Halloween a year later

Tuesday, October 31, 2017

Last Halloween I remember it so vividly.. harlow was in the nicu I still was having a really hard time being arround her I hadn’t met my guardian angel yet I had gotten a emergency appointment with a therapist to go over some of the thoughts I was having and the paranoia basically I needed someone to tell me I wasn’t crazy but I was all at the same time I remember leaving the hospital to go to the doctors office and seeing all these family’s out with their kids trick or treating moms with their baby’s dads chasing down the toddlers feeling like all I wanted to do was throw up everywhere I pulled in to my drs office and went to the phyc wing and signed in. Looking around seeing that I was pretty much the last one left it was 7 pm so I’m not surprised. I had been seeing a therapist since my 20 week check up when we found out somthing was wrong with Harlow I’ve always been very pro active about mental issues seeing I never knew my family history for the first 29 years of my life it was important to keep a eye on it not to mention I don’t like not being in control of myself and my thoughts and feelings so it’s always been a struggle dealing with anxiety and depression I know that’s a lot of girls “go to” excuse but I’m one who dosnt use it as a excuse more as fuel to keep going . Any who I was all alone sitting waiting thinking about how different my Halloween’s used to be my favorite holiday ruined I thought one more thing add it to the list . Getting down and out even more then I already was was like adding more poison to the existing wound painful and full of disaster. During this time my post partum was as a all time high I had just stopped pumping and was trying to stop my milk from continuing to come, I had just given birth and hadn’t even stopped to let my self heal so my well lady stuff was pretty painful and I don’t take meds so it was just adding more frustration to the mix my mind was so messy I couldn’t even focus when they called my name I was actively looking at my dr call my name and had no idea what she ment by it. I finally snapped out of it and jumped up.. ouch.. I sat down on her couch and instantly started crying she looked at me the way I hate to be looked at.. pitied.. I knew she didn’t know any better and honestly what do you do in hat situation my daughter was fighting for her life I had been telling this lady for 20 weeks how beyond scared of giving birth I was and for all this to go on there’s nothing TO say in this situation besides let you let it out .. once I got a grip I started telling her how scared I am all the time everything scares me I’m panicking all the time getting hot flashes like I’m going to die my hearts racing I can’t breath and so on she tells me it’s going to be ok.. lmao oh it is? I love my therapist don’t get me wrong but that’s like telling someone trying to get pregnant .. stop stressing .. lordddd anyways .. she continued to let me get everything off my chest all the things I was scared to tell bobby in fear of him thinking I would be a bad mom all the things I was beating my self up about just everything I could I knew I only had a hour I knew I’d leave here and go back to the hospital I knew my world would continue on the path it was so if there’s any chance of me finding a little peace of mind it’s right now. After getting everything out there I felt like a part of the 50 ton weight was lifted mabye like 10 of it I had 40 to go . But it was a start .. she told me not to be worried I wasn’t alone and there was a group I could go to I said sign me up!.. I left feeling like I had made a dent in my current issue . I felt like I could breath a little bit easier .. I called Bobby to let him know I was on my way back I’d see him soon.. I pulled out of the drive way on to the Main Street which happened to have houses on it I pulled over and parked and just sat there for what seemed like forever watching the little kids get so excited about the type of candy they had gotten ( yea this probably would have weirded me out if I saw some lady parked watching my kid lol luckily no one saw me I swear I’m not creepy lol) but I just thought back to the time I thought about what my Childs first Halloween would be what they would dress up as would me and Bobby join in? Would we put them in a wagon and pull them around for door to door? All the thoughts came rushing over me thinking would there even be a Halloween for harlow? Will she ever leave if she does what kind of quality of life will she have? It was as if I was in the ocean and wave after wave after wave was just beating the living crap out of me. I couldn’t catch my breath I couldn’t come up for air I was so jealous of these woman these perfect moms and their perfect kids I was angry like they had no idea what it’s like .. this wasn’t me this isn’t the kind of person I am I’m usually the one that always knows everyone’s fighting their own battles we don’t always know about but here I was hating any one walking by me with a healthy child. That was my que to leave the anger was far to consuming. I had got back to the hospital walked up to the Nicu and had to choose go in or sit outside .. I turned to my right pulled up a chair sat down and cried... 

Looking back at this night one year later some of the feelings I have are still rooted in me and I don’t think they ever will fully go away.. but Harlow is alive and that’s one blessing I can’t ever take for granted 🖤

Please stop drinking the hateraid

Thursday, October 26, 2017

Ahhh hello my fellow mamas n woman who love my little fam bam.. looks like I have to come on here to chat with you all from now on.. so I get it I shouldn’t let some pathetic person get to me with their mean ramblings when they clearly have something else going on in there lives that they decided to take out on little ol me.. except easier said then done.. the first could emails I ever received before harlow got all her friends I shrugged off simply because I thought it was well.. annoying that someone would take the time to be mean for no reason at all.. but the more I let people in to my life the worse the emails that I did get got.. I’m just a regular girl with regular problems with regular mistakes because I’m still learning like the rest of us. But my biggest pet peeve is not being able to defend myself. What’s worse is all I’m doing is trying to help woman out and let them know they are not alone on topics that some are scared to voice.. you would think people wouldn’t be able to find anything to bitch about with that ohhhhh but they do they do.. some of the things they said I laugh off like oh if you only knew but some of the things were extremely hurtful.. for instance who ever it was said I did the donations for harlows birthday to keep all the stuff... ok so your telling me... I went out made a fake registry to request 10 baby dolls, stickers, card games, kid costumes ect alllllll to then keep them for myself ... wtf could I possibly need those items for... HARLOW CAN EVEN HOLD SOMETHING FOR LONGER THEN 5 SECONDS... so yes you caught me that’s exactly what I did... good lord ..the other thing that got under my skin was they dug in to me about my financials.. this urked me pretty bad simply because no one knows about other people’s money it’s like when you vote you just don’t ask but they said I went and took the money from the go fund me mind you while harlow was in the Nicu and they her first 2 hospital stays and bought my self a new car... oh I did did I? That’s interesting where is this said car? We got a car to accommodate harlow and all of her possible therapy accessories and if she needs a wheel chair the same month she was born so we didn’t even have the money at that point.. they had threaten to call her new ciro dr and tell them we don’t need any help we can pay for it on our own .. yea I’m sure we would figure it out I never asked for the help they wanted to help us because THATS WHAT KIND PEOPLE DO they also said they would call the state and tell them we committed fraud... lol you do that let me know how it goes me and Bobby don’t have any help we pay for insurance just like everyone else and we pay for harlows as well ... Medici-cal covers her disability assistance.. and we don’t get a monthly check to help us out it’s just us..these are just some of the things that were said that are so far off being called ugly or saying the clothing I make are knock offs I mean it’s annoying yes but do I care .. no .. go on Etsy I promise you will find 40 other “ knock offs” woman will do what they can to help their families and that’s just that we make items to sell because it’s all we can do when we can’t go back to work I have harlows shop to help our family since I can’t go back to work it helps with diapers , whipes and baby food and clothes we don’t get assistance with that sorta thing no food stamps here..oh also apperantly harlow isn’t really “ that disabled” not sure what that means ..harlows week looks like this...
Monday saved for doctors appointments 
Tuesday therapy in the morning at home then ciro 40 minuets away
Wednesday therapy in the morning 20 minuets away
Thursday therapy in the morning at home ciro in the afternoon 40 minutes away
Friday... you guessed it therapy 20 minuets away

Thats just your basic week it’s usually changing every week with a drs appointment they couldn’t fit on a Monday 

So this is what I mean by not being able to defend my self it’s not fair when people assume they know you and think they have the right to bash you I put my self out there to help and for the most part I feel like I have been able to help others get thru hard times just as much as others have helped me but it’s people like these assholes who can type all this mean stuff from a fake name that ruin it for everyone . So that’s why I decided to put it on here the good the bad and the ugly of the journey we’re on. I hope who ever wrote me that email reads this and reads how far off they were and how you can assume all you want but being a bully is a ugly life to live and I highly suggest you find somthing better to do.. as for all my lovers that genuinely care I will do my best to share as much as I can that I feel I can’t get hurt by but of you have a seriously personal thing your going thru and you feel we have gone thru it please please please email me I am always here to help and be a shoulder to lean on 🖤

Alright already...

Wednesday, October 18, 2017

So what was actually a great day had a very ugly end to it .. my sleeping habits have gotten completely out of control .. I’m lucky if I get 3 hours and unfortunately I can’t even blame harlow saying she’s keeping me up it’s my brain.. my overthinking, overannoying, brain. I’ve even noticed I am becoming extremely paranoid at night when I go to bed and seriously think of all the ways I may have cancer or some sort of thing that will kill me . Never in a million years did I expect this part. This wasn’t in the parenting manual. Why did like get so SO real? I was so carefree before all of this.. harlow .. diagnosis’s.. therapy.. doctors.. and how in the actual hell is my 12 month old daughter braver then me? I’m her mom I’m supposed to be able to do it all? Why dose it seem like if I could give harlow my brain It wouldn’t even be a thought process but getting something that could kill me is petrifying? I don’t get motherhood I don’t get why it has to be a roller coster? Tonight was a really hard night for me I couldn’t get out of my head and I tried everything it ended up costing me a large chunk of my sanity after going for a walk taking a bath cleaning the appartment all at 1 am I decided what better way to get my mind off of things then to take my extentions out? I need them redone so perfect.. not perfect.. I tried tape ins for what now will be the final time so they are a pain to get out I have the solution I let them soak while I ran the bath started working on them some came out no problem others not so much . I started thinking about all the bullshit I have been thru recently all the hard times all the times that I wasn’t able to fall apart all the times I felt like I had been socked in the gut all the sleepless nights because of worry and before I knew it I was actively ripping out my extentions.. oh yes I’m not being over dramatic fulllllll on ripping.. by the time I was done I realized I had bald spots everywhere.. I sat down on the bathroom floor still unable to cry for whatever reason that may be.. and just thought why? Why is this happening to my life? It’s like I love harlow more then anything and I will do anything for her but why is everything such a exhausting mission to do? Why is it all over the place why does it cost a fortune why is everything a gosh damn battle? I feel like I’ve been fighting with someone for something every day for the last 12 months if not more I’m so tired of fighting but let’s face it this is just the beginning they say you can only bend so much before you break well I really think god thinks he made me out of silly putty Cus I’m still bending but I feel like I’m going to break soon I just don’t have the time to fall apart bobby can’t do what I do and I can’t do what he does we’re all a team .. oh life when the hell did you get so hard...

Um Im scared of what?

Wednesday, September 20, 2017

Who would have thought that on top of becoming a mom i would become scared of LIFE? Ugh everything freaks me out now what in the hell?? i never used to over think when i would die but now its all i wonder about because I'm so worried about harlow and what will bobby do and will he remember her meds and so on yes i know this is being a mom but ummm i didn't know these thoughts would join me! also the slightest side pain and i must be dying because god forbid i have a sore muscle... life got tooooo real out of no where I'm a champ when dealing with all things medical with harlow now days but when it comes to me all bets are off I'm some how falling apart in one way or another. Do you know how many germs are on ... everything??? ugh what issss this when did i get old when am i going to be able to go back to being 21 not a care in the world other then what bar i was going to that night (no I'm not a alcoholic for the record lol) i think just learning about how cancer happens or how these rare genetic conditions come out of nowhere its like every where you turn something scary happens. Like how the world is supposably coming to a end in 2 days. i mean come on no one can predict that but now I'm like omg if something happens i need to be able to charge harlow pump if i can't charge her pump i need to make sure i have a big enough syringe to be able to feed her till i can get power. ugh i may as well go live in the middle of no where and live off the land and not know what is going on in the world just take my chances lol. so THIS is why they said never to grow up. Peter pan had the right idea let me tell you.

 okay okay on to less hypochondriac things. So huge news harlow hasn't had a spazzum since she started her new meds last week this is huge!!! she's had them since she was born. The cbd oil helped bring them down to begin with from about 15 a day to 2-4 a day but now none... i don't want to jinx it but holy crap this is the one thing i prayed and prayed for to go away. Next is the stiffness... its not nearly as bad as it was but i want to be able to just cuddle her and relax with her with out having to force it lol. She relaxes after a little but it makes you not want to cuddle with a board basically. So as for now she's working on learning to sit on her own and balance learning to not be tense and use her hands all of which we have seen improvements on. Esp lately I've really started seeing improvements in her attitude as well as she knows how to make sure she gets picked up if she really wants to. she throws fits if she doesn't get her way and she will let you know when she's done doing something . these are all cognitive thoughts i might add! she shoved a toy in her mouth today and honestly i don't think it was on accident for a change. i gave her a empty eye liner box to hold on to and she moved her arm and kept a grip on it which again huge.

  Her therapy seems to be working and our encouragement hasn't gone unnoticed thankfully . sometimes i feel like I'm running around with my head cut off. going here going there doing this doing that staying up till all ends of the night. I'm so grateful for it tho. i really do love my life . i have moments do not get me wrong but to look back and see where we have came from? it makes everything so much more cherishable each and every single thing we have gone thru has been worth it to have her here. I don't pretend like her diagnosis doesn't suck because would i love for her to be crawling around getting in to things screaming in the middle of the store embarrassing me putting crap in her mouth she shouldn't be.. of course i would love for her to be smiling at me and laughing sitting up on her own grabbing on to enzo and hugging us back it seriously gives me butterflies to think of that life that seems so long ago that i imagined for ourselves. its very hard to acknowledge that that will never happen. it will never be how we want it but slowly but surely those images and dreams fade and new ones grow. I've learned to not look in to the future to avoid going thru these moments again because this grieving section of this life is beyond annoying its just drags and drags on. As bumper stickers and aa slogans go "one day at a time" .. but in all seriousness you have to learn to laugh at the crappy situations i know some probably think heartless at times.. its not that you just learn you can't be sensitive to the small things " don't sweat the small stuff" thats my bumper sticker.

Welp as usual i suck at blogging lol i hope i can look back on these and be like oh i remember that instead of what happened between July and September?? yea and don't ever expect me to have amazing punctuation or grammar I'm more of a what you see is what you get kinda girl as in yea I'm not going back thru and making it perfect lol i like to write as if I'm talking to you and so it comes off at times confusing but i feel like maybe its a bit easier to see the type of person i am a little better when i do things this way. I'm not perfect not even a little bit but i will always be honest and truthful and never fake, that was the deal from day one if I'm going to share our journey I'm gunna share the truth.

Welp I'm going to get back to orders myyyy favorite time of the night when everyones asleep i get to watch my show and drink a angry orchard while i package orders up. Ahhh peace and quiet <3

Bye guys!

oh life

Sunday, July 23, 2017

Yes I'm amazing at bloggingggg.. not..
Lol sorry guys I get so wrapped up in life I forget to slow down and write about it. Well lately Harlow has been stiff and cranky again we're praying it's just her teeth and that's her way of telling us cus I don't know what else it could be? It's super frustrating not being able to help her and the only thing that seems to work is leave her alone which sucks cus I want to hold her and be there for her but clearly she's little miss independent .. oh life when did you get so damn hard? Life has become so much more real to me now not that it wasn't real before but the " oh that won't happen to me" happened with my dad and my daughter so I'm so scared of something happening to me or bobby now for the most part we're some what healthy I mean could be worse but could be better who seriously follows the food pyramid these days? I have had a problem with my left shoulder for years now and it has been progressively getting worse to the point where it's all I can possibly think about because it's always hurting but I'm too scared to get surgery because I can't not be there for harlow n bobby ... also this is where knowing my family's history would come in handy but we've already been over that never gonna happen so I guess I'm officially a mom now worrying about everything seeing things different and seeing how everything can possibly hurt you so this is fun lol.. I love my life tho don't get me wrong I think of all the times before harlow was here and how easy things were but it will never compare to her being her and how much love we have for her it's worth every second sometimes it's funny when we go to dinner and are hooking her up to her tube and it's like wtf is going on how did we get here?! But I am greatful for all I've learned so far and it's only been 9 months I can't wait for what else I'm gunna learn I'm starting to really like the new me I catch my self wanting to help others so much more and being more kind to strangers I don't judge in my head like I used to (face it we all did it at one point) I'm able to think I wonder what's going on in that persons life instead of thinking oh gosh why are you being so dramatic don't get me wrong I still have my moments where I get annoyed by random stuff but I am still a girl I still get crazy once a month lol! My post partum seems to have jumped in to the back seat again thank god cus it rising shot gun was really annoying but if I've learned anything it's not over just yet whenever I think I've kicked it and I'm finally happy and content it rears its ugly face and says oh let's have some fun shall we? I hope it stays away but who knows I know I still have my down days and says where I can't stand this happening to Harlow but they don't come as often as they did before so I'm greatful for that... I think that's all for now talk to you guys later! ❤️

Just keep swimming

Monday, July 3, 2017

Ah so per usual I suck and writing blogs this is why I am not a blogger I would have been fired long ago if I did this for a living lol... but I seriously never get a moment to just sit and write anymore I used to love to go to barns and nobles and just write (I have attempted writing 3 books now) all of which I never finished can you believe it?! I can lol it's not that I don't finish what I start even tho that is exactly how it sounds it's just I get stuck or side tracked and it dosnt seem that important yada yada yada but this however is very important to me so I should be better at it butttttt I'm not lol as you have all learned by now I have a slight issue with always being in a rush I haven't figured out if that's me or the coffee at this point lol but I'm writing now so let's get started shall we?? Harlow had her first real real pool encounter today she's dipped her toes in before but today she went all the way passed her belly which is huge because one she hates water and two she hasn't been fully submerged since before her gtube! So it was really cool to do somthing normal for a change not tip toeing around the damn tube like always. So yea she hated it but towards the end I really noticed that she was starting to come arround to the idea but then started having some infant spazzums sooooo that could mean the water was to stimulating or it was just to much for her to comprehend at the time ether way I will not give up because one you can't not like the pool and two swimming is amazing for therapy of course if it continues I'll never force her to do somthing she's not comfortable with but we gotta give it a solid try. Other then that we have a good feeding routine going thank god no more wake up every two hours to start or stop the pump now we feed thru the day and let her tell us at night when she's hungry and trust me she lets us know if she is but so far so good about 5-6 hours a night of sleep and that is huge for all you mamas out there you know what I mean lol let's seeeee I really don't think I have anything else I mean I know I could give more details hut in all honesty I'm super tired lol night guys 🦄🖤

Worlds Worst Blogger At Your Service!

Monday, May 29, 2017

Yup its me the worst blogger ever! but like I've said before this is more or less a diary of harlow's journey.

So where did I leave off, Mostly you guys follow  me on social medias so you pretty much know what is going on but for those of you who don't let me catch you up!

The last time I wrote in here was the night before harlow surgery. It went great she's a little trooper the surgery was a success the acid reflux has been stopped in its tracks as far as I can tell she is no longer having any issues with it. She had a fundo done which is when the wrap the stomach around the esophagus so help keep everything down and where it belongs. The reason for the tube is because since nothing can come up thats including air. So in order to help her burp she needed it but also harlow has been having a really hard time putting on weight so for now she's on continues feeds thru the tube until she's able to gain weight on her own. This is due to her keto diet (see link below)


Long story short she can't have sugar... none what so ever so she's forced to gain weight in fat and carbs which is harder then you think. So that has been a huge pain in the ass for quite some time now and caused all this to happen in the first place changing her diet and formulas so many times really messed up her stomach and intestines. But the past Is the past nothing we can do about it now it just would have been nice if the Drs had paid more attention to it...

Our hospital stay lasted another week after her surgery and lets just say I don't miss it but I do I don't miss the hospital or all the scary stuff that goes with it but I do miss the constant help I'm not going to lie. Having her home now has been a huge readjustment. She having the tube makes everything 10x harder because she's constantly being feed thru the tube so I have to take it everywhere I go and I mean everywhere its not horrible its just harder to get ut the door quickly. Second its hard because you have to keep a eye on her and the pump of she's out of food it will just continue to pump air in to her belly and I can't out a whole lot of food her bag because it needs to stay somewhat cool. so as usual my balancing act continues...

Harlow refuses to eat out of a bottle now and wants nothing to do with her binki. For this mama it is very hard to accept because that was the first thing she learned how to do when the Drs said she wouldn't so its hard for me to let it go. She is teething however and some babies don't want to suck because it hurts. she also got thrush (link below)


So if its not one thing its another right?
Harlows Tube is healing good except its protruding out which means the skin on the inside is comping out of the hole its super gross and annoying hopefully it stops cos it is not fun to deal with.

She had her testing done with the therapist last week and she is still at a newborn level at 7 months old its hard to stomach that but at the same time the test doesn't take in to consideration her vision impairment. so the test is really inconclusive. Also everything that happened with her stomach caused a huge delay because she was doing great and at the level she should be at that a normal baby would be at so this is why I'm able to have the faith I do because I know she can do it its just going to take time.

The dr did however say she is having cognitive thoughts which is HUGE! that means she can think. literally ... He explains it as we all take the free way she takes sides streets and stops to smell the roses. she will get there it just will take a little extra time.

Well that is all for now sorry for all my spelling or punctuation mistakes I'm falling asleep lol told ya I wasn't perfect ... <3


This photo to everyone is just a entry way but to me it's the path I walked for 9 months every week sometimes twice a week it's the path I walked thinking when I was pregnant how crazy it will be to walk this path with a baby seeing other moms with strollers I walked this path to my first high risk drs appointment and that is when the path no longer was welcoming I started walking this path once a week in fear every time I walked it telling my self I need to breathe I need to stay calm take care of yourself for harlow. This path I swear got longer and longer every time I walked it at the end of this path is where I broke down after harlow was born when they told me all the horrible news about her my legs still numb from the epidural, this path will forever haunt me it gives me chills just walking it having to go get harlow meds because her normal pharmacy is closed running this quick simple errand has so much more attached to it I hate everything about this hospital except her nurse that believed in her and her high risk dr who got me thru it other then that if I never saw this place again I would be grateful this place is my own personal hell...

trip down memory lane

Wednesday, April 26, 2017

Well this is the last night of normalcy my baby officially will have surgery tomorrow ... I look back on pictures of when it was just me and bobby and then when we got Zoe and I remember thinking we're never going to get pregnant and that wasn't fair how come we don't get to get a baby when so many people could care less and then The day came that I was pregnant and I thought to myself I cannot believe this is actually happening I cannot believe that I'm actually pregnant I remember running around the house and zoe chased me saying oh my god, oh my god, oh my god, oh my god, oh my God.. over and over and over again because I couldn't believe that it was actually real and I thought to myself my dream actually came true to be a mom that's all I've ever wanted was to be a mom to have someone to take care of to have someone to look up to me and confide in me and argue with me someone who is a mini me and mini  of my husband A carbon copy of me and him put together into one .. for years I never thought I would ever find someone I would actually Marry let alone have a kid with and then the two things that I never thought would happen happened I was the luckiest girl alive at that moment in time I even think back to the first couple weeks of being pregnant and thinking how the heck do you women do this I was so sick every inch of my body ached but I didn't care because it was worth it it was worth every single second every vomit every headache every ache and pain it was worth it and then 15 weeks came and we found out that we are having a little girl and I could imagine it her first boyfriend learning how to drive to the day she got married the day she told me that she was going to have a baby and that I got to be a grandma I saw it all flash before my eyes and it felt so warm and comforting and then 17 weeks came and I made an appointment to have our 20 week check up where they scanned everything and double checked everything to make sure everything was OK I remember walking into the doctors office Bobby had gotten off work early we went into the room where the ultrasound tech was I lay down and from that moment on I knew my life would never be the same I had never gotten that feeling before that moment there was something in the air it just didn't feel right it wasnt a happy moment anymore it was a moment of pure terror it was a moment that I never want to remember and I just hoped and prayed that it was my head playing tricks on me I had finally gotten all my dreams it was too easy after all this time and trying to get pregnant things were going far to smoothly the ultra sound tech began scanning everything I stared at her face waiting for her to break her poker face and she didn't the whole time she talked to me about when she gave birth to her kids never once batting an eye but still I could feel something wasn't right I remember Harlow running around my belly kicking me like crazy I kept telling myself how could a baby have something wrong with it be so active I just kept telling myself you're overreacting you're being dramatic everything is OK even ultrasound tech isn't thinking anything was wrong she would tell you even though she's not allowed to tell you I felt like she would have at least made a face she said she would be right back and she stepped out for a second I remember still having the jelly on my belly thinking is it over did we get to go home ? She came back in and that's when I knew something wasn't right her face I changed and she was far more quiet now I asked her questions about her kids and she gave me one word answers I stopped asking I just laid there I could feel my heart pounding in my chest thinking to myself something isn't right I looked over at Bobby he was sitting on his phone as usual he looked fine so It had to been just me something in the air it was just me I kept telling myself over and over again everything is fine she's fine you're doing everything right she told us that we could go and no news is good news so if we don't hear from them in three days just continue on there's something about how she said it I just knew then the days past we got through day one then day to then day three just when I thought I was in the clear my phone rang and it was the phone call from actual hell telling me something was wrong but they found something on the scan but they couldn't tell me much more and that they have an opening in five days to come in and get rescanned five days I had to wait to find out what was going on five days I spent bawling my eyes out five days thinking about all the things that I had hoped and prayed for and wondering which of them I was going to be able to do if any at all it just so happened that my birthday was the day before our appointment I'll never forget that birthday because it was the worst birthday I've ever had just dreading the next day it was the slowest birthday I have ever had as well I spent it with my two best friends I remember I was so angry at Bobby because I had thought that he didn't plan anything for my birthday but he had actually surprised me with a surprise dinner if you know my husband you know that that is extremely rare surprises he hates them I remember going home that night laying in bed thinking to myself what am I going to do tomorrow when they tell me the worst possible thing how am i going to handle it I've had anxiety and depression my whole life so in this moment I have to get it together not for me not for Bobby But for Harlow I woke up the next morning if you can even say that I woke up because I don't think I even went to sleep I got dressed I remember exactly what I was wearing that day black pants and a burnt orange top I remember putting my shirt on and holding my belly thinking I got you no matter what I've got you we are arrived at the hospital where they take us into a special room and I remember the lady she was a geneticist she tried explaining to Us what was going on but I didn't hear a word she was saying I remember asking her if she could repeat herself because I was so confused as to what she was saying she did politely I remember the words there is an issue with your daughters brain I shook my head thinking to myself of course the one thing that you can't fix the one thing that you can't understand and The one thing that runs your entire body I felt cold I remember that which was odd because when you're pregnant you're really hot all the time at least for me I was I think it was my blood I think it was ice cold. Everything that I ever dreamed came crashing down on top of me no prom no first boyfriend no learning how to drive a car no getting married no grandkids none of it how is it the one thing that I wanted in my entire life was sitting right in front of me but there wasn't a damn thing I can do to fix it we sat in her office for about an hour talking about all the different options talking about all the different things that could happen talking about what kind of quality of life she would have talking about all the different issues that she will encounter that she'll probably never be able to walk talk eat on her own and so on she asked us three different separate times if we want to abort me and Bobby said no before she could even get the words out finally it was time to see the doctor we got into the room and I knew right then and there that they didn't need to rescan us they Already knew what was going on they wanted to do an amniocentesis to try and narrow down what exactly was going on originally she was only supposed to have hydrocephalus God what I wouldn't give for just some Hydro but at the time it was very scary and that's not saying that hydrocephalus is not a serious condition because it is it was time to do the amnio they brought out the biggest need I think I've ever seen in my entire life I remember them saying that because I had tattoos I'll be just fine not exactly tattoos don't have 12 inch needles that go through your belly into your baby sack to fill tubes of her fluid. I turned to my left I grabbed Bobby's hands for dear life I closed my eyes and I prayed for the first time in a while I prayed it wasn't to make the pain stop it wasn't to make this nightmare end it was to make my baby Ok to take care of her almost done almost done almost done I heard that for about what seemed like 10 minutes it was realistically about four minutes but four minutes too long finally they were done I was covered in iodine they said that I could get cleaned up they all left the room I looked at Bobby and I lost it I don't think I've ever cried that hard before I had been holding it all in for so long been told something is wrong with my baby having to wait five days going through the appointment being told that she's basically going to be a vegetable getting this huge needle stuck in me I cried into Bobbys chest till the nurse came in and said that they needed the room I hopped off the bed grab my stuff and ran out the door they stopped me telling me that they needed blood at that point I couldn't walk anymore I couldn't move anymore you guys can have whatever you want I remember thinking they brought me a wheelchair and Bobby wheeled me downstairs to get blood work done then we went outside so that I can relax and breathe I remember thinking this day is such a horrible day and now we have to wait for test results that would probably take about three weeks three weeks I will be 24 weeks when I find out what's wrong with our baby not that it was an option but just in case you guys wanted to know 24 weeks is the cut off for abortion it wouldn't be just a simple procedure but it would still be considered an abortion that means that if I were to consider it I would have no time at all to make a decision The test results all came back negative so this meant that there was a large possibility that the hydrocephalus could clear up on its own that there was no infection no cyst no tumor so Harlow had a fighting chance of being OK there was a light at the end of the tunnel but the damage is already done my pregnancy was destroyed my anxiety was a dark cloud that followed me everywhere I went I couldn't leave the house I couldn't talk to anybody I was all alone.. what happened to my dream and why did it get so bad so quick I had to do was take care of this little girl and I can't even manage that it got real dark for me so 25 weeks came and went than 30 at that point I was going in probably three times a week to the doctors to get monitored the fluid hadn't Grown this was huge this meant that there was a large possibility that the fluid could drain on it's own after she was born I actually saw the light at the end of the tunnel for a change I can't wait to meet her after hearing the news that I may still have a chance at a normal baby 40 weeks came and went she did not want to come out after the fifth day I had a check up with my doctor and they wanted to induce me because her fluid was low I remember I was so scared to give birth I was beyond petrified there was nothing anyone can say to me that was going to make me feel better I don't know if I was scared of the actual birth or what came after either way I had 56 long hours to think about it I didn't get the epidural until my 50th hour I wanted to know what it felt like because I had a feeling that I never was going to be able to feel it again I had a feeling that this was going to be my only birth, my only pregnancy I had already been robbed of all the joy the least I could do is remember this it was finally time to push it was finally time to meet our little girl, I was finally time to know the truth I pushed three times and she was out I remember looking at her thinking gosh why do people think babies are adorable when they come out don't get me wrong she's my daughter and I think she's beautiful but not covered in blood slime and God only knows what else I remember telling the nurses that I wanted her after they cleaned her up that it really didn't matter because the second she came out that's when everything went downhill and fast she wasn't breathing she didn't breath for 46 seconds do you know how long 46 seconds you would think quick right?  Nope it felt like a damn lifetime once they finally got her to breathe I felt like I could breathe they said they had to rush her to the Nicu I asked if I could at least see her before they took her they brought her over next to my bed and I remember seeing her blowing bubbles that was what I got out of that moment was her chubby little face blowing bubbles and then they took her and that was it. I wasn't allowed to go see her until the epidural wore off so I could pee well that wasn't happening very quickly so they gave me the option that I could get on some weird contraption things pee and they could wheel me in there on a wheelchair I agreed of course. Bobby wheeled me down to the Nicu we went through the doors where we got stopped by a doctor his face is forever burned into my memory and it's one that I don't want... He took us in to the office and proceeded to tell us all the things that were wrong with her how she's having seizures how she has some extremely rare genetic disorder how she will never learn to do anything she will have no quality-of-life "she will stop mentally developing at 3 months and die at 10 years I'm sorry" I remember he then handed Bobby a piece of paper that he printed off the Internet explaining in detail what she had and I just remember staring at him thinking you're such a son of a bitch what possessed you to take this moment for me why did you do this to me you  couldn't have waited until I at least got to see my daughter for basically the first time to drop this giant shit bomb on top of me no you had to stop me at the door you had to tell me everything and now I'm supposed to be sent on my merry little way yeah I didn't say a single word Bobby wheeled me out of there take me to go see our daughter who is in a glass box and she looked so peaceful still blowing bubbles I asked if I could hold her and they said that I had to wait a little bit because she had seizures I asked Bobby if he would take me out of the Nicu  for a moment he did I told him to get me the fuck out of the hospital The epidural hadn't even worn off yet he took me outside where he sat with me while I cried my eyes out my little girl, my dream, was sick and there wasn't a damn thing I can do about it... To be continued....

I don't understand any of this

How the hell am I still doing this? Last night I laid in what they call a bed in the hospital listening to my daughters breathing thinking this could be worse some parents beg to hear breathing and can't sleep because they are so scared it will stop in their kid.. but then I realized I'm comparing again I compare my life to others who don't have kids with issues and think how jealous I am I compare my life to people who have it so easy and have no idea how hard things could be I compare my life with  to those who have it harder then me telling my self pull it together it could be worse but now I wounder does anyone compare their lives to me? Wishing they had mine? I wouldn't change getting harlow for the world I'd do anything for her but looking back thinking everything was going to work it's self out and everything is going to be ok when I was pregnant and now I'm here in the middle of my own personal hell telling my self it's gunna be ok ... soooo when is it gunna be ok? That's the real question... I've been fighting for almost one year now and we had one simple decision keep going or start over I don't believe in abortions simply because your kid is not perfect to each their own but I remember sitting in a doctors office and they asked us do you want to abort I said the only way I will abort this child is if she will have no quality-of-life and they said that they can't promise me that mind you this is just when we thought she had hydrocephalus do I regret my decision ? Hell no Harlow has taught me more about life in six months than I could've ever learned on my own.. do I regret going through this? no because one day I look back and think I'm stronger because of it but there is a part of me that wonders what if one thing was different what if I didn't have to go through this what if Harlow didn't have to go through this what if I was able to hold my baby like a normal child what if I was able to get a smile or laugh what if I was able to have a normal newborn? that was robbed from me I feel like I've been stripped of all my normal I don't even know what's up anymore or down I don't feel comfortable anywhere anymore it's very frustrating I hate change and yet I'm in the middle of nothing but it I am so exhausted The only thing that keeps me going is knowing that she will not remember any of this that this will just be a story I tell her one day that this will be a moment in her life that she can be proud of even though she doesn't remember it every parent tells her kids stories about when they were babies and you don't remember it so that's what gets me through this The pain and torture that she's going through the only people that are going to remember it is us and even though we feel it emotionally we don't have to feel it in our bones like she does .. tomorrow is her surgery and I wish time would stand so instead I feel like the days are fast forwarding getting closer and closer to the moment that she has to go under scares the shit out of me in all honesty I know other parents have felt this feeling before what if she doesn't make it out of the surgery .. what if this doesn't help what if there's problems what if there's an infection .. what if it makes things worse .. what if she rips out her G-tube what if something goes wrong .. all the what if's you can play the what if game as long as you want if I've learned anything in my life the what if game doesn't really work that well I played it when my dad died I played it when one of my best friends got murdered I played it over and over again when things didn't go my way The truth is everything can be different it only takes one single thing to change for your path to change couple years ago I went to a friends house and there was a psychic there I thought why not there's no way that these people are real they're just really good at reading people well this chick was really good at reading people I guess because there's things that there is no possible way she could've known mind you I wasn't as religious as I am now so I would never do it again knowing your future isn't for you to know some of the things that she said played out as if she wrote it herself others she had given me a heads up on things that I need to change to avoid certain things and I did but I wonder if this was a curse now changing my life because I think it's going to be better because of something I think might happen  I May have just set the ball rolling for something else to happen .. Harlow isn't something anyone could've ever predicted it was one thing that changed in her it's nothing I did nothing Bobbys Did it's something her body did so when I say that this is her journey and this is her story this is 100% Harlows to own it that's fate there is absolutely nothing that we could have done different to change Harlow's path other than abort her so that's why I'm not angry that she has these things going on with her I am however angry of the side effects that come with it Harlow is going to be such a unique person I'm excited to see who she becomes but I am so tired of her being in pain it's not fair I've been nothing but excepting and understanding and supportive through all of this I just don't understand why she doesn't get a fair fight I hope one day that I'll be able to understand this because right now I don't...


Tuesday, April 18, 2017

Hey guys

So the last couple of days have been pretty hard. I'm not gunna lie. Between Harlows stomach and her spazzums it's been hard on her which means it's hard on us . Like I've said before comparing is the worst thing I can do but some times it's been hard not to harlow is going to be 6 months on the 22nd and it's extremely cLear that she is behind and not by a little.. I thought things would at least progress slowly but they arnt progressing much at all her stomach isn't helping matters at all . There is so many emotions I get when I really think about things it's like going down this rabbit hole I know I shouldn't but sometimes it's hard not to. When the drs told me she would stop developing mentally at 3 months I basically told them they are wrong but unfortunately they are leaning to right in this case it scares the living shit out of me  that she won't progress I know it's all going to take time and she could surprise us all and it's what I hope and pray for but sometimes I have to be realistic in things because it's life and it could not happen and if that's the case I need to be ready for that too. I wonder often why me I tell my self god gave me her for a reason she picked me for a reason but sometimes I wonder ok if there isn't a god and there isn't a higher power and this is it then how is this fair? How is it we struggle by in life while others have it so easy why did we get a baby with problems while others could careless get their kids are fine it's hard not to think that way sometimes it's human nature to wonder why trying not to beat my self up over it is hard to because no body wants this life I don't care what anyone says no one wants to see their child struggle but there is people out there like us who will do what ever it takes most people seem to have this mentality which is nice to see I just hope I'll be able to adopt and get to experience both sides of being a parent to harlow and to a child who isn't going to have to struggle I know this sounds sorta mean but it is what it is there's no beating around the bush :/ not ever being able to be pregnant again I'm having a really hard time with because again it's something that was taken from me and I had no choice in the matter .. but at the end of every day would I change anything would I abort her would I start over would I put her up for adoption .. no is it because I don't want to feel guilty? No it's because I still have faith in all of this I have my doubts as everyone dose but I have faith that this will all make sense to me one day..

the new stuff

Friday, April 14, 2017

Alright guys update time!

So we got her off the formula again and she's back on almond Milne which is great but in order for it to work I have to add things to make up for the loss nutrition that's fine by me but did you know here is no such thing and a nut protine additives? Which is what she needs .. so instead she gets baby food meats did you also know that in each little jar is only 8 grams which means she needs to eat 4 a day to get the intake she needs that's in a normal formula? Fun right that's not even going in to her carbs she needs this keto diet is sucking the life out of me 😩 But whatever she needs...

I went to my therapy appointment the other day I go every two weeks and I'm the least bit ashamed let me break it down for you.. I have a problem so why wouldn't I want to fix it? I've struggled with depression and anxiety the majority of my life and I know a lot of girls say that and I'm not saying they are luring I just feel everyone has their own threshold I hit mine clearly lol there has been some talk about possibilities of sending me to a meditation rehab to try and get me back on track and able to be more helpful for harlow cus I'm still unable to actually face her diagnosis as well as talk to any one with a child that is disabled it's just to hard for me right now I get super freaked out and panic so no social media for me or google for that matter it's very annoying because I know talking to other moms would help me but noooo my brain has other plans I guess .. all in good time but anyways I went and explained to her I have been feeling very anti social lately and it's been really hard to get thru my day to day life I feel horrible not answering peoples texts or messages sometimes and I don't know why I just can't do it she thinks it's like I get all my harlow talk out once a day and then I'm tapped out so I mean I get it because after a while it's very hard to talk about the bad stuff over and over esp when I can't fix it so that's my next step in facing my own fears to try and push thru and start opening up to the idea of talking to people instead of avoiding things..

As for harlow her stomach is doing better but we're backed up again from the new formula which I knew would happen so gotta get thru that but I've noticed she's been having more seziures lately I think her body is readjusting and so many things are happining all at once and it's just to much for her so please pray we get that back under control down to 3 a day again or nothing at all!! Okay I'm falling asleep night guys!! Xoxo


Saturday, April 8, 2017

Hey guysss

Harlow seems to be doing so much better she still gets fussy but normal fussy not extreme pain fussy so we are so grateful for that because we're on the right track but now we have to try a new formula in the keto family in hopes that it works if not then back to the drawing board... now that I have my baby back again I also have to start over it's another new harlow and another new realization that she isn't a normal baby that she does have somthing wrong with her that's far more then just stomach issues . It's really hard for me because I feel like I hide behind each issue to avoid the giant one starring me in the face I know what is wrong I can't fix it so I find other things to focus on but now that she's much calmer it's really hard because she just sits and chills which is great and all when I'm trying to do laundry but not so much when I realize playing with her isn't a option right now. Getting a response from harlow isn't somthing that comes easy between her eye sight and her brain issues she doesn't have a lot of wiggle room in that department God what I would give for a smile mamas out there pleaseeeee take in your baby's smiles and laughs godddd I'm so jealous I know one day she will but it's hard to wait patiently it's really hard to see other baby's for me my depression has never gone away I just shoved it to the back corner of my brain because I have no time to face it I don't have time for break downs and sadness I have days full of drs appointments and therapy I have stress up to my eye balls and the last thing I have time for is myself I know they say it's healthy but let's face it at this point I'm far from healthy I used to think being skinny was somthing to work for now I notice everyday I loose a little more of myself mind and body . It's like the saying fight, flight or freeze in my case there is no option for flight and fighting came right away I feel like now I'm just frozen in time trying to figure out where to go from here I can't look in to the future because I don't know what that is for us I can't change where I'm at now because this is where we have to stay so I'm stuck unable to fix my daughter unable to fix myself. Putting a brave face on after a while starts to feel like a normal routine which is sad I'm not fake at all I just have never been one to fall apart it's so much harder to pick yourself back up again once you fall apart so I just keep going keep fighting keep pushing forward keep staying positive and so on but lately I have been feeling so beaten and bruised I'm waiting for a miracle that I'm worried will never come that I've already had all my miracles for one lifetime it's just not fair it's so hard to be happy for my friends and their children it kills me because the old me would have been over the moon for each and everyone of them but now it's hard to see them and know harlow will never be like their kids and I know what your thinking "you don't know that" ah but I do wanna know how? Because right now when harlow should be doing somthing she's not and others are that's it yes maybe later she might but right now in the moment she's not and that's that it's somthing I have to accept it's a hard pill to swallow but one way or another it's gotta go down. Sorry for the depressing post but like I've always said I will be truthful as much as I can thank you guys for just being there for me and harlow and bobby in this journey till next time xoxo

Little by little we will get to our new normal

Sunday, April 2, 2017

Hey guys !

So harlow is on her new formula and so far so good she still has her fussy moments but it's not a all day all nights deal as of right now thank god so hopefully that keeps up and soon will be all better and she won't need surgery as for us we decided to take the plunge and get a apartment last year we were planing to buy a house and saved and saved but when we found out I can't go back to work that plan got epically thrown out the window but we knew we still needed to start a new chapter and be on our own in order to heal and move forward so we got a one bed room cus it's what we can afford yet another thing that has been robbed from us but we make the best of every situation so harlow still has her room at my moms and all her cute decorations bobby has about a foot of closet space between me and harlow lol the sacrifices you have to make 😂 but we will make it work my amazing husband made me a little work area instead of having a kitchen table  but again we make things work and we both will work hard to continue to better Harlows life ..  going with the flow has never been something easy for ether of us so it's been a rude awakening but I kinda like it I never realized how much I attempted to control my life when let's face it we don't ever really have control lol if you know me personally you know I loath change I have a very hard time facing it so this move was extremely hard on me besides leaving my mom ever since my dad died I worry about my mom as if she hasn't made it this far in life already lol well that's where we are at starting a new chapter and closing the last one to never EVER be opened again which yes that means I've had to accept I'll never be pregnant again unless by the luck of god they figure out what happened to harlow which let's face it they won't it's like finding a needle in a haystack lol but I'm ok with that because I know we will adopt and moving forward is the next step so as for now we're happy we have our moments still but things are starting to look up and now that I have said that I need to knock on wood lol thanks for all your continued prayers and support ❤️

Just keep getting beat down

Sunday, March 26, 2017

I know in the passed I've talked about my "ah ha" moment and no it hasn't happened yet trust me I'll be singing from the top of the mountains when I do but lately I have been so scared of life I mean when things happen to you when life gets real it gets scary when I lost my dad I thought there is nothing comparable to this the feeling of loss, the heart ach, the pain, the never ending hurt.. if you haven't lost a loved one let alone a parent I hope you don't have any idea what I'm talking about because it's a sicking feeling truly.. but I've said it before, I went thru it to make my self stronger for something bigger .. well here it is.. Harlow.. you know when you say something over and over and it has no meaning anymore? I'm fine has become that for me but I do mean it I'm fine because there's nothing I can do in my life right now as it is, there is nothing I can change, nothing I can fix, nothing I can move, nothing.. so when I say I'm fine yea I mean it but that's also because I have no tears left in me it's true I'm all out! there is moments when I know I should be on the floor balling but yet I'm still standing still wondering how the hell am I still standing? I wish I could say it was to show Harlow what strength is but she doesn't need to learn that from me I learn that from her .. I just want peace .. simple.. I want peace I want happiness I mean doesn't everyone? I don't care that Harlow has lis.. I did..I was pretty pissed off and at times it's like a nagging feeling that doesn't wanna go away but I don't believe that's going to stop her cus I have faith in her so whatever call it what you want she's gunna show me what she can do the end. I'll give her every tool she needs .. but what I'm upset about lately is the bullshit in between the heartache we go thru with her and her "diagnosis" the acid reflux the "backed up" issue, the seizures all the things that will not go away so that she has a fair chance.. to me when I was pregnant people asked what it's like I would say "put your kid in a glass box .. now see them in pain.. now pull up a chair and watch.." that's the truth when you feel so helpless what do you do? Pray? Yes but what do you do... nothing there is nothing you can do and that is why I am upset now days.. she's already got the odds stacked against her so how is this fair? The other night she was crying at 2 am which led to 3 then 4 then 5 just non stop and she would look up at me with this boo boo face like "mom please make it stop" do you have any idea what kind of gut wrenching feeling that is ? There is NO comparison ... I pulled her in close and began to pray and half way thru I stopped and paused and said ... " where the hell are you" I leaned back in the chair and continued to rock her and let her cry because there was nothing more I could do... this is what it's like to have ur faith punched and kicked and beat to hell .. this morning at 3 am I was rocking Harlow in the chair in her room and bobby was sitting with me while she cried and we both exhausted and beaten down by this entire situation I told him .. " you know how many times I've prayed in this chair?" He goes " I'm guessing every night and day" I said " all but today..." he knew I was angry he knew I have had enough they say god only gives you what you can handle which I don't really know how that's measured I mean you get thru it because you have to you don't have a choice so it's not only what you can handle it's more what you can live thru.. I dunno lately I've been so scared to live so scared to make changes or decisions because nothing seems to work right anymore I won't ever give up but man am I tired of being beat to the ground...

had enough

Sunday, March 19, 2017

Being back at the hospital that not only did I go to my entire high risk pregnancy its where I got all the bad news its where I got induced, its where I had her, its where the Drs told me she was going to die, where they told me she was going to be a vegetable, where they told me she was going to get a Gtube because she will never eat on her own, where they told me she was never going to progress passed 3 months mentally and physically the list could go on ... They say smell is the biggest memory trigger and let me tell you DAMN RIGHT IT IS... Walking these halls and smelling the hand soap, Seeing the different parts of this place I always had to go just all of it brings me back to the hardest year of my life. Reminding me of everything walking passed all 6 different spots that I dropped to the floor crying after I got out of the Drs offices because I couldn't be strong anymore, out side where bobby took me in the wheel chair 3 hours after I had her to hyperventilate and cry the epidural hadn't even worn off yet. Each and every thing about this hospital I hate its like a bad omen for me at this point I get it there is some good things I mean I had her here this is where I met the amazing nurse who got harlow to eat this is where I met the dr to coached me thru my entire high risk who sat and prayed with me everytime I saw him who told me he agreed I shouldn't abort her he was the first and ONLY person who had my back on that. Unfortunately those don't trump the bad times I've had here so I will always hate this place.

We had to take harlow to the er tonight because I knew in my gut that something wasn't right we fixed the acid reflux we fixed the backed up issue ( or so we thought) we fixed all the problems we knew to fix and she just is continuing to get worse and more fussy and in more pain and causing her seizures to not stop because she's so upset. She drenches herself in sweat because she gets so upset. We cant put her in her car seat because we cant even bend her do you have any idea how hard it is to hold a baby like this besides knowing she's in so much pain go to Home Depot buy a piece of wood and hold it like a baby and there you go. It is BEYOND frustration not being able to fix this for her so I finally decided I've had enough and were taking her in and if I have to chain my self to a bed to get answers you bet your ass I will. Thankfully someone finally believed me and said they will take a look which then led to a x ray which then led to a ultra sound which is where we are at now waiting to see what they found part of me hopes they find something so we are able to fix this and it not be one more damn unknown thing in harlows life she's had enough "we don't knows" so thats where were at now sitting and waiting like always my patience has grown like you wouldn't believe but that still doesn't mean I'm a saint I have such bad anxiety sitting and waiting its frustrating not being able to know whats going on I just hope they tell us something soon....

Ill try y best to update on here if I cant <3

I know I know I suck at blogging

Thursday, March 16, 2017

Okkkkkkk so I suck at this I've just been so busy lately but I'll try and update tonight
Starting with Harlows acid reflux has finally calmed down man was that the longest 3 weeks of my life and I thought labor was long lol she's finally starting to come back to her cute little BENDABLE self 🙌🏼 you have no idea how hard it is to cuddle a baby that you can't bend but in all seriousness in my situation I have had to become extremely desensitized to the majority of the things that happen with Harlow and even tho it's so had cus I can't have the emotions I should i have no choice anymore I have to protect my brain and heart in order to keep sain for the nugget it's a rollercoaster some things effect me more then others so it's strange cus the things I think will hurt me don't and the things I think should be a cake walk have me in tears ie yi yi what happened to my life?! I don't mean that negatively but I don't even recognize myself anymore or any portion of who I used to be I mean I guess that's a good thing because if I was who I was before all of this there is no way I would still be here standing I would probably be in a padded room by now ... welll what else OH she got approved for another physical therapist so now she has 2 for her eyes two for her brain and 2 for her physical body it's safe to say she's pretty popular not gunna lie lol but how awesome is that now my weeks will be completely full but like I said before I'll do whatever it takes thank god I can put her in a car seat again cus for a lil there I am surprised I could even go in the car with her to her drs appointments with out actually ripping out my hair lol next we have to choose if we want to do another MRI soon they basically think everything will look the same but part of me wants to see if her brain has grown if so what has and so on but they would have to put her under in order to do it so I'm not ok with that meh decisions decisions being a parent of a special child is like a lot of decisions that's for sure I'm sure all parenting is but you get what I mean as for me and bobby we have been butting heads lately but I think a lot of it is letting off steam because of her constant crying and fussyness our lack of sleep and all that finally took a toll lol but we're back on track now that she is now all we need from her isssss TO POOP! Ugh I've never wanted poop so bad in my life lol I hope it happens soon cus she's finally feeling better I don't want it to go down hill again okay I think that's all for now I'm falling asleep as I write this lol night guys ❤️

Ugh tomorrow

Tuesday, February 28, 2017

Well I'm laying here in bed with enzo by my feet snoring and Harlow is some ridiculous position that is beyond me how it is comfortable becaus that seems to be the only thing that works anymore she's been changed three times due to spit up and not formula spit up acid spit up u can smell how sour it is... bobbys out of town so it's just us for the first time and I wish he was here her Appointment with the GI specialist is in the morning and I'm so nervous I'm not sure why tho I'm hopeful that I'll have my baby back again not the wooden board I've been carrying around cus she refuses to bend under any circumstances so litterly imagine holding a wood pallet that's what it's like to hold harlow but while she's wiggling trying to get comfy which is impossible and all the whole crying.. non stop crying.. I've felt helpless for my daughter since day one and it's as if it's a cruel joke being played on me at this point of how much more can we make this girl feel helpless I've had to desensitized my self to extremely that I know there's things that should absolutely floor me but I've grown so cold and paralyzed to a lot of it it bothers me a lot but I think it's also my brains way of protecting it's self I still feel sick to my stomach when she has her seizures but she's so fussy and in pain because of her stomach now days it's just a constant can't put her down can't put her in a swing can't put her in her car seat can't put her over your shoulder the list goes on and she was sleeping thru the night now she's waking up every 1 1/2 hour cus she's hungry cus she spit up half her last bottle so we then start the process all over again to just do it all over again this isn't me bitching tho truthfully it's not it's just frustrating not being able to help her and running off coffee trying to stay awake take her to her dr appointments and her therapy in orange every other day sitting in traffic listing to her scream cus she hates the car seat so much so I've started to come to terms with the possibility of a gtube I partially welcome it because this is no life to live this was EXACTLY what I didn't want her to go thru pain every day all day I can handle it I'm not that girl that will break down and if I do odds are you won't see it but I have had about enough of her being in pain it's not fair to her and I'll be damned if they send me home with no answers or solution tomorrow so if I get arrested for getting in to a fight with a dr tomorrow because he tells me they can't do anything someone please bail me out lol I hate being so cold now harlow dosnt smile or laugh or any of that yet cus she hasn't had the chance to cus of all this and it drives me nuts so much so it's hard for me to even look at my friends kids I already avoid social media I go on post updates and get off I rarely look at any thing so if you message me I'm so sorry if I don't get back right away I swear I'm not ignoring you it's just hard to be on there lately ... I still am unable to look at anything online about Harlows condition and I can't look at other baby's or kids with her condition I just haven't gotten there yet which sucks cus I feel like it would help me so much if I could just get over this hill I'm on but with time I got nothing but it! Well please pray for harlow tomorrow and I'm gunna be selfish please pray for me tomorrow I really need some strength I'm running pretty low lately ❤️

Well this sucks

Wednesday, February 22, 2017

So today sucked she had an appointment with her pediatrician and we're trying to figure out what it is that's going on with her stomach since every medicine hasn't worked all the formulas are not working either and so she has an appointment with a G.I. specialist next week so that he can see how she is digesting her formula and hopefully go from there she did say though that she may need a G-tube because what could be happening as her brain is not letting her digestive system know what to do so that's why she's having a hard time and if she does need one I'm going to be absolutely devastated because I thought we were in the clear after we left the Nicu Friday we have an appointment with the nutritionist in LA to go over this certain diet that she's gonna get put on and her pediatrician said that that can fix her acid reflex if that's the problem so I'm praying to God that that is all it is and that this formula is going to stop her seizures and her acid reflex I will literally consider that a miracle because I am petrified of her getting worse so that's what happened today at her appointment I finally broke down it's been a while I think I'm just so exhausted on putting the smile on my face and pretending everything is OK yes I'm grateful for her and yes things could be so much worse but this is also new to me and not being able to help your kid is absolutely horrible on the plus side if she does end up getting the G-tube and it does fix this this may be why she's unable to develop and learn for some things because she's constantly in pain and stuff so there's a Silverlining in there I don't know it's all hard it all sucks and I wish things were easier for us.  Tomorrow's a new day

Sorry I lagged!

Monday, February 20, 2017

 OK I'm finally going to do a blog post so sorry for my lagging it's been a busy couple weeks but to update everybody her eye exam it was pretty pointless didn't tell me anything new they said that we're going to have to wait with time to see what she can see and in six months they will reevaluate and see if glasses may help what she already has so whatever but she did have an appointment with the braille Institute they came by so they'll be working with her once a month as well as some other blind company that gives us free services so she has therapy every week she has occupational therapy through Kaiser once a month and two vision appointments every month so we're trying to get her all the opportunities we can as for her acid reflex we switched her formula and it seems to be helping but our newest battle is she hates car rides which wouldn't be so bad if she was just simply crying this girl gets her self so worked up she causes a seizure and drenches herself in sweat and the rest of the day is ruined. She also makes herself throw up because of how upset she is so I can't take her anywhere like seriously are you kidding me thank God I have my mom so I'm able to pop out really quick to get supplies if I need but I hate doing that because I should be able to bring her with me you know? So that's our newest battle trying to deal with that I wish I could say it was a car seat but she has more than enough room it's just her something about the car just does not make her happy let's see this Friday she has an appointment in LA pray for me because that car ride is going to be a nightmare but we meet with the drs to discuss putting her on a special formula to help with the seizures it's a slow process to work it takes about 6 months and I can only imagine the price of this stuff but like I said before if I have to take a loan out for it I will whatever works for her that's what matters  so please pray that it works! I can't even imagine being seizure free omg that would be amazing!!! My best friend and I had baby's a month apart and she came by today today was the first day I realize that my daughter isnt a normal baby I mean I've known it and I've heard it but today I really saw the difference he's a month behind her and he's doing things that she can't do or isn't doing and even though I knew this was gonna happen I guess I just was living in this fantasy world where my daughter was just going to keep up and it was gonna be a miracle but the realistic side of me knew this was gonna happen I just hope that it's a little bit not big chunks that she falls behind right now it's just the laughing smiling being involved acknowledging me and Bobby when we're talking to her I think a lot of it has to do with her vision not so much her brain but it's OK we've been preparing for this and luckily it's not all one big hit at once like it was when I gave birth to her it'll be slow things hopefully it stays that way at least I really don't feel like getting hit by a train again but at the same time it's kind of cool because I get to see what Harlow needs to learn next and what we need to work on but as for developmentally she's hanging in there so I think that's everything I want to say a special thank you to everybody who is supporting my Etsy shop I know I've said it before but you guys really have no idea how amazing it is and how helpful it is I'm able to pay for her medical expenses and that way we don't fall behind on bills so that is a huge stress relief as well as it's giving me something to keep me busy which is something I definitely need so thank you guys again from the bottom of my heart ❤️

Time flys..

Wednesday, February 8, 2017

As I lay here with Harlow sleeping on my chest listening her breathing I can't even begin to explain the feeling I get when I think about the past year coming up on February 13th that was the day I found out I was pregnant I can vividly picture that day I know exactly how I felt I can even remember down to the smells of the candles I had burning in the house I remember looking at those two little lines on the test in absolute complete shock we had been trying for close to 4 years and we were at the point in our marriage where it was wearing heavy on us we wanted a family but couldn't and then there it was two pink lines I had prayed and begged and cried for those two pink lines and then just like that they were there... it's a bitter sweet feeling because until June 3rd my pregnancy wasn't exactly a cake walk but I appreciated every bit of it I did my best not to complain I did my best not to get upset when i would get sick i  had 20 weeks of normalcy 20 weeks of being able to be pregnant and have a life 20 weeks where nothing was wrong ... I got the call on the 3rd of June that something was wrong and they didn't have a opening for us to come in until June 8th longest week of my life and my birthday is the 7th so you can imagine what kind of week that was... we went in and right from the get go we knew something wasn't right and it wasn't just a blurb on the scans they took us to a room where we sat and waited I also remember what I was wearing that day I remember the smell of the hospital I remember looking at Bobby and really looking at my husband and thinking this is it .. this is where our marriage will be tested from this day forward .. I remember grabbing his hand and holding on to it for dear life as they told us something was wrong with our daughters brain I also remember everything slowing down to almost nothing when they asked if we would like to abort her I remember looking at the dr and wondering if she really knew what she was asking if she really knew what she was suggesting before she could explain me and Bobby in unison said no that's not a option for us we got asked to abort another 4 times in my pregnancy.. they took us to another room to perform the ultra sound and then to do the amniocentesis I remember I was beyond scared out of my mind I remember looking at the ceiling in the room and thinking "what in the actual fuck...what is happening to my world right now" as they stuck the needle in my stomach I remember leaning to my left and holding on to Bobby trying not to cry or move they told me just a little more just a little more and I was thinking I would do anything for this little girl and I haven't even met her an at that point I realized I was a mom and hadn't even gave birth yet ... just..a...little..more ... they had finished and had left me to get dressed I turned to Bobby and exploded with tears and dropped to my knees I held on to being strong for so long and I pushed forward but I knew that this was just the beginning that there was nothing I could do I'm not aborting my baby so whatever is wrong .. it's there and that's that.. this really was just the beginning with in days I had fallen in to such a deep depression but I made sure I kept a smile on my face I never let Anyone know how hurt I really was this was where my friendships I started to push away and the paranoia set in I stopped going places stopped talking to people it was work home work home work home... it was so hard to function at this point with out falling apart every second of everyday I was put on meds to help (pregnancy safe) it was like putting a band aid on a bullet wound what was once a exciting time turned in to pure torture my best friends were pregnant and I couldn't even talk to them because ether I would scare them about their own pregnancys or make them feel bad for me and I didn't want ether so the moment you look forward to with your friends well not in the cards for me I guess.. my baby shower was right around the corner and I was so excited till the passing out started in yup out of no where just low blood pressure low blood sugar bam I'm on the floor one more thing to deal with with ... no way of fixing it baby shower happened and what do you know not only do I feel it coming on it doesn't leave the entire day I got to lay the on bathroom floor on what was supposed to be one of the best days I remember laying on the floor in the bathroom beyond grossed out but having no choice cus I needed the cold floor and holding my belly and praying just praying that I could get thru the day with out anyone knowing how bad things really were and that I could enjoy it and go home and fall apart just let me have one day I pulled it together enough to watch Bobby open the presents and then went home and cried that one more thing was robbed from me weekly stress test were in full swing $60 a week for the test ... started at week 29 I soon realized there's no way with a child with a medical condition like this that we would be able to move out of my moms that was just one test out of a whole bunch of other things I had done weekly and depending on what Harlow actually has there's just no way.. she may be a full time job which of course I'd do hands down but one more thing to get destroyed but yet we kept going we kept fighting ohhhh what I would give for it just to be hydrocephalus which is all they thought it was (not that that's any less concerning btw) it's just that has some what of a action plan .. I remember laying in bed holding my belly thinking this is the one and only time I'll ever get to do this because not only was it so hard to get pregnant I can't do this again I can't go thru this again mentally and physically and emotionally draining regardless if my next baby was perfect I wouldn't be able to be cAlm..now knowing what I know I'm grateful for taking the time to appreciate being pregnant with her even tho it was a very very hard time in my life now reading this please don't think I'm bitching or complaining or saying oh poor me because if you know me you know I don't like people to feel bad for me hence the fact I hid my true feelings my whole pregnancy and still do the only reason I'm so open about all of this is one I don't have to make eye contact lol (not my strong suit) and two because I learned that when your alone it gets a lot scarier so if someone reads this and says omg that's exactly how I feel I'm not alone then Harlow is here for yet another reason having me tell the story to help others so bare with me i try my best to be open and truthful
But the reason I grazed over this potion of our journey is to know that it was hard since that phone call I got at 10:23 am it's burned in to my memory but moments like this where I have her laying on me feeling her breath looking at her face and seeing the indents from my shirt on her cheek her little humming noises this is it this is why I fought so hard this is why I said I wouldn't abort her this is why standing in the hall way of the hospital with Bobby crying to him telling him I won't give up on this baby that it was all worth it it may not be a easy road but we're on it and we're sight seeing and we will make the best of this journey no matter how hard it hurts sometimes we have been humbled beyond belief and I hope for those of you who read this it's able to help you ❤️


Tuesday, February 7, 2017

So so far things have been just staying the same seizures here and there therapy for me and her Lol but for the last 4 days she has been on a good one crying and being so upset for nothing she's fed she's changed she's not tired but she just can't seem to get it together. The problem is is when she gets worked up she has a seizure so trying to keep her calm lately isn't working so lord help me 😫 but on the plus side we're going to be starting the process for her to have Enzo as her seizure therapy dog  which I'm so excited for cus he will be able to tell us when one is coming on and also he will get to come with us everywhere which if you know me you know I'm obsessed with my dog lol but also I'm excited to share the love and Volunteer and take him to see patients in the hospital that could use some cheering up cus also if you have met Enzo you know he loves people so silver longing folks gotta find it where you can... I had to cancel her hearing test due to the seizures but we know she can hear so that wasn't to upsetting her eye test is Friday so we will see how far she has come n how "blind" she really is so that's nerve wracking but kinda exciting at the same time Harlows therapy has been going really well and she thinks that Harlow is making great progress so I'm happy about that too but again comparison will kill you every time cus I see other baby's her Age and they are further along then her already but I try to stay positive all baby's develop at their own pace so that's what's going on!

Talk to you guys soon

Where my strength comes from

Monday, January 30, 2017

So a lot of you have been asking how I am doing it? How can I be so strong and so on... well the truth is I don't have a choice but if you asked me a year ago if I would do this I would have said yes that's how much I knew I wanted to be a mom it didn't matter to me I would love my child the way he or she deserved... let me take you back a lil in to how I became well .. me.. I was adopted by two amazing people they both were in the Air Force they were the definition of true love but couldn't get prego well ta da that's where I came in oh and my sister we were both from different family's put in to a foster adopt program. no I don't know who my birth parents are my birth mom never told them who the dad was and years of research and a privet investigator later.. hell she may as well be a ghost that's how much she doesn't exist and I'm ok with that after being pregnant for 9 months it blows my mind how you can't possibly write on the back of a napkin "I'm sorry it's better this way oh yea here's a little back round of your family's health history.." but I've come to terms with it she's not my mom regardless it just woulda been nice to know where I came from. Fast forward a bit i have felt with anxiety and depression since I can remember I was bullied in elementary and jr high nothing to crazy but enough that it stuck with me for a long time, it wasn't until high school that I finally figured it out that I didn't care what anyone thought of me it wasn't with out the help of my best friends. I gained one in elementary one in jr high and a hand full in high school I will forever be grateful for them they are the reason I am who I am today they taught me who I am they let me be myself I didn't have to be fake or worry about being judged or "not cool" that's how you know who your true friends are they are the ones that are holding your hand thru the worst moments in your life I always say you know you have a best friend when you can sit in a room in complete silence and it not be awkward..I never was the popular girl, never the pretty girl, never the lucky girl,  I pretty much pulled the short stick on the majority of things I had a really hard time in school I learned differently then everyone else so it was hard it wasn't that I couldn't learn it just was hard, but I got thru it.. it wasn't with out being called dumb or stupid tho.. I had my fair share of relationships some were good others were pretty bad I think we all go thru it till you find "the one" Bobby and I were good friends for 8 years before that finally clicked I think everyone knew it was going to happen sooner or later except for me then one day it just hit me why wouldn't I want to marry my best friend? I know some people pretend to have these perfect lives and perfect relationships and perfect houses and cars and kids and so on.. However me? Not a chance in hell Bobby drives me nuts 23 and a half hours a day there's times that I wonder how in the hell I married him but then those 30 minuets..ah I could fall in love with him all over again and that's what to me it's all about someone who will drive you to the point of insanity but will bring you right back with one simple gesture. He is the love of my life and I hope to god he stays that way I know some relationships fail when they are put to the test like in our situation but if you ask me it's made us stronger then ever but I will never say we are perfect because we are far from it and I hope who ever is reading this finds comfort in that oddly enough now days it's like high school all over again trying to fit in to this social media world.. We tried getting pregnant for 4 years we made it thru that hell I don't see why we can't make it thru each new hell we are forced to go thru ( no harlow is not hell just her condition is just want to clarify that one lol) fast forward a bit more .. I've been to more funerals in my life then I have weddings, baby showers and birthday party's combined it's hard to explain the feeling of knowing so many people who have passed in different periods of my life being only 28 and loosing close friends and family to so many bizzar unfortunate events I've had it all it seams then leading up to my best friends mom (my second mom) passing from cancer with in months of finding it and then 2 months later my dad passing away while driving from a stroke when he saw a dr two days prior to this day I don't remember the last thing he said to me but what kind of sick joke is that? Why have I been forced to live thru these time and time again? I'll tell you why.. to make me stronger to make the little things not matter so much, to make the bumps in the road rocks not boulders. My mom always says " don't sweat the small stuff" you will never catch me being upset about money, about getting a ticket, spilling barbecue sauce on a brand new shirt, yea I like nice things I am a girl it's in our make up but you best believe I could care less if all of it was gone..none of it matters. What matters is family, friends and memory's. Don't get me wrong I get upset a lot but it's over things I can't control I hate that the drs number one answer to anything I ask about harlows life is "we don't know" she's partially blind and they dont know how bad so does that mean she will never drive? Will Harlow be able to talk? Will she be able to walk? Will she be able come home from school and tell me about her first crush? Will Harlow get to have her dad walk her down the isle to the man of her dreams? " we don't know" if you think I have it all together then you may be looking at someone else. I take things day by day I don't get worked up over things I can't change and I let things be I have my moments of needed to be in control yes but it's because there is so much in my world that isn't able to be controlled I don't have a choice.. so tho I didn't go in to every nitty gritty detail of my life and I am greatful for my bumpy road of a life because all the scars are there to prove I made it thru it mabye not in one piece but I am still here still fighting my world got turned upside down on June 1st 2016 when I got the phone call that something was wrong with my miracle baby but in all honesty I wasn't surprised that's not me being negative that's me being realistic look at my track record for getting the easy way out .. yea it doesn't exist I've have to fight my way thru everything why would this be any different? I was absolutely devastated tho I had hoped that this would be the one thing in my life that just went perfect for a change ... she is perfect in my eyes but I was robbed out of being able to experience a fun glowing pregnancy instead I got 8 inch needles in my belly and weekly dr appointments that gave me panic attacks every. Single. Time I stepped foot in to the waiting room I wasn't able to go anywhere and show off my belly in fear of passing out because god forbid I get a break from anxiety or depression in what was supposed to be the happiest time in my life my 2 best friends and I were pregnant all together at the same time and I couldn't talk to them about any of it because my baby wasn't normal so I couldn't talk to them about their healthy perfect baby's the thing you dream about being pregnant with your best friends eating ice cream and watching movies on the couch nope I couldn't even be around them it still makes me cry to this day. My heart was broken when I didn't get to experience a normal birth when they come out and cry and your husband gets to cut the cord and they lay them on your chest nope Harlow didn't breath for 49 seconds and then they rushed her to the Nicu before I hardly even saw her. They took from me my first moment of meeting her to let me know she was going to die shortly followed by if she didn't die she would pretty much be a vegetable as well as she's blind and deaf. My first night home from the hospital I came home with no baby feeling as if my heart was ripped out and I was empty... i will always remember that night because I sat in my closet and cried in to a pillow so Bobby or my mom wouldn't hear me for hours because I just wanted to give up and it only had been 72 hours...These are moments I'll never get these are moments I'll never forget but these moments are moments that I can look back on and think I made it thru it wasn't easy but I made it thru it. Now 3 months later my post partum depression is still here hanging out like a dark cloud over my head.. Harlows seizures and infant spazzums are still here.. there's times I just hold her while she is having them in her perfectly picked out planned out room and hug her and cry and pray and say to her "I'm here I got you" because I can not do a single thing to stop them that I haven't already tried.. but.. Harlows here she's here and she eats from a bottle which they said she couldn't do and needed a gtube she can hear something they said she couldn't do she's starting to smile and trying to learn the beginnings of crawling all things they said she would never do so when I lay down with her and just hold her when she is sleeping and she is so perfect and so innocent and so beautiful it all goes away all the bad scary stuff I get a break from it all I just get a moment with my daughter my beautiful little miracle baby unicorn that fights harder then me and her dad combined and she will smile in her sleep chasing those bunnies.. those are the moments that give me the strength those are the moments that I think to my self WE got thru another day. From day one when they asked us to abort her I knew she would be here for a reason she got given to me and Bobby for a reason I often wonder how many reasons I never would have in a million years been this open and honest and vulnerable about my life to so many people I don't know  but I get so many messages from women going thru their own struggles and say I have helped them in one way or another but just simply telling the truth that they aren't alone. I think another reason she's given my family and bobbys family a closer bond and brought us together. It showed her guardian angel of a nurse that if it wasn't for her she wouldn't have ever learned to eat with a bottle so because of one woman she has changed Harlows life forever and Harlow showed her how absolutely Amazing she truly is it makes me wonder what else her very presence will do in this world... So it's not the adoption, the bullying, the bad relationships, the deaths, the depression and anxiety and all the other shitty things I've had to get thru that make me strong enough to make me able to get thru this..
It's Harlow 💗

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