Clothes

A year ago yesterday we told everybody we were having two girls. We went in for our 20 week ultrasound and confirmed that they were little ladies. We found out at the previous ultrasound (16 weeks) but the tech wasn't 100 percent sure, so we held off on telling anybody for four weeks until we had confirmation. Jake was pretty surprised and scared at first...he is an only child and had never been around kids, let alone little girls. I have no idea why he was nervous, because the minute he held those little girls, he became a natural. He bought them their first outfits to come home in. Sydney wore pink and Carynne wore blue. Even though they were preemie-sized outfits, they were still too big on them. We brought them home eight months ago today.

Even though we knew we were having girls, we didn't buy a lot of clothes or other girly stuff. But, we were given tons of new outfits as gifts. To this day, their bedroom closet is full of stuff, separated into all of the different sizes and seasons. Gwen and I worked like crazy to get that closet organized. Everything on the top row is still unworn with tags on it. Even some stuff on the bottom shelf never got worn because the girls were so little.

After they died, all of their clean laundry from the dryer got thrown into the crib. It is still sitting in there, waiting to be hung up or put into boxes. I walked in their room on Sunday to get all of their diapers and I just stood there smelling them...missing them. We took all of their diapers and left over formula to the battered women's shelter, but I am just not ready to part with their clothes. I don't know if I'll ever be.

Cincinnati Success!

Just want to send a huge thank you to everybody that joined us in the Cincinnati Walk n Roll for SMA! We had perfect weather for a great cause! It was really inspiring to see so many people come out and support Families of SMA and it motivated us even more to start a walk in Indianapolis next spring. A special thanks to nesties Aubrey and Jenna and their families for coming out! Sorry we lost you guys on trail!

Pictured: Chad (BIL), Gwen (sister), Sophia (niece), Jake, Deanna (friend), me, Amelia with Dora (niece), Patrick (friend), Megan (friend), Sonya (friend), Jess (friend), Amy (friend), Brian (friend), Karen (friend).

For you, sweet babies.

All things beautiful make me think of you two
It brings a rush of feelings and memories of you
Looking in your eyes, you mesmerized, so wonderful and blue
I long to see you one more time, share a story, maybe two
I feel I took our time for granted, not soaking enough of you in
How I should have tickled one more time, just to get another grin
I know you know I love you and how I'm missing you
When you were here your little grin let me know you loved me too
In all our lives we go through things, a little rain must fall
And we sure did, we lost you both, so beautiful and small
If love alone could have saved you, you never would have passed
But love couldn't cure you girlies, the disease it struck so fast
I enjoyed our time together, our memories locked inside my heart
And as long as I have these memories we can never be apart
So sleep your sleep sweet girlies and no longer feel your pain
For knowing you has changed my life, I'll never be the same.

Another note...

Happy Anniversary Jake!
Here's a little flashback...I know it is a yucky picture, but I love it anyway!


It snowed the day we got married. Seriously, snow in late April in Indiana? Since then we've always said that we will have a great story to tell our grandchildren. That makes me kind of sad.

Four years ago today, we never thought we'd be here. But, then again who does? Even though we've had our ups and downs, we are two halves to a whole. Three months ago today, the girls were diagnosed with SMA1. We got the diagnosis at 5:30 on a Friday night and then we were left to drive home and let our heads spin. We didn't get 10 minutes away from the hospital before we both knew what the other person was thinking. Neither of us had to say out loud that we didn't want our girls to live on life support..neither of us believed that that was any kind of 'life' for our sweet girlies. We both just knew.

Sydney

Sydney,
Two months ago today you left us. I love this picture of you because you had just learned how to smile and you were very ready to show off your new talent. It's hard for me to remember a time when you were that little. I remember that you barely had any hair, but you had the sweetest round belly; it made for a great landing pad for kisses! Whenever I think about you, I remember how spunky you were. You wanted to be a part of everything and because of that, you fought naps and bedtime like a champ. Daddy used to have such a hard time getting you to settle down for sleep, but as soon as you came to me, you were calm again.

When you and your sister were still inside of me, we didn't want to tell anybody that we had a name picked out for you, so Aunti Jess nicknamed you Ethel and your sister Bernice. Up until the day you were born, everybody only knew you as Ethel. When Great-Grandma Muriel came to visit you in the hospital after you were born, we told her your name was Sydney. She was so excited to know that we had named you after her home. She even had to make sure that we spelled your name the same way. As you grew, we started to call you Syd-ster...a strange mix between Sydney and Sister because you were such a great sister to Carynne. When I would wake up to get ready for work, I would go into your room and you would be laying there, wide-eyed waiting for me to pick you up and say "Good Morning, Syd-ster." I still can't believe how easy going you both were. How many mommies are lucky enough to have two babies that wake up in the morning (after sleeping through the night) with smiles on their faces? Thank you so much for being such a sweet baby!

I love you my sweet Syd-ster!
Love,
Mommy

One more thing...

Jake sent me this video one day back in December. I was at work and it was so nice to see Rynner in my Inbox!

Carynne

Carynne,
Two months ago today you left us. I want you to know that I remember so many wonderful things about you. You were always so quiet and easy going. This picture is one of only a few pictures where you're making a big facial expression. Usually you were so content to just hang out and watch the world. I remember when I bought that shirt, I thought it would be perfect for you because your daddy was notorious for giving you tons of kisses. I sometimes thought he was kissing off all of the hair around your temples. Right on the side of your head was his favorite place to kiss you.

So, I figured today I would tell a story about you. When I was pregnant with you, you were so very hard to read. You stayed on the left side of my body with your butt in my ribs and you were such a soft mover. When I went into labor, daddy and I had a name picked out for your sister, but we were so indecisive about you. Right after you were born, we took a poll from all of the people in the delivery room. There were 12 medical people in there plus daddy and me. We told everybody they had to vote between Carmen and Carynne and Carynne won overwhelmingly. A lot of people mess up your name. They call you Karen, Cary Anne, Corinne, you name it. But, we know you will always be our Carynne. Everytime your dad opens his phone, he sees a picture of you smiling back at him and he always says "Hi Rynner-bear." We loved calling you Rynn, Rynner, Rynnie, Rynner-bear. We had so many sweet nicknames for you because you were just so easy going.

I love you, my sweet Rynner-bear!
Love,
Mommy

Pearl Jam helps

I went back to work last week and let me tell you, it really stinks! When I was in school people would ask me what I wanted to be when I grew up and I would tell them that I wanted to sit at a computer all day and just design stuff. Well, that's what I do. I sit at a computer and do graphic design stuff all day. This is a job that I used to love. I know that sounds crazy; how many people love their jobs? I did, though. I love my little family of 4 co-workers, I love the atmosphere, I love that I am able to be creative all day. But, this sitting at a computer stuff is kicking my butt!!

I have a really hard time concentrating because I just sit here and go over every little detail of the girls in my head. I think about all of the little routines we used to have. After my first day back to work, I cried during the entire drive home. I took the long way, following the Fall Creek Trail, just so that I could be by myself on the road. I don't know how it is that in the middle of the city, at rush hour, this road is so empty and peaceful. As long as I have worked here, if I have had a rough day, I hop into my car to drive home and turn up Yellow Ledbetter as loud as my ears can handle. I put it on repeat and just glide all the way home. Yellow Ledbetter has been getting A LOT of play the last two weeks!

We are going to Cincinnati this weekend to do a charity run for Families of SMA. I started thinking that the last time Jake and I went to Cincinnati, we were going to a Pearl Jam concert. At the end of the concert, they played Baba O'Reilly and I slipped into my Pearl Jam coma. The kind where the music just sweeps you in and you are instantly in a better place. I need so badly to be in a better place. Being at work has just made me so sad. It will probably drive our car-mates crazy, but I think we'll need to listen to Ten, or Lost Dogs, the entire drive over. Or maybe some solo stuff from Into the Wild? I need Pearl Jam to put me in that better place.

Brook

Ladies in Pink

My Dearest Carynne & Sydney~
I wanted to take a moment to say hello and send you both my love. The past couple days the weather here has been beautiful, and I believe we have you two to thank:-) By now you've probably learned your way around heaven, and it's really starting to show!!! The trees and flowers are in full bloom, and they all remind me of just how beautiful you both are. The pink colors are especially my favorite...they bring me memories of your cute little tutus:-) The bright blue sky reminds me of your eyes too, but there isn't a color in the rainbow that can compare to them. It's bitter-sweet now because there is so much here that I would love for you to see and experience, but I know that what you both see everyday in heaven is far more amazing than anything here on earth. You must be very busy little girlies too because I know there are SOOOO many people here that miss you and feel your presence...I know I feel it everywhere I go...every single day. How is it that two precious babies, like yourselves, can change so many peoples lives?!?! You truly are a gift and an inspiration...

I miss you lots girls, and I love you both with all my heart!!! Keep up the good work with the weather...you know how Aunti Sonya hates the cold!!!

Mariska Hargitay Girlies
Love Aunti Sonya

Hello there!

Hey there pretty girls! I just wanted to stop by and tell you that I was thinking about you today. I miss you!

Love you,

Auntie Jess

"FOREVER"

I was listening to an album preview of Rascal Flatts' new album Unstoppable, it came out last week. I was not prepared for this song because I was listening to it while at work and it took me by surprise. I had to excuse myself for a bathroom break because I was moved to tears! The song forever is such a beautiful song and very fitting for how we all feel about the loss of Sydney and Carynne. It wasn't long enough, but it was long enough for us all to love them so much, and long enough for them to affect so many peoples lives in such a positive way.

The link to the website where you can hear is song is below, as well as the lyrics.

http://www.theboot.com/2009/03/31/rascal-flatts-reveal-new-music/

FOREVER

I miss you so much
your light your smile your wave
and everything about us
but your gone your still here
in my heart and my tears
Yeah you sure left your mark
we were just gettin started

It wasn't long enough
it wasn't long enough together
but it was long enough
yeah it was long enough
to last forever

sometimes i get so mad
i scream, i swear at this
cause this isnt how we planned it
i sit here in a cold moon
prayin, waitin' on you
to run back though that door
to the way it was before you left

it wasnt long enough
it wasnt long enough together
but it was long enough
yeah, it was long enough to last forever

I've been cheated, defeated cant believe that your gone

it wasnt long
it wasnt long enough
it wasnt long enough
it wasnt long enough
no no no
it wasnt long enough
it wasnt long enough together
but it was long enough
yeah it was long enough
to last to last to last forever

no, it wasnt long enough

untitled

Dear Sweet Girlies,
I miss you. I wish the English language made words to explain just how much I miss you, but there aren't any. Maybe it is because a feeling this deep just can't be explained with words alone. I feel my sadness in my body. It beats at my head like a drum all day. I feel like it comes out of every pore on my body. It hides behind my eyes and sneaks up on me unexpectedly. I miss that you weren't with us on Easter. You should have been there letting everybody soak you in and enjoy you.

I went back to work today and I got so sad because the last time I went to work, I got to come home to you. I remember coming home and trying to sneak some smiles out of you before it was time for your bottle. I remember laying on the couch with one of you nestled in the crook of my arm, watching the news. I remember both of you falling asleep on my and daddy's chests because we were just too in love with you to put you in bed. We wanted to hold you and feel your breaths on us.

I wish this sadness would go away. I feel like I have so much to say, but I don't want to say it to you because I want only happy thoughts going to you. So, for now I will just remind you of how much I love you!
Love,
Brook

A letter to the girlies:

Syd and Rynners,

We have so many memories together, yet it seems like so few. Time just flew by from August to February. I can still vividly remember the sequence of events that led me to hearing some of the most awful news in my life. Greg, Nate, and I were shopping and your mommy called me. She asked what I was doing around 6:30 because she wanted all of us to meet at your house. I could tell your mommy was upset and I asked her a few times what was wrong; she wouldn’t say over the phone just that I needed to be at your house later. I have never rushed through a store like I did after that phone call, I was frantic just throwing things in the cart and running to the check out. Knowing now the news your mommy and daddy had for us I think to myself “what an idiot” for being so nosey and wanting to get the information from your mommy over the phone. As I was on my way home to drop of Greg and Nate your Auntie Sonya called in a panic because your mommy and I had been trying to call her, we just knew something wasn’t right. It only took about 20 minutes from your mommy’s phone call to me actually getting to your house, but it seemed to take forever. You girls were coming home from the hospital this day, so I tried to calmly go into your house and at least make sure you both returned from the hospital, whew- ok there you both were. I saw your Aunt Gwen standing in the dining room; it was obvious she had been crying. I saw that she couldn’t even look at your mommy without loosing it and then I saw her look at you two and have to go into the other room sobbing. “What the hell is going on here?” I thought, I was ready to vomit! I’m so sorry your daddy had to choke through the story of your diagnosis and tell us that you were given a life expectancy. I sat there in disbelief as I looked around the room at everyone else, I could see the confusion on everyone’s face. I was sitting next to your mommy while she was holding you Sydney, I had never seen your mommy cry like that, the raw pain and heartbreak. Girlies, I’m sorry you had to see me cry like I did so ugly and hysterical. As I sat there on the couch holding you Sydney I was thinking to myself “this has to be an awful nightmare, wake up! This seriously is not happening right now” “you mean to tell me that this is the point where I start creating our last memories together.” I called your “uncle” Greg and he couldn’t understand me, he kept telling me to breath because he feared I was going to have an asthma attack. His response to the news was “oh my god….no…seriously?….oh god.”

When you girls passed I couldn’t believe it, “wait a minute….the doctors said…..but no it’s only been five weeks!” I was and still am so proud of your mommy and daddy’s strength. I don’t deal well with funerals in general, so I tried my absolute hardest to be strong for you mommy and your Auntie Sonya. I commend Auntie Sonya for being by your mommy’s side and helping take care of your arrangements. It’s good to know that we all have such a strong bond that we can be each other’s rock when we need it. I did decent during your viewing, but I cried start to finish at your funeral, you just looked like two sleeping babies snuggling in the bassinet. I tried so hard to compose myself on my way up to say goodbye to you two for the last time, but it was impossible and the more I tried to hold the grief in the stronger it became. Giving your mommy a hug was what finally broke what small bit of composure I had obtained.

So many people love you and miss you. You have no idea how many people’s lives have changed from your short time here. You made me appreciate the little things and take nothing for granted. You’ve made me a better mother to Nate because I have learned to cherish every moment I am given with him. You’ve made me a better friend because I fully understand just how special a friendship is the way we have all pulled together around your mommy and daddy. I know you are holding hands in heaven and looking over us right now. I know that Nate will never wreck his bike because he has two guardian angels watching over him.

**I have one small favor to ask of you girls. My grandpa got to heaven a little over two weeks before you both did. Can you please check up on him every now and again and give him a kiss for me?

Thank you for being you, so wonderful. I love you both so much!

Things I Remember.....

Girls~

I remember seeing the first picture of you inside Mommy's tummy and my jaw hitting the floor when I counted two of you!!! I remember saying to Mommy and Daddy, "are there two of them in there???" and they said yes, identical twins.

I remember you NEVER kicking for Aunti Sonya!!! You would be kicking up a storm, but as soon as I touched Mommy's belly, you would stop...you were such stinkers. But now I wonder if you were just playing the "fake sleep" game with me and I just didn't know it. It would make sense, because after you were born you played it with us all the time:-)

I remember getting to hold you both at the hospital after you were born. You were so tiny and so beautiful. The joy on Mommy and Daddy's face was priceless. They were so proud you belonged to them and so happy you had come into this world as perfect as you were!!! We were so excited as a "family" to be gaining such precious little girlies too.

I remember getting to feed you, rock you, sing to you and change your diapers too. See, I do those things for a living( I'm a nanny), but I loved every chance I got to do those things with you both.

I remember as you got bigger, Sydney you would smile at me all the time!!! I could always get a grin, a gooo sometimes a fart or two...lol. But Carynne, you didn't think I was as funny as your sister did. It took a while, but right around 4 months you started smiling at me like crazy...and I loved it!!!

I remember Mommy and Daddy taking you to the hospital on New Years Eve because Carynne needed surgery. Aunti Jess and I were out with other friends trying to celebrate, but all we could think about was you guys. It just didn't feel right not being there with you...so, we headed downtown to the hospital and high-fived at midnight in the parking garage.

I remember being in the living room when Mommy and Daddy told us what was going on with you both. I just remember crying...and saying a not so nice word over and over again. Shock and devastation can't even begin to describe how I felt. You were both so tiny and fragile...aren't we as your "family" supposed to protect you and keep you safe???

I remember seeing all the tubes, machines and medicines as they started coming into the house. It definitely was hard to see how much you both were going through, but you were still the most beautiful little girlies ever and I loved getting to help Mommy feed you, snuggle with you and hold your hands on the mat.

I remember getting a few calls from Mommy that changed my life. I felt such sadness when I drove to the hospital after you passed Carynne, that I wasn't sure I'd make it. I felt such guilt at not being what Mommy needed right in that moment, but I just held her and watched your beautiful face...and we waited for Daddy. I remember feeling such deep grief and deep honor when Mommy and Daddy asked me to be with you Sydney in your final moments. You were so beautiful too.

I remember not wanting to leave Mommy's side that entire week after you passed. I'm sure I drove her crazy!!! But I literally couldn't function if I wasn't in her presence...because in her presence, you both were there too.

I remember how I was on January 22nd...the day before you were diagnosed with Werdnig-Hoffman...and I know how I am now. You both have FOREVER changed my life in ways that I can't even explain. You both showed me how precious life is, how beautiful a smile is, how captivating a "gooo" conversation can be with a baby, how small things just don't f*#kin matter when you see two tiny girls having the fight of their life and constantly giving it their all.

I remember your bravery...I remember the light in your eyes...I remember how much I love and miss you...and I will always remember the lessons you taught me.

Mariska Hargitay Girlies

Love Aunti Sonya

Auntie Jess

I'm "auntie" Jess, one of the girlies favorite fake aunts. I've known Brook since high school and we're great friends. I was about 4 1/2 months preggers with my little Nathaniel when we found out Brook was preggers. Brook and I were belly buddies, we shared our first pregnancy experiences. It was cute, I was just a bit further along so I would warn her about what was ahead. Although I only had Nate kicking around in my belly, the girlies would fight and kick each other in Brook's belly!

We would joke that Nate was a little ladies man and that Syndey and Carynne were his girlfriends. We live in the same neighborhood and giggled that he would be the "pimp" of the neighborhood with a girl on each arm. You can see in the picture to the left that we tried to start him early, but he doesn't look very interested in the whole situation. I'm sad that Nate is too little to remember his friends and how wonderful they were. I miss our play dates, my girlie snuggles, playing the "stinky feet" game (Syndey always thought I had the best jokes, Rynners did not find me funny that often). I'm heart broken about the loss of these beautiful little angels. When we were pregnant together I had all of these visions of Nate riding his bike down to Brook and Jake's and asking Auntie Brook if the girls could come out and play. Them going to school, riding the bus together. Maybe even one of the girls being Nate's first kiss. Now I feel guilty in a way that I have Nate and the girls are gone. This isn't how this is supposed to go, these situations like with the girls are supposed to happen to people you don't know not one of your best friends. I was so excited that our children were so close in age, but now it's this double edged sword where Nate does something and I wonder about the girls doing the same thing....what they would be doing now. I don't want Nate to make Brook and Jake sad, but I don't think that is something I can control. I love you Brook and Jake. I love you forever sweet little girlies!

Below is the last picture of I have of Nate and girls together. Taken Christmas 08, baby Santas. (Let me tell you how difficult it was to coordinate 3 infants for a photo shoot...whew!)

A Quick Hello

Hey Everyone~
Brook has been kind enough to add Jess and myself to her blog so that we can also share our thoughts, feelings and memories of Carynne and Sydney. She asked that we give a little info on ourselves as an introduction, so here's a bit about me and my relationship with their family...

My name is Sonya and I've been friends with Brook and Jake for years. Brook and I actually went to high school together, though we didn't really hangout till after, and Jake and I met about 10 years ago at a club in Ohio.....I actually introduced them at a party here in Indy, and they've been together ever sense. I was so excited when they told me they were pregnant...even though they tricked me first;-) and was shocked/ecstatic when they found out it was identical twins!!! I think I saw Brook almost everyday of her pregnancy, and was so thrilled when Jake called and said the girls were finally here!!! Getting to hold them for the first time, and being called "Aunti Sonya" was a memory I'll never forget. I'm really grateful to Brook for giving me the opportunity to share my thoughts/memories of the girls and hopefully you guys will enjoy them too.

Tempting

Lately Jake and I have been annoying the snot out of each other. I have been tempted on several occassions to walk across the room and just slap him. While that temptation has been strong, I have withheld (even though it would be a great way to release tension). I'm kidding a little bit, but seriously we are not dealing very well with each other right now. You see, he is the type of guy that deals with his emotions by putting them as far out of his mind as possible. This means he wants to be distracted by other things 24/7. Whether it is hanging out with friends, or going for a jog, or playing video games 15 hours a day, he is always doing something to fill his time. I, being a typical pisces, want him to be with me 24/7. I know it sounds very needy of me.

I really don't like our therapist. It's not that I dislike her as a person, I just feel like she isn't giving us any advice at all as to how to deal with these types of issues. She is a grief counselor and she sees us separately, but honestly I feel like we need a marriage counselor more than anything. We need to learn how to work better at giving the other person what he/she needs. We also need to learn to be more understanding with each others different grieving processes. Maybe I should just give it some more time...who knows?

On another note, my dad is going for his second round of chemotherapy today. It seems to be going ok. He hasn't felt too nauseous because he is taking some miracle medicine that helps to settle his stomach. He is also taking a lot of painkillers so he is pretty loopy at times, but that's ok. The tumor is big enough that if he takes his shirt off you can see it under his skin and he has lost a lot of weight, but other than that he is regular old Poppy :)

The More the Merrier

For your reading pleasure, I have added Sonya and Jess as authors to this blog. They have lots of memories and feelings to share about the girls so I figured why not keep them all in one place? Hopefully they will give a little intro about themselves. Enjoy!

Dreams

Dear Sweet Girlies,
I have been having some pretty vivid dreams of you the past few days; some good, some not so good. The strange thing is, somebody else is taking care of you while I am watching. It reminds me of how I felt having our in-home nurses here. When they were here there was a part of me that felt like I wasn't doing my job as a mom because I should have been able to take care of you on my own. I know that your needs were beyond what your daddy and I could do on our own, but there are some days when I wish it had just been the four of us at home enjoying our last moments together.

Last night I was laying in bed thinking about you and what you did for us. Wilco was playing in the background and I thought about how you made me want to be a better person. You were and will continue to be a light inside of me. Thank you for making me better. Thank you for putting everything into perspective for me. Thank you for letting me be your mommy.
Love,
Mommy