Standards and Responsibilities

I just want to make something clear today after the past few weeks this need to be reitterated  :

I opened my story with sophia up to the world so that i could share her journey and provide hope to other families of special needs children so that people can see that no matter what doctors say things are always possible.
I opened my heart up to the world so that i could find a measure of peace with my new life.

As with most things when you put yourself out there you get the good and the bad . I expected all of that. I know when you give people a story its human nature to form opinions and talk about it. So i NEVER mind if people want to talk about sophia or our journey. I never mind that people assume and judge. it is what it is. but please read this next part very carefully and don't mistake my words.


Not a one of my readers or 'online friends'  knows the whole story, i jumped over nearly a years worth of story before new years eve 2013. I jumped over the darkest and hardest part of this story for a reason.  there are still days when i am so consumed by this that i can't figure out which way is up.  i need space to be upset, I WILL NEVER GIVE UP. but i need to be able to say i give up, just to amuse myself. i need space to be human. as much as i joke about it I'm no super mom.. i have no secret bag of tricks that makes this easy or okay.. some days this sucks and i can't find a sunny spot. sue me.

I know i put on a strong face, but every day that i wake up this is my very first train of thought and the first hour and 20 min of my day... everyday... its hard to get positive when your bombarded by your issues every single morning at 4am: this is my morningly thought process

(ok, I'm up, uggh i hate this bed, but I'm alvie so thank you lord..)
i roll over and immediately see sophia either to my left in her bed or to my right in my bed but she's arms length away at best every night.

then i remember ....

check make sure she's breathing!!
 ( a lot of kids with pch pass away in there sleep with no warning, i do breathing checks like 8 times each night)
She's breathing!!!
 ok good, mind u its 4 am.. i go to the bathroom , get dressed , make myself coffee and get the only 25 min in my day with luis that isn't centered entirely around sophia. Yes i have to get up at 4 am to get undivided time with my man. but its important to me so i do it.
When she does finally wake up she just lays there making no noise staring at the ceiling. not able to sit up get up or yell for me she just lays there   ( i wounder if she knows where she is everyday or if she's ever afraid, i wish i could ask her about her dreams, i wonder if she dreams at all. ill probably never know). i bring her a bottle and feed it to her , change her diaper and set up her pillows so she can sit up to watch cartoons. The same thing she has done everyday of her life. does she like it ? i don't really know... would she prefer to do something else? maybe... can she tell me? .. no... i hope I'm doing this the way she likes.
then i go make more coffee and come back to sophia, while I'm gone she's kicked her legs in excitement and ended up scotching down so far that she's now on her back and probably has been since i walked away from her. can she scotch back up?.. no... so i prop her up again. as I'm pick her up to put her back on her bottom she manages to stands up and starts to jump, but its too early for me to hold her while she jumps so i put her down, she's gets frustrated , then distracted and forgets.. i feel like a failure as a mother and sip my coffee wishing she could jump and dance with her morning cartoons like other kids do..without needing me to hold her up the entire time.
 and a single tear escapes almost every morning at some point thinking about everything i wish we could talk about with her (god how i long to hear her little voice say anything at all), i wish i could explain to her why mickey does this or says that but i can't, i could try but she won't understand.

I wish i could explain to you guys how isolating it is to love someone so much and to dedicate your entire existence to someone who doesn't even understand, and may never be able to reciprocate any measure of what i have shown and given her. its the hardest god damn thing i have ever done.
human nature tells you not to engage in those kinds of relationships. the ones where all u do is give. but as her mother i have deep and fierce need to be with her always. so i knowingly and willingly put myself in the position to be physically and emotionally drained everyday. Its hard.

all of this on top of being a complete control freak and having severe anxiety condition.
Having utterly no control over sophias life , but being 100% responsible for it.... is exhausting on every level beyond the point of measure.....

Now keep in mind all that :: was the first 20 min of my day with sophia::
i feel that much emotion every day, who else of you wakes up everyday and has their first thought be.. did she die in her sleep?! is she still with me? the fact that i may really loose her will never go away from me. they have only been studying her condition since 2010. thats 4 years.. none has died in that 4 years so thats why they tell me there is no mortality rate .. but they themselves said its only based off the short study they have.. so thats not a guarantee to me.. I'm still convinced we will fight and win, but that doesn't mean I'm not afraid of loosing her.
im loosing myself a little more everyday because i have to put someone first and i don't have the luxury of putting myself first. ever.
if i loose myself in my love for her, and then god forbid i loose her too... ill have nothing left..


So please understand that you can't possibly understand, i don't expect anyone to..
its not okay for me to expect someone else to understand the weight of my responsibilty.
Its also not okay for you to tell me how to feel.
its not okay for you to dictate how i express myself.
its not okay for you to assume that you know how you would handle this.
its not okay for me to feel like i owe anything to anyone other than sophia.
its not okay for people to try and come around out of curiosity.
its not okay for people to try and make us your charity work.
Its not okay for you to pity us.
its not okay for people to try to make themselves feel superior by comparison to my life.
its not okay for people to flippantly brush me off if i ask for help.(cause thats rare...)
its not okay to ask me to sit inside your box of acceptable attitudes and actions.

if you ever expect any of that from me please understand i will cut you off and cut you out of my life faster then fast with no explanation or hard feelings whatsoever.

i understand that what i am going through here is extra ordinary ... i know that what require of people on TEAM SOPHIA ( the "real" team , not just my cheerleaders , but i love our cheerleaders) is A LOT to ask of people..

but i don't and never have and never will ever beg a person to be in my life. if you want out the door is ALWAYS OPEN..
I am afraid to loose her and i am pissed off that life felt me this hand but i AM NOT AFRAID TO DO THIS SHIT WITHOUT A TEAM AT ALL...having support is amazing and i have gotten such an outpour of support that i can't even tell you. this post is for the select few who need to be reminded why i am doing this and what i have for standards of people who want to be in my child life.
i expect a lot and i ask a lot and its because it takes a lot to get to know sophia and to be there for me. I won't allow dead bet half assed takers to come around us and syphin the positive vibes i work so hard to manifest around us.  i won't hesitate to remove bad eggs.

my life is intense on the low key days and nearly unbearable on the bad days.. but the beauty of it is .. all things are in balance, so as bad as it can be when its bad.... is how good it can be when its good.

when sophia makes a new move or does something for the first time... when she hugs you... or even shows a preference to want to be with you ... when she allows you to hold her hand or when your sitting close to her in a moment of silence and you feel the divine energy she carries you will see that the work put in is so minuscule compared to the rewards of being near to her. Being with her is truly what i think being near an angel would feel like.. ( yes I'm her mom all moms think they have angels, but i mean on an energy vibes hippy level)her energy is so pure and so genuine, so rare.. i won't allow ANYTHING to EVER taint that.

call me a overdramatic, excessive, dark, scary, overbearing, insecure, incessant pain in the ass if you want to. its a free country. but just know that i NEVER EVER have to question the loyalty of my team. I never need to wonder if my crew has my back. i never worry people are spreading my business or talking about my darkest secret with outsiders.. i learned the hard way this month that i am far more blessed then i ever knew.

So the next time you think I'm being a drama queen. imagine this...
your in a doctors office holding your baby and they tell you this..

something is very wrong with your child brain, we know almost nothing other then that its messed up. No there is no treatment, No we aren't trying to find one, No she won't ever walk talk sit crawl feed herself or function on any normal level. yes she might die young but we can't really say when or why...but we are here if u need us. follow up in 4 months bye!!!

and then YOU find a way to be positive everyday and function like an adult dealing with bills ,household stuff, family, drama with old friends , your relationship, treatment plans, transitioning into preschool, pt, ot, speech therapy, at home feeding therapy , taking care of yourself, cooking dinner, trying to get in shape so you can care for sophia as she gets heavier and older aaaannnddd... showering... lol

its just a lot and i can't do it everyday with a smile, so if thats a problem for you.. or you can't be there  for us in bad times.. get the hell out of our way, cause you damn sure won't be invited to celebrate our success.....

most importantly i don't owe anyone this explanation.. again I'm posting this to benefit other moms of special needs kids to feel less like they are insane.. and so the people in my life who might think I'm insane... can try and understand that I'm not crazy I just know who i am and what i will and won't have in my life.

 thanks for reading ! and more importanly
thanks for the support.