was right at the top. Being that I was 32 years old with Osteogenesis Imperfecta Type 3, statistics and science would say that a person like me should not have children. The likelihood of passing the gene to my unborn child is very high. After weighing my options and thinking long and hard I opted out of an abortion I even opted out of an amniocentesis to determine early on if the baby had OI. Besides in my opinion it wasn't going to change anything.  I was ready to accept her in any form God gave her to me. As time persisted, it was evident  that my life was going to be an uphill battle. After giving birth I became so calcium deficient that it was undetectable. I experience pain and frequent stress fractures in my ribs arms and legs. In spite of the challenges, motherhood was my number one priority. With that being said, our life became a roller coaster, not necessarily overnight but gradually.

To this day many people still question the route that I chose.  I wanted to give my child a chance at life. I wanted to give her the chance that we all had.  Since her transition,  I've had much time to reflect on the time she was on this Earth. As I think back to the statistics and science and Physician's opinions,  I have come to the realize that my daughter Haley Jean is the stone that the builders rejected. Like many other children who are born with genetic disorders,they flourish in spite of the circumstance. Looking into what may come, this rejected stone became [is now] the cornerstone, even in death. She's touched lives, hearts near & far. Given hope to the hopeless, proven that unconditional love is evident. Motherhood is a blessing no matter the formality & I was adamant about building on that principle alone. Afterall, who are we to deny ANY person the right to live, the right to motherhood....The right to a productive life.

In light of Mother's Day weekend, I'd like to share photos in chronological order. My Journey to Motherhood...













"The stone that the builders rejected has become the cornerstone" Psalm 118:22



So much has happened in the past few years that I'm not certain where to begin. I can say that in the face of adversity, the Lord was present. It is by Him that I prevailed in the dimmest of nights & coldest of days... I believe my disability & upbringing set the tone for the many decisions I had to make in this part of my life. This premise served as a prerequisite for the assignment I was chosen to execute. And since her transition, I have found when you lose something you'll never see again, you love & appreciate it even more. So this bracelet project is a motivational tool, even in my darkness I'm able to create, design....In fact I believe this is the only upside to grief. 



Many hve reassured me that once a mother, always a mother. I can't tell you how painful of a day I had yesterday....Internally I was broken, angry, hurt......The idea of a lifetime without her is one that I face each day. Most days I don't feel that I fit in that category of a mother. Trying again looks like it's no longer in the cards for me. Another harsh reality that I face everyday. Thank you all for your patience & understanding as I work through the darkness. I do know that no matter what, I am & will always be Mom Hart....

Happy Mother's Day!


By the way...;)


Sunday, May 1, 2016

A Candle to Light the Way Home...

I've gotten comfortable with lighting a candle each night, beginning the 1 year anniversary of her transition. Somehow I am at peace while it's lit. I find myself starring at the burning flame illuminating in the night.... Lighting the way back to my purpose. Often it trumps the sadness, briefly relieving my heart of the pain it ensures each passing minute without her. However the sadness returns once it burns out & my only hope is that sleep steps in beforehand, saving me from the cold emptiness the darkness represents. Sleep is practically non existent, or hard to come by lately... So I have allowed the darkness to be my friend. I stare at the candle, the flickering flame reminding me of my purpose, sealing my fate.... Reassuring my spirit that she is well. I am safe, I feel her near, I feel her presence... The burning flame tells me she's free... My Darling, My Blood...xoxo 




Reminder links....



Giving is Joyful...

Greetings everyone!!! I'm very excited about my bracelet gifting project. So far I've created & gifted 18 bracelets!!! The feeling of blessing others is so rewarding... I'm feeling a sense of purpose again, sharing my Haley Jean's unconditional love & beautiful spirit with others makes my heart sing. I haven't felt this optimistic in a long time. Beading has served as a hobby of mine for nearly 10 years now. In fact I guess you can say I created my first #BraceletsForBravery for my mother, not knowing back then my gift to her set the path that I'm on this very moment. I made my mom's bracelet as a get well soon  present...To lift her spirits. My mother, Imogene was diagnosed with Cholangiocarcinoma in July of 2011 & transitioned two months later.  Although she was incoherent by the time I finished, I gave it to her anyway. I even made her necklace & bracelet......That she is wearing now...to match the dress my sister made for her....That she is wearing now. I could go on for hours about the compassion my mother embodied, her diligence & innocence that radiated from her presence...As you know, that's where Haley Jean's name derived from....:)



So I wanted  to share a couple things with my readers in this entry so pardon me if it seems like a lot.....As I've mentioned before this project has provided me a great sense of purpose. The feeling isn't manufactured or scripted in such a way. It isn't tailored to fit a specific emotion or to purposely fill a void. It's as simple as providing acknowledgement of the struggle, giving back & being kind to others I empathize with. I get messages or posts from those who have received a bracelet, they're excited, grateful & determined more than before to continue the fight & that's all I want to accomplish. The pleasure is all mine, more than they'll ever come to know. Well I hope I didn't bore anyone to tears!! Finding solace in giving back is therapeutic & emotionally worthwhile. I do this out of pocket when I can & I've received donations towards more beads & supplies for other recipients. The generosity of people reaching out, wanting to give...wanting to be a part of this project & how they yearn to know more about Haley Jean  means so much to me. May the Peace of the Lord comfort you all & as always be kind & stay encouraged.....:) 


Just to name a few :)






By the way...;)

https://www.facebook.com/HoorayForHaleyJean/

Thursday, February 4, 2016

Zue Zue's Knots....

 Happy New Year readers!!!! I hope everyone had a fantastic holiday & a fresh start to a new year!! Since I've been away, I have used the time for personal reflection, healing & postiive coping mechanisms in hopes of learning to live this new 'normal'. This is unfortunately another short & simple post. Just a quick reminder of what I've been up to the past couple months........ So my niece Mariah has turned her talent & hobby of crocheting into a business calling it ZueZue's Knots, inspired by Haley Jean. Since Haley was an infant, Mariah would create the most intricate little frocks for her to wear; booties, bonnets, mittens etc. After finishing her blanket after her trip to Heaven, she decided to turn her hobby into an inspired work of art, creating custom handmade items just like she did for Haley Jean. For more information check out her IG profile link below...

And as for me I'm getting in-home counseling once per week in hopes of learning to accept her absence, painting when the energy allows me & just recently gifted 3 more Bracelets to deserving moms. To date I have created & gifted 10 bracelets total!!! It's so rewarding for me, for some reason this project feels so much more meaningful to have started it after her transition. I guess her transition has fueled or motivated my purpose in life to inspire others as best I can, to show people that I hear you & that I care. It's about standing in solidarity with someone, kindness & genuine concern for those who are hurting in some way....I just read someplace, a quote from Civil Rights Activist Rosa Parks "Each person must live their life as a model for others" This is something I've always aspired to do. For as long as I can remember I've been eager to help others in some way & when I can't, my heart aches. To invoke change when I can, to inspire others to be a better person. It's difficult in my own darkness but I take each day as I can in stride & try to accept what I cannot change.

Before I forget I wanted to share something I had....Kinda an epiphany that came over me this past week....Solidarity. Standing in solidarity is such a humbling & selfless act. Attempting to own a portion of the burdens of those we love mirrors sympathy, compassion & patience..... This is the premise of my Bracelet project, I hope it blazes a trail to inspire others to acknowledge the struggles of those we love & strangers alike...Also posted below is the link for the bracelet project..... Be back soon..;)

http://teamhaleyjean.blogspot.com/2015/09/finding-me-again.html

https://www.instagram.com/zuezuesknots/
















By the way...;)

https://www.facebook.com/HoorayForHaleyJean/

Wednesday, November 25, 2015

Looking in the Mirror, What do I See...

Greetings guys & dolls.....As usual it's been a while since I've posted a new entry. Time has been kinda good to me, emotionally. I've had the opportunity to find some solace in my grief process as well as reflect on the past 8 months of my life. So a few things has happened in the past couple months that I've been away. As you know I started a handmade bracelet gifting project for parents that have children with special needs. That's been going well...If only I had more energy to produce them faster lol....I'm also painting abstract art for my apartment & working a few pieces for my family. Writing more often in my own personal journal to get things off my chest, got my niece working on a crotchet project for the NICU at Rush, starting a new article for Audacity Magazine (Go check them out by the way) & now as of yesterday I've decided to promote more underachieved beauty in the disability community....Whewwwwww!!!! That was a lot...lol... For more info on all those endeavors just check out my post just before this one....

So in the last few months or so my self esteem has taken a huge plummet down the drain. In the past I've been pretty happy or satisfied with myself. The life I've been given has had it's share of ups & downs yet I learned to master or tailor it to my advantage. Its worked up until recently, now I'm in a position where I question not only the skin I'm in but also why I'm in this skin. I see what mainstream defines as beautiful people & I don't see myself in that category. Why? Because I'm disabled. I don't fit the "norm" of how people see beauty. Social media has completely shunned anyone from adopting that crown, it's like a shark tank or a tank full of piranha just waiting for you to upload what you think & feel is beautiful. I saw an article a while back where young teen size 20 ish uploaded a photo on Instagram in her bra & underwear, sharing the progress she's made on her quest to weight loss & people sank their disgusting teeth into her like vultures!!!!! To add insult to injury, Instagram flagged her photo as "inappropriate content" siting  " it [photo]  didn't coincide with the views & policies of IG"  However people like the Kardashians, Amy Cuoco,  JLo & countless other celebs who pay for the "perfect body" are praised & worshipped....While us common folk are ridiculed on the sidelines. Of course they came up with some cockmammie [is that a word??] apology & reinstated her photo. Well If I had guts at that time I would've posted the exact kind of picture to stand in solidarity of this sweet young girl. I, like her, don't have a million dollar figure [literally] I don't have a massive bank account that affords me the opportunity to go out after Pilates & a Chai Tea to swing by Dr Ferdinand for a new nose!!!! Hell I can't even get anyone to replace & repair these migrating rods in my legs that by the way I need....So anyhow...Its such an ugly, UGLY world we live in, it's the first time that I've hated it, wishing I could move to Mars away from the superficial bull shit that we pay hundreds of dollars per month to watch on tv [Extra, ENews, Access Hollywood] While the world is watching those whom are physically fit, appealing to the eye, I [we] in the disabled community is overlooked, ignored & swept under a dusty old rug because that's not beautiful. Typically I'm with it, hair done, makeup somettimes, I'm fiesty, edgy & will check someone who's not coming correct....Lately I've been the total opposite. After my Haley Jean's transition I started reflecting on things in my life that I hadn't before. Yes I dated & played around here & there, yes I kissed a guy & got drunk & all that madness...Who hasn't? But my fire is gone....

After flicking through my IG account & others' posts I started seeing how no one...NOT ONE woman looked like me. So I'd like to start a hashtag handle #ProjectOIAmBeautifulToo2016 that showcases different faces of beauty for women with disabilities...Knowing you love & admire yourself raises your self esteem, it uplifts your ..So I took my iPod did my face & got my sister to do my hair, opened my blinds to welcome in the natural light & started clicking....I'm not doing this for the narcissism & self absorbent culture of selfies, but the very opposite. On one hand I can be a chatty, feisty chick, then on the other I can be rather recluse. I've always been one to observe, sit back & watch others make fools of themselves...Then I might join in the fun. I contributions is usually done with a different motive. I don't like the attention of selfies, in fact if....IF I post one, it'll be months or weeks before I post another. When I posted these pics yesterday, I was nervous from the potential attention it may generate, I don't like attention. But I put that aside for the sake of this new approach I'm trying to take.I want to capture the beauty in women with disabilities because many of us are full of life, edge, resilience & sex appeal however what society views as mainstream beauty, I don't exactly fit in that category. Now some may argue why do I feel the need to fit in, why not just be myself...To that I'd respond in saying that I am not trying to be anything outside of that...because that is who I am....I'm merely reminding others that this world is a melting pot, it's culturally & physically diverse, its versatility is what makes it so profound & inspiring. For instance, I have the most beautiful family one can hope for & they see my beauty as nothing short of anything less. Why can't the world see me [us] with that very same pair of eyes? Why is that in 2015 I still have people asking me "Oh, you had a baby for real" when we are supposed to be this progressively charged society. How online dating only goes as far as messaging...asking "so can you feel below your waist" "You're so pretty to be in a wheelchair"..How I reply saying "I'm pretty, wheelchair or not" Pricks!!!!!!  My goal is to make the effort of reaching & educating as many as possible about the diversity of beauty, what's beautiful, how we define beautiful & make an effort to reaching mainstream photography of the face of beauty in the disability community. I am trying to own my truths, own my identity & help others do the same....:)

#ProjectOIAmBeautifulToo2016




By the way...;)