Saturday, November 5, 2016

The Fall of "Fall"...

"It is Fall, It is Fall.....The leaves are falling everywhere.....That means it's FALL!!" That's a line from a song on Yo Gabba Gabba "Halloween" episode... Such a cute show & my Haley Jean adored it!! So as you all know by now, the inevitable is here....FALL!!! That means Winter is fast approaching & nearly time to hibernate from the harsh cold & trek the ice & snow. Fall, such a beautiful season was always a time of year that I looked forward to. The crispness in the air, the change in the wind & the sound of rustling, discolored leaves as the wind blew somehow seemed to put me in a place of serenity. I'm not sure why but it always did. I'd close my eyes & take it all in. Even the scent in the air brought a tranquility to me as I'd bask in God's work. 

Unfortunately, things have changed & my feelings toward this lovely season has somewhat changed. Since having my baby girl, life as one can safely assume had become a tad bit more challenging. Cold weather made traveling even more of a chore for me traveling in a wheelchair & a child with rather unique special needs. I felt isolated from others because it meant that staying home safe from the elements offered by Chicago were in her best interest. Now, Fall reminds me of all the not-so-fun aspects of this life & time. No longer do I look forward to it. What once was a pleasurable pass time is now a painful memory. The branches slowly become bare as the days pass. I don't even like going out. 

This weekend I completed some bracelets for some wonderful moms & as usual, I photographed the finished product. Natural light & nature makes for the best props & backdrop. I took them outside & as I looked around, I saw these beautiful leaves all over the ground & decided to include them in the photos as the backdrop. The smell of Fall reminded me of the tranquility I once felt as well as the impending fears that's been harboring my mind lately. I did it as a way to embrace the pain, embrace the beauty that represents Fall; starting over....A new beginning...:)

Haley Jean's 1st Halloween Costume..She's a Scare Crow <3 

Here are the beads purchased from Happy Mango Beads :)

By the way...

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!!!! 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 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.....;)

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 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...;)

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..;)

By the way...;)