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.