We aren't that different

Okay guys, I really am so sorry, I wanted to be able to post everyday until I got you guys caught up to present day. but being  full time special needs mom and having a full time job has proven to be a bt much and leaves me with little time to be able to make a solid entry everyday. This story is just too important to me to mess up or half ass. So im sorry if I have left you hanging or if maybe you are loosing interest.

As things continued to progress I started school at night from 5:45 to 10:00 pm four nights a week. I had two classes twice a week. It was definitely an adjustment. I had tests and homework every week multiple times a week. This program is no joke. They dropped me head first into the medical world. I have a solid education behind me having graduated from high school in the accelerated graduation program. I also went to school to be a massage therapist ( that's another story)  I have always pushed myself to do my best academically an I didn't plan to be lax now because I had a child.
So each day during naptime and any time I could get in between appointments with Sophia's pediatrician weekly to check on her weight, and her audiologist once every other week or so and her teacher for the hearing impaired who was coming to my house once a week... I was very busy. ( on top of cooking and cleaning and being an adult) It was definitely an adjustment for me. However one thing became very clear , very fast. I could be a working mommy or I could be an educated mommy but I was not going to be able to pull off being a working educated mommy. there just were not enough hours in the day. So I was most definitely going to be a stay at home mom for the next year and some change while I finish my program.

This was going to be a new adjustment for me. Knowing for sure I wasn't going to work for up to and over a year ( I JUST started working again last week.. so it was two years and a few months that I stayed home)I was excited to be able to spend that much time with my daughter. especially seeing as how she needed me so much. I have had a job ever since I was old enough to be able to earn a paycheck. I am a hard worker by nature. Its part of my backwoods upbringing. It was just engrained in me . you work long and hard to make your way in the world, I NEVER expected anyone else to handle my issues. So staying home and handing over all financial earning power to my fiancé was a very hard thing for me to do. Don't get me wrong I trusted him to the ends of the earth, hes always busted his ass to give me everything I need. Never has a day gone by since ive meet him when I have been left in need of something. He has provided for us entirely. But he is only one person. He also wants to be home with his family, I am not going to expect him to work 3 jobs so that I can sit home either...

So I had to develop some new goals. A new structure and purpose to my days other then just studying. i had a few appointments a week, class four nights a week and a whole lot of nothing in between. So i began to look into what was available for help to us. YES i DO mean STATE ASSISTANCE.. there i said it. ive put the welfare bomb on the table. i wanted to know what i had to do in order to get the help that I DAMNED WELL DESERVED... im not one person on food stamps because im too lazy to work, or a mom of 17 kids who has each and every one on state and whos rent is 45 bucks... Im a young mother who had a child with a responsible plan in place. A person who was totally self reliant up until i found out my daughter was going to have to struggle and fight for her health each day. My plans were tossed into oncoming traffic the day i had my baby. there is ABSOLUTLY NO SHAME in my game at all. I was going to do what ever little bit that i could to help out something on my table and to make sure i have a car that drives me and Sophia to and from her appointments. go ahead judge away.. i couldn't care less if you think less of me because of it. I have always and always will make the best of every bad situation and exhaust every option available to me if need be.

So i began looking into everything, section 8, health insurance, food stamps, wic, income based housing, social security disability , cash assistance.. and my head was swimming for days as i tried to figure out what we were eligible for. Section 8 is so exhausted and the lines are so long that the state had pretty much frozen all lists until further notice, income based housing is all so ghetto that i wouldn't live there or such a joke that if i had that kind of income i would never look for state help.. it was frustrating but rent, was obviously something we would have to figure out on ur own.. WIC was a joke and a half, i ried to go a few time after i had Sophia. even though i was breast feeding. Every little bit counts. It was ok at first, a blow to the ego but when it come down to the line you do what the fuck has to be done to get it done. again judge away if  that makes you feel better.. but after going a handful of time i had to stop. they just didn't seem to get the concept of sophias weigt issues or that it was being addressed.. i was always being given backhanded advice like" well be sure to eat enough cause you don't want to be trying to make yourself thinner and have that effect your milk" because u have to see a nutritionist each time you go to an appointment there.by my last appointment i was one deep breath away from exploding " bitch im damn near 200 lbs, i just had a baby 5 months ago, im not trying to be a damned swimsuit model.. the girl eats like a fucking piglet, she just wont gain weight!!!" it was stressfull, and made me feel like i was less. id go to the store early in the day when i used my WIC checks because you never want to run into anyone you know when your paying with them. Don't ask me why it made me feel dirty, it just did. now i look back and see how foolish it was. and if i ever need them again ill use them with pride because i pay taxes always have, so does sophias father, so does my mother, my sister, my friends.. and as far as im concerned all of them wouldn't mind helping us out, so that's what the system is designed for. I did end up qualifying for snap(foodstamps) and health insurance for the three of us. which is a huge relief, considering the insurance we had previously had costed us almost a quarter o luis' check each week. The husky health program is the only reason my daughter has been able to receive the caliber of care that she so desperately needs. I am forever grateful to the state of Connecticut and each and every person who grumbles about their taxes taken out of their check. Each on of you makes that possible for her. I really do realize that. Im sure her medical costs to date must be in the tens of thousands....

I also figured out that because of her hearing loss Sophia might qualify for social security disability. The whole process was scary and long al SOOOOOOOOOOO involved.. I started to compile research on the application process and the never ending information that was needed. it was gong to take some time, but i was determined to get her EVERYTHING that was available to her at any cost. If i was being cornered into not working then damn it i was going to find some way to provide for her every need.

You may be wondering why i decided to talk about this of al things.. something so personal as my money. well its as easy as this. i don't have any shame on how i am making this all work. this shit is not easy.. just think of your own financial life at 25.. now take away half of your monthly income.. what do you pay, what gets cut off??  can you still do your nails and eyebrows? how much gas money is left? o shit, sallys birthday is next week can you afford to buy her a gift? and you almost forgot, your friends all go out to dinner once a month, do you have 50 bucks to spend that wastefully? ....
im sure 89 percent of you would be just as fucked as i was. I had just enough to cover the essentials like rent and my car expenses.. but things like food money and disposable income.. gone.. i had to do something.. i was dropped off in a tornado with my "life plan" and had to make it work.
Its also the reason why when so many people would be going out and doing this or that and maybe invited me and i said i couldn't or maybe you just stopped bothering to try because im never available.. most often it wasn't that i didn't have time.. it was probably because i didn't have the cash..   

Being a special needs parent is hard as hell, not one part of your day goes  by without extra effort. But being a part of the "normal world" almost becomes harder too. Its like EVERYTHING in my life is so impossibly hard and so intense and so deep that im not sure how to relate to people anymore.. I don't have light conversation topics.. i don't have time to watch realty tv or the news so i cant keep up with current events either.
Not to mention being able to maintain a relationship through all of this stress about sophias health, and money , and my new classes. its enough to test ANY relationship..im proud of the way we heald it together under pressure. i plan to dedicate a whole blog just to my amazing man and our relationship. im very proud of us. we have had every reason to go our separate ways. Instead we keep an open honest relationship and friendship. This is all part of the underbelly of this story. The stuff i consider to be "secret" or "dirty". Am i proud and happy about it, no. but am i ashamed of it? absolutely not. and sometimes silence is the same as support. So being so quite about my mans to making ends meet started as just me keeping my business private but ended up being silent encouragement for the few who are lucky enough to be able to support their families without help, yet still go out of their way to talk shit on social medial about "WELFARE MOMS" well news flash bitches... some of us welfare moms used to look just like you.. so be careful how quickly you judge because you are one single unfortunate turn of events away from being me. So nest time you judge a mom of a screaming kid who's in her pajamas at Wal-Mart, or you see some tired looking pregnant girl with her wic checks in line.. don't roll your eyes or avoid them , don't go out of your way to make a show of how inconvenienced you are by their sad sorry little lives.. just remember.. your job, your husband , your health ... any day at any point in time one of them or all of them could be taken from you.. and then how many months would it take before you were in line next to those very same people who you used to look down on.

Not everyone is a deadbeat, some of us try harder in one day then others will all month.. don't be so quick to judge ... thanks for taking to time to read my story. i love you all for sharing this with me...

-Krystal-

From Manageable to Mayhem

Hello everyone im so sorry ive been away for so many days.. I started a new job and im still adjusting to our new schedule...

ok so we left off at the place were I was emotionally about Sophia's hearing aids and the first fitting for ear molds. Sophias story gets a little complicated from here so ill try my best not to loose anybody.

At this point Sophia is about four months old and we are going in for weigh checks and regular pediatric appointments. However its right about this point that Sophia's father and I notice Sophia not meeting milestones that are normal for this age. But everyone develops differently and we know shes not hearing things right.. so we don't dwell on it very much.
At the pediatricians office there are two nurses. one is an older very maternal woman named joan and a younger Puerto Rican woman named Maria.( turns out these two are going to become a big part of my life.  and the first members on TEAMSOPHIA)
 Right from the very beginning I was emotional about Sophia's hearing tests. After she failed the first screening we tried it no lie like 15 times in the office and more then once I left upset because she kept failing. Right off the bat Joan was there for us, to give us hugs and encouraging words. She would hook us up with free samples and she had an immediate love for Sophia that just made me and Luis very very happy with her as Sophia's nurse. Her support and help was what motivated me to get into the medical field. I want to be able to help other people like that.
The trust we had built up with our pediatric team over Sophia's hearing issues was quickly tested when they started to become concerned with Sophia's weight gain and head circumference. She was getting longer and fell within normal limits for her height. But her weight as beginning to fall off of the curve she was originally on and her head circumference was pretty much a straight line.. she wasn't on the charts at all anymore.. on one hand I trusted them and had them behind us as help with Sophia's hearing issues.. But now her doctor is beginning to resemble a witch hunter like she was searching for shit to tell me was wrong. Again I got upset and defensive with her.. and Luis was 5 steps ahead of me already thinking about new doctors for Sophia's. I wasn't ready to give up on breast feeding. so we decided to start cereal and baby foods and see if that impacted her weight at all. and we adopted a wait and see method for her head circumference. mostly because I refused to deal with it.
in that one appointment at Sophia's four month check up we discussed hearing aids, weight issues, formula, baby food, taking Sophia to have her eyes looked at ( because hearng issues and vision issues are often closely linked), and possibly seeing a neurologist or neurosurgeon if her head circumference didn't start catching up. our heads were absolutely spinning. true to form Joan and Maria swept into the room gave Sophia their love and a few shots and sent us on our way with instructions to call should I need to talk or had questions.

This is when things went from manageable to mayhem.....What I had left out  for the sake of getting to the point was in order to obtain the prescription for the hearing aids we had to see a cardiologist and a ear nose and throat specialist. just incase, to rule out other possible causes of hearing loss. so just to keep track ( this will be fun by the end) Sophia by four months old has already seen
- Pediatrics
- Audiology at ccmc (X5)
- Cardiology
- Otorhinolaryngology
- Audiology at soundbridge
- Birth to 3 (ongoing weekly appointments with her hearing impaired teacher)

PLUS let us not forget that I am a human, so all the normal new mom stuff was happening too. I was trying to deal with me new body, my new baby, learning her queues and wants , working on her schedule, my new classes that were starting any day.... and all the insecurities, hassles and aggravation that come along with all of those new things. Plus the people I loved were still living their lives and going through their own issues and needed me in their own ways and it was hard for me to have to pull back from people I cared about. People who I wanted to be able to help. it was beginning to feel isolating. it was a lot. I was overwhelmed and started to feel like maybe god got confused and set me into the wrong life. Because I was pretty convinced I wasn't strong enough to deal with this, and its not like I was going to sign onto Facebook with a status update...

" my daughters health is deteriorating in front my face, my life is falling out from under my feet i'm not sure if I trust that there is a god in the sky and most days i'm to afraid to look into my own heart.. because honestly I might not survive what I find there" ..

(it took two solid years before I was comfortable enough to share this with everyone, and it took some convincing..)

Looking back its amazing to me just how many times I felt like I hit my wall. Just how many days I woke up feeling like I couldn't do this.. and how every day since then I have woken up and found a way to not only do this but be good at it.. hell some days i'm even bold enough to say that i'm kicking some serious ass at this living life with a special needs baby thing..

but back when all of this was going on I was beginning to go numb to it... as a defense. to just become unaware of how much she wasn't doing. So that I could focus on enhancing the things she could do. because not everyone is good at everything.. I just figured she was going to be a bit behind.
We were developing a new way of life. I was totally off the grid of " my life plan" I was supposed to go back to work full time and we were going to move to a nicer place and I had all these plans when I found out I was pregnant. Now we had to work on a whole new plan. Along with dodge what seemed to be a doctor with a hard on for "guessing" that something "might " be wrong because "often times this happens" it was just too much.. and it was testing my positive outlook I managed to find on her hearing loss...

hearing aids I could handle, this was a whole new scary ballgame..
like I said, this is when things went from manageable to mayhem.


love you all thinks for reading!!!
ill try to make sure I post at least a little something everyday!
-K

(below photos of Sophia and I when she was about 4-5 months old, on a daytrip with daddy to the forest park zoo, I have been going to since I was her age)

Authers Notes

I thought we would take a break from Sophia's story before I round the next corner. in order for me to just get a something out there that I have been wanting to say, but haven't found a place for yet.

Why call this  called how to breathe??
I choose this title for a very good reason....
Sophia (god willing) does not have any respiratory aspects to her condition...
 I am using this as a title because some days, hell, most days, its all I am sure that im doing right...breathing that is...
Also, there is nobody walking that can tell me what is right for my child except for me. similarly my experience will be different and unique from that of all other parents special needs or not. everyone's struggle is different and intense in different ways.
 I will not and cannot try on any level try to explain to you guys where that little ever-burning flame of strength within me comes from, I don't know how it is that after everyday when I have felt like I cant move on, I wake up and smile and find a way to love the life I was given.
Being her mother is not something I consciously do, I don't feel like an inspiration, or an example, I feel like a mom. my instinct to love and protect her is deep and reflexive. I don't know any other way to be. I am fiercely in love with her. and I am fiercely determined to fight for her. Its like breathing to me.. and now I know why no one words could ever tell me how to do this, be a mom of a child with special needs because we all are living this life the same way. By faith. With deep fierce reflexive instincts to our children, and most importantly... one single deep calming breath at a time...

So I guess that's why I titled my blog how to breathe... because no one needs to be told how to breathe... its something you just do above all else regardless of al other things... and that's how deep a reflex my love and instincts are for my daughter. Above all, regardless of all other things, I will be  there to fight for her, love her, and fill any void in her life so that she always has a one hundred percent chance of thriving.

for me its the same as breathing.

-K&Co.

  

Our new path

Along with the diagnosis of bilateral hearing loss we also got a referral to Connecticuts early intervention group called birth to three. I was given 3 choices of facilities dealing with hearing impared children. Two of the three taught sign language and only one focused on spoken words, with NO reliance on sign language ... I was 100 % against my child using sign as her way of communication.. Not because there is something wrong with sign. Just because I refused to lower my expectations of my daughter simply because she needed hearing aids. They would correct her ability to hear therefore she will be able to lean words! So we selected our  B-3 provider to be CREC Soundbridge. 

The first time we went to Soundbridge was to meet with the audiologist who would be following Sophia, the director of the Soundbridge program , my service coordinator and Sophia's teacher for the hearing impaired ( the last two titles were the same woman wearing two hats) . It was intimidating for sure. I tried my best to stay open minded. 

Since the night I got Sophia's diagnosis to this day was like 2 weeks in between. In those two weeks I found a healthy headspace about Sophia and her new path. I made the choice not to let this stop anything. All of life's obstacles are only as hard to overcome as u decide they will be. I decided that this would measly be one aspect of my child's life and I will handle it with great care and respect. I also decided that I would not let this define her.  She wasn't going to be a walking talking hearing aid. She's a little girl who can still live a full life.. At this point I still had full hope of her walking, talking, playing sports or an instrument in school. I had no reason not to think she was going to be just like everyone else, only with a little help from hearing aides. 

We fitted Sophie for her new ear molds and made an appointments to do more hearing tests... 

 when it came time to select hearind aide colors they offered me hearing aides in skin tones to try and blend it in, make it less noticeable ... 

Something about that was so offensive to me.! I was a lot of things when I found out Sophia had hearing loss. I was scared of the questions she would ask " mommy why do I have to be different" "why don't they let me play" I was nervous that I wouldn't use them right ( I didn't know a damn thing about hearing aides before this) I was scared of what this would mean for her future. Would she find love, would she have a best friend, will she be ashamed? That last question was the one that hit me that hardest. I NEVER WANT HER TO BE ASHAMED, ever. I don't ever want her to look in the mirror and hate what she sees. With that though I built a whole attitude towards Sophia and her hearing loss. 

We will not hide from it. We will not run from it. We will not hide it from the world. We will CELEBRATE it! We will embrace it. We will treat it as though it were as normal as a stubbed toe . This is not a disability, it doesn't make her any less able. I won't let it. I convinced myself that as long as we have the right attitude and work hard enough she will be right at the place she is ment to be .

So with that in my heart and playing over in my mind, we choose bright baby pink hearing aides witn clear sparkling ear molds . She's a little girl. I will treat this like any other item she wears. It must be cute, girly and above all never hidden . I will raise her to answer questions with pride and dignity. To ignore ignorance and to be proud of who she is. " what's wrong with your ears?!" She will say "nothing I heard that question just fine, have a nice day" . 

I had a very important revaluation in the Soundbridge office that day. I will not allow my family to lay down and be victims. I won't allow us to be put in a corner, nobody puts my baby in a corner or a box. Just because its called a disability doesn't mean I have to treat it that way. There is no rule book on how to raise a child with hearing loss. So I'm not letting it change my plans. I'm more motivated to succeed in school and in life. That day with the simple offer of skin toned hearing aides I snapped out of my zombie like state and made the choice to take control of this new thing in my life, I realized i had power over it.  I also realized that if I didn't start now right at the start with a healthy attitude, then Sophia would likely never have a positive look on it either. I had to pave the way for my baby. I am her trailblazer and I can't ever forget that. It all starts with me. 

I will get cut, burned, beaten and scared making this path for my beautiful baby. It will exhaust every once of my willpower. It will make me question everything I have ever known to be right and true. But I will do it anyways. I will do it with a greatful heart and a peaceful soul. 

This is my family's path. We walk a path that we carve ourselves. It is a road never traveled. It is a lonely dark and cold place to be sometimes. But when the sun does shine here. It shines in breathtakingly beautiful facets That have never been seen before. For that is the hidden blessing in our struggle. when we do get a glimpse of Sophia getting something for the first time. Or when she looks right at me and says "AMMA!" The pride and joy I feel in my heart explodes into a thousand tiny little pieces of love that always pour down my cheeks. 

This life is hard. But I have the blessing of knowing true love, in a form many people will never be blessed enough to experience. 

Truly unconditional love that endures all hardships. 

D day

The day of Sophia's audiology appointment came up fast. I'm pretty sure I threw up at least 3 times that morning, I was so incredibly nervous. We made our way into the children's hospital for the very first time, it seemed very unreal to me.

The testing to be preformed was called an ABR test The auditory brainstem response (ABR) is a test that Needs to be preformed while Sophia is totally naturally asleep. (At this point she is 3 months old and sleeps whenever she damn well pleases... ) but what's better then that is they stick u in a small room with a bunch of machines and hospital smells and then they dim the light and say "ok how long till she's asleep? " and between me being so nervous and tense and Luis being so nervous and aggravated by the circumstance  Sophia was a hungry agitated mess.. So I tried everything and then let Luis take a turn trying everything we could think of to get her to sleep... FINALLY 35 min later she falls asleep and the audiologist returns and says " ok now I need to place these electrodes on her head" 

I thought I was going to kill him dead right there... After I spend 40 minuets trying to get my baby to sleep you wanna mess withe her fucking head?!?!? ( you should know Sophia has always been a VERY light sleeper, just like her mommy) and just like clock work he puts on the first electrode and she wakes up..... At that point I just threw my hands up and said I give up I'm rescheduling for later in the day on another day and we left. All the stress and tension building up to that for nothing... And we did this 3 more times.. I kid you not, 4 times total of going in getting her to sleep and have her wake up before we got the test done.. The whole set up is insane... Kids under 6 months have to be asleep without and sedatives for a total of an hour and some change.. Sophie to this day will only nap 30-45 min at best, so we were fighting an uphill battle no matter what. 

Finally one very kind audiologist agreed to stay after hours and preform the test durning Sophia's natural nap time (around 430). Luis had to be at work so I had my mother come with me to the appointment for moral support. By now I'm a pro and I have a battle plan. We get there and I have Sophia purposely hungry and sleepy. It's about 415 when we arrive and I have the audiologist place the electrodes on her head first and tie the leads up into a knot in this back of her head. Then I walk right back out to the car and sit in the backseat with Sophia breast feeding in my arms, and I have my mother drive in circles around the parking lot ( we're in Glastonbury at the Ccmc offices there) . Works like an absolute charm as soon as her belly is full she drifts to sleep. I walk back thru the building with her still latched onto my breast asleep and shamelessly march right up to the front desk and say ok let's do this.... Lol really it was a sight to see... 

My joy was short lived... We start off the test right were she woke up last time. ((((She has baby ear plugs in that are attached to a tube that sends sounds into her ears, the sounds are then interpreted in the brain and as a result there is a change in her brain activity so essentially that's how they measure hearing loss, how does your brain interpret the sound the computer plays..)))) I'm holding her and I can hear 80% of the sounds that are being played into Sophia's ears and she wasn't even twitching, didn't seem bothered at all, at first I was proud like look at my baby go ! I try so Hard to understand what is on the computer screen, buts its just a bunch of curved lines on a grid that i cant figure out so i try to focus on my baby Sleeping like a champ, then it hit me like a Mac truck on the freeway..... 

If my light sleeper isn't moving or bothered by these big sounds that me and my mom can hear then she must not be hearing them !  Tears silently flowed down my face as I quietly fell apart. Each and every noise was like a red hot poker being shoved into my stomach. 40 minuets dragged by like it was 40 years..

When Sophia began to move around and wake up we removed all of the wires she was attached to and the audiologist excused herself from the room. My mother gave my hand a reassuring squeeze as we waited for her to return. I was expecting to leave and get a call in a few days telling me what they found. Instead when she returned she was holding a small plastic box. She set it aside and sat down facing us. With a big breath in she looked me right in the eye and ripped my heart out.... 

"Sophia has what we call bilateral sensorineural hearing loss. She has a mild to moderate loss in her left ear and a moderately severe loss in her right ear. She has a hard time with high pitches and very low tones... Mid range sounds she can hear just fine which is why she responds to voices and sounds however Sophia is not hearing all of what is being said. Her type of hearing loss can be helped with the use of hearing aids".... And she grabs her little plastic box opens it and faces it to me..

All the while I'm frozen back on the 'Sophia has' part if her sentence stuck frozen in my nightmare, everything I have been trying so hard to keep out if my mind was just put on the table. For the first of what will be many times I swallow hard and dry my face and turn to the box of hearing aids. Looking at them as if they are a Tolkien of my misfortune.. I hated them, immediately wanted to look away. Instead I listened nodded and signed . I just did whatever I had to do in order to get out of that building. 

When I got to the car I got into the back seat with Sophia , curled her up into my arms and cried.... Not the silent polite movie cry. I mean loud ugly faced I don't care who sees or hears me crying....  I loaded Sophia into her cars eat and sat there for a little while longer not speaking to my mother or Sophia just crying, I had two missed calls from Luis, a broken heart and a million questions. But I could not muster enough strength to hold my daughters hand and cry. Thinking about all the things she will have to deal with growing up with hearing loss, the rude people the mean kids at school... 

I felt I had failed her, and that my body had failed me.. Something that I have not been able to shake since that rainy car ride home...

I called Luis and told him we were on our way , i didn't k now what to tell him. He was at work working alone and in no position to hear this.. Shit I was in No position to explain it.  But when he came up to the car and saw my face I didn't need words..he knew.

That night inlaid Sophia down for bed a waited. Waited for my other halftone come home for. Work so I could explain What happened that afternoon. After I told him everything I was told we just sat there in the couch for a while , not talking just holding each other and trying our best not to let our fear flood out out hope.

 But that night in the wee hours of the morning, fear won, we were terrified of this new world in which we had to protect our baby girl. Afraid of what was ahead. Afraid to let go of what was  now behind us. Just afraid.

 I'm not ashamed to admit it , I'm sure he wouldn't be either. 

That was D day 

The day my Life changed forever

The day  my daughter was  first diagnosed 

Thanks for reading !

K*

791 Stitches

Sophia's three month well baby exam came around, I was one hundred percent breast feeding and Sophia was still an all around "typical"child. She was begining to fall behind in weight and head circumference but nothing alarming just yet. Sophia failed the hearing test again(which was no surprise) on the right side and I was given the information to see audiology at Connecticut children's medical center (Ccmc). This is the first in MANY medical referrals I will receive. I was so annoyed ! Silly right, in retrospect I laugh at myself, being irritated by ONE single appointment. Poor nieve little me......
Meanwhile ,I have a 3month old baby girl and have just returned to work from my extended maternity leave.( I stopped working at 8 months, being on my feet 6 to 8 hours a day was impossible. My fiancé picked up an extra job so I could be home longer)  In my absence new hires were made and I was simply not happy there anymore. Being a new mom made me want to be able to provide a stable future for my daughter. So one night after work Luis and I get to talking and make the choice that I am going to start school. I will go at night while he is at work and Sophia is sleeping in my mothers care.
That's right : 3 month old baby, full time job and full time student ..... Again in retrospect I laugh.. Because this was the smartest/hardest/craziest thing I'd ever decided to do. I choose a medical assisting program offered at a local vocational institute. I figured the medical field is a pretty guaranteed job. I had no idea at the time that by the time I finished school I will have spent so much time in hospitals and with doctors that if I never see one again it will be too soon. (My life is heavily laced with irony.  u can laugh, I certainly do)

The major thing I want to convey about this period of our lives it that it is the last time I remember before things got so messy. I guess you could say this is the last point in time I can remember that we were "normal" or that sophia wasn't behind or diagnosed. She was still a precious baby girl who could grow up to be anything she wanted.I still pictured us frosting cookies and hanging Christmas decorations. I still day dreamt of Luis chasing Sophia at the park, bribing her for little sweet kisses. In my mind i pictured all the things pregnant moms thought about, prom, manicures, play dates, shopping for cloths and teaching her how to wear mascara .My nights weren't yet full of concern and worry that the daylight always seems to keep away . It's honestly a hard thing for me to dwell on. I don't often reminisce about Sophia's early months of life simly because it hurts to much to think about. I can't handle the thoughts of when we were still so full of nieve joy. Once you accept that certain things are just not a part of your life it's easier to move on from them. So the less I think about it, the easier it is to move on through today.
 It seems to me like things must happen for a reason. Because a week or so after I made the choice to go back to go back to school I was put in an uncomftorble position at work and I choose ( with Luis' encouragement) to resign from my position. I planned on looking for another job, really I did, I swear!  But Sophia had her audiology appointment coming up and I wanted a week or so of down time. Kinda a calm before the storm . That weekend before her hearing test was the last time in my life I ever had REAL hope that my baby would grow up and lead a normal life, hell it's the last time remember feeling like ANYTHING in my life was normal.
And that was 791 days ago ( two years and two months.... Not that I'm counting , seriously I don't but I just did the math) . Thats 791 mornings that I have woken up feeling like I'm living in some awful  freaky Friday spinoff . 791 days that I have had to dig deep and find a reason to smile. Each day gets better, it never really gets easier. Time doesn't fix everything , no matter what everyone says it just doesn't .

791 stitches later.... My heart is still broken.

K*
 

( sorry if I knew how to add a photo of bitty baby Sophia I would, it's my second day ill get it )

Pregnancy and The Delivery

I still remember exactly the way it felt when she moved inside my belly for the first time. I was at work (as a bagel maker) and I was making the rounds with the coffee pot. I turned the corner to go into the kitchen and BOOM clear as a lightning strike I felt her kick..... The whole world stopped and I froze dead in my tracks ( dropping and smashing the coffee pot ) . Tears immediately flowed from my eyes and I have never felt alone a day since .. I've always been a hopeless romantic but I never knew love could be so all consuming until the day I felt that I wasn't alone in the world, that I had a little life to grow and protect. How someone so small can make your heart grow to be so big still amazes me. 

Sophia Krystina Soto was born on a chilly April afternoon at 3:41 after six hour of pretty easy labor (4cm dilated for two weeks and epidural 45 min after being admitted)  she was a healthy 7 pounds. she came into the world a day after her due date with no complications got a great apgar score and breast fed within an hour of delivery also without any issues. I was on cloud 9 (for the first and last time in my life).This little bump I had been carrying around with me and talking and singing to was in my arms looking right at my face. I've never been to heaven and I've never witnessed Devine intervention. But I will say looking back in that moment when I looked into her face for the first time It felt like god had placed his hand on my soul and transferred to me strength, fierce determination and perseverance. 

The nurses and doctors all congratulated me on such an amazing delivery, one nurse said it was the easiest she's done. I later said to my mother " who knows, I've never been good at anything ever a day in my life.... Maybe I'm ment to be a mom, like maybe that's what I'm good at" little did I know how hard I had hit the nail head with that one... 

They later whisked her away for all the stuff they do in the nursery. It was then that she failed the hearing screen in her right ear. I was told not to worry that this is fairly common with babies who are delivered quickly. Something about secretions and not being squeezed long enough in the birth canal. We were discharged on time and told to follow up with our pedi. Our first 3 months passed in a blur of sleepless nights and baby vomit. She continued to "refer" aka fail her hearing screens and I was told we needed to see a pediatric audiologist. And that is when all hell broke lose . ....

That covers months 0-3 I'm going to try to put the entire medical backstory up. It will take a few days. This was the easiest and least emotional part . Again thanks for reading our story!!

Peace love and mickey 

K*

Things you must know

Hello,
My name is Krystal Anderson I am a 25 year old mother of a beautiful two and a half year old girl Sophia. She is how I measure myself these days. I'm nothing without her.
Most of your know me in person, some of you may not. Either way none of you know me now. Now that I have changed. Now that I have been changed.
There are a few things you must know about me....
1. I'm doing this blog for me. As a form a release, so it won't always be pretty or cheery
2. I'm a horrible speller, but if I don't know I always spell it how it sounds. Bare with me :)
3. Grammar ..... Ha! Ain't nobody got time for that.
4. This is me heart cracked open for the world to see, please be kind to it.
5. I'm a potty mouth , my blog is for adults be advised..

Now that we have that out of the way.. I would like to say thanks for reading, comeback often and please feel free to comment. My life leaves me out of the loop a lot of the time so I love feedback!

My family is small but tight for sure, I'm blessed to have each and every one of their crazy asses in my life . They are the most vital members of #teamsophia without whom I wouldn't have made it this far.  The love of my life Luis soto is the father of my little miracle baby. We have come through so much together and I can't picture my life without him in it.

These are the most important things you need to know about me. Other then of course everything there is to know about my blessing Sophia. But that's for another post.

Thanks for reading, I'm officially a blogger!

Peace, love and coffee

K*