Update...

Greetings my friends, family & strangers both near & afar! I've had a few new things happen since my last post that I thought I'd share it with you all. I must admit, it's good & of course some bad news too, but at any rate it's news. And it's life.

I'm back in Physical Therapy at Swabb & I must say I LOVE it!! I'm there twice per week; aquatic therapy in the pool & land therapy on the matted tables. My therapists are amazing!!!! I'm their first patient with OI & it's been a phenomenal learning experience for both therapists & patient. I like to educate others every chance I'm presented with. I allow teachable moments to flourish & bloom into a chain reaction, thereby allowing God to use me as such. I'm learning new things about my body & how to be more conscious of discomfort, not always dismissing it as just another association with OI. Im also learning to swim a little. Getting comfortable in the water & understanding how my core/center differs from others. It's just fantastic, I can't wait to return!!!

As you all know (or not know) driving has been on my 'To-Do' list. I've wanted to learn to drive for as long as I can recall. Before my mother's transition, she purchased pedal extensions for me to use on the gas & brakes. Unfortunately I've yet to utilize them. Because I can't just go to any DMV, I found a driving school in Wheaton, IL. that specifically teaches people with all types of disabilities & body types how to drive. Their driving instructors are trained to teach people like me all the basics & fundamentals of driving. I got so excited because I had found the answer to one of my prayers. Only to learn that it's very expensive & a great distance from my home. So that just sent me back to Square -1. My plan is to somehow save money for the lessons & the figure out the transportation to & from driving classes. So even though it's a step or 2 back, I'm glad to say that I am on my way to completing some of my goals I set for myself; learning to swim & learning to drive.

I've also had my 2nd article published after writing as a Guest Contributor for Audacity Magazine. a fascinating disability lifestyle online magazine dedicated to providing a platform for the misheard & disabled! It's about sexual behavior among people with disabilities. A candid & humorous spin on my personal experiences with sexual encounters & the challenges we face in doing so. Currently I'm working on my 3rd article with hopes of a bright & productive future with Audacity Magazine!!

http://www.audacitymagazine.com/battery-operated-boyfriend-sex-toys/


I was even asked to submit a piece about life with a disability from YooCanFind, another disability lifestyle platform that shares stories about people with disabilities. I'm currently working on an Online Takeover with YooCan where they will share video clips & pics of me for an entire day. I'm so honored to be asked, I hope I won't let them down. Link below...

https://yoocanfind.com/Story/1461/the-fragility-of-life-osteogenesis-imperfecta


On to the bad/not-so-good news.....

After months of broken promises for donations & sales for bracelets, I've decided to place the project on hold. As you know, I feed the project from my own pocket, the generosity of people sending donations & people buying bracelets. However, all of the above mentioned has been waning, forcing me to cease in giving away bracelets until I raise enough money to buy beads & supplies. It broke my heart to have to do this. But how can I make something when I've got nothing?!! In the meantime, I'll continue promoting the project with hopes of getting just the exposure I need to take this thing to the next level!!!

Life is what's happened to me & I still question if things will get any better. On the 24th of June I fell out of my manual wheelchair outside of my apartment. Attempting to catch my Uber to hang out with friends, the front wheels of my chair caught a lift in the pavement & sent me flying face-first onto the ground. In the midst of my fall, I felt my left ankle snap, sending a sharp pain up my leg. Thankfully with a fall such as this, I didn't get seriously hurt. I was able to put my hands in front of me so my face didn't hit the bare ground. I was immediately assisted by a passer-by & my Uber driver, who actually insisted he should call the paramedics. He & the passerby were so comforting & concerned. I'm so glad that I was accompanied by such good people. After spending nearly 12 hours in the ER, I finally was discharged with a bad sprain to my left ankle. The orthopedist on call placed a splint from the knee down. I couldn't believe that after nearly 20 years, I was in a cast yet again from a fall. My mind was racing in every direction possible. Not only was my evening ruined, I had started a new job a few days prior. So yes, that's the good news. I got a new job as a Document Reviewer. However, I have been plagued by a fear of falling again since the accident that I’ve refrained from using my manual chair if I’m not with family. The things OI takes away from you, courage & faith... the very values I’ve always lived by, the core & foundation of my existence. This is the most vulnerable I’ve ever felt in my entire life.

Months of emailing, calling & begging recruiters for a job had finally paid off. I was so desperate for employment that I found myself baring my heart & soul to recruiters, explaining to them exactly why I was off for such an extended period of time, in an attempt to get them to understand. I told them things that I’m certain was TMI, my personal tragedy in hopes that I’d gain some amount of sympathy. To no avail, only thing I received were more unanswered emails. Finally, after some self encouragement, prayers, faith & assertion, I got the job. But damn the timing couldn't have been more offset than this. What was I gonna do? This happened on a Friday & I was expected to return to work the following Monday. I did what any self respecting person who prayed & begged God for this position would do; I went! Yes, I returned to work that following Monday, just 3 days after falling out of my chair. Embarrassed, I rolled into the office wearing one shoe & in total discomfort, physically & mentally. It's bad enough that my wheelchair tends to attract wandering & wondering eyes, but now a missing shoe with a black sock covering a fat foot made my thoughts worse. Although no one made me feel bad, my mind just automatically goes there, with my heart in tow. As a person with a disability, I try my best to be as "normal" as I possibly can, mainly in a setting of able bodied coworkers who's most likely wondering just how did I get here? It's always something in my life that pops up from time to time to remind me that I am disabled. OI always seems to have this power over me. LIke it controls me, especially when I need it to behave itself when I'm on a mission to prove to myself  that I can indeed "Do this!" Sometimes I just  HATE OI & all it's taken from me; my sense of freedom, motherhood & my baby girl. That's just to name a few. It hasn't allowed me to date, get out to making new friends, I could go on forever, but I don't want relive those moments of loss.   So yes, I got a new job & was finally able to catch up on bills. I can't begin to tell you just how hard it is to do this. Working with a "broken" ankle & a broken heart & a broken spirit is just something I don't think I can continue doing. I do promise to keep trying for as long as I have breath in me. Besides, I promised my little Angel a headstone. Knowing she's out there with no identity is something I'm embarrassed of.  Now that I'm working, I can start saving up for it.. I'm tired. I'm so exhausted & praying for strength everyday to get out of bed to face the day is a real struggle & coming out only to see that Pace/CDT has pulled off & left me because I was 1 minute late, now I have to take public transportation. I feel so weak. Helpless, feeble, destitute & powerless. Believe me when I say, this is truly like finding my identity all over again, learning how to live life again. I feel defeated in a way that is attempting to  mentally cripple me..What will become of me? I wish I knew. Not only did I need the job for serious financial reasons, but I wanted a job. Many people don’t like working but truthfully, I do. I love feeling a part of something, that my contribution to the workforce is a testament of triumph that’s indicative of the time I’ve put into my education. I even refused to have my student loans completely forgiven because in applying for this particular waiver states that my disability is forever, that I cannot work because of it. I would be bound for life to never work again. One thing that I can say about many people who have a disability is that independence & capability is VERY important. To say that we aren’t worthy or able to do something when we are is abhorrent. To be able to do something in spite of our circumstance is what keeps us going.  And to do things for as long as we’re physically able to is imperative. That said, no matter how hard things become for me to perform, I will do them for as long as the good Lord allows me.

I do my extreme best not to complain, but I feel painted into a corner & just don't know what else to do or feel. I'm very thankful for the things I do have as well as the things I can do. My heart lives in guilt when I complain because I could be in a much worse situation. There are lots of folks in the wold who don't have half of what I do. My heart aches because of this. There's a song by one of my favorite singer's, Fantasia. It goes, "Sometimes you have to lose to win again." I've lost so much & praying that I'll win again.

Well Im going to end things right here. I hope that whomever is reading this entry will send a little prayer for strength my way. I hope this entry finds you well & in the best of spirits. God Bless you all...<3

A Look Back...

Greetings friends & family both near & afar.....Per as usual, it's been a long time since I've added a new blog entry here. I've found that lately, my trying to write seems to come more & more difficult for me, considering how my experiencing such heartache is taking over. It's controlling my life or at least trying to & every day it's a war within myself as I attempt to rail against it. I've always been vocal for as long as I can remember, never being afraid to speak my truth, to utilize my words. I know in my heart that I will gain my strengths back in due time. After all, I heard someplace that there is power in rediscovering your voice & that is the latest challenge that I'm working on.

Moving on.....A couple days ago while looking through some old homework assignments & medical  documents, junk mail etc, I found a sheet of paper written from top to bottom & on both sides. I noticed the date & realized it was one of my first journal entry notes. A few people had given me the idea to start journaling to help in coping with Haley Jean's chaotic health & to share my thoughts with myself. One night, I decided to give it a chance. As I said, I noticed the date & realized it was indeed a time when she had been hospitalized. Christmas was coming & she had been there a bit over 2 weeks for sepsis & respiratory distress. We had been home from the NICU 3 months before this happened & I can recall feeling frightened & overwhelmed all over again, like I did in the NICU days. I remember feeling afraid, inadequate & just not good enough overall as I grabbed a pen & paper from the counter in her room & quickly began to write. My thoughts began wandering into the abyss of the beginning. Revisiting feelings I thought I'd suppressed enough to forget them completely. Memories are a funny thing; just when you think time as wiped them out, a scent, a sound or a circumstance immediately reveals its long hidden presence. Holding this sheet of paper in my had, forgetting what I was looking for, I began to weep. My heart began beating rapidly, breathing became labored, my watery eyes glazed across each line as they strained to read through blurred visioned caused by tears. The page was warped, stained with something reddish orange, the corners curled inward with a brownish color serving as an uneven border. It was stiff, crumpled as if it had gotten wet then dried, but felt like it would tear if handled improperly. In spite of how warped this page was, I still was able to read it legibly. Suddenly I began to smile, thinking that this page was just like my Haley Jean; fragile & warped from a laundry list of health ailments, yet able to be viewed as a human being, understood & loved. It will remain in my keepsake box that is filled with lots of her little trinkets.

As the day went by & the sun began sneaking behind the retirement center across the street, I decided to share this journal entry with everyone. You all have helped in shaping me as mother, as a woman who is heartbroken in more ways than you may ever come to know. I can't think of any other people I'd rather share it with. You all are those who experienced this journey alongside me in prayer & thought. I'm forever grateful..:)

"My Thoughts" 12/16/2013

Only a few days or so left before Santa comes to town & where are we? Stuck in the PICU here at Rush. As I sit quietly at her bedside, the beeping of the machines act as a hypnotist, a white noise while I drift into memory lane, reflecting on the past 2 years of my life. The road traveled has been an interesting one, one that was completely unexpected. After a few days of finding out I was expecting my first baby, my mind was bombarded with yet even more thoughts. This time of what my mother would think. I was semi-employed, in debt, disabled & dependent to some extent. My intended was 20 years older than me, twice divorced with 5 other children whom were all from both previous marriages. Like myself, he was not financially stable. Overall he was in no position to support us. My mother was probably turning over in her grave if she knew what I had done. I was pregnant and unmarried to a man who had no intention on committing. I know she didn’t want that life for me. I was embarrassed & ashamed & her opinion meant the world, even in death. My mother thought very highly of us, expected the best for us and out of us all. Although we all didn’t live the ideal lifestyle, she never made us feel little or unworthy. In spite of my circumstance, there was no way I was aborting my child. I discovered potential I didn’t know existed within me from the moment I found out I was having a baby. As the days approached towards discharge from the NICU, the hospital staff pressed harder and harder to “train“ me as a caregiver. I learned CPR, how to operate the feeding pump & administer medications through her G-tube, how to operate oxygen tanks, the concentrater etc. As you can see, her general care had more requirements than the average baby. I couldn't determine if they were trying to help me or if it was just an attempt at deterring me from wanting to take her home. As it came closer to discharge, there were talks among the NICU staff  about her going to live in a medical foster home because she was technologically dependent. She was on oxygen 24/7 & was required to wear a pulse oximeter when she slept at night & during nap time in the day. I was eager &  willing to learn how to care for her. The thought of her living with someone else gave me nightmares. I was afraid they would try to take her away for me. It was their opinion that I was unable to safely care for her due to my physical disability. They are legally bound by law to intervene if ever there's a child going into an unsafe environment. They told how they were simply doing mine, & I explained that on the contrary, so was I. As her mother, it was my job to advocate for her well being. From the time I found out she was in my womb, I promised her that I'd fight for her, even if it meant my life. I felt bullied & discriminated against all because I wasn't married & disabled. This was the only time we did NOT get along. It was the one time in my life that I was deeply afraid of losing my child. They brought me pamphlets, telling me all about the wonders of Misericordia, how fantastic Merriville facility was & the amazing benefits of my child living with a medically trained foster family.  I started feeling like I was being pressured & harassed because I was in a wheelchair. It was as if they didn’t see me and what I had accomplished in bringing her into this world, none of that mattered to them. I had became so  overwhelmed with pressure to make a decision that all I could do was cry.  I felt that if I sign that piece of paper to give my child to strangers, my rights as a parent would become forfeited. After weeks of frustration, tears, praying, fear & heartache, my family came to show them that I had a great deal of help. Afterwards they realized the help I had at home was nothing short of pure love. There was no longer any conversation about Haley Jean going anywhere else after the NICU besides home with me. After all, there's NO place like Home <3

Valentine's Day 2015