the end of 2016 the best and worst year of my life

Saturday, December 31, 2016

So it's almost New Year's 2017 can't believe it's already that year feels like it was just 2000 AnyWho we go to big bear every year with a group of friends and celebrate so this year it was no different and I have been looking forward to this trip for seriously like two months because I really wanted a break from reality just from at all everything that's been going on little did I know that you don't really get a break from life which I already know but I thought coming up getting away from everything maybe I would well I don't know if it's the altitude or if it's just getting worse but Harlow has been having this new kind of seizure called a jackknife seizure it started a couple weeks ago but it was maybe once a day now it's probably six or seven times a day and I don't really know how to explain it but it's different than your average seizure but the medicine that she's on for her normal seizures isn't preventing that type of seizure so I've been trying to get her into the doctor but the doctor went on vacation so with that being said we just got to live with it until he comes back yay so that little vacation getaway or I could shut my mind off and have a good time with friends and my daughter and my husband kind of went to shit because now I'm walking on eggshells again I'm just waiting for it to get easier I hope that I can do a positive blog post soon because I feel like I've had nothing but negative stuff to say because I don't have anything good to share other than she's adorable ... i've been praying extra hard lately not that I haven't been before but I just need a sign I need something to keep me going I just feel like I am hoping and praying and putting all my faith into God and I don't have any proof of him and I get it that's what faith is but I could really use a miracle right about now or at least a sign that you're there and that you're trying to help me through this .. this year I'm not doing any New Year's resolutions because I've learned that I can't plan ahead I can't even plan a day ahead anymore I don't know what the future holds for me and my family I know that no one else does either but you guys have a general idea at least so for me this new year just means I made it one more year in spite of everything that's been going on I have the slightest idea how and some days I just wonder how the hell I'm going to get through the next day but I'm somehow making it I'm not gonna lie having something to distract my mind has been the biggest blessing in the world so for everyone who has purchased something from my little shop on Etsy or on Instagram you seriously have absolutely no idea how helpful you are being as for me and Bobby were right I feel like we're on completely different pages now he's such an optimist and just only sees The good in her which I absolutely love but sometimes when I need some reassuring doesn't go over that well because he just thinks I'm negative or he doesn't understand why I can't see the good and it's not but I can't see the good I just have to be realistic so it's more of a balancing act than anything but at least Harlow has one parent that no matter what can always hold her can always talk to her and never be freaking out and never have breakdowns and if he does that he's really good at hiding them but that's just how Bobby is he's really good at pushing on and letting things go I wish I could take a page out of his book as for our marriage it's the same having a baby with medical issues like I said in previous blog posts I think you have a choice to let it tear you apart or let it make you become closer and for us neither has happened we just remain the same I think because Bobby likes to look at things like nothings wrong which is a good thing well I think that's all for now I hope everyone has a safe New Year's please no one drink and drive it's not worth it that's why they've invented Uber's and lifts and cheers to 2017 I hope to God this year is different...

Merry Christmas

Monday, December 26, 2016

So Christmas was very bittersweet for me it was awesome because my daughter was here and all year that's all I kept thinking is on my gosh I'm going to have a baby for Christmas this year but it definitely could've been a better Christmas I felt like I was just waiting for something to get ruined last night she started having seizures again and has been acting a little bit strange all day so luckily I haven't upped her seizure meds yet so I still have that before I have to take her back to the doctors so please please please pray that that will fix it so much for having all those good days right? but I will say that Harlow officially has more clothes than me and Bobby combined thanks to our families it was so fun to open presents for her and get her toys and everything so that's nice the hopeforharlow  shop is doing really good and I'm so grateful for everybody this is the one thing if I can get it going that will help us survive so when I say you guys have no idea how much this means to me you really don't me and Bobby want to live as much of a normal life as possible so our next step is to get a Home and though it's gonna take us a lot longer than it would normally for most people it's still our goal so I keep praying that somehow someway it'll happen.. with me not being able to work right now it's really hard on us I keep trying to figure out life as if I'm going to be able to figure it out I do believe that my faith has gotten 100% stronger in all of this and I keep telling myself God is not punishing me there's a reason he gave me her because I can do something for her no one else can but at the same time it feels like a punishment against her I've been watching her eyes lately and I can see that she really The majority blind so on top of not being able to develop mentally like a normal kid she also has to come over that hurdle not being able to see her own hands how was she supposed to suck her thumb or play with toys or smile at us because she doesn't know it's our faces she can just kind of see shadows so it's been hard to say the least but I do have faith and her I haven't lost that yet I just think I've lost faith in myself every time I feel like I'm really able to get over this postpartum depression something else happens and it throws me back I just wish things could be normal and I didn't have to make a new normal 2016 was the worst and best year of my life and my dad has passed away so you can imagine how bad this year has been I sure hope 2017 is different


Friday, December 23, 2016

Some days are good some bad last week when I got the news about how we can't have anymore kids and that Harlow will die from her dignosis from the geneticist I felt somthing change in me and not in a good way the whole day I was a mess the next day even more a mess and so on well then I woke up two days ago and felt .. nothing .. normally I wake up I realize it wasn't all a dream I shrug my shoulders and start the day unable to not be bummed out but it is what it is comparison is the absolute worst I've been trying to be better at it well anyways I noticed that I wouldn't hold Harlow as much I would do what needed to be done and then put her down in her bed or swing or boppy then I noticed that it wasn't that I didn't think about her or miss her but I wouldn't wanna rush home when I was out running errands it bothered me that I didn't wanna be home with her and I couldn't figure it out I just chalked it up to being tired cus she kept me up all night so I just guessed I was annoyed? I dunno so I went to my post partum depression group yesterday and it all clicked I have emotionally shut down 😔 what is worse is I don't know how to turn it back on and I'm so scared it's going to get worse I get that it's my brain's way of protecting itself but at the same time like I can't run from my problems as much as I would love to not seeing her as a problem but everything that comes with her diagnosis is so scary and unknown and it's really hard to continue having a "normal life" so I don't really know I've been a mess I wish I could pretend that I had everything together and that my life wasn't a mess but hey I told you guys I would be honest on here as for me and Bobby we're good I know that a lot of times when parents are faced with stuff like this they either distance themselves or get closer for us nothing really changed honestly we haven't gotten closer or further apart but we have a different type of relationship I know it confuses people at times the way we joke around and talk to each other but we were best friends for eight years before this before we got together that is I don't know I guess I got lucky I didn't marry him for his romantic skills that's for sure but I did marry him because he is my best friend and now Harlow has us as parents Who would've thought right I feel like God gave us her for a reason the reason is unknown but if I had to guess it's because me and Bobby our whole lives I've had the odds stacked against us as well so we get it we get it when a teacher says that you can't do something we get it when you get called stupid we get it when you pulled the short stick pretty much on everything but we've come out stronger because of it all there's a lot of things in life I wish I could have or do or change but I think that's just life I think social media paints a picture of all these perfect lives that we all want to aspire to be but in reality behind closed doors I think everybody has problems just some people are more scared to admit them we on the other hand I've given up all privacy because I feel like it helps other moms and families out there know that social media is just a picture it's not real life and so I have learned seeing that comparison is the hardest thing lately to deal with that I have to tell myself you're comparing yourself to something that isn't real images you see of happy little family's aren't always true I'm not saying that some of you have happy little family's but everyone has their problems no matter what anyone says so that's where I'm at now emotionally messed up but I'll get through it just like I've gotten through everything else one day all of this will make sense until then surviving is about all the living I can do...

Welcome to my own personal hell...

Wednesday, December 14, 2016

Sorry I haven't been keeping up with this the last week or so it's been really hard dealing with everything from her new epilepsy dignosis to her now being underdeveloped in her growth and already falling behind and then today with the genetics telling us that she's going to die and we can't ever have anymore kids cus we're at such a high risk for it to happen again she's one in 11 million  so this is what it's like to be one... I've been doing everything I can to keep distracted from it all but it's time to face the facts that as hard as I run from the truth I'm never going to get away from it .. I hate every aspect of this it's almost impossible to find joy anymore for me I'm trying to remain positive but I'm running out of patience I love my daughter I truly do but every time I look at her it breaks my heart that she may miss out on so much in life and tho she won't know it.. I will and now finding out I'll never be able to experience what it's like to be a "normal" mom it starts the grieving process all over again everyone keeps saying god only gives you what you can handle .. yea well I'm not doing so hot with that concept .. what it's like to be in my head is like a tornado I got 50 things going on all at once all having to do with something devastating and there's no way of turning it off imagine everyday waking up to the same nightmare and pinching ur self hoping that you will wake up and find out it's all been a dream and that was the learning experience to not take life for granted and lastly walking around in this world seeing parents not give a crap about their kid woman doing drugs while they are pregnant and their kid is perfectly fine going to target and seeing moms with their 5 kids and I can't even have one normal one I hate when people correct me when I say Harlow isn't normal they say " she is normal" oh really then why am I living in my own personal hell where I can't help my daughter I can't fix this no she's not normal she's the best she can be but she's not normal I have a mentally disabled child that I won't know how severe it will be till it happeneds over and over and over again over the years it will be a never ending cycle for me so please I know you are trying to be nice but the sooner everyone understands the better it is on me... I'm not mad at god but I am confused the part that's the hardest for me is that this is my life now I've lost a lot of loved ones in my life I've had to move forward when my dad died I didn't skip a beat I just kept going this however isn't something I can change I can't get used to this because it's forever changing so how can I ever get comfortable with my life when it's constantly being ripped out from under our feet I know this post is pretty heavy but I swore I would be 100% honest on here for other woman going thru somthing similar and so that years from now I can look back on it all.. so it is what it is nothing I can do about it now other then try to move past this part of my life and hopfully the next chapter is better then this one... as for now I'm pretty sure I've finally hit rock bottom...I can't go back to work anytime soon cus the Drs appointments the therapy and the epilepsy and supposably bobby makes to much for us to get financial help soooo what are we supposed to do never be able to buy a house always be worried about money? they asked me in the hospital to rate my pain level on a scale from 1-10 I never got passed a 9 even when I thought it was a 11 I never used it I always figured there has to be something that will hurt worse then this physical pain and tho the day Harlow passes away and I pray to god that it's when she's old and grey and I'll be long gone so I won't know what that feels like I'm pretty sure I'm just about at my 10...

Day by day

Monday, December 5, 2016

Sooo my kid can hear imagine that? I knew she could tho she still has to finish her test the dr said it must have been fluid or somthing from birth cus she's doing great now it's weird cus I had a gut feeling. Besides the fact that we would slam a door and she would jump I just knew but that scares me at times because I have that mother's intuition and so it makes her condition so much more real because there's certain things that I just have a gut feeling about like everything with her seizures I just know she's having them and they just arnt he obvious type of sezuire and if she's not having him then thank God my mother's intuition is wrong and I'm perfectly OK with that right now I think what I'm so scared about is if she is in fact having them that the medicine that they have to put her on completely knocks her out so all the progress we've made all the milestones that she's had are going to throw her back and everything's gonna be more difficult for her that's why she failed all the tests and the Nicu's because of that stupid medicine so I don't want to put her on it I've heard good things about cannabis oil but she might be too young for it so I don't know I went to therapy today and brought Bobby with me it was good but it also made me realize how many issues I actually have to deal with that I've been putting off and pretending are fine I've been contemplating how transparent and how open I should be on here and with other people but I've learned through people sending me messages that it's actually helping them so I've decided to continue trying to be as honest as I can I feel like Harlow has given me strength I didn't even know I had and maybe I can help others and that's just one more way that Harlow is helping others which is the whole reason why she's here because as we've all learned she's magic .. The hardest part right now isn't her condition.. it's mine.. this depression is seriously no joke there's some days that I'm perfectly fine and no one would ever guess anything is even wrong with me other days I don't even know how I function and I don't get why it's one day on one day off because one day I'll be having a bad day and the next I'm fine so I forget that anything is wrong and then it hits me like a ton of bricks all over again. I keep getting this sinking feeling that I'm being a horrible mom and even though everyone tells me how great I'm doing it's hard to believe it's like I look at her and think how amazing she is and think of all the things that she's accomplished and she's only six weeks old and I am 28 years old and I can't seem to get a grip why is it that she's stronger than I am? I don't really know how to go forward from here I've just been taking it day by day hour by hour minute by minute thinking when I lay my head down at night I got thru another day I can't live my life like this it's not fair to me my husband or my daughter but I don't have any other choice right now I guess trying to tackle everything out once isn't working for me but it's not like I can tell everything else hold on real quick let me handle this thing first .. I feel like I'm spinning 10 plates on sticks right now and I feel like all the plans are falling crashing around me and all the while there is Harlow this happy little baby I got given to me and I can't seem to get it together but at least I have Bobby he is a light at the end of the tunnel he drives me nuts 90% of the time don't get me wrong we aren't perfect and we do fight but he also has an amazing dad where we have flaws we make up for it in other ways .. apparently according to my therapist my fears are irrational and I have to agree there's times that I can't even go out to dinner because I can't bear being in a crowd of people for the fear of I don't know what by for some unknown reason I cant meeting new people is sometimes very hard for me for no reason whatsoever I couldn't tell you why I get anxiety about it even though I'm sure they're very nice people. Also I never dealt with my dad stuff I should probably handle that too and as easy-going as I am apparently I'm kind of a control freak in my own life which I guess we all have a little bit of that in us but I really thought I was the most easy going person alive but I guess when I can't control my anxiety that's when things start to freak me out so if I just don't put myself in a situation that I don't have to deal with it right? Ahh life maybe one day I'll understand it until then I guess I'll just keep going day by day... on another note me and bobby both woke up to Harlow possibly having a seizure .. but while it was going on I kind of felt like I could breathe I feel like I've been holding my breath since day one of all this waiting for something to happen and when I finally it did I kind of told myself I knew it.. not that I would want her to have a seizure of course I just had that feeling I emailed her doctor and like Kaiser fashion they didn't seem very concerned about it I think because she just had the EEG so they want to see the results of that but when she had her EEG and she didn't twitch once it worries me that the eeg didn't pick up what me and Bobby are seeing I don't know I know that part of me is maybe overthinking all of this the other part of me is my mother's instinct and the other part of me is just constant worry and then a small part is being realistic but where is the positive part the part where I know that she's going to overcome this just like she's overcome everything else who knows maybe it's just one of those days hopefully tomorrow will be better and of course her acid reflex is back so she's been in pain all day gosh I wish I could just take her pain away I'm sure every mom feels that way it just sucks not being able to do anything for her :/ well I think I've caught you guys all up on everything I'll try to update you all as much as possible thanks for your continued prayers they mean the world

Goodnight xoxo

Balancing act..

Saturday, December 3, 2016

yea I'm failing at it ...  everyone keeps telling me how strong I am and tho I appreshate it so much I'm having trouble seeing what your seeing.. I've always been really hard on my self in general but all of this I should be better at it I should be better at being her mom I should be better at handling everything going on with her. Sometimes when she has her moments of possible sezuires or somthing that just isn't "normal"  baby behavior I seriously want to run I want to run states away if I could it's hard to admit this but I can't lie it's very hard being her mom.  In no way do I resent her and I'm not mad at god tho everyone asks me if I am it comes down to me being confused and scared.. how am I supposed to do this? how does any one do this? I'm confused as to why her why does she have to go thru this I'm mad because why me when there is so many people who don't even want their kids or do drugs while pregnant and their baby's are fine I know every ones different I know god only gives us what we can handle but I seriously think he has me mistaken for someone else. I feel as if I have been holding my breath and I'm at the breaking point where everytime I'm like yes I made it another day another week I think damnit this is how my life will always be holding my breath to get thru a day then the night comes and I can't ever actually sleep because I have to listen for her and see if it's a regular cry or is she sezing .. no one plans for their lives to turn this way.. I sure didn't.. I wanted the husband, the house,  the dog and the perfect little baby tho she is perfect in our eyes we don't get to have a typical new born or toddler or teenage if she lives to be one seeing that a lot of the kids who have this suposablly die by 10 ... sorry this blog post is probally beyond depressing but I needed to vent I've been positive for so long and I've been having really hard days. Her EEG was a big eye opener that she's not going to live a normal life even if she looks it... and there isn't a damn thing I can do about it.. every mothers fear..

We don't get to find out the results for a while because we found a  neurologist in Orange County that we're going to give a try and he's going to be the one going over the results hopefully because we learned Harlow dosnt do well on long traffic drives and he last we we need is getting her upset cus that's when the weird stuff starts to happen yet again another thing we're limited to and have to find other ways arround. I just feel so bad for her I know they say baby's don't know but I'm so worried she's scared and I can't fix it she gets this look on her face where she looks like she's so confused and then it's followed by pain if this is the look I get now I can't imagine the looks I'll get from her as she gets older it's just constantly breaking my heart that I can't fix this I can't make this go away

On a more positive note she rolled over on her own the other day we havnt been able to get her to do it again tho she hates tummy time so much it's hard to make her do it to much for too long. I have to give my husband props tho he dosnt ever look at her like anythings wrong he is so in love with her it's so amazing to watch them together well I'm off to bed I hope tomorrow is a better day 💜
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