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😉