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