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/