Sunday, April 15, 2018

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

Wednesday, November 29, 2017

A Look Through My Lens...

Sitting around looking for a creative outlet different from what I've been doing such as writing, painting & beading. Though I love all of these things, I felt like doing something new, after all I've always held an interest in art no matter the format or medium. Each one carries a special It's just a matter of actually getting started. A few days ago, as I sat thinking & venting on paper was when it came to me like an epiphany. Alongside a TV commercial I noticed some enlarged black & white prints on the walls. Immediately I was hooked...I knew right then...Photography!! Now photography is something I've always been interested in doing. Not professionally but as a hobby. I've wanted to take some classes at a local art center here in the city however I haven't had the opportunity as of yet. It's rather expensive & I can't afford it. So I decided in the meantime, my cellphone would have to do.

I sat checking out the camera features of my iPhone8 & I was completely amazed by it's phenomenal capabilities & functionality it entails. So one day last week I decided simply to take a stroll around the block. The air was brisk, crisp & the sun was warm. After I accessed the camera, I flicked through the many filters; Natural Light, Stage Light, Portrait...The list merely trails.  Proudly I paced myself, my wheels crunching through the fallen dried leaves on the ground. It was such a gorgeous day, I couldn't help but smile. Looking around, I was taken aback at how beautiful the things that we pass each day all had their own unique flairs & flaws. The fire hydrants were old, rusted, worn out yet stood posted in its place completely unaware of its presence, not knowing just how many lifetimes its been there & will remain there. Imagine how new & unused these things looked when they first appeared? Compared to the wear & tear created over time & outdoor elements assists in these unique markings. The sewer caps, how different each one were yet they serve the same purpose. It serves as the lifelines or doorway to our water system, its the reason we're able to bathe, shower, swim, have a refreshing drink....I never noticed this until now. Stop signs were bright red, some with the neighbors graffiti tags from spray paints to add some personal flair, some were scraped, chipped yet there they stood tall & proud doing its job....Making sure motorists "Stop" Tall, sturdy, embedded into the cement encased base ensuring it stays put.....Old public phone booths with no phone serves as a reminder of just how technologically inclined our society, generation & culture has become...."For Sale" signs alerting passersby of what could potentially be a "Deal of the century!!" Worn & tarnished from natures elements, yet it stays put, etc.

Those were just a few of the descriptions of photos I took. Out of all of them, the ones I described held somewhat dear to me.....Though worn, weathered, tattered, exhausted these things remain & serve its purpose in the same token. Reminds me of my Haley Jean. Her tiny little body plagued with health issues, yet there she remained in tact. Her body worn, tattered, tired, differently abled, perfectly imperfect yet she was as beautiful as a gentle breeze brushing through a field of lilies. Rustling through the fallen leaves on the moist pavement on an early Fall morning after a short rainfall.

These things we see each day, yet we disregard them as vital parts of our lives. Why? Who knows....Possibly because they've become adapted to our sensory system; we know they are present, but if no one brings them to our direct attention, we routinely pass them by.....Just as the sun sets & rises again & again. Or possibly because no one truly considers the importance of these things. Especially if they're full of flaws, like humans do, we automatically regard them as "different" because of those flaws. Flaws, which is why I often use beads that are chipped or cracked, I feel they should be incorporated into something that is beautiful too....Again, like my Haley Jean, perfectly imperfect, tattered, worn, tired....But still RADIANT beyond measure. And like these things, flawed, perfectly imperfect, tarnished, worn.....But still present....<3

Some reminder links...

Sunday, November 26, 2017

Darkness is My Friend...

 Darkness is my friend, it excepts me in my most vulnerable state it is quiet, it doesn’t judge me, it doesn’t force feedback or try consoling me. It lets me be me...It lies still in silence, it’s steadiness and consistency  allows me the freedom to cry nonstop for hours on end without making anyone in my presence feel powerless. Darkness is my best friend. It doesn’t remind me of what I accomplished in the past, on the contrary  it simply lingers in the present. To linger in the presence is what I like, why go back into memories, or revisiting the past that I will never have the pleasure of reliving again? Darkness truly is my best friend because it is always there, it never leaves me,  it is always there not even taunting me, though strange is that my seem, but instead it is inviting. It’s embrace is warm, It is welcoming with open arms to hold me like a strong hug from my long lost loved one. It’s stance is vertical, unwavering, poised and always waiting for me.  Why would I ever leave her now, I lie in it’s stillness,  its thick blackness alone engulfed by my friend named darkness and in her I can be sad, angry, disappointed, depressed, I can even talk to her and not worry about a response or saying the wrong thing because  she only listens, yet never speak. Darkness, is equated with depression, it is equated with grief and loss all the things I’ve experienced jumbled into one another. Somewhat like a snowball effect, in one sweeping  push down a steep ravine all of these things that I now relate to is now become the forefront of my life. Darkness awaits me every night, throughout the day and in the light I prepare for her. I prepare by making jewelry, doing laundry, household chores ,watching a movie, writing etc. But once the lights inside my home become brighter, I know that it is only a matter of time that darkness will be here waiting for me. And I will greet her with open arms, and that in that space with nothing but my thoughts echoing in my head. She is all I know right now, and all I  wish to know until otherwise noted. Thank you my friend, it’s been a pleasure..... See you tonight....😓

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!

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...