Thursday, September 23, 2010
"NOT YOU" Not the best day to read my blog for the first time...
Today, is venting day. If you have never read my blog and this is the first time it may come off as rude and you may not want to come back again... but plese do please? If you are a family member, please know this MAY NOT be directed to YOU.
Its funny how EVERYONE and their brother claims to "have been there" for my husband and I through our journey with our daughter Brianna. REALLY people? You guys have NO idea what our journey has been like. How were you THERE? With a phone call? By stopping by the hospital once or twice in the 20 different times she has been hospitalized for 5-15 minutes? You where probably in the way and making us feel more like Sh!t than you were of any comfort or help.
Funny and you claim that you were there for us? Tell me please do tell me how you were?
So the first time Brianna was hospitalized for her first surgery (her major surgery the emergency one at 2 am and when we received her diagnose of ACC) the hospital room flooded with family and a few friends (thank you, some and MOST of you I love dearly and I know you were there because you care an example of ONE of the persons I am talking about is my aunt F who has a disabled adult daughter of her own, I know its not easy for her to be out without her daughter so her? I greatly appreciate that she came out) of course my mother my father and my sisters (this does not apply to you 5 I love you and without you 5 I would be dead).
Ok I have a HUGE family... when I say HUGE I mean HUGE countless aunts, uncles, cousins, cousins kids, just a huge family. After my daughter has had so many procedures tests hospitalizations so many close calls... I can say a few have never given a sh!t to vist not ONCE and more than HALF have not visited after her FIRST hosptialization... I have even heard comments like (WELL SHES IN THE HOSPITAL ALL THE TIME PEOPLE CANNOT GO EACH TIME) I wanna know something... Why the hell not? Because you all are too busy shopping, makign dinner, taking your kids to practice living your oh so happy joyful lives with little to no worries? Is that why you cannot spare a few minutes of your day more than that one time you visited to visit my daughter who is perhaps your niece (not my sisters) your cousin your cousins daughter your nieces daughter when she is fighting for her life? If not to visit my daughter why not to visit me and see how I am doing to see if my husband and I need anything or to simply to FREAKING PRAY FOR HER ALONG MY SIDE!
Sad but true...I hear all the DAMN TIME from family and friends "I will pray for her" and you know what? I bet my damn pants you have never gone home and said a prayer for my daughter.
I could sit here and call out people one by one but I choose not to because there is no point because other than my sister no family follows my blog... unless I randomly post the link on my facebook page and they take a peek.
I have first cousins who have NEVER visited my daughter or given me a call to see how shes doing (and trust me even when they have known she was hospitalized) funny how the word spreads that "Chely's daughter is in the hospital AGAIN" but no one takes time out of their perfect little lives to check on us. Well I cant say no one Mostly no one.
When my baby has had surgeries... everyone has either been sleeping, working, shopping, taking their kids to school happy as can be.
I wonder how many people in our familes (my husbands and mine) can actually imagine the reality of it all.
What it is like to hold your 5 month old child purple in the face not breathing lifeless in your arms thinking this is IT she is dying in my arms... can YOU relate to that can you even IMAGINE what that feels like? No I didnt think so ( and to my followers I know some of you can and even worse situations so NONE and trust me I mean NONE of this applies to you because my online family on the Listserv for ACC the NODCC and for chromosome disorders the CDO and other blogspot friends have been there for me through thick and think more than family and friends again excluding my parents and sisters ).
Can you imagine what it is like to be told at 2 am that your child MUST have major surgery done within the next two hours or she WILL DIE? Can you freaking imagine the feeling Angel and I were having when we heard this? HELL NO FREAK NO you CANNOT even begin to IMAGINE the feeling and TRUST ME when I say YOU CANNOT EVEN BEGIN to BEGIN to BEGIN to Imagine the feeling.
Remember without previous warning that there was anything NOT TYPICAL of your child.
Can you imagine the feeling of seeing your 5 month old precious chubby angel baby entering the hospital room in the PICU pediatric intensive care unit with a tube coming out of her mouth hooked up to a machine doing the breathing for her? NO
Can you imagine the feeling of seeing your 5 month old innocent child with a tube comming out of her mouth pumping her stomach and a jar hanging fromt he tube with stomach bile and blood? Can you imagine seeing her eyes swollen like hell from the anestetics? The IV line coming out of her forehead because that was the easiest vein to poke.... NO you cant even picture it huh why? Because none of you where there when we got to see our child immediately after surgery we got through it alone, just Angel and me. ( are you starting to realize why I love my husband so much and why I have forgiven him for his infedelity? here is why read what we have been through alone, yes you heard me.... alone )
The night of her first surgery March 2008... I called Angel's mom (my mother in law) and I told her they were GOING TO DO SURGERY hint hint get your ass over here and be with us... I told her Angel was a mess I told her it was major surgery I was crying my ass off. We lived 20 minutes away from the hospital she could have drove her ass to the hospital to be with her son and me when her grandaughter was having major surgery. Did she? NO. She hung up the phone and most likely went back to sleep... and you tell me you love your grandaughter more than your kids lady? You are so full of shit.
So tell me again people... how were you there for us? Who was there when my husband spent 3 hours on the waiting room floor infront of a statue in Jesus' image praying and crying? not you.
Who was there for us when I was walking around the hospital like crazy crying "my baby, my baby, my baby, my baby, my baby...." not you.
Who was there for us when the hospital called the church to come baptize my daughter in her operating bed alone and when we were asked if we wanted her baptized "just in case"? not you.
Who was there for us when we were up nights and days in a row without a bite in our stomachs and our eyes were red as blood from staying up praying and crying by our daughters bedside?
Who was there for us when we had to make the decision of doing her second surgery April 2008? when we had to make the decision of putting in a gtube or not? not you.
(my aunt L and uncle F were there THAT day and I appreciate their help with Brianna that day).
Who was there for us when we had to learn how to feed our daughter through a damn tube surgically placed in her stomach? not you.
-- How many of YOU family know how to feed my daughter in case of an emergency? 2 of you? Because you lived with us at a time. But no one has offered to learn and help me out and give me a freaking break. Everyone says OH ANGEL should give you a break, hmmm when the hell do WE (angel and I) get a BREAK... TOGETHER?!?!?!?!
Who was there for us to see if we had money for food at the hospital? Tell me? We had to beg the social worker at the hospital for vouchers for BOTH my husband and I ($5 vouchers 2 a day) so we could have one meal each for the day... that is when a social worker would get to us on time before the caffeteria closed. not you.
People that were was my sister Mayra, and my mom who took me food a few times. BUT YOU? YOU my dear were not SO DO NOT FREAKING TELL ME YOU WHERE FREAKING THERE FOR US because randomly asking me "how is Bri" and then hearing what I am saying but NOT listening is NOT being there for me.
How about asking me 'how are YOU' meaning ME? How am I? I have been DESTROYED DEPRESSED ANGRY SAD HAPPY and everything in between through out the last 3 years of our journey and YOU my dear can tell me YOU have been there for us because you visited 3 times and randomly ask me how my child is ?
What if I were to ask YOU who have "been there for us" what my daughter has... what her health issues are... would YOU my dear be able to tell me what they are called or what they are or what they mean ? NO
I have hear do many BS excuses. We have no ride, we had no car, it got late by the time we got off of work... I can probably count with one hand the number of messages or calls or visits each member of my family has visited my daughter or asked how she is doing. and some I wouldnt even need a finger... well maybe I'd use a finger for those members.
BULL BULL BULL just BULL .
You see my daughter as retarded and she disgustes you, I can read through your stupid face and your stupid look.
Who was there for us when we had to make the HARDEST decision of OUR LIVES yet in August 2008... when we had to do a (what the drs called it in BRIANNAS CASE ) optional surgery... when we had to way out pros and cons of doing a 3rd surgery on our daughters little tummy... when we had to discuss her quality of life if we did or didnt do this surgery where you part of that discussion do you have a clue what surgery I am talking about? Probably not huh, actually NO none of you were. Yeah it was ultimatley my husbands and my decision but some support would have been VERY HELPFUL and APPRECIATED. Whatever you think is best whatever you think is best what do the doctors tell you... is what we got (probably over the phone too) well the doctor says its up to us and I want some freaking support damn it.
Who was there for us (again besides my parents and sisters) when Bri was fighting for her life (again) with adenovirus also known as the KILLER Virus (no one wants to be told their child has the KILLER Virus) pnumonia and a COLLAPSED LUNG and Unconcious... who the hell was there to hold my hand, hug me, let me cry with them to them and cry with me who the hell did that? No one. Who ever held me and let me cry until I could no more besides Angel? Not you.
You know this goes for both of our families his and mine. Angel only has two sisters and his mom here (his dad is in and out of their lives ridicules I know at his age!) and his brother in law that he considers a brother and his little nephews... well where the hell where you people when HE, Angel your brother your brother in law NEEDED " YOU " where the HELL where you when YOUR SON NEEDED YOU what the hell man!
We were and are two broken souls comforting eachothers broken heart we need a different soul who isnt lost whos heart isnt broken like ours to be there for us.
All his family his mom and sisters and brother in law and kids have LIVED with us at some point and even while living WITH US IN OUR HOME the calls and visits where scarse if any. Shame shame shame shame shame on you you people have NO idea what your brother/son was and IS going through you have no idea of HIS reality.
Shame on my family shame shame shame shame shame shame on my family you guys cannot begin to IMAGINE MY REALITY! You people have NO IDEA NONE.
Do you know what its like to see my baby cry out of the blue and get that feeling of "oh F shes doing IT again?" and running to her to grab her while her face quickly turns blue and then purple then you cant hear the sound of her breathing anymore because she is no longer breathing DO YOU KNOW THAT FEELING? The feeling of yelling at your baby "Brianna BREATHE baby BREATHE MOMMY is here DADDY is here COME BACK to me baby Brianna, Brianna, Brianna, Brianna come on baby you can do it its okay Brianna" while a river of tears is running down your face while your heart is pounding out of your body when you feel so ligh headed you think you may faint when your hands are so shaky you are afraid you may let her fall out of your hands BUT you dont you are strong for HER and keep going patting her on her chest blowing in her face "Brianna baby come on Brianna Brianna" do you know that feeling? I dont think so. But Angel and I sure do... its the WORST and TRUST ME when I say WORST WORST THING we have been through and since she was 5 months old until now they keep happening and we have probably done this over 100 times in the last 3 years Oh man way over. Thank God they are improving and not as often but they are still there and they still ALMOST KILL Me, each time I think I will loose her this time, this is it. Do you have an idea of how it feels to think you will loose your child SO MANY GOD DAMNED TIMES? NO. But us? We do.
Do you know what its like to put your hand on your babies back and FEEL the vibrations of the mucus in her lungs? To listen to your child STRUGGLE to Breathe almost daily ? To see her chest and throat cave in almost daily and wheeze almost daily? NO but we do. We stay up hearing her breathing so fast such short breaths the wheezing ringing in our ears the crack crack crackling sounds then the choking cough then her sleep apnea kicking in and we hear her stop breathing and we hold our breath waiting for her to catch hers... then she does she gasps for air and on and on same thing. Do you know the feeling of this? Nah ya dont ...
Being there for us, to me... is more than a text that reads "how is bri" or a random 5 min visit to the hospital once in the 20 times shes been hospitalized between 3 to 20 days at a time. To me it means saying you will pray for her and us and actually praying for her... perhaps praying for her WITH ME, maybe it means you want to come visit and let my husband and I sit out alone for 5 minutes to breathe a little outside air. Maybe it means bringing me a sandwhich and a water so that I can have energy to listen to ALL THE info the doctors keep spitting at us. Maybe it means you wont make stupid comments (because that is a lot of help within itself) like saying the PICU is the 6th floor bc its the highest floor in the hospital because those children are closer to heaven now... I dont know what it means to you.
When I was told "she is always in the hospital people cant go each time" well why not? If its your grandaughter, your SONS daughter, your daughters daughter, if its your niece, your sisters daughter, your sons daughter, WHY THE HECK NOT? Can someone explain that to me?
Other members of the fam live idk 30-45 mins at the MOST away and have NEVER visited EVER. That goes for my moms side of the family too. cousins aunts and uncles HAVE NO idea whats up with my baby.
So to all of you SCREW YOU!
Sorry to all my followers and family members who this DOES NOT apply to I love YOU!
I could vent for hours but then I will just get plain ol nasty-ER!
I LOVE YOU ANGEL!
My girls LOVE their daddy- Thank you baby for being their daddy!