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 ❤️
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