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

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

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

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

#ProjectOIAmBeautifulToo2016

By the way...;)

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

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

Greetings....

Nothing really new to report today....Just wanted to share my GoFundMe update with everyone & re-post a couple other links as reminders... I'll be back soon with more input & discussion about what's on the upcoming menu..In the meantime I've found more comfort in laughter, creativity & fellowship with those who love me. Some days are harder to smile than others, but I manage somehow.... I hope all is well with everyone....Be kind always :) <3

The usual....LOL
https://www.gofundme.com/6p5vb0

Check out my "New Wheels"....Hilarious :)
https://www.youtube.com/watch?v=UlvMesl32W4

Please read & comment if you can....Also, donations of any amount are welcomed to keep Audacity Magazine up & running. Proceeds go toward payment of guest writers & contributors.
http://www.audacitymagazine.com/mom-and-baby-no-regrets/

Please "Like" & Share
https://www.facebook.com/HoorayForHaleyJean

No Regrets...

Hello family, friends & strangers!!! For the past couple months I've been working on an article for Audacity Magazine, an online magazine that emphasizes on disability awareness, advocacy & the everyday lifestyles of people with disabilities. This article focuses on my life before, during & after motherhood & my personal battles with relationships, strength, determination & love. Please read & share the link, Also leave a comment so the publisher will see your interest & I'll be asked to contribute again in the near future...;)

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


By the way, please donate any amount you can to Audacity Magazine. Funds go towards paying guest writers, like myself for contributing articles. Many thanks in advance!



Also here's the link to https://www.facebook.com/HoorayForHaleyJean

Update...

Many have asked what have I been up to....Well here's one; Painting!! I've found solace in a paintbrush & motivated by creativity. I think of her with each stroke of the brush & each bead I string....She is my muse, my darling...My blood <3

By the way, please view, Like & share the link below :)

https://www.facebook.com/HoorayForHaleyJean

Finding "Me" Again...

Greetings family, friends & strangers afar.....Goodness it's been a long time since I've blogged. I"m sure you've all wondered where I've been & what I've been up to. The truth is nothing else much has changed. Aside from finding things that will keep my mind occupied theres nothing else worth talking about. Finally started on filling out "Thank You" cards for those who signed the book at her services. It's been months but I couldn't do it until now. Painting has gotten more easy & therapeutic so the more I do it, the better I feel. However, unfortunately I've become more withdrawn, secluded. Staying home in my own space, alone seems more easy & safe for me. I am also dealing with more physical pain & working with my home care providers to get a good pain regimen going. It's rather difficult considering I have so much emotional pain as well....Still haven't started working yet, I guess no one wants to hire me for being away for so long. I even explained  [briefly] on my resume the reason for my hiatus. I hope it finds the right heart to give me that chance I so desperately need..I don't know who I am anymore or what my purpose is. I hope this process allows me to find myself again...To love myself again.....

So anyhow since my Haley Jean's trip to Heaven, its provided me with lots of idle time on my hands. Forcing me to think constantly day in & day out, I realized that it's imperative to keep her name & legacy alive in a positive way. I've come up with 'Bracelets for Bravery'. These handmade beaded bracelets symbolize all that Haley Jean embodied; courage, strength, tenacity, bravery & most of all Love. I'm choosing people with children with special needs to gift them to, as well as those who's lost a child. Caring for a child with special needs entails a great deal of courage & so does losing one. The aftermath of losing a child who was long-suffering is an unbearable journey. These bright, vivid colors also exemplify her personality; bubbly, happy & full of life. Her eyes big & bright like glass marbles you could get lost just staring into them, her smile so infectious, convincing you that all is well in the world. These bracelets are a reminder of all she epitomized.  When I make these bracelets this is what I think of. I'm so motivated by this type of creativity, somehow feeling rejuvenated when I'm beading. Especially for this reason. Although she's not here, strangely I sense her spirit. Fun & whimsical charms bring such excitement to each piece, not to mention the courageous childs' initial . I have a couple other projects I'm working on but it's too soon to dish. Just stay tuned.....  Thank you for being patient with me. I cant begin to tell you just how much this truly means to not only me but my family as well. We love you all dearly...;)

By the way...;)

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

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

"GoFundMe"...

Hello friends, family & strangers alike....Just a quick reminder to share & contribute if you can to my campaign to help reach my goal. I am excited to report that I received an anonymous donation today from a total stranger, I'm very thankful for their kindness.  Anyhow, not feeling well this evening. Just another lonely & sleepless night, anxiously awaiting the morning sun. Haven't had much to write about lately but mostly my hiatus is due to writers block. So my apologies for this short post. Please bare with me during my darkness. Everyone says there's a flicker of light in the midst of darkness. Unfortunately I don't see how that can be remotely possible but I hope they're right. God Bless...

http://www.gofundme.com/6p5vb0



https://www.facebook.com/HoorayForHaleyJean

A Motherless Child, A Childless Mother...

Have you ever went through life with blinders on but didn't know it until you're forced to evaluate yourself in "lifes" mirror? Well that's what I'm going through right now. I'ts humiliating being idle, sleeping til 2 or 3pm, looking for something to do. After an hour or of searching for a task all you come up with is re-stocking the the bathroom shelf with fresh folded towels, mating socks & shoes, comparing dark roast to medium blend coffee all while crying....hoping no one hears you. I wonder why me, I have no mother or a child so now my life seems so pointless.....I can't see anything but darkness. Painting has been helping & rather soothing. Since my finances have declined significantly, I can't even afford to buy supplies anymore. Beading as well has been something I've worked on to keep me occupied & explore my creative side. Just started Origami Paper folding....Kinda relaxing too.

They say God works mysteriously, that he sees the end from the beginning. How does He work this way without warning us of the inevitable? Not that I'm questioning His logic & Hand, but I just can't help feeling cheated out of what I thought was the greatest gift; Motherhood. Looks like I'll never have that chance again...Deciding to continue with a pregnancy that had obvious obstacles wasn't a hard one to make because I'm no novice to obstacles. I didn't know how to walk away from it because I wasn't built that way. As I have said in the past I don't regret that decision, rather I've learned to embrace it. Just recently heard a this saying, if you can't hide it, celebrate it....I've done that all my life, in fact that is the very premise of my life..That same fabric of embrace that has groomed me to the person I am today. It's probably why others may not understand my thinking or course of action that I take/taken during certain circumstances.

 As I am writing this blog entry my favorite televangelist Joel Osteen comes on. He said that people aren't born with problems because of their sins...It's so that God can give great glory at the expense of my enemies. I know that God doesn't make mistakes, that we're all here on borrowed time. We are here as a testimony to God's word, not for ourselves. I've always wanted to use my situation as a lesson for others, in attempt to provide some level of hope to those that are discouraged. I want to help others but I don't know how, my heart aches. I'm deeply saddened, What will I do??

In the meantime I will speak to God to ask Him for answers & direct my steps because I've never been so lost in my entire life until now. Not being able to hold & kiss her hurts my soul, so badly that I can't explain it. I can't see my way out of this depression. What will I do? How can be of assistance to anyone if I can't even help myself?.... :'(

By the way...;)

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

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

A New "Normal"...

OI sure has a way of ruining any aspect of a potential good day. This morning while making breakfast, I sneezed & cracked a rib under my right breast. It shattered any plans I had for the day, such as going out for a haircut. I've lived with OI my entire life & have learned to adjust to it's inconsistencies & sudden obstacles. But lately life seems to have taken a liking to beating down & keeping me there. This stage in my life is the first time I've thrown a pitty-party for this long. I feel so beat down, defeated...useless. I'm writing this because I want to share the aftermath of what life is like....alone. Alone is kinda where I want to be. I'm sad all the time. I want to wallow in this sadness alone because I don't think it's fair to transfer my emotions to others.

So as you can tell today isn't a good day afterall. Typically I embrace my situation simply because this is my normal, however now this my "new" normal. I'm learning to cope without her & it's not going well. To add to my heartache I learned that her Palliative home care nurse Matt Hirshfeld died just days after her services. The shock of this devastating news sent me into an emotional rollercoaster all over again. I couldn't believe the news, it literally felt like a dream. I had no idea that he was ill so that alone caught me by surprise. He was always perky, upbeat & jubilant. He loved his babies & that showed in the way he cared for them. He was more than just Haley Jean's caregiver, he was our friend. He is sorely missed.

When I think of all the fascinating people we've met during this journey, it saddens me that those friendships are no more. Often times I wan to call or text the team to say hello but I think about how that may not be the best idea. They are professionals & since she's no longer their patient it's best move on & hold on to the memories.

As the days persist I will continue to keep myself busy as best I can. However, the next few days will be difficult becasue I'll need to relax as much as possible. I've got to get my ribs healed & pain-free & complete bedrest with meds is my only hope. It'll be very hard, considering that whenever I"m idle I have the hardest time coping with her absence. It forces you to think & remember when most days I don't want to because the pain is just too intense. Yesterday I stayed in bed embarassingly until 3pm. The amount of energy it takes to get up & out of bed to get freshened up is immeasurable. This isn't me, I don't know who this person is anymore. I don't know what "her" purpose in life is or if "she" even has one for that matter. I'm no happy with my reflection in the mirror. AS I said, it's my new "normal".....

I'll use this down time to paint, although I've run out of canvas It'll give me a reason to go to the craft store.  In the meantime here's a photo of my most recent project I found on Pinterest. Please pray that I get stronger than the day before. I'll be in touch...;)

By the way...;)

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

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

GoFundMe...

Check out the most recent updates to this campaign..Many thanks & Blessings :)

http://www.gofundme.com/6p5vb0

Day 69....

It's been 69 days since I last held my child. 69 days!! It feels like day 1. The pain of losing a child is one that cannot be described into words. My life is now a huge cloud of confusion & questions. If only I could go back in time, if only I had known what was coming then I would've been able to fix it. All day long I think of everything I had planned; learning to support her head control, eat & building a dollhouse. We had so many plans & one day those plan became no more. Nothing makes sense anymore no matter how I look at it. I'm in so much pain lately. I was told depression slows the healing process. I'm convinced this is hell on earth..:(

In the meantime,  I'm working on gaining my strength back so that I can help others in my situation. I'd like to share my health experiences with someone in a similar situation as me. Mentor others who feel hopeless & scared. While I was one of Rush's first patients pregnant with OI, the journey was uncertain. 2 years later, I [we] know so much more about my body, what to expect & decision making tactics.

Before I sign off,  I wanted to share this photo with everyone. It is the first & last time I held her in my arms. If I take a deep breath & close my eyes I can feel her pressed against me, I can smell her innocence. If I could do it all over again I would..No regrets, just love. And although I'm not sure what the future holds, I know that my body cannot bare the brunt of carrying a child again. I may never experience it again...But for what it was worth, I wouldn't trade the experience for ANYTHING in this world..I envy those who can.. No matter where I am in the world, my heart will beat for her .I hope to see her tonight in my dreams..:(

"I'm Gonna Wrap Myself in Paper
I'm Gonna Dap Myself with Glue
Stick Some Stamps on Top of My Head
I'm Gonna Mail Myself to you"

By the way..;)

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

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

The Aftermath....

Well my friends & family it's been a long, grueling journey. Picking up the pieces of my life after her transition has been one of the toughest things I've had to do ever. I received sooooooooo many beautiful cards, flowers from friends & strangers...New friends who I'm so blessed to have encountered. They've gotten me through like you'll never know. Within my own darkness I'm trying to be a good friend to others. I ask for strength in times of need, to be a mentor to those who need me in that capacity but it's so hard. I'm not usually one to say "Let me call you back" only because I'm unable to step outside of my own pains to be there for others. I hope to get back to that...One day. Most days I'm floating in disarray. Like that feather in Forrest Gump; floating in the wind with no guidance, direction or specific destination, not even a purpose. I swear I'm so lost, I wake up EACH morning forgetting what day it is, I have moments where I forget she's gone, as if I black out. And when I come to, the heartache repeats itself. It's unbearable. Most of the time I think of what could I have done in my past to have deserved this punishment. I'm not perfect but I try to be a good decent person & being kind to others. I feel like I failed her, the thought of living without her scares the hell out of me & there's nothing I can do about it...I just don't get it. It's been weeks since my last post. I haven't been able to get my thoughts into a cohesive manner on screen or in a journal. My thoughts don't seem to make much sense, well to anyone besides me anyhow. So I just keep to myself most of the time. I finally came back home a month ago & there's really no way to describe the pain & detriment my heart has experienced. My sofa is still covered with stains from her G-Tube site where she lays, medicine or milk droppings..Amoxicillin wreaks in certain areas on my sofa.I'll NEVER have it cleaned. Those stains will remain ingrained to signify the life & presence of my sweet angel. Medicine bottles still sit in my fridge, syringes & supplies sitting in their respected storage areas. What will I do? Talking about her makes me angry, hurt, sad & frustrated to the point where I don't want to talk about her. If I'm not drowning my sorrows in painting, writing or re-decorating I'm full of anxiety & balling my eyes out. The sound of her voice in my mind, or sound of the vents blasting throughout the house has left my subconscious in a fog. The reality is there's no vent sounds anymore, her tiny sweet cooing is no more...I have nothing else but the void of silence...

This is the first time I ever understood what "Finding myself" meant. I've heard it many times but didn't understand the voracity of it until now. I began painting again. It's therapeutic in being creative. She's kind of a mantra or inspiration to that creativity. I even started beading again, & designing some new ideas. I used to bead all the time but stopped because I was occupied. It was hard sometimes being a mom & doing my creativity thing. Now that I have time to spare, I'm using it to get back to what I was before motherhood. I also will be going back to work soon. Had an interview this week. It'll be hard to get back to the old Christine with all the trauma I've endured, not to mention the emotional & physical pain. Trying to manage both is hard. As they're both in not-so-great conditions.

I'll end it here for now & will be back hopefully sooner than later...;)

By the way...;)

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

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

The End of the Road...

It is with great sadness & a heavy heart to report that my sweet baby girl Haley Jean transitioned to be with our Lord Jesus on March 18 at approx 2pm. She had struggled with keeping an adequate body temperature & heartrate for months. After 2 weeks of tachycardic & febrile episodes, her tiny body couldn't go on any longer....I will end it here, as my heart is submerged in sadness & grief as I speak. Please continue to share her story of triumph, strength, resilience & love. I'm beyond thankful to be chosen as her mother. To God be the Glory!!!!!

By the way...;)

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

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

The "Blue Line" Blues...

Hi all! So, many people always ask how do I travel or get around if I need to go someplace. Most of the time my family takes me, especially if it's to a doctors appointment for Haley Jean. Or I also use PACE door-to-door service. However depending on the weather I may take public transportation such as the train or bus. Using my power chair is easier for me because the physical strain of pushing my manual for long stretches at a time can be difficult & painful. Not to mention the rough terrain of the ground throughout parts of the city. Holes, cracked concrete & uneven slabs are unsafe for riding.  One day, I had to pick up a script from Rush's PICU for Haley Jean & fill it at the pharmacy. I didn't set up transportation arrangements ahead of time & my sister was busy so my only option was the bus & the "L". By the way, the weather wasn't the greatest, it was raining & cloudy. My chair CANNOT get wet otherwise it may malfunction. Under these circumstances, a mother's duties never end. This is the main reason I'm raising money for a vehicle so I don't have to deal with the madness of public transportation....http://www.gofundme.com/6p5vb0 No one realizes the hassle it takes for a person in a wheelchair to get to & from by using the Blue Line to the Medical Center Stop. First, getting from my place to the Forrest Park stop has been eventful, as many times before I've gotten down there only to find the elevator is out of order. Which means either I just head back home or take an alternate route on the bus. Anyhow once I arrived at the Medical Center stop, I found that the Pulina stop has a turnstile, not a wheelchair accessible entry-way. Of course the nice bus station attendant didn't tell me that  I couldn't get out on that end & it took 10 minutes to get to the top of the ramp & back down. In order for me to exit the ramp I have to go 2 blocks west to Damen Ave. then come back 2 blocks east to get to the hospital. I asked the attendant who was there by the time I was heading home why was there a turnstile & not door I was shocked to hear the reason being that the city or CTA doesn't want to pay  a human to man that station such as that of the Damen entry. So after gathering my thoughts & dignity I decided to time & record my route back to the train from the hospital. The sign outside the Pulina stop says "Wheelchair access 2 blocks West" I have finally had the chance to record & attempt to debunk that "2 blocks WEst" crap ASAP!!! Below is the link to my youtube video of the nearly 20 minute trek back to the "L". While it may be 2 City blocks total, the mileage is clearly much longer. After finally making it to Damen my phone battery cut off, & almost my chair battery. A hassle is an understatement. While I was not doing any manual labor, I couldn't imagine anyone else in a self-propelled chair being forced to push that long exhausting length. needing just to get to the train. Why doesn't the city accommodate us when many people using that stop have some level of physical limitation? It's a hospital for Christ's sake!!!!! It took me 20 minutes to get to the platform, when the average person's travel time is significantly less. I emailed CTA about my findings but never recieved a reply. I'm hoping the Mayor sees my blog & video & make some changes. I began using that stop after I had my daughter & was going to visit her in the NICU very often. Some nights I'd leave the NICU after 10pm & make the long journey alone. I pray this message reaches the right people that can & will make changes to improve the Pulina street Blue Line L stop so that all can utilize if freely & effectively. Click the link below to see me in action....:)

https://www.youtube.com/watch?v=Gsk4FkRirPw

https://www.youtube.com/watch?v=9H6nqNcZX1Q

,

Man Down...

Well it's official (in my opinion) I have a couple fractured or bruised ribs... After a very restless night I'm finally up & its 3 PM. Haley Jean knows if something is wrong, she reaches for me & whimpers. It's kinda cute! But it also hurts my feelings because as a mother you want to always be available to your children. A cold or flu is one thing, the pain of fractured ribs is a horse of a different stripe. I'm sure you're wondering how it happened. Well usually I don't go into detail or of fear of creating sensationalism but here goes.... Blowing up balloons! Yep that's it.... I blew up about 30 balloons last week for Haley Jean's 2nd Birthday. You will never fully understand the amount of stress that puts on sensitive rib cages. Then you wanna know what put it over the top..... I zipped my coat! Yep.... I zipped my coat due to the cold weather, I shouldn't have done that but I did & now I'm laid up a few days. This is why I never dress properly in the winter because the pressure it puts on my chest is pretty intense. I do it because I get tired of hearing... "Hey where's your coat.. Or zip that jacket its cold out" seems trivial but hey, when you hear things long enough you start doing things to avoid the conversation. This is one of the hardest parts of being a mom with limits, you can't be there in the full capacity like you want. I can't hold our pick her up & even more heartbreaking is that I have to rely on others to help us. I don't like obligating people. Oh well, guess I'll lay on the couch a few days with Haley Jean right next to me. I will simply do what I've done before.... Wait it out. It's not as bad, there are breathing techniques to get accustomed to as well as sitting positions. Going to the ER isn't an option... They'll keep me for 6 hours, do xrays & find NOTHING due to my less-than -average skeletal make. Ever seen a chest XRay of an OI patient? Looks like a train wreck .... Well ya just can't really tell what's what, unless it's a clean break. Otherwise you're screwed. Not sure what's worst, the pain or the expression on the ER Residents face when they can't really help. I always reassure them it's not them it's me... Only good thing is the pain meds: ) At least then  I can have a little relief..... Until then......: P

By the way...;)

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

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

Passing the Time...

Greetings all! Hmmm...it's been a couple weeks right since I posted. I've been occupied with what they call "Life" in the past weeks or so. Nothing out of the ordinary but still occupied. I'm up tonight blogging to kill a whole hour before I need to get up to administer meds. I have an alarm that I do respond well too, however it's just easier on me [my body] to stay up until then. So I thought I"d post a quick entry as I attempt to keep these eyes peeled & the mind energized til 3am...Fingers crossed xxXxx :)

Lately life & it's many ups & downs have been catching up with me. I'm always on the go & hardly sleeping much. I'm sore a lot lately....A whole lot. More than usual. I know it'll pass but if it doesn't then oh well. I'm giving myself that pep talk, not for myself but more-so for those around me. I figured if I show some optimism in my health they'll back off with the worrying. Truth is, this is my life. It's always filled with pain, always has. Nothing probably won't change that. It's not that I'm looking forward to it or welcoming it into my life, in fact it's the very opposite. I just know the truth of my reality & that reality is living with OI can come with a lifetime of pain....You get accustomed to it. Some days you're able to manage without it showing on the outside & other days you can't hide it. And lately I haven't been able to hide it the way I'd like. The face never lies..It always tells on ya...Expressions that is. Just when you thought the phrase "hey you don't look so good" was a t hing of the past, someone bites ya in the butt & says..."hey you don't look so good"...LOL...I'll be fine though really. The cold weather contributes to bones that aren't in the best health by default so all I can do is bundle up, rest & pray for some relief. My age, having a baby & living with OI all play a major factor in my pain. It's come to a point where I've seriously gotta lay off the cheese burgers & Pepsi & start eating foods that will contribute to my energy level & exercise so that I can keep up with my growing Honey-Dew Melon: Haley Jean!!

Well I guess I'll get a head-start by peeling myself off this couch & get started. I know I've got 20 mins but hey....I'm starting to ramble & if I don't go now they'll be hell to pay...LOL..Overall we're doing well & HJ has been home nearly a month doing so fantastic that I can't contain myself. I'll try to check in again sooner than later. Oh, click the youtube link below for a little treat. Gonna go now so  I can catch some Zzzzz's

....Til next time. :)

https://www.youtube.com/watch?v=CFt0pLL3b7A

"We Can't Get Too Close"...

So...The most amazing thing happened on the way to the forum :)

NBC's "Grey's Anatomy" episode was centered around a couple who's unborn baby was suspected to have a diagnosis of OI Type II, one of the most fatal mutations that anyone can have. Statistically, most babies born with TII don't live more than a few hours after birth, sometimes a bit longer. This mutation consists of severely underdeveloped lungs, low birth weight, airway & respiratory problem almost no collagen & other health issues that can be irreparable. The couple decided it was in the best interest of the child to terminate the pregnancy. Many people of the OI Community weren't thrilled about the manor the news was delivered. Nor were they happy about the ending. For the past few episodes they ran this subject & I tweeted the show with Haley Jean's picture. I wanted to show that there is life beyond the diagnosis & in some cases OI isn't a death sentence....I got a RT from the show!! It was so exciting...I could barely contain myself. So many people RT, favorited & followed me back. I liked the idea of spreading awareness.

"We can't get too close" was a line from the show that will probably stick with me always. My parents faced this very potential option, told by medical officials to abstain from getting attached. Not much info was available in the 80's so it was a waiting game. This episode hit home for many people living with OI or somehow associated with it. That conversation, the tone, anxiety....The harsh truth of what is to come or what's to be is so heart-wrenching. Because I have Type III, the likelihood of the child having the same mutation was 50/50. While there were complications to be expected, none were like Type II. Many ask me how did I do it, how do I manage..My answer is always the same....I allowed Him to direct my footsteps, included Him in all of my decisions &  It was by God's grace that He carried us through the midst of the storm...

My goal is to tell others faced with this devastating decision that with God there IS life beyond the diagnosis...:)

Don't Forget...

A quick reminder...

http://oicandoanything.tumblr.com/

http://www.gofundme.com/6p5vb0

https://www.facebook.com/HoorayForHaleyJean?ref=aymt_homepage_panel

Memory Lane...

Here's yet another short post. Just sitting at Haley Jean's bedside & thinking back to our first ER visit at this hospital. We're even in the same room as before.... She had just been discharged from the NICU after 6 months. Not even 24 hrs went by before we were heading back in. She was having trouble acclimating to an environment outside of the hospital:  Respiratory distress. It was pretty scary. Everything I was taught in training in preparation for her discharge seemed to run through my mind like two -way traffic. I'm so thankful for those rigorous weeks of training. It prepared me for such a time as that & I'm grateful for all those who invested the time it took to help me get ready to finish this journey home: )

In the meantime, here's a couple links that should tickle your fancy :)

https://www.facebook.com/HoorayForHaleyJean?ref=aymt_homepage_panel

http://www.gofundme.com/6p5vb0

Haley Jean's Mom....

Greetings!!! Just a quick post tonight as I"m attempting my first try at Pinning my blog to Pintrest. Gonna be exciting!! After two weeks of antibiotic treatments, tacardic & febrile episodes we're still in the PICU. Again, what a way to ring in the New Year :( .....However it's been a productive couple weeks so I can't complain. Had a job interview right smack middle of her extubation....Talk about the case of the nerves..It's very challenging to balance & prioritize, I have no clue how I do it...I just do it...Anyhow, we were very close to a discharge this morning but with the fevers & tachacardic spats we can't risk any setbacks. I guess we'll look at it as a mini vacation....While she's here she can rest up under great observation & wonderful care. My kiddo is a trooper. Under the circumstance she's shown nothing but faith & resilience. It's me who's full of anxiety & a little fear. At any rate I hope to get some rest on this wrestling mat they call a bed.....lol..Oh the turmoil my back goes through when slumming in the hospital...It's not comfortable sleeping in a non-reclining recliner, or a 1 inch thin mattress. If you don't expect a week of back pain after that torture you're crazy!!! Sorry for the short post tonight. Not feeling quite myself this evening. The cold really does a number on my bones & since I've been sleeping here every other night I feel like a zombie. An aching zombie....Ugh! Tomorrow a hot bath will help with the swelling in my legs,ankles & feet as well as the throbbing in my side, that'll keep me going a few hours. Besides, watching my little girl grow & heal is what keeps my mind off the pain, it's the best medicine in the world :)

Evolution...

Hello everyone!! Well today is my 34th Birthday!! Happy Birthday to meeeeeeeeeeee!! Not a lot of people know that my birthday is on Christmas Eve. I kinda like it that way because when they find out people coo & swoon all over me..LOL..Idk, I guess I'm a little shy & plus I don't like attention. But at any rate I guess I should welcome the oooh's & ahhhh's considering how far I've come. Oh before I forget, I share a birthday with my big sis Angela....Yup!! More ooooh's & ahhhh's..lol....Don't worry, we aren't twins, we were born exactly 5 years apart. How cooooooool is that??!!!! For years we've wondered just how did my parents not only have one kid on Christmas Eve, but another one 5 yrs later?? Granted that question is rhetorical (spare me the visual) Besides I'm convinced I came here my Stork!! .....Haha!! So,  This year our sisters planned what was intended to be a surprise party for us at this local pub. The night was full of chicken wing-dings, deli sandwiches, unlimited marguritias, tequilla shots & a DJ that was full of energy :) The evening was topped off with us splitting $50 from 3 random dudes as a birthday gift. Great!! Now Haley Jean can get top-of-the-line diapers: Huggies!!! It was a wonderful night. Since our birthday falls on the Eve of the most holy night of the year, typically we stay in & relax, whether it's with dinner & a movie & preparing for Christmas day we always chill together. Seriously this year I had a hot date with my sofa, robe, remote & a glass of wine.....Don't forget my ZuZu in tow :)

I was about 16 weeks here :)

Randomness with my Capricorn chum :)

Partying like some Rockstars :)

 I named this Evolution because I wanted to talk briefly about how far I've come & where' I've been . AS you know, life for me wasn't easy & I certainly didn't have much optimism from the medical community. It wasn't their fault, I mean it was the mid 80's & not much medical information was available during this time. Hell, they'd lean on my parents for info..lol..I was born all fratured up like a jigsaw puzzle. Came home all wrapped up like a mummy...I had my first rodding surgery at the age of 5-6 ish...Both femurs & tib-fibs were done. Within a year or less my tibias began to curve. My femurs were fine, it wasn't until years later we found out that I was given the wrong type of rods in my lower legs. I had the kind that DID'NT extend as I grew, considering I was at the age where I was still growing. I quickly outgrew them & they curved as I learned to bare weight, with the rod in my left leg eventually migrating 1inch out. I was 13. Wasn't until I was 20 when I found a doctor who was willing to help me. He not only removed the bad rods but he completely straightened them. I believe that was the begining of my transformation into womanhood. When you look good on the outside, you feel good on the inside. Now that doesn't mean I got the surgery specifically  for cosmetic reasons, it was to improve my quality of life. It did just that & more. My phyiscal appearance changed drastically so the boost in self esteem kinda tagged along for good measure. In fact he wasn't gonna do the surgery if that was my main concern. But I didn't know that until after the consultation. That solidified my decision to allow him to do it. Even though I was his first OI case of it's kind, I knew he was placed in our lives for a reason. It was a real gamble & I trusted him with all that I had. For years no one would touch me, no doctor would even try to at least point me in the direction of someone else who could potentially help me. For years I kept hearing "No, sorry I'm not familiar with OI. There's nothing that can be done to fix it" or " I can't help your emotional state, that's not what theses surgeries are for"....PRICKS!!!!!!!!!! 10 minutes into the consultation I already knew he was the 'One'. It was his disposition, his warmth & kindred spirit that convinced me. I knew our search was over & soon we were to see the fruits of our labor. By 'We' I mean my mother. He had us both sold & we grew a friendship that was strong. This is probably why I'm so brazen & bold when it comes to Haley Jean's care. 'No' isn't an option, just doesn't work for us. If there isn't a way it's my duty to find one.

From a girl to a woman :)

So as you can see, Birthdays are very special to me. For a couple reasons: to reflect on what my life was supposed to have been according to science & to see where I am today. Not to forget that I share this day with the most wonderful person one can ever imagine....My Sister. In a house of 7 children; two sharing a Christmas Eve birthday, one with special needs, we never wanted for anything. We were loved equally, unconditionally & that is a blessing in itself. Truly it's by His Grace & Hand that I am where I am today....Together with my family, happy healthy & whole :)

By the way...;)

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

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