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.

Why i dont want a mothers day gift

First let me start by saying happy mothers day to all of my  fellow moms.
Mothers are special and amazing and I am blessed to know some of the very best. You are the most selfless and strong people around.

That being said, i have decided to share with you all my personal feelings on Mothers Day.

one:
This is yet another in the plethora of propaganda fueled holidays designed to ultimately create a revenue stream for the retail giants of the world.. like halloween and easter, they have some real nice history and meaning behind them but have been largely blown out of proportion.

Two:
 There is secret club of sorts to which i belong. but its not really a secret in the sense that no one knows about it, but that no one really talks about it or acknowledges it . The group to which i am referring to is the mothers who will likely never hear happy mothers day , or receive a hand made gift, will never get burnt toast and awful coffee in bed from their kids and who will likely not ever be able to "sleep in" either.  We are the mothers of kids who are medically complicated, special needs, or even the mothers of angel babies. This day is not always easy and its not always happy. for all of my fellow special moms you guys are game changers and warriors. never forget it.

 For me this year I'm okay. but that  not to say next year i won't be an absolute mess. i cried a little bit when i woke up today at 5 am, after an awful nights rest, waking up several times to adjust sophia in her new bed. I cried for no real reason, i just have to let the disappointment run through me and get it over with for the day. Every time a holiday like this comes up special needs mothers kind of have the band aid we put over ourselves ripped off for changing or something.. it hurts all over again. The diagnosis, the truth of the future, what you thought your life would be.... it all goes running through your mind. Then you see all the cute stuff your friends received from their children online.. and your sad... then your angry with yourself for being sad about something so DUMB and so inevitable ... EVERY YEAR this crap comes up... but still every year i need that moment to feel that pain and to be angry and to mourn for the life i had imagined... then move on.. and thats exactly what i do . i let myself be heartbroken for a few.. then i pull it together brush it off and keep it moving.. because at the end of the day, when i real thought about it . I don't even want a mothers day gift. I'm not crying because i didn't get some construction paper mess that ill have to keep track of for the next ten years..

when it comes down to it i have been blessed with the most amazing gift any person could ever be lucky enough to get. not only was i sent the gift of a child. a precious soul to nurture and raise. but i was sent a very rare soul one of whom god created with great focus. She was created to bring people together and show the world what love can do.

i have been privileged to create a bond so deep that we do not require words. Her and I we are like a magnetic force. i move everything in my life to match her position . always. she senses me on a level even i do not understand. She knows when i am near her without having to see or hear me.

The way that her eyes light up when i come into her field of vision, the way that she smiles and kicks her legs. The exact twist of her hands and raise of her arms lets me know that she is anticipating my touch. When i do grab her up into my arms, she buries her face deep in my chest in such an innocent and exhausted way that i know she feels at home.

The gift i have been given for mothers day is the gift of her trust, the gift or her love. The privilege of being her safe harbor in this storm of a world.

because without a shadow of a doubt has this little girl changed me. She shattered me, broke me down to my barest, and she has made me feel more inadequate then any other living human ever could. what a gift that is. to be literally torn into pieces. its really like dying alive. thats the best way i can describe what it feel like. but being able to come out on the other side. reborn a stronger more aware version of myself. what a gift.
in the middle of the night when she rolls over and puts her hand on my face. it could wake me from a dead sleep. that feeling of her palm on my skin is so rare, being that she is so defensive to touch.. she rarely touches anything open palmed.  what a gift.
or when she's not feeling well, the way she clings to me with such desperation like i am the only thing in the world that makes in okay. what a gift.
The way she will look me dead in my eye and smile that beautiful smile that lets me know she wants to play a game. what a gift.
The fact that i was told she would never talk. and she yells AMMA to get my attention at least 5 times a day. The fact that she can communicate her desire for my time. what a gift.
When we are in therapy and sophia is unsure of a new experience. my touch can make all the difference in her success in her task.. being what she needs to learn and grow. what a gift.
Being able to walk a path so untouched, so challenging, so beautiful, so fulfilling. what a gift.

at the end of the day. This little girl gives me so much. everyday. simply by being here and allowing me to love her. she gives me everything. she is the 20lbs that anchors my soul. and everything I am and everything i will ever be i owe to her.

So im okay not getting a mothers day gift, ever... i really am.. her trust and love and the opportunity she affords me to grow.
is priceless.


-happy mothers day to you all
krystal

Spring update

HEY YOU!! long time no see       8-)

So im so sorry that i am just epically failing at keeping this blog up to date but i assure you we have been very very busy bees here at Team Sophia! heres a little taste of what has been going on lately :)

• Her UPSEE and GO TO seat came in WICKED fast and we got them before her birthday! i was in tears they are amazing pieces of equipment!!!! 

• Sophia just turned three last sunday and we had a great little tea party brunch for her with a bunch of her loved ones.

• Sophia also had her very last birth to three appointment with her old therapists and then had her first PT session with her new PT who happens to look like she could be sophia's aunt..

• She got her very first bed: and its a big girl bed at that!!

• And today we had her very first day of school!!!!!!!!! 

• tomorrow we have her dreaded eye exam ..... i have a bad feeling about this issue, mostly because since the day we found out about her "hearing loss" every doctor she's had has made me feel like she might have eye sight issues.. i personally think if anything its a intermittent problem that comes and goes.. but i know she can see.. what i don't know is how well.. so ill admit I've been putting it off. I'm not looking forward to whatever i already know they are going to come up with... uugghh

• i am also working on making a website: that is were the vast majority of my blogging time is going to the creation of our new webpage. I want people to be able to access our story from more then just Facebook. and i want to advocate for PCH and CASK and i want to help other moms who are just lost and overwhelmed. So i am trying to get together a page that houses this blog and also info on pch and the special needs lifestyle in general. so its eating up more of my time then i fought it ever would but I'm so excited about it. 

I have had a lot of blog posts that i have been itching to get out there for everyone but I've only got so many hours i can focus on non sophia activities.. so pllleeeaase bear with me and look out for my new page. Hopefully ill have it up and running by june!! and if it kills me i will find time to blog about the aforementioned major events because each of them has photos and a story that I'm dying to share with you guys! i hope everyone is enjoying spring as much as we are. Sophia LOVES to be outside so its n=been so nice to be able to get her out there!!