Just Friday! :)

My husband usually sends me pictures of the girls, or of at least one of them throughout the day when I am at work (just cell phone picture texts but that works for us). It really helps the day go by faster especially FRIDAYS... I cant wait until the work day is over and go home and know I have 2 whole days with my girlies :) I wanted to share the randoms he sent me today. The ones of Bri in her high chair was when she was having breakfast (yea she gets gtube feeds but this wiggle worm doesnt stay still anywhere for an hour unless we strap her down so we do our best at keeping her entertained while she gets pump fed and having the high chair and table on it does wonders!).
The ones of both of the girls is of my cranky girl Hailey right after she got home from school and her "baby sister" I love when she calls her that! On one you can see one of Briannas (and when I say one of I mean literally one out of like 20) Mickey mouse toys or what she calls Kickey Kickey lol...HAPPY FRIDAY TO ALL! Thanks for reading!

PS: arent these girls just plain adorable? (yeah I may be just a little biased lol) God I love them to pieces! xxxxx


OH and PSS: The silver ribbon as seen below will be my next tattoo either in the back of my neck or on my back... the silver ribbon is the national awareness color for Brain Disorders and Disabilities Awareness so this one is for Bri! It also stands for Mental health so in a more secretive way its for my mom and dad to their depression and schitzophrenia. Isnt it gourgeous :)



Doesnt Brie look like the perfect QUEEN:)




*********I LOVE LOVE LOVE LOVE LOVE THESE GIRLS THEY ARE MY WORLD*******





<3 Ignore the messy toys on the floor my husband isnt all that great at teaching them to pick up after themselves lol <3

"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!

Sorry!

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?
not you.

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!

LOVE-

Araceli





My girls LOVE their daddy- Thank you baby for being their daddy!

Take a look at both of these pictures... what do you notice? Can you tell which one is 9 months old? Can you tell which one was taken today??
Ok I will tell you the one where Bri is wearing a peachy orange outfit with the TV in the background is 9 months old it was taken December 15th 2009 and the one of Bri wearing the head band with the sofa and messy toys in the background was taken today 9/17/2010. Can you see the difference? In the old picture the handle of this push toy is right at her reach in todays picture you can actually see her bending down a little to hold the push toy. She HAS grown... well I see her every day and always complain about how small she is but these very SIMILAR pictures 9 months apart made me realize that she has grown.
This push toy was ONE of the things Brianna used for support when she was learning to walk she was afraid, she took slow steady steps, she even fell a few times trying to walk with this walker push toy.... that was 9 months ago. She had not seen this toy since she started walking independantly a few months back, we shoved it in the garage and of course it had to be ME to bring it out of the garage to see what she would do with it. Well she started playing with it and pushing it like she would when she was actually using it to help her walk except now she was practically running with it... it bored her and she tried to sit on it like a car. Well my point is WHAT A HUUUUGE DIFFERENCE it was to see her running around pushing on this toy push cart now (at 3) compared to just 9 months ago when she was beginning to take her first steps (a lil before 2 1/2). WOW I am so so happy with all the progress she has made. These pictures speak for themselves.

She is growing up... you can compare the difference between her baby face and now toddler face.

She is a little bit taller you can tell because its the same walker push toy and in the new pic she is bending over to hold it.

She no longer NEEDS this toy push walker she can now play with it and RUN around it!

Again thank you babe aka hubby for sending me this picture today at work it made my day!

HAPPY HAPPY 3RD BIRTHDAY PRINCESS BRIANNA!

**Birthday Girl**



Sweet sweet baby birl. Happy Birthday Brianna!




















Our precious angle cake face Brie turned 3 this sunday September 12! WOW where does time go? Time sure does fly! If I went around with my tiny 3 year old and told people "how much shes grown", I am more than sure I would get weird stares as she is a petite little thing, but what outsiders dont realize is she was born a peanut. On September 12, 2007 she was born weighing 5.1 lbs and measuring only 16 1/2 inches long... well by the time she went home she was 4.13 lbs so she was tiny. I promise I will post pictures of her in the NICU of when she was days old so you can compare them to her now. Sure she is a tiny winnie little 3 year old but if I compare her to when she was born she HAS grown! (She is currently 23lbs so you have an idea of how small she still is.)

Well as happy and thankful as we are for 3 years of Brianna, there was a little hearache with her birthday... she wouldnt get to eat her cake. This issue is one that I can only see getting bigger and bigger each year. The first year she had no idea that there was cake, last year she noticed and she was curious... this year she really wanted some, and couldnt have any!

Having a child with a feeding tube that cannot eat due to aspiration is hard... but its even harder when you are planning their birthday party and you have to go out and choose a cake knowing they wont get a piece of their own birthday cake. This year we really did it for Hailey (Brianna's big sissy) shes 5 and really wouldnt get a party without a cake so we let her blow out Brianna's candle too.

This year Brie wacked her cake and got some frosting on her finger she licked it and found it disgusting thank you very much! lol

The really sucky part was that Brie was not feeling too good. She has been having a cough for a few days and a little wheezing. She wasnt all herself yesterday but who can blame her she didnt feel good.

However munchkin face got a whole day at the park playground. She had aunties, and cousins and grandmas and friends taking her to the playground all day (to keep her away from seeing food and stuff she cant participate anyhow). She had a blast opening her presents I will post a short video soon.


Thank you Mom, Dad, Sister Mayra, Sister Jessie, Sister Cari, Tommy, Letty, Gio, April, Liz, Amanda, Paul, Gloria, Nataly, and Nana for joining us in celebration of our baby girls 3rd birthday.

Brianna has been through so much in her short life celebrating her Birthdays are super extra special to us, each year seems to be getting better for our baby girl and with Faith and God by our sides each year shall continue getting better for our precious girl.

Here are some pictures I will post her birth ones later tonight so that you can compare :)

XOXOXOXO

Birthday girls Mommy.

The lovely young boy and girl at lunch time....

I want to share a little experiance I just had during my lunch hour at work. My sister and cousin (also co workers of mine) went to lunch at a local Mexican Food restaurant by our work. We have been there a few times in the last years of working here and its always empty maybe 2 or 3 customers at a time well not today... today it was FULL (this is a small hole in the wall place with like 10 tables that sit 4 each. Our first concern of course taking lunch at 2'o clock was "where are we going to sit?"

Well we proceeded to look at the menu and with the corner of my eye I saw a young boy around 14-15 years old who was a bit jumpy in his chair and clapping which caught my attention. I turned and looked at him and realized he was non verbal, he was signing and making sounds to let his needs be known. I took a quick look again around the restaurant to see if I could find a table for us three and didnt think anything else anymore it looked like a bunch of teenagers beat us to it :) Well we ordered our food one by one as my sister begun to order my curiousity was on the young boy that was excitedly jumpy and clapping... of course being Bri's mommy my looks and smiles to him were only full of love I wanted to smile at him or say hi, well I didnt.

Then I saw on older boy I have to say around 23 or so tall light skinned blonde hair green eyes wearing a black tang top and tattoos all over his arms and neck literally sleeves (I only mention the tattoo part to express how in the general public and society you wouldnt think of a young man with this appearance doing the beautiful thing that he was doing which I will get to shortly... before anyone things I am being mean about his tattoos my husband has arms full of tattoos and I am the proud owner of three tattoos lol a purple rose on my left wrist for Brianna and a pink rose on my right wrist for Hailey and a cross with wings and stars on my right shoulder so I am not really being prejudice)> anywhoooooooooooo.... I saw this guy stand up and walk to the other table and he grabbed a young girls drink (girl most likely around 9 years old) and he held it up to her put the straw in her mouth and helped her take a sip... this is when I realized the entire group was together at this restaurant. I kept looking not trying to be rude or make it obvoious. I realized the girl has special needs she needed help with her food. Then I saw the same young man walk to the next boy around 17 years old (the 17 year old was about a whole foot and a half taller than the blonde gentleman, sorry I have to call him something as I dont have a name for him) well the blond gentleman helped the other boy stand up and hold his tray and walked him to the trash can to toss his trash away.

It hit me. The entire group was special needs/ with different levels of disabilities. I started looking at each beautiful kid there. I noticed that all of them except the blond boy and a short curly haired young girl around 20 herself had a handicap. So I watched. The short curly haired girl helped another girl get up and throw her trash away. Then I heard her talking to the blond boy and telling him that he needed to set up Cindys timer. Girl "Dont forget to set Cindy's timer" Boy "how much time does she get?" Girl "Five minutes, tell her when the bell rings eating time is over"... (I figured Cindy was the little girl there also young like 10 years old or so that was sitting between where they were standing while speaking)... Cindy to me seemed the most affected she kept her head down and slightly tilted she kept rocking back and forth I dont know if they were feeding her or she was eating but then I saw that the young boy had a timer and so very gently put his hand on Cindy's shoulder and said "Cindy, I am going to start the timer, Cindy when you hear the bell eating time is over, and it will be time to pick up and go, okay?"

At this point I am making it sound like I stood there frozen just starring with my mouth wide open but no, I was talking to my sister and cousin while in line to order but I was more listening to them and watching them from the corner of my eye (them meaning the group of kids).

I saw this young short curly haired girl and this tall blond boy helping all these kids and joking with them, helping them eat, throw out their trash, and even helping them walk, and go to the bathroom. WOW ... My heart was so happy with joy that there are young adults so willing to help and so kind hearted. :) I wanted to hug them both. I was watching and the boy may have noticed I was watching I dont know what he thought I dont know if he realized I wasnt starring in a bad way I hope not I kept smiling at the kids and saying hi. I didnt want to say anything I wanted to watch from a supposed outsiders view. They had no idea that I have a sweet baby girl at home struggling with a lot of health issues and disabilities... that probably would never cross their minds. my sister noticed that I was dwelled on this, my cousin didnt even take notice.

Well I proceeded to order my food. I made a comment to the lady taking my order about how packed the restaurant was. She then said with a huge smile telling me that that was the fourth group of the day that the boy and girl (the blond and the curly haired) had brought three other groups that this was the fourth group that they had started since 11am this morning to bring groups of special needs kids and teens. I wanted to kiss this boy and girl for their huge hearts.

This made my day entirely. Knowing that this young boy and girl volunteer their time to help others period. WOW.

I added one of my favorite pictures of Bri its about 8-10 months ago but I still love the picture.

I have been so bad at blogging I have to catch up, I had surgery on August 30th 2010 to remove my gallbladder due to gallstones and was in the hospital for 3 days and then took a few more days off of work and just got back to work this week so it has been hectic catching up but I have some pictures of the Zoo and park pictures to post soon :) Thank you for reading.

OOOOOH but one thing I will definitely post about is BRIANNA'S 3RD BIRTHDAY that is comming up THIS SUNDAY 9/12/10!!!! I cannot believe my tiny baby is turning 3! I will take tons of pics and post !!

<3