Well, first, let me say the response to our raffle was great! We raised $161 for Families of SMA but, because Jake and I like things in twos, we're going to round that up to an even $200 donation! Thank you so much for all of your support! The work that FSMA does is amazing!

I know, I know...stop chatting and start spilling the beans!

Ok, the winner is...

#30, Theresa Smith! Yay! Theresa is a mom from the SMA community and I have loved getting to know her through e-mail! Congrats Theresa :)

If you haven't already, don't forget to sing up for our Raffle! There's only one day left until we draw names and announce the big winner! A huge thanks to those of you who have already entered...I'm pretty excited to see who wins this as a certain someone from Pennsylvania keeps increases her chances at winning (I'm side-eyeing you Sara) ha!

Also, stay tuned after Thanksgiving for another exciting FSMA fundraising announcement!

With the holidays fast approaching I'm sure you're all busy thinking of ways to make your home warm and cozy. Well, we're here to help by partnering with CSN Stores. This online collection of over 200 stores offers tons of great products! Need to spruce up the living room? Check out their selection of contemporary coffee tables. Need some help in the baking department? See what their kitchen selection has to offer.

I know you're probably wondering why I'm so passionate about the variety of items CSN Stores has to offer...well, they have teamed up with us to raffle a $50 gift certificate to one lucky winner and all of the proceeds will go to Families of Spinal Muscular Atrophy! Here's how this works...just go to Paypal and send a dollar for each raffle ticket you would like to bapritchett[at]gmail.com (you can send more than one dollar at a time, but each dollar will result in one entry). We will run the raffle until 5 p.m. EST on Wednesday, November 17. From there, I will log each entry into a drawing and the winner will receive the $50 gift certificate to CSN Stores!

Enter as often as you like by sending your donations via paypal to bapritchett[at]gmail.com. When choosing how to send the funds, check personal and then gift to make sure Paypal fees aren't deducted!

Don't forget, all funds go to FSMA, which is a great organization that helps families dealing with Spinal Muscular Atrophy!

Things have been pretty busy for us lately, which means I haven't been able to update in quite a while! Thanks to Jess for posting her song below to help keep things updated around here!

I've made a decision...for the last year and a half, this blog has been primarily about grief but, I feel like it needs to take a new direction. I feel like I need to start working more on SMA awareness and support. I just think that changing things up would be the best way to honor the girls.

But, before I get to all of that, I wanted to give an update on what Jake and I have been doing. In August, my wonderful sister nominated me for mother of the Year through the Indiana March of Dimes. I was one of 10 finalists and Jake, me, my family and friends attended a fancy pants dinner where we got to learn all about the 10 finalists and their amazing stories. There were so many inspiring women there and it was very nice to be able to connect with such strong people!

Also in August, Jake and I celebrated the girls' second birthdays by volunteering at Riley Hospital for Children. This hospital is amazing and the experience we had there when the girls were patients was very positive (despite the negative reason for being there). On their birthday, jake and I stayed very busy making puppy pillows that the patients get to take home with them. It is a great comfort measure and we both left feeling so good about hopefully impacting the children in a positive way.

In September, my dad lost his battle with pancreatic cancer. He was such a fighter and an inspiration. It was sad, but interesting, to see him go through his fight...it made me really reflect on the differences in dying and death between him and the girls. While it was heartbreaking to see him go, I am forever thankful for all that he taught me, even in those final days.

And now we're on to November. Things are starting to settle down for us and we're really hoping for an uneventful winter. I know the holidays will be difficult because the girls aren't with us, but we've really learned how to hold onto each other for strength and take each new feeling of sadness and deal with it in a constructive way. Thanks so much for sticking with us and reading along with us as we continue on this journey! We are forever indebted to our family, friends and you for all of the love and support we have received.

I haven't written in a very long time. I am ashamed.

But today has been different somehow. Today, missing the girls hit me like a ton of bricks. It is hard to describe, but all of a sudden, I just felt so lost. I felt so broken. Usually I can pinpoint what sets me off and brings these feelings to me, but today I don't know what has done it. The constant ache that sits in the back of my heart for them somehow jumped to the front and shoved every other thought and feeling out of me. It is consuming me and I just don't know where to go with it.

It's strange; I have gone through over a year of therapy trying to relearn how to live my life and yet these moments still stop me in my tracks. And while it hurts so so bad, there is almost a comfort inside of me too. I'm comforted to know that I'm not forgetting them and that I still miss them and I still hurt for them. But most of all, I still love them.

Jake's grandpa died almost two weeks ago. Richard was a good man. A very good man. He was the quintessential Hoosier. Born and raised on the farm, high school basketball star, married the homecoming queen, and lived a quiet, peaceful, giving life. He was everything the obituary said, and more, but for some reason, those black letters on the paper hurt me again. He was preceded in death by his great-granddaughters, Sydney and Carynne.

I was at Target last night picking up a card to give to Jake for our anniversary and nothing seemed appropriate. I could have gone funny and picked the one that talked about him remote-hogging and me cover-stealing; I could have gone serious with the 'yin to my yang' mushiness; I could have picked a million different words to tell him on this day, but none of them fit. So I went simple and picked one with two octopi holding hands with the inside saying I still love to hold his hand. He thought it was cute, but it did make us wonder if there will ever be a card that fits us.

Where is the card that says 'Thanks for dragging me out of bed when all I wanted to do for the last year was disappear into the mattress'? Or the card that says 'I can't believe I just yelled at you about butter, but please know I'm not mad at you and I'm not mad at the butter, I just don't know how to express myself'? Maybe a card that says 'I am in a mental fog, but you make a great fog horn'?

The truth is there isn't a card for us and I hope there is never a market for cards for people like us. Five years ago when we said our vows, I think we were both hoping to be just another ordinary couple that got to exchange ordinary cards on ordinary anniversaries; we never thought we'd be here. Some days we still feel numb about where we are in our lives. We still struggle with how we got here and how we'll make it to tomorrow. I guess the best I can tell him is that I don't know how we'll make it, but I still love holding hands with him and I know that makes the journey a lot easier!

On this blog I generally try to stay fairly opinion-neutral, but I'm just going to say what I'm feeling tonight.

When Jake was little, his Grandma started a scrapbook for him. It was filled with all of his school pictures, ribbons and newspaper clippings. I can go through that scrapbook and tell you every time he made the honor roll, every score or placing he had in track and tennis, and every time he had a perfect attendance semester. It is a scrapbook that reflects who he is, where he started and how far he has come. The newspaper clippings have since yellowed, but the words are a forever reminder of how he has become the person he is. I wish I had newspaper clippings for the girls.

My grandpa's obituary was in the newspaper yesterday and at the bottom it read that he was preceded in death by his great-granddaughters, Sydney and Carynne. It made me so sad to know that the only time my girls' names will be in the paper is when they're in the obituary section. I don't get to record track times and dance recitals and honor rolls. I get to be reminded that they preceded our entire families in death. I get to be reminded that all of my hopes and dreams for them were cut so very short.

Our therapist has been talking to us a lot about re-traumatizing ourselves by being in emotionally difficult situations. He suggested we not go to the funeral tomorrow. But, the re-traumatizing events are not nearly as difficult as the reminders that sneak up on me and take over when I least expect them. I didn't know that reading their names in that obituary would be as difficult as it was. I didn't know that I would sit at my desk and silently cry. I didn't know how fresh my pain would be again.

I have a horrible confession to make...after the girls passed away I took every medical record, every bill, every piece of paper relating to the last month of their lives and threw it in a box. It was so disorganized and clutter that I just left everything there, trying not to directly look at it, until one day last week. It was time to do taxes and I needed all of those medical bills, so I went through everything. Some finds were good, some were bad.

Like the piece of paper that I had written on when Dr. W. called to say they did find an abnormality on Carynne's 5th chromosome. He didn't go over any of the information or a diagnosis on the phone, he just told me that they had found something abnormal, and I wrote everything he said down so that I could start looking into it. A few days later we got the diagnosis. That piece of paper was hard to come across.

I also came across the bill from the funeral home. If the government had any compassion, they would allow you to write that off your taxes (note: I am not bashing the government, just saying I wish it could be written off). Oh well.

Mixed in this box of depression were a few nuggets of light. I found an envelope that had inadvertently landed in the box. It was 5 1/2 months older than the rest of the contents. It was an envelope I had used to track contractions one night while I was pregnant. Finding that envelope made me smile. It wasn't the night I went into labor, but I still remember what it was from. We had a meeting with our running club at the Aristocrat. I had been having contractions the whole night so I pulled out the first thing in my purse (an old envelope) and started tracking at the restaurant. They were about 5-7 minutes apart, but I wasn't alarmed because I was used to them. In fact, I don't believe I went into labor for at least another week. Of course, try convincing a jumpy husband and a bunch of beer drinkers that there's no cause for concern...reminds me that we have such sweet friends.

Another good find in this box was a receipt from the Julian Center. The Julian Center is the local domestic abuse shelter. About a month after the girls passed away, we took all of their formula and diapers down there to donate. The receipt confirmed donation of over $500 worth of baby stuff. We had A LOT of formula and diapers. Finding that reminded me that we have to continue to try and be good people. Try and live better lives for our girls.

Dear Sydney,

Dear Carynne,

Hello all it's Brook's friend Jess, I took a few pics of the group and Brook wanted me to share.

Brook and Jake. Brook took home my award for best balance.







Brook, Jake, and Sean. Jake and Sean tied for my award for best effort.







Jake, Sean, Brook, and I. We had lots of fun and it was awesome to support Riley.



Sonya and Brook. Blurry image is due to the photographer unstable on her skates ;)



Sonya and I. Sonya took home my award for best rookie skater. I took home my award for most falls! Jake received an honorable mention for multiple falls.

I was reading through an article today about a young man and his experience at West Point. It took me back.

About a month after the girls died, Jake, Megan and I drove out to the east coast where we met up with Patrick, who had been at a work conference in Baltimore. We spent the following days just driving along the east coast, going through D.C., Baltimore, NYC and further north to Niagara Falls. Along the way to Niagara, we stopped at West Point Academy and took a tour of the facilities. It was beautiful and awe-inspiring. Standing at a lookout at the top of the river, I finally felt peace. It was the first time I had felt that peace in a long time. It was brief, but it was there. And silly me, I had almost forgotten how wonderful it was. I'm lucky that memory came back to me so I figured I needed to get it out.

On a side note, Niagara was not very peaceful, in fact it was pretty noisy. Going back home, through Cleveland, was not peaceful either, but that is for another post.

That's right! $1200 so far! I am so so impressed by how generous our friends, family and followers are!

As some of you may know, when the girls were first diagnosed with SMA they were at Riley Hospital for Children. I've always had a soft spot in my heart for Riley because I was a Riley Kid myself. As a child, I visited their Pediatric Ophthalmology Department every 6 months and when the girls became Riley Kids, I felt even more energized to help out such a great hospital. We were so lucky to receive such great love and care from the doctors, nurses and staff at the hospital, especially from our favorite nurse, Megan!