Wednesday, September 13, 2017

From the Eye of the Storm...



So many times we've been faced with situations that redefines who we thought we were. First, we begin early in childhood with creating the perfect Christmas Wish list & then comes Jr High when we we are dealing with how to adjust to puberty. We move down the line to High School & you all can attest to the biggest decisions in life at this juncture; Prom date, Prom dress!! After that comes electing the right college to attend, landing that dream job & moving up the corporate ladder in your career. Don't forget searching for that perfect mate, marrying your soulmate, finding the perfect house & the most meaningful name for your first child. These are all definitive points in our lives & we take much pride in those special moments that we only get to experience once. You nearly become defined by them, attached in a way that they become one with you. It isn't uncommon that any decision making process comes with pros & cons, that they are met with the ideas & opinions of those close to us. Often times they come on the heels of those unknown to you. Plainly put, social criticism is & always have been ingrained in our culture. As the reader, you can already fathom the journey we took together was a long one.

My daughter Haley Jean was born a preemie, 30 weeks exact & stayed 6 months in the NICU. She went through a plethora of health problems, to simply name one hurts my soul to the core. I prided myself on sharing her journey with others, as an inspirational force to those in need of hope. So you can imagine the amount of questions I had thrown at me left and right.

During the course of motherhood, I received a lot of questions from spectators. I've found that it's easy for people to ask questions & criticize when they just don't understand the unknown, mainly when they're not the ones in the control center. The questions came from various avenues; concern, fear & especially out of curiosity. I had to realize that my situation was quite unique, new & fascinating to some. Because of this, I felt it was necessary to recondition my mind to this new normal. Though it didn't happen overnight, in time I became accustomed to learning how to incorporate this new plan of action into my life.During this time, I dealt with a lot of trauma. One can't begin the emotional pain I felt as I sat in a closet sized family conference room during a phone interview for a new job while Haley Jean was being extubated. Or the nerves I felt when my phone rang at 3am from the PICU & being told that your daughter coded 3 times,,,,, How did I do it? I don't know.....

Questions that arose were "Why have a child knowing you're disabled" "Why all the tubes?" "Isn't there another way to get blood?" "I read this procedure on Google, I don't think you should allow those docs to perform this on her, would you like me to email the link to you?!!" "There's got to be another way, have you asked??" And that's just the tip of the iceberg. The emotions I felt when people would ask things were synonymous to ripping a band-aid from its wound, I've found that its easy for people to ask "Why did you do this" or "How come you didn't do that" when they weren't the ones at the bedside 'round the clock. Questions are easy for people when they aren't the ones making decisions that will ultimately determine life or death. It's easy for people to ask questions when they haven't been at the bedside for so long that you literally lose track of time, clothes go unchanged for days at a time because you're frightened to death to leave for a moment. Your body aches from sleeping in an upright position in the recliner for many nights in a row Its easy to ask questions when you're making decisions but you're sleep deprived & can't recall the last time you ate. You're appetite simply eludes you, all that matters is that precious little critter in which the Lord entrusted with you to be her mother. Out of all things asked, I wanted to write this piece to discuss why I didn't authorize a tracheotomy. Here's that journey...

One day, during a plan of care meeting with her team, the idea of a  possible tracheotomy was brought in conversation. I kinda had a feeling the conversation was inevitable. They felt this was her best option considering the many times in the past she'd fall into respiratory distress, where her breathing became compromised & labor intensive. In such case, she'd need immediate respiratory assistance through a ventilator. However, there were instances where they'd attempt to intubate during an emergency, once recalling a time where they tried 9 times.....A feat attempted by Rush's finest PICU staff & Attending's. She'd have edema or swelling of her trachea which would make intubating a hazardous nightmare. A trach would eliminate the time & hassle in future emergency settings. They could simply hook her up to the vent in literally seconds.  Here are some factors as to why I opted otherwise.

For starters there were a few mitigating factors that played a huge roll in that decision making process. One was [keep in mind I'm NOT a medical professional] simply looking at her phycial makeup it seemed there was no room to safely & successfully trach her. Haley Jean was super chunky with a very short neck length. In my thinking, I figured if intubation was a challenge when hyperextending her head/neck briefly, I'd imagine a tracheostomy would be 10x more difficult to live with daily. The collar alone would have difficulty wedged between her neck & chest along with much needed 24/7 home care nursing, requiring constant cleaning. In fact, a day when traching was put on the table during a plan of care meeting with the staff, her day nurse idly spoke these very problems to me. It was as if she was reading my mind, the irony was that she was a professional, I am just a mother.

Limited mobility & quality of life would take a huge decline, as her current state of mobility was already strained. She was tethered to an oxygen concentrator with canulla, pulse oximeter to monitor o2 sats & heart rate, G-Tube for feeding, as she was NPO [no feedings by mouth]  as well as administering 'round the clock meds. Simply catching flying bubbles was a feat in its own right....a feat that made me so proud to be the Chosen One; her Mom! This & reaching for toys were milestones for her. Following or tracking your finger were also worth celebrating & praising. So in my mind, a tracheotomy would only serve as an arduous impasse, both physically & safely.Would she live through the operation or would they lose her on the table was my biggest concern. And after much contemplating, we all came to the conclusion to opt out.

Another reason behind the decision not to trach was because Haley Jean's threshold was particularly low. Meaning she'd have a respiratory setback yet very brief. And if the risks outweighed the benefits, I didn't want to gamble with her life. So with all these factors involved,  I truly believed she'd do well without a trach. Conversation about a trach came on the heels of her Pulmonary Hypertension diagnosis. Please know, this decision DID NOT come lightly. It didn't come easy. In fact on the contrary. It presented itself on sleepless nights & worry some days.

This journey was a rather unique one, that as I stated above has redefined who I thought I was. I've learned something new about myself that I never knew resided in me. It's been 2 years & I still cry wondering if I did everything in my power correctly. I like to fancy the idea that me being born with a disability set the tone for this path I have taken. It merely served as a prerequisite to this test of life I acquired. If this is so, this disability was the BEST thing that ever happened to me...<3

Some friendly reminders....Click links below for more things Haley Jean & Me!


http://www.audacitymagazine.com/mom-and-baby-no-regrets/

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

http://www.thepicta.com/user/braceletsforbravery/3531438141

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





Friday, June 2, 2017

Happy Memorial Day!

Greetings friends, family & strangers both near & far.....Please watch & share my video slide show I created using iMovie to show my chronological journey to motherhood, through motherhood & life after the loss of a child. In honor of Memorial Day, I decided to create a slideshow of some of my favorite photos of Haley Jean & I..How are you spending your Memorial Day? What does it mean to you? Drop a comment in the "Comments" section below & don't forget to share this blog entry on your social media outlets. Have a wonderful day & as always be kind to one another...;)








Thursday, May 11, 2017

Bracelets For Bravery.....What's it All About?!!!

Happy New Year, Happy Valentines Day, Happy Easter, Happy Spring & Happy soon-to-be Mother's Day!!!!! Yea I know...It's been that long since I wrote on here & must say that I've got a LOT of catching up to do....Unfortunately this isn't the post..LOL....This is a brief post to discuss again in detail the premise of my project 'Bracelets for Bravery' So far I've made & given away 30 bracelets to some AMAZING moms because they deserve to feel special too. I'm very proud & equally passionate about this project & pray that soon I can take it much further. Being able to reward a deserving mom with something unique is what I live for each day. Please read this post in its entirety & share it with friends, family & strangers afar. As usual, I thank you all for taking the time to read what's in my heart. I'm eternally grateful for your time & don't worry...I'll be updating sooner than you think....God Bless & like Ellen says, Be kind to one another..<3













Bracelets For Bravery

I started Bracelets for Bravery about 6 months after the passing of my only child, my daughter Haley Jean. Like me, she was born with Osteogenesis Imperfecta also referred to as brittle bones disease. OI is a genetic disorder characterized by fragile bones that break or fracture with little and often times no trauma at all. She also had Respiratory Disorder, which is common with OI. Because of this, she spent a vast majority of her life in and out of Rush University’s PICU here in Chicago. As a mother to a child with Special Needs, I understood the hardships that came along with the lifestyle. You feel isolated, alone as if this struggle is happening to only you. Haley Jean inspired this project by her strength, charismatic innocence and infectious smile. After every health scare, she’d come through the end of the tunnel unscathed and as always, that resilience simply radiated. As a Special Needs mom, I wanted to do something special just for that mom. In receipt of of a handmade bracelet, it means that I acknowledge that same resilience in that mom, that I hear the pain and fear in her heart and that I understand. Thinking back, this life can be quite chaotic, you want to make the right decisions for your children. Sometimes those decisions can determine life or death. You want to know that you’re doing the very best you can and not that you look for validation from others, hearing it eases your mind. I see this in every Special Needs mom and want to acknowledge her in a very special unique way. These same qualities that my Haley Jean embodied are within that mom and child. NO bracelet is EVER the same. Every mom gets a one of a kind piece to emphasize individuality of the recipient and their journey. And so that the recipient feels extra special knowing that no one else has this piece but her.

Here’s a couple links to my social media…




I began blogging about life as a single mom with a disability, parenting a child with Special Needs. Now it’s about life after her “Trip to Heaven” and my struggling to cope.

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

Adapt...

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!!!! Again.....to 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 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