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 💗

We're we are now

Friday, January 27, 2017

So  Harlow had 2 different therapy appointments this week one with her usual therapist and one with one Kaiser set up for us both went well the Kaiser one told us that she isn't behind and she's borderline which is great the other one told us there is no reason she shouldn't walk because she's showing great signs and the way her legs work which is even bigger news! The people from blind services came as well (we had a Busy week ) they will be coming once a month to work with her as well and the brail institute will be coming the beginning of next month to work with her as well so we are using anything we can to help this little girl.

Her infant spazzums are still here and still being a pain in the ass some days she has like 3 and not to bad of ones other days there's like 6 and they are pretty rough on her so we just keep praying and working with her hopefully they will pass she hasn't smiled since that one day which is frustrating me but I get it she doesn't know what she's smiling at so it's confusing to her. She has developed a new hatered for the car that's been super fun for me ... not.. ugh come on kid all your appointments are in orange work with me!!!

As for me and Bobby just working our butts off him literally he's been putting in 14 hour days and I feel so bad when he gets home he looks like a walking zombie but I appreshate it so much that he's doing this so that I am able to stay with her not that we have a choice but you know what I mean.  As for hope for Harlows shop it's doing great thanks to all of her awesome supporters thank you all so much!

I have my good days and my bad but I have to stay as positive as possible falling apart does no good for Harlow but I'm not gunna lie it happens a lot I just try to keep it to my self super healthy I know lol but it's almost like I gotta get it out and keep going no point in bringing everyone else down round me.

If you follow my ig you got to see this wiggle worm moving across the floor getting ready to learn how to crawl ugh I love her strength so much 3 months and has no intentions of giving up my little fighter

Well short one tonight we are all beat!

Ni night all! 🖤

The happiest place on earth

Wednesday, January 18, 2017

So today was rough not going to lie I have been feeling like I'm the worst mother lately cus I can't help her when it comes to the seizures god I would give anything for her just to have a hard time with therapy these seizures are just impossible ugh we went to Disneyland today and it just was not happening for her from pretty much the second I got there she was upset and having infant spazzums then I think she was over stimulated and just could not get a grip she didn't calm down until I pulled in to my drive way ... yes that car ride was one I could have lived with out if you were wondering lol then about a hour later even tho she was home and I changed her in to her comfy jammies and laid down with her she was not having it started all over again I feel like once the day is set in motion that's just how it's going to be till the next day so here's hoping tomorrow goes better.. she has her therapy tomorrow morning which is always exciting because normally she makes progress but with the spazzums it makes it hard cus she gets so tired from them so I hope she gets a break and can do her therapy with none.. as for me I've aged 10 years in one day it feels like also we have Been saving for ever it feels like and have lived with my mother far longer then I would like nothing on her she's a god send but we need to start our routine with Harlow for us to start to feel normal but we can't get approved for a loan unless I'm working at a actual place and I do have a office job that I loved but not like I can just leave her alone with what's going on with these seizures not to mention all of her drs appointments her medications therapy and so on ... is a full time job in itself so not sure what to do at this point I don't want to rent and throw money we barely have away I just feel like we're banging our head in to the wall over and over again any time I feel like we get a break something else happens so pray that something opens up for us soon :/ also pray for these seizures to let up I dunno how Harlow feels but if it's anything like my heart it hurts 😔 On to other things I'm looking in to getting Harlow a seizure dog and seeing when or how old she has to be and so on I wish Enzo could do it but from what I have read they need to learn from birth pretty much but that would be cool for Harlow to have two dogs that protect her well that's all for today I hope to have some good news soon these post suck there so depressing :/ sorry guys! But thanks for following along it means a lot

A GOOD sunday

Sunday, January 15, 2017

Sorry I haven't updated in a bit I went mia on my own brain it feels like... last Tuesday I woke up with a migraine from actual hell and could barely even move let alone take care of a baby so lucky for me my mom could take care of her but unfortunately Harlow was having a bad day too so pretty much it was a nightmare in the household lol Harlows acid reflux was at a all time high so she was throwing up having seizures and her being backed up because she can't finish her formula correctly it was pretty bad so long story short I really hope a day like that never happens again there wasn't one moment thru the day she wasn't crying mean while I'm dying and the crying isn't helping and I feel so bad I can't be there for her let alone do anything for her so it was a LONG DAY ... but besides that Harlows infant spazum have started to slow down haven't gone away but have slowed the treatment plan we have her on is going to take time I just pray it works also using franincents oils have been helping take the edge off for her as well.. her eye sight to us looks like it's getting a little better when it's light out or lots of lights are on she's able to follow us so I know we may just be shadows but it's good to know she can at least see some things.. as for me I'm hanging in there like usual some days are better then others im still in Therapy for postpartum it helps a lot but the more the seizures stop the more I feel like I'm becoming more accepting of the situation we're in I don't agree with it I hate that she has to go thru it but I'm not as scared of her as I was I think I've just become very desensitized to her which sucks but had to be done with everything going on I've decided also to rename her infant spazum lol I just tell her there are little gremlins building homes cus they think they can live there she cant understand me yet but at least I feel like I have something to say besides oh here comes another seizure Hang in there 🙄 so yea Harlows got some gremlins lol as for me and Bobby same ol same ol he's been working a lot and I've been doing the shop ( THANK GOD it is the best thing for me )our goal still is to try and get a home because drum roll pleaseeeeee....we've decided to adopt (not right now lol) but when we get a home that's our next move I want Harlow to have a buddy that will always look out for her tho she has cousins and close baby's her age cus of my friends that she will be able to grow up with  but I just want to know she will always have someone till she's old and grey  it's a 1 and 4 chance that we would have another baby with this and she's 1 in 11 million sooo I can't risk it and I can't go thru this again I've barely made it thru this and it's only been two months it's hard to know I'll never be able to be pregnant again or experience a "normal" pregnancy unless they find out how she got it which until they have more info in it they won't know but on that note she got in to the rare conditions study in Washington (yay) so they may one day know until then adoption it is and because I was adopted I'm actually excited to have a special bond with both my kids in completely different ways and that way I can request a boy because I have always wanted a lil guy so there is some light at the end of the tunnel on that part of things Harlow will always be the light in our lives and we will always fight like hell for her but I'm excited to know that one day we will be able to have one more and watch them grow together ugh it warms my soul to know something like that...so today was a good day went to church went to brunch for one of my best friends birthday and hung out with my husband and littles tomorrow may suck I don't know it's day by day with her but I'm happy I got a good day for a change Harlow only had 3 gremlin attacks to day so it's better then the 10-15 she was having 😩 well I think that's all for now goodnight everyone!


My view on life

Thursday, January 5, 2017

Everything I ever thought about life is pretty much a lie now I've had to re-evaluate how I look at life and how I take everything in how I see everything how I feel everything how I take each moment and look at it completely different than  I used to we all went thru our partying stage our first loves and so on but now I'm 28 years old and I feel like I'm starting all over I have no idea what I'm doing and I have no idea how to feel some of the times I feel like I got a little bit of clarity on how life is really supposed to be and what this is all for I do believe in a God and I feel that my religious views have gotten stronger ever since I got pregnant and so maybe that was gods plan altogether was to bring me closer to him but at the same time someone asked me why do you Believe in something you can't see you can't feel and you don't know is actually there how can you believe in something like that how can you put all your faith into something that it isn't in front of you my answer I don't know I just do I mean I could give you the typical answer from a Christian and say that he's everywhere because I do believe he is everywhere I mean look at the world but trying to understand why all these bad things happen makes you question what he's doing and why he's doing the things hes doing but I keep believing that there's a bigger picture that this is just a small little bump in something so much bigger that I just got to get through this Heck maybe life is just the beginning and then once you die that's when you really start living I guess that's kind of hypocritical though because you should be able to live your life right? I don't know I like to believe my dad is in this amazing place where he's happy all the time and I believe that he gets to look down and see me and my mom and my daughter and my sister living life and he just can't wait to see us I like to believe that God looking down on Harlow and holding her hand every time she has a seizure I like to believe that something is bigger than all of this and it's all gonna make sense one day but if I didn't believe in those things and if I didn't believe in a God or a higher power than what is the point of all of this what is the point of going through this to one day just die and be done?It doesn't make any sense to me I know people have proven both sides or at least they think they have that there is or is not a God and I also know it's like the number one thing besides politics that you don't talk about unless your sure that someone is on the same page with you but to me I feel like everyone is responsible for their own life and they should be able to believe in whatever they want to believe in and not to judge people if someone told me I don't believe in a god my answer would be OK if someone told me they do believe in a god my answer would be OK everyone is entitled to their own life their own decisions their own beliefs so who the hell am I to judge so I hope I didn't make anybody mad with this post if I did I apologize just my ramblings something to make me feel better because at this point I don't really have much to make me feel better specially when Harlow's having back to back Seizures and as tight as I hold her and as much as I cry and pray for them to stop they keep coming so technically I have every right to not believe in a God but for some reason I still do and I think that's the bigger picture having faith when there's no more room to have faith so who knows I'm still hoping for that day to come that all of this makes sense until then I'm going to keep praying I'm gonna keep my faith and I'm gonna keep loving my daughter because that's all I can do
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