14 Things We Learned in 2014

What a year....

Im Honestly overwhelmed when I think back over ALL of the incredible and difficult things that have happened this year... 

I could give some long winded speech about blessings and progress and honest hard work... But I'm simply and honestly to scatter brained today to get it done. Sophia's been under the weather more this season then any other in her life... needless to say, I've been on mommy overdrive.. and I can't seem to form a good thought today.. However I wouldn't feel complete without some formal reflection of our amazing year.. I decided to countdown the 14 biggest lessons we leaned in this year.. 

14: Life is Unfair: 

No big new there... but at some point or another everyone will have something happen to them that will make them question who they are to the core of their being. on january 30th 2014, Getting Sophia's official diagnosis, did just that for me. It turned me inside out. It marked that point in my life between what was and what will be. It was the single most terrifying and liberating moment I've ever experienced. This year has reshaped me into the women i was intended to become. for that I am so thankful

13: Sometimes there is no"right" way to go...

So many times this year we have had to pick between bad and worse... uncomfortable or unbearable...hard and impossible... sometimes things just aren't okay, and they won't be for a while..... but thats okay..  The trick is recognizing that it is a phase of your life that will teach you a lesson and pass on. If you let them , hard times will stay forever.. you need to be ok with not being okay... before you can get better. You have to be strong enough to weather the storm before it can pass.. I; have learned to be okay in the moments of sheer uncertainty that inevitably come with this life.

12: Love really can't concur all:

It just can't . whoever made up that phrase obviously didn't have real problems. Its not magic, or a cure all.

.... It takes respect, vulnerability, honesty, friendship and communication to even make love work. But assuming LOVE alone will ensure the success of your relationship is pretty much only ensuring failure..... 

11: I can accomplish nearly anything given enough caffeine.

Coffee and I have always been tight. But this year.. my obsession became an addiction. It really does makes my world go round. Coffee, Mmmmm... I should make some now.... i need to work on this, it isn't that good for me... but remember the hard or impossible choices thing... yeah me giving up coffee got filed under impossible and vetoed.....

10: Motherhood causes ADD

I Swear I used to be able to form a full concept in my head.... now its like...

Coffee, Mickey, Mix her miralax,  get her bottle, feed the fish, I HAVE TO CALL XYZ TODAY!!! DO NOT FORGET!! , wait did i make her that bottle?, what time is it, am I wearing a bra? mickey, did i brush my hair yet( touches head ) nope! can't forget to do that before we leave...speaking of leaving do not forget to drop off that letter!! 

I like to call it my motherhood onset ADD....the fact that i can get out this thought all at once is incredible....

09: People suck

08: Some people really-really suck

We are going to just bunch these two together. Every smiling face is not a friend.. and even some friends aren't really friends.. people are curious and they are kind but that doesn't equal a friend....Opening up to people on a one on one level is very hard for me and letting people get to know sophia and be in her life isn't easy for me either.. and I've had so many people this year just let me down in so many ways.... ill just sum it up with some people suck more then others... but a lot of people are just shitty and selfish .. Don't try to hard to understand them, they hardly understand themselves... there are ignorant and intolerant people everywhere. The sooner you accept that the happier you will be.

07: Stress cooking solves almost everything...

Cupcakes, Cookies, Pies, soup, stew..... the more prep the better.. mindless work that gives me the chance to have complete control out of the outcome a given situation.... its a beautiful thing.

06: Goal Setting: Its how you move forward...

...........who knew?! I wish I had listened in the fourth grade...cause its working for me.

05: Do what feels good to you.

No two lives are the same.. don't expect people who aren't living in your life to understand the choices you make. You have to do what feels right to you. despite how crazy it looks to other people and under no circumstances should you make a choice based on the expectations of others.

04: Ask for help.

The weight of sophia diagnosis was crushing , and sometimes still is. But one of the most crucial things I have figured out this year is that I am not expected to carry this load alone. Asking for help is one of the strongest things a person can do. It takes courage to admit that you need a hand to hold or a shoulder to cry on..reaching out for someone else, is WAY harder then sticking your hand in your pocket... but I'm glad i learned how.....

03: I have a talenent and a passion...

 my biggest and most consistant prayer is 2015 will help me bring it to life.. stay tuned!!

02: I am blessed... beyond measure....

I have been given the chance to pioneer something... to blaze a trail.. to set a standard.. All because of this beautiful immeasurable force that is my daughter sophia... She really has given me everything I never knew I always needed... when this year started I was still heavily grieving the loss of the life i had imagined... as i bring this year to a close i have a new perspective on our journey and now that the shock is finally starting to subside... I am able rot refocus my tear soaked eyes on just exactly how beautiful my life is... Simple yet Significant.  I wouldn't want it any other way.

01: We got this.....

I don't think that I will ever be able to appropriately explain the amount of crushing uncertainty that you get when your in a position like ours.... So many innumerable reasons to hang our heads and shuffle our feet... 

I am so proud of the way we have risen to the occasion . The way we have met fear with love and ignorance with education....The way we have not let each other drift off to the edges of this.. we stayed together in the thick of it.. despite arguments and sleepless nights.... bad appointments and meltdowns... despite fear and uncertainty ..despite crushing unrelenting pressure to grow and be more and do more every day.. we stuck together as one unit... not placing blame, or pushing each other away. not stuffing down the ugly parts and covering them with a fake smile.. we have gone into the fire and come out stronger for it..... The theme of this year if i had to pick one would be HOPE... 

I am ending 2014 with one very important thing that was noticeably absent when this year began...

and that thing is hope.

Thank you for your continued support, blessing to you and yours.

Be looking for big things from us in the new year !!!

Counting my blessings

 While I sit here with Sophia this morning after getting my turkey ready for is trip to yummy town , Im reflecting over this past year... 

And I must say I'm damn proud of my team . We have busted out some major goals this year and we are still going strong . It's really easy in the day to day struggle to lose sight of the important things in life. We all do it . But with the path I am walking taking inventory of your gratitude is essential to your mental health . The things I am most grateful for change each year.  So here are the top ten reasons I am thankful for 2014.  I'll try my best not to get too mushy , but this is me we are taking about .

 (Hi , incase we haven't met .. You can call me ms. Emotional..) 

1. Sophia's diagnosis : 

It might seem crazy for me to be thankful for this . But unless you've had to spend half a year thinking you had less then 5 years with your child ... You probubly won't understand the depth of this for me . Not knowing what was wrong with her was excruciating. It was the single hardest part of the first years of her life . The unknown . Hearing that it's permanent, hearing that it's severe, that it will impact her every day of her lite .. Was life changing , it was soul changing . But I would rather know the truth and learn to walk in this new truth with my little family, then have to sit in the dark of the unknown any day .. And for that oppertunity to learn and grow , I am thankful . 

2. My fiancé : 

He is the other half of everything I accomplish . He is the unsung hero of our family . He does what needs to be done. He never NEVER misses. A beat with Sophia . He had grown and adapted to be the most fantastic father to our child . I will never be able to properly express how much I appreciate all he has done for us . And the BEAUTIFUL ring I just got from him doesn't hurt 😉 .. Given the things we have faced this far . I am thankful for his stregth and love . 

3. My teamsophia MVP's : 

 Namely my mom , sister , and bestie of 20+ years Megan . The ridiculous emotional waters they navigate regularly to ensure my sanity ... Would send most people packing . I'm very lucky to have three strong beautiful diverse women to hold me up always . I NEVER have to question the sincerity or loyalty of any of them . Most people are not that lucky . 

4. My handicap parking permit : 

Hate me if you want to , but it is literally the one single perk of having a disabled kid . Priority parking . Nothing profound here . It just makes my life and her life SO much easier ... 

5. the Make-A-Wish foundation : 

The disney world trip that they sent Sophia on was a week of magic and priceless memories for my little family . For seven entire days I got to just be a mom . Not a nurse , pt, ot, coordinator, chef, maid ect . Just a mom , just having fun with her girl . We fed and touched dolphins, met Mickey , ate and shopped without worry . It was exactly what we needed at exactly the right time . I'll never forget it . 

. 

6. My niece and nephew : 

They are the people Sophia will be closest to in this crazy world . My nephew has a heart of gold and my niece already has created a very special bond with Sophia. While they are still so small and innocent it's hard to see , but I can tell they have enough love and stregth to walk along side their cousin through her life . And she will need them . I love them both beyond measure . They are the best and most beautiful parts of my sister.. How could I not ? 

7. My job : 

Although I'm still new and it's not really in my field of study , I'm just so happy to be back in a money making role . I'm glad I can contribute to my financial well being while still bring there in the morning to navigate Sophia's transition to pre k and still be home so sing her to sleep at night . It's a blessing to me , definitely an answered prayer .

8 . Sophia's teacher and 1:1 aid : 

They are literally the BEST thing I could have asked for . Sophia is doing do amazingly well in school and they make such a dedicated and specific effort to ensure that she enjoys herself while still making progress . It gives me so much pride to see her happily amunst her peers . 

9. Sophia's little posse : 

Four specific kids in her class take extra care to be close to her and spend time with her . They try to include her in all of their activities and don't hesitate or see it as odd when she's doing something in a different way . Their innocent and inclusive hearts ... Ohhh how I hope they never change . Sophia and the world need people like that . Bless them . 

10. Myself . 

I don't want to sound like I'm talking myself up here . So I'll keep it short . But I have grown and grown and grown and hurt and cried and gown some more and then just when I thought I couldn't possibly take another step . I grew some more . It's just that the way my mind , body and spirit are changing and evolving to be able to provide a never ending supply of unconditional love to my child and the people in my life has astounded me . I am beyond thankful for my own resilience , discipline , determination and perseverance.  

I really hope that each of you who takes their time and reads this blog , follows our story and cheer Sophia on know you are a member of our team for which I am thankful. It means more then I can say that you are supporting her. Together I hope we can make the world a more grateful place . There's so many reasons to be upset these days . So I am thankful to you all who keep the positive vibes coming out way . Enjoy your day , bless you all and your families ... 

My child is not a bomb...Promise.

My daughter is not a bomb
she's just a kid
I'm not special, got no extra training... I'm a mom

I know all the other stuff the equipment, the adjustments, the way we adapt things, her way of communication may make it seem like it's more than it is...

But I challenge you to look beyond that stuff ...
I challenge you to focus harder slow down and watch our family together.
 I'm just a mom who wants to see her child grow, learn, love and be loved and essentially isn't that what everyone wants for their child?? 

I'm no different..

Equally Sophia wants what everyone wants...
 to be hugged and to be smiled at, to make eye contact, to see you react to her, to hear that you're happy to see her, to play, to eat, to be included, to see beautiful sites, to be part of a group,

She wants to live a life

However not a single one of those things can she do alone . She's got an uphill battle, she needs help, she needs your time, she needs your understanding and she needs your effort.

I guess with time I'm realizing that it's not that she's "different" that really stops her from having those experiences. After 3 1/2 years, building her therapeutic playroom in our home, tens of thousands spend on adaptive equipment her therapies and her medical specialists we realize that we can't do it all and money can't solve this. There's a piece of this that we can't provide .

She needs a community .
she needs a family .
she needs a team .
she needs a foundation.
she needs a place to grow and flourish . 

Got a lot of observers, people that wish her well, but that's not enough.. 

I'm just saying she's not a bomb .....she doesn't need gloves or a back up team. She won't explode or disintegrate. She just needs time and understanding.

Take the time to allow her to get focus on you after you say hello, don't immediately brush her off. Take the time to sit with her, she enjoys your company. Take the time to learn how she plays because she does play games! trust me !
I know it might seem awkward at first but ask her questions. Talk to her. She likes to be spoken to and if you just give her enough time she might respond..
Try looking at it from her perspective....
She reserves the right to be nervous, after all you're big, you do things that she doesn't.

She needs time to feel you out.
Respect her enough to let that happen. Give her time. I know from experience that when you let that happen she will let you in and when she does, you feel like the most special person on earth.

I mean it she's  special and she makes other people feel special too.

I see when people are with other kids more "capable" kids they don't think twice. They engage, they play, they get down on their level they talk to them.
When I see people with my kid.... they hesitate, think about it, they say hi they say she's pretty. Talking about her but never TO her and and then they avoid her like a ticking bomb.

She's a child. She's not a bomb.

I'm sorry if I've given the impression along the way that I gave birth to a china doll.
Is she delicate in certain ways?  yes.
But essentially she's got 10 fingers, 10 toes, one heart, and two eyes that see the world passing her by...

Trust and Tears

So guess who went and became a big girl without permission ?!

Thats right: our own little resident polly pocket....

This week marked a huge accomplishment for this family. 
Sophia has officially transitioned into preschool WITHOUT ME..  
and nobody died.


I know! I'm shocked too.. we survived! It was the hardest thing I have ever done. Before that my daughter has spent every single moment of her life with me, her father, my mother and my sister. ONLY us.. (its like my "circle of trust" and I'm the crazy ex-CIA agent from the meet the fockers movies.. )

Now backing up a bit ; some of you may have read my post about how I was NEVER going to be ok leaving her in a public school system by herself... I assure you I'm not a liar.. ( to be totally honest I had a rather big hiccup with the school board over an incorrect promise and my IEP, but I choose to be understanding rather then to turn it all on its head like I would have been fully within right to do)
Honestly, I didn't expect to be met with such a great team of people. Who were willing to take the time to get to know sophia and cater to her like they do. The fact that I leave her there is a HUGE testament to her one-on-one aide and her preschool teacher.  Her teacher has been tacking early intervention preschool for longer then I've been alive. She's the perfect mix of no nonsense and maternal instinct. The kind of teacher who you swear really has eyes in the back of her head. I got VERY lucky , every para in her class is fantastic and maternal and very perceptive. Her aide is the absolute perfect fit for sophia. I couldn't have picked a better one myself. She's intuitive and proactive. She was actively trying to decipher sophias ways and developing her own little ways to handle sophias needs. It was incredibly reassuring to me to see her in action. I honestly hope I can keep them as a team. ( I'm not sure thats possible but you can bet ill try) and then theres the kids. Oh the kids, they are so heartwarmingly inclusive with sophia. Not-a-one treats her like she's different. Its innocence and beauty and true human nature in the rawest form to see them with her. Its very powerful for me.

Now confession time: When I say I "leave her " in school, what I mean is I leave her in the building without me. In truth i've been sitting out in my car the majority of the time waiting for the sky to come crashing down....... So far it hasn't. The first day I cried the entire time I was out there. I won't be convinced enough to drive away from her for a little while I don't think.  Maybe eventually ill use it as time everyday to go to the gym or to blog. I'm looking forward to when I'm comfortable enough to make use of that time.

I have spent a total of almost 10 weeks (between last school year and the beginning of this one) in class with her and her aide. Training her on all of sophias little quirks and teaching her the ever-evolving ways that sophia communicates her needs.  It felt kind of like letting a stranger read my diary.  This relationship I have with my daughter, my ability to communicate with her without using words. Its a very special and private thing to me. I almost hurt to let go of that control and hand it to someone else. But I did it, because she deserves this.

More then once I was asked "Why bother? you don't even know if she's learning?!." In the back of my mind, in a lazier less motivated corner of my psyche, I asked myself that question almost every day...
The answer is this:
I have no quantifiable way to prove that she is absorbing every lesson. However what I do know is this... I am exposing her to other children, to new experiences and environments. I am giving her that opportunity to develop essential social-emotional skills that she will unquestionably need to get by in life. My home is a very controlled environment. Calm and quiet most of the time and sophia can have what she wants when she wants it at all times, without interruption. Being that she is an only child, its kind of the nature of the beast. That kind of catering can only breed problems. She NEEDS to know how to be a part of a larger group. She NEEDS to know how to at the very least tolerate other children if not eventually interact with them. She deserves the opportunity to be a part of her community.

As much as i would love to, I can't keep her locked in a bubble forever. I have no tower to keep her high above the world and its dangers. In reality, She HAS TO learn how to let other people care for her. Its not healthy for her or for me to have things stay like they were. As nice as it was to have my baby be only mine....

Its time that I let my little butterfly spread her wings.
The cocoon of my love and protection will always be here for her. 
All I need is one call and I would move heaven and earth to be there for her.  

Sophias Wish: The Send Off Party

So I have put off writing about sophia's wish trip because that meant it was really over. I know so silly. But we had like a post disney hang over for a few days. I am sure anyone who has ever done a week in disney can attest to that feeling.Now I'm recharged and ready to go!

I need to start off by saying Make -A -Wish, Give Kids the World and the people at TGIFridays did an absolutely incredible and inspiring job. Incase that gets lost somehow let me say that again. These people are incredible. 

Our Make a Wish celebrations kicked off with a small dinner party. It was sponsored by any resturaunt of our choosing The only rule was it had to be someplace sophia likes or frequents. that narrowed it down considerably. However TGIFridays has been a favorite of our families ever since I was pregnant with her. So it seemed like the most natural choice. I knew the food would be good but I didn't expect their hearts would be so big.

Our Make-a-Wish volunteer team did a great job decorating the section of the ding room they sectioned off for us. All Mickey everywhere. They missed no detail right down to the 4 foot tall Mickey ballon. They even got snow white to come and greet all the kids, Take pictures and sing a song to sophia.  I invited the people who where closest to us and the people who are really my go hard Day one, A one's of Team Sophia. I wish i could have invited everybody. But we were so fortunate to receive so much already, i didn't dare push my luck. 

We got a TON of food. Basically everything on their Appetizer menu on huge platters . It was absolutely delicious and we shared a meal and some good laughs with the people who saw us through the hardest of our times. It was such a great opportunity. Life gets so busy and its not often that you get the chance to just sit down and appreciate people who have helped you. I also think the value of sharing a meal and having time to connect face to face with people you care about is so important in this age of technological over acheivment.

As if that wasn't enough the people the work at that particular restaurant went above and beyond. They presented sophia with an enormous beach tote full of TGIFridays gear along with a princess backpack that was stuffed to the gills with princess gear , books, sticks, a snow white dress up set with tiara, dolls just anything a little princess could want. They even signed a card and everyone wrote something kind on it. Every employee it seemed found their way over to say hello to sophia and talk to us a bit about her trip. when i took sophia to the ladies room every customer smiled or waved at her. It wasn't forced either. You could see it in their faces they were all very happy to be a part of making sophia's party great for her. They were all patient and understanding of her lack of attentiveness and didn't let it slow them down or throw them off. It was just so surprising. I didn't expect anything except food from them. The level of generosity that we encountered... was absolutely incredible. 

  

At that party we were presented with out official trip itinerary , our flight information and our debit card stocked with spending money for the week. I couldn't have asked for a better evening. 

After that we only had two days to wait to embark on our very first family vacation! We went home giddy like a bunch of five year olds. That night made it real. This was REALLY happening .

Dear Daddy: a letter from Sophia

on this day many years ago your mother did me an incredible favor......
She brought into this world a man whom would change my entire life.

You have meant so much to me over the last six (almost seven) years.  You have been a friend, you have been a provider, a protector, a lover, my peace even sometimes my favorite pain in the butt.
I have had the honor of watching you grow over our time together from a rough hard "street type"  to a kind compassionate protective man and father. I just want you to know for better or worse it has been an absolute pleasure to love you. I thank you for walking this life with me and for allowing me room to grow within the walls of your love.
That being said I have decided to write to you what I think sophia would say to you today ...
if only she knew how.

Hi Daddy, Happy Birthday!!!!

Ive loved you since before we even met. did you know that? I could always tell it was you talking at me in mommies tummy. I tried my best to kick for you so knew I could hear you. The first day we met; i could tell how much you loved me. I could see it in the wrinkles next to your eyes when you smile really big. I could feel it dropping from your tears of joy. I could hear it in the way you got chocked up just saying hello to me for the first time. The love you have for me just over flowed.

Now I know I'm not what you and mommy originally signed up for. But I promise I picked you for a reason daddy. I'm sorry that it hasn't always been so easy on you.  But I want you to know your doing an amazing job. I wasn't really sure what to expect of a dad; your my first one you know... but you are just what I imagined a dad would be. Your just that right mix of fiercely protective and fun. I feel safe with you always, and I know you will know just exactly how to make me smile when i need it.

I also just want you to know I'm sorry that you can't protect me from all the bad things in this world. I see you trying. I see the look in your eyes when a doctor starts talking about new tests. I see you twitch in your seat during my therapy when I cry or yell because a new thing is hard for me. I hear you talking to me and praying over me when I sleep. I hear you when every time I'm sick with something you say "give it to me bitty, ill be sick for you". I hear your prayers to god that my life get easier.  I love you so much daddy for wanting to save me, for wanting to take on my struggles for me. but daddy.. its the only way for me to learn and grow, i think you know that already though don't you.....

So my next thank you is for allowing me to grow and learn. I know how easy it would be for you to keep me locked away all for yourself. I know as a dad it is your first instinct to protect me. and I love you for it. But I love you more for holding that urge and allowing me to explore my world. I know its not always easy on you.

Also thank you for watching after mommy. She tries so hard. I wish I could help her, I wish I could tell her to relax that she's doing just fine, that I'm happy. But since I can't. Thank you for making sure she knows how special she is. I don't think people tell her that enough. You guys probably don't realize this.... but I've seen you guys' love pull you through some seriously hard times. Without you I don't know if mommy would have been able to be okay with our new life.  Those nights were you let her cry herself to sleep while you rubbed her head. All the days that you hugged her hard enough to hold her broken pieces together. Thank you for loving her daddy. She's so special to me and she needs you .

Do you want to know what makes me the happiest?

The way you carry me, like nothing in the world means more. The way you run with me around the playground so I can feel the wind in my hair.  The way you snatch me out of mommies arms at your job and show me off to everyone there. Like I am your pride and joy. I love you for never trying to make me quiet in a store when I'm having a bad day. I love you for wiping the drool off my chin with your shirt or hand without thinking twice about it grossing out other people.  I love you for making it to every major appointment and every parents day in preschool. Some people think I don't notice. But I do daddy and you know that.

Thank you for having faith in my ability to overcome in my own way, on my own time, from day one. But also thank you for not standing in the way of people who are trying to help me reach my highest potential. I know its not easy to trust them, but thank you for trying.

I love you for loving me daddy. You didn't have to. You could have left me with mommy; she would have eventually figured it out like all the other mommies without help do. But thank you for being strong enough to love me. Thank you for having courage enough to love me with your whole being.

I hope the way I smile and scrunch my shoulders every time you say "BITTY GIRL" lets you know your my best friend and my fun.
I hope the way I reach for you lets you know I love seeing you and look forward to our time.
I hope the way I snuggle into your chest and stay there lets you know I feel safe with you.
I hope the way I only fall asleep with you on extra bad days shows you that I need you.

I hope that someday, daddy, I can tell you these things myself with my own voice. But until then.

Happy birthday Daddy ;
Thank you for loving us and working so hard for us.

I envy ALS and the Ice Bucket-ers

gasp....

WTF did this chick just say??? I AM IN NO WAY SAYING ALS IS NOT A GREAT CAUSE TO DONATE TO OR SPREAD AWARENESS FOR. 

BECAUSE IT IS. 

ALS is a heart breaking awful disease that we need to find a cure for. That much is unquestionable. But I'm jealous. Let me try and explain myself. Im going to back up a bit here.

Do you know what an orphan disease is? Because I know I didn't.

Until my chid was diagnosed with one.

An orphan disease is a disease that the medical community as a whole has turned their backs on. Pontocerabellar hypoplasia and CASK gene mutation/deletion are so rare that really none is even trying to research them. Let alone find a cure.

I have really LOVED watching everyone come together to get some exposure and some money for an amazing cause.  I wish with my entire being that I could start something similar to this for our children. But what would be the point? There is no place to donate to . There is nobody trying to figure this out. One mom started a dance challenge in honor of rett syndrome and the hope that our kids will someday dance. I have been tagged and will make a silly video with sophia soon. Because I'm all for spreading awareness of any kind. But I'm Sad i can't start a PCH challenge that will make an impact on the face of the disease.

Between those of us with children impacted with PCH and CASK we have managed to find a hand full of clinics and researchers who are making small moves on an individual basis. Trying to drum up some interest in the international medical community.  But As a whole there is no "find a cure" movement for our children. and its heartbreaking.

Her nuro-genetics doctor told me on the day she was diagnosed that even SHE couldn't find anyone who was leading the reaserch . So i don't have any major revelations on this one folks. Im still working on finding the silver lining to this particular rain cloud in my conscience. But I just wanted to let you guys know.

So that is why I'm jealous of ALS and all the ice bucket victems around the country. Because if I could I would think up some equally cool challenge and start a viral sensation of my own.
Maybe I still will. Bur as usual i search for ways to make PCH and CASK relevant in the lives of the unaffected. That is my personal struggle.

I LOVED watching you guys all go crazy drowning yourselves with ice cold water. good times. but every smile I get from it also makes me a little sad.

I just wanted to share that I hope I can challenge you all someday.

Shoes or No Shoes ? That is the question.

I wonder what it is about shoes that sophia hates so much....

Maybe its genetic (lol, I crack myself up)  I also dislike shoes..
Yes I am a woman who doesn't give two __ about shoes..
We do exist. 
Honestly, I much prefer to be barefoot.

I force her to wear shoes when she is doing her Physical Therapy exersizes or is in her adaptive equipment and at school. But other then that NEVER do I really put them on her.. Why bother?
Why spend extra money and effort on something I know for a fact she will just kick off or pull off? Then I have to chase it around ensuring it doesn't get lost? Bump that....
I used to care, but that was before she figured out how to get them off.

I've figured something out about the world as a result of her shoe-lessness.
People really, REALLY pay attention to a kids feet, it's kinda weird.

Over the past year or so I get asked at least a few times a week by well mannered clerks at checkouts and registers if she's lost them somewhere in the store. I know they are trying to be helpful so I always smile and say we left them in the car. I never really thought twice about it until I saw a young man in a wheelchair a short time ago, without shoes on, only socks.
(which by the way sophia wears everywhere because I do have some manners)
But none asked him why he wasn't wearing shoes or if he had lost them.. noone , but me i guess, seemed to even pay attention to it.

It got me to thinking, why does everyone care so much about HER feet then??
Why all the un-wanted attention about shoes?
Then it clicked. Im not going to lie it was a shameful revelation, mostly because it took another young person with an obvious disability for me to think about it.
She doesn't LOOK disabled . She has no wheelchair...yet...if ever.

THATS why all the stares and questions about where her shoes are. Everyone is amazed that I have a toddler who's not running amuck or totting behind me. They are probably wondering what I did to get her to sit in my arms peacefully all the way around Walmart or the grocery store without so much as one word.( little do they know its her SPD)
 She's of size to be speaking and walking. Her physical characteristics are proportionate, she's tiny, but there are no obvious physical characteristics no limb abnormalities. To a passer by she probably looks like a typical small girl. without shoes.  I guess people are just making a simple observation and I'm being sensitive. No surprise there.

At first I laughed in spite of myself, and moved on. Then my never ending though process uprooted an interesting observation.

Maybe I'm wrong. Maybe she is getting too big to be in public everyday without shoes. After all she's not a baby anymore. There will come a day when she will need to wear shoes. Just because she doesn't like them doesn't mean she doesn't have to do it. Its not about offending people, I assure you I don't care. Its just that she's growing up. its time. Every single person on earth does stuff everyday they don't like. I don't get to go barefoot to run errands ( nor would I, ....gross)
But it's a matter of principle. Its time that I start to open up her protective bubble. Its time that I start treating her like a three year old girl.

She is not my "baby" anymore. She's a preschooler.

 Nobody really ever grows outside of the demand placed on them. Most demands are self imposed or imposed by society. But for sophia, her demands are imposed by me. I fully expect her to do some form of walking at some point in her life. For that she will need shoes. It will unquestionably become a dis-service that I protect her from all the little things she doesn't like. Its going to be a slow process for both of us. but its time we start.

Sophia Needs to wear shoes. Its time.
But first we need go shoe shopping.
Looks like she's not the only one doing stuff she'd rather not do.

At what age did you guys start to make your kids wear shoes everywhere? Was it because they were walking, or because you thought they should? Leave answers in the comment section below!!!

Look for our new website, debuting September 2014.!!!


ps. shoes is an odd word.

13 inches to My Heart

Recently Sophia has learned to do something.
This is something I never ever imagined would happen. It was something that I secretly didn't like to watch other kids do, because it was a reminder of my own lacking.

I didn't tell anyone outside my immediate family about it , there was no excited  Facebook post proclaiming her new ability. (even a broken clock is right twice a day. )
 I was afraid it was just chance or luck the first time it happened. There are certain things i have just accepted as truth because well its just easier then holding out hope in some areas...

but much to my utter amazement it continues ! 

I bet your asking yourself what did she do.... ?!

the answer may seem rather simple to you...... She reached for me. thats it.

You know how at about 7-9 months maybe even before that , kids start to reach up for their moms?whenever mom approaches they look up , smile and reach out their arms?
Well its something sophia never did. It never emerged, much like all of her other milestones it was severely delayed.I'm still not sure if or what milestones she will hit or when.
So when anything new happens, its HUGE for us.

It shows that her brain is growing , she is making connections, she is learning. New skills are the only goalposts i have to gauge her on. Its like a ray of hope sent from above. Another dose of mommy motivation for me to keep at it. To continue working her body through the motions everyday. To keep putting her in her adaptive equipment. Not to give up or give in. Its black and white proof that what i am doing everyday matters.

Its my validation..

It literally melts me, breaks my heart in the best way.Fills me with pride . She makes me feel like the luckiest one on the planet. She does it for her father too (usually when she wants to be saved from me).

She has Sensory Processing Disorder, meaning that lights, sounds, noises, textures, and certain environments can be extremely overwhelming for sophia.  So as a small baby she didn't reach out for anything.. AT ALL. not toys, not her bottle, not us.. nothing. it was heart breaking to watch and realize.. that your child is literally afraid of everything....and it pissed me off , like most other things about her condition.. I resented it so severely. To this day we still have mountains worth of work to do in the SPD department. BUT i will say she is interacting with her bottle a bit, Plays with a very specific set of stuffed toys and blankets and now i can proudly say SHE REACHES FOR US TOO !!!

She's doing it, She's winning this fight. I don't know how she is beating the odds, but my god she IS..
I just can't tell everyone how proud I am to be able to say this. Its so easy to sit in your my misery, to believe whole hardly that the sky is always on its way down.
But thank god for this little girl.
She is they only person in my life that can't speak with words, yet she always knows exactly how to get the right message to my soul. She always knows the exact moment i need some hope or a sign the most.
Never have I ever doubted that she was meant to be mine. Our connection is so strong that I swear I have loved her before, over the course of a thousand lifetimes. Like she has always been mine.

Some people can go their entire existence and not feel 1/10th of the love that sophia shows me. She gives me everything without even knowing she's doing it. I am so blessed to be allowd such pure love. When she looks up at me and in that split second realizes its me. She smiles a huge open mouth smile. kicks her legs wildly. and then it happens..

She extends her two small arms reaches about thirteen beautiful inches straight to my heart .

                                               (a few weeks back at a GI Appt )

Selecting Sophia's wish

It took me almost 6 weeks to decide what to put through as a request for Sophia's Make-A-Wish. 

 And honestly it was a hardest six weeks that I've had in a really long time. You would think the brainstorming for an all-expenses-paid trip would be the opportunity of a lifetime . The chance to let your mind run free and open up your dreams. 

But for me it was just another really hard reminder of the fact Sophia can't communicate her wants to the world. I couldn't tell you if she would have more fun on a snow-covered mountain or in Jamaica or in Italy or in Australia I couldn't even begin to fathom where Sophia would want to go. And it broke my heart. 

Then I got so mad , so very mad at myself for being so upset and for even allowing myself to be emotional over something that is supposed to be a blessing. This is supposed to be the best thing that's happened To us in a long time. 

it's supposed to be a really exciting time for my family and all I could find the strength to do was be upset. What's worse is I was upset about things that were inevitable, I was upset about things that I had already dealt with, I was upset about things that I had already conquered and yet somehow because of this Make-A-Wish trip it was like the first day of her diagnosis all over again .  

And I thought long and hard about that about how ironic it was that I was being given opportunity anyone else would do just about anything for and yet the way it affected me was so negative. 

They say to do your research they tell you to look up other families that have gone on trips . They tell you to let your children dream with their heart.  But because We had to make this choice for her I was trying to dream with my heart but my heart was kind of broken. 

The obvious choice with Make-A-Wish is Disney World but initially I wasn't ready and I'm still not sure that I am not ready to go there and see all of these kids taking it in and being so amazed by the magic on having Sophia be miserable having Sophia be over heated, having Sophia be confused or overwhelmed in a place supposed to be the happiest place on earth for kids. I was worried that I wasn't going to be able to take that, but I would have to take carrying my screaming daughter out of Disney World because she's so overwhelmed and overheated and unable to be a part of that environment it would be the final straw.  

So I pretty much put Disney at the very bottom of my list and begin to brainstorm other areas of United States and I thought she would enjoy . 

I wanted to go do San Diego California because I think it's beautiful there the weather is perfect I wanted to do Lake George because it's gorgeous there and it's exactly my kind of vacation but neither one of those places were for Sophia there was nothing there for her. The harder I tried to get away from Disney the more I ended up hurting myself because the more and more I realize that there's nothing for Sophia anywhere . No matter where we are she still not going to want to participate in anything so it's totally irrelevant and nonsensical for me to fly her all the way across the country to California for a trip that she's literally not going to be able to comprehend. 

Eventually we ended up going back to the Disney World idea. I had two meetings with my Make-A-Wish team before I made up my mind as to what I wanted to do I just wasn't sure and I wasn't ready. 

I'm still not sure that we made the right decision but I'm sure were going make the best of it. 

If anyone knows Sophia they know that Mickey Mouse is her main man the sun rises and sets with Mickey Mouse in this house. He is Sophia's whole universe so taking her anywhere besides Disney World made no sense . 

At the end of the day I just had to swallow my fear and accept the fact that Sophie is going to do Disney Sophia's way . Much like everything else in our life our vacation will look a little different than yours but it won't be any less enjoyable. 

it's just something I need to really get my head around that different is okay and as much as I preach it to you guys I still don't have it. I still don't believe it everyday and it's a process.  

My own personal challenge as of late has been to not let fear be my driving motivation in my decisions it's really a struggle for me I was really honestly surprised by how much strife this blessing brought to my world . 

But I'm proud of myself for making the decision that I made. 

I'm proud of myself for giving into Disney and for just going for it. Because since I was five years old I have wanted to go to Disney World. Every little kid wants to go to Disney. Hell, the little kid inside of all of us still wants to go to Disney.  Even if you've already been, It's the most magical place ever . 

So in the end it wasn't  California, it wasn't Lake George it wasn't some international dream vacation.. It was the land of the mouse.

 

I truly believe that if Sophia could understand the concept of Disney World and could understand what was going on that would unequivocally be her choice,  to go see Mickey Mouse.  To go see were Mickey Mouse was born to go see where it all starte. Seriously if anyone knows her they know Mickey Mouse is her whole thing so I'm pretty excited to be able to take her to wear it all started. 

 We met with the wish grantors submitted our official wish and found out about six weeks later that we were approved for our trip to Disney World were going in September will be staying at a place called give kids the world Village. 

it's a village dedicated entirely to kids with serious complicated medical disorders and their families so that they can have an at-home experience away from home near all of Florida's main attractions, so will be 10 minutes from everything we get tickets to all the major parks.  A seven-day six night all expense paid vacation to Florida where will go to Disney's Magic Kingdom, Animal kingdom, Epcot,  Universal Studios, Disneys Hollywood studios and seaworld  . Even going to finish the week off with Epcots food and wine festival and then Mickey's not so scary Halloween party. I'm really excited for the opportunity to be able to get away for a week. 

To be able to just enjoy my daughter and my man and to be able to just be a family and to not have to worry about prescriptions and therapies and adaptive equipment and making sure that her diet is just right, no making sure that all the little pieces fall into place so that I can have a productive week. Literally just get to throw my hands up in the air be a mom enjoy my daughter see her smile and have fun. 

The wish grantors turned it around for me they're amazing the woman looked at me and she said "listen just because you're going to Disney doesn't mean you have to do Disney everyone else's way there's nobody that is going to be standing there waiting for you at every park checking on whether or not you come on time and whether or not you're doing everything you should do the whole point is for you to get away and enjoy being a family don't overthink it.  Don't think yourself out of enjoying something that's supposed to be an amazing experience for you and your family." 

 Thats exactly what I was doing just overthinking it. Sometimes, not even sometimes all the time I need to learn how to separate Sophia from her diagnosis. She still a three-year-old little girl who loves Mickey Mouse and shame on me for discounting that. Honestly shame on me for even letting myself go there anymore I'm so much stronger than that weak minded mentality, the oh my God what-ifs... I'm so much stronger then that . It's not like I'm going to be with her alone her father will be there with us all week, we will be enjoying it as a family making the best of it as a family. For me that's the most important part and the only thing that I needed to know.

And looking back on the whole process I can't even tell you guys how excited I am to be able to take my family to such a magical place and to be able to just embrace it and enjoy it and laugh, just laugh so hard it hurts and the smile so much that at the end of the day our cheeks and our gums hurt from it . I can't wait because since I gave birth to Sophie we may have had A day like that, but we haven't gotten more than one at a time because there's work and responsibilities, the world is out there and we have to tend to it. can't hide from it. So I'm just so overjoyed at the opportunity to be able to truly just absorb a week as a "normal" family doing something "normal" as stupid as that N-word sounds to me... 

I need it.. I literally crave this experience and I can't wait to just make these memories as a family . 

SIX WEEKS TO GO !!! That's 42 days😉

I have a confession .....

Hello Everyone, i have a few confessions to make:

First let me apologize for my shotty writing over the past few months. I have had  A LOT going on and it made me unsure as to what to say to you all. Its very important to me that i am authentic and not emotionally enraged and unstable in what i put out there.
So sometimes i need to just be silent and figure out what i really want to say.

I have been working on transforming my blog into a full blown web page (slowly) because feel as if i whine a lot on here and thats not what i set out to do. So i am forming something a little more direct. While i will always be honest and raw like i have been its time to move forward with the tone of my writing. I took a few weeks to gather my mind and i think I'm ready to do that.

Yesterday I went back and re read my earlier posts i realized something.
Its REALLY easy to play both sides of this coin but, its not fair that i do it so much. 
When it comes to self reflection i try to be as honest as possible. Some days I'm super mom taking on the world , other days I'm the victim and i can't get out of my own way...
i finally understand that you can't be the victim and the hero in the same story.
.. its time to make a choice.

So i decided to be neither. I don't need to be one or the other, I'm not a character in the story at all... That is why i was so confused and couldn't gain perspective the past few months..
 Because i am the author. I am making the calls here I am creating this life. I have to stop letting things happen to me and then pretend to be a victim of circumstance. Yes this is hard, yes it sucks sometimes... but its the only life I'm going to get so I might as well get over it. stop hiding behind it. find a way to make it work no matter what.

I owe that much to sophia, I owe that much to myself.

so i guess this is my way of saying sorry for being a flake, sorry for being a mellow dramatic know it all  drama queen In my writing and i am aiming to be better.

i know that i have every right to vent, but i have the chance to really reach people on this platform and i don't feel like I've been doing my cause justice.  But that changes today. I will still update everyone on sophia. But the worst is now behind us.. Its time that we move into the next season of sophias life.

The mystery and darkness are gone. We know what we are fighting. We know what we are doing. We have hope. We have each other. I have everything i NEED, I am thankful.

i really look forward to sharing some great news with you all in the next few posts . make a wish updates, sophias PT  and OT progress, Back to school stuff. lots of exciting things going on!!

but now I'm off to fight with my iPhone, i need to update the photos on here but i can't seem to upload photos onto my laptop.. EVER .
wish me luck :)

Wishing Upon a Star

Last fall when we were told by sophias neurologist that she suspected sophia had pontocerrabellar hypoplasia i began to do my own online research ....

little tip : never do your own research, unless your ready for all kinds of terrifying answers.

Every single thing i came across said most kids with pch don't live to see their 20's .....

i was destroyed... 

but we have already been over that part, when i did finally pulled my head out of the mud I got to thinking about wether or not I was fully taking advantage of all that WAS actually available to her and all the strengths she did have and i had a realization. 

I was not. I was so busy being upset that I never noticed how selfishly shut down I had become.  I thought about the other parents in the world who's kids were REALLY ill , like in pain , in the hospital. i needed to be thankful that i had a chance to fight and that i could keep her for as long as her body and mind aloud. at least she didn't have to fight an active invasion on her body or cancer. 

i vividly remember Cory was granted a wish from the make a wish foundation ( he had bone cancer) to meet the red hot chili peppers. ( it was the 90's, they were still huge) they drove him to NYC in a limo her meet the band and had a great time.. i often think of him on that trip and how happy he must have been.

Then that day while thinking of my cousin and my uncle it hit me ... MAKE A WISH!!!! 

oh em gee MAKE A WISH!!! oh yes, thats right.... i just o.m.g'd.... and ill likely do it again. 

I jumped on the computer right away and pulled up their website. I Needed to know EXACTLY what were the qualifications a kid need to meet to be eligible.. 

I was just told sophia has a shortened life expectancy was I not?!?!?! 

Much to my extreme pleasure I found this:

”We grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.”

Well shit, thats US!! I wasn't sure if it was just kids with cancer or not. and its most definitely NOT.

but at the same time stuff like this just doesn't happen to people like me. So half of me was like 

yeah ohhkaayy your going to get the make a wish foundation involved.. don't hold your breath...

But it was in black and white any child with a life threatening condition.. I had to try. 

Worst they can do is say NO right? 

I filled out the online referal form explaining everything i knew about sophias pch. A week or so later i got a call from a very kind woman who took some more in depth info on the diagnosis and I gave them all of her doctors information. They would contact her medical team from there to confirm that she in fact did have what i said she has. We had just sent out the blood work to get a definitive diagnosis. So on the off chance that it would come back positive, i just went for it. 

As of January 30th i still hadn't heard from the people at make-a-wish . But I did hear from her doctors.

She was confirmed to have sponaneous CASK gene mutation that caused her PCH. there you have it folks. we officially have a life threatning condition. Again i was destroyed.. but we have also been over that..

The only silver lining to her diagnosis was that i knew we were eligible for a wish now. I KNOW we are we just HAVE to be.. my baby deserves a wish .....  In the mean time while i waited to hear from make a wish I kept trying to broach the subject with Luis. Every single time I would bring it up I got the same answer... 

stop talking about make a wish please.. lets not get too happy start planning stuff only to be disappointed. he's a don't count your chickens till they hatch kinda guy... so i tucked it away and tried to be patient..

two months later right in the middle of a shit day i get a missed call and a voicemail from the lady at make a wish who initially did my intake questions.. my stomach dropped cause like i said it was already a fantastically shitty day.. and getting denied our wish would have been the cherry on top.. 

i didn't say anything to anyone and just played the message. she threw me off bad too because she had a somber tone.. " i just wanted to let you know we heard back from your doctors, and , we have decided that she IS ELIGABLE for a wish...." the rest was all charlie brown whomp whomp whomp.. 

I happened to be standing at the kitchen table at the time.. so i started laughing and banging on the table and jump pin up and down ... my mom and luis both come running out of other rooms looking at me like ' this chick finally lost it .. she's crazy' i couldn't make words so i just played the voicemail on speaker and tossed the phone over to them... luis' face was priceless... ill never forget his reaction. 

he had been pushing it down away and aside for months refusing to get his hopes up .. so for me it was like confirmation of my faith.. but for him it was like a huge gift bestowed all at once..

we could make one of four kinds of wishes. 

wish to have..

wish to meet..

wish to give...

wish to go...

for the first time in the longest three years of our life we had a real hardcore reason to smile. like really fucking smile. the kind of smiles other people can't see without smiling.  We were smiling and laughing and hugging each other. The amont of joy that moment brought us.. was overwhelming.  amazingly perfectly beautifully overwhelming and so so so so nice to feel. 

you guys have to understand that when something this extreme comes into your life EVERYTHING changes... for three years everyday we have had to make some type of sacrifice to make ends meet or to keep up your schedules and jobs and responsibilities. Never have we ever been away as a family. Never had luis or I ever been on a actually vacation in our lives. living on one income is a trick and travel isn't part of the equation. thats for sure.  not only that but we are both always so worn down and strung out that we don't enjoy each other like we want to. 

The chance to get to just enjoy sophia as a child as our daughter. to be able to just laugh and enjoy dayS together without obligation or interruption.  NO work, preschool, cooking, cleaning,  therapists, care plans, adaptive equipment schedules, doctors visits, phone calls, paperwork....  for three years straight we juggle all of this everyday. and have little time and energy at the end of the day for ourselves. 

I can't even explain to you appropriately what a relief it is to have this to look forward to. To finally have SOMETHING to look forward to. It is the light at the end of the tunnel for us right now. 

I will say we obviously picked a wish trip.. we need time as a family to just be a family. 

If your are on my Facebook you know what we choose. I will tell you all about it in tomorrows post. too much story for one post  :) 

hope everyone is enjoying the summer. my laptop battery is done for so sorry for the delay in posting lately and for the delay with my webpage designing but I'm on borrowed computer time. ill have my baby back soon and posting will resume as it used to be.

thanks for keeping up with us. <3

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