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