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!
xoxox

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)

https://en.wikipedia.org/wiki/Ketogenic_diet

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)

https://www.babycenter.com/0_thrush-in-babies_92.bc

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
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