Did you see this?!?! ----->

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

So, I was totally off with the date of the skate...it is actually this weekend, January 23rd. Our goal is to make this 23rd better than the previous 2. Jan. 23rd, 2009 is the day the girls were diagnosed with SMA. Jan. 23rd, 2008 is the day that our dear friend, Little Joe, left us. I've never really talked about Little Joe on here before, but through his suffering, he taught us something very very important. He taught us, as a circle of friends, how important we are to each other; how much we all love each other; how much we are really there for each other. I've often wondered if other groups of friends function like our little family? I know for a fact I could not have survived this last year without the love and support of everybody around me and I hope that others are lucky enough to feel that same love and support from their friends.

Help Riley!

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!

This weekend, Jake and I are doing an ice-skate-a-thon to help raise money for Riley. If you would like to help out by donating a dollar, I would be very grateful! I know times are tough, so if you can't donate, at least leave a comment cheering us on...neither of us are any good at ice skating and we each have to do 100 laps...YIKES!!

To donate, please visit https://www.firstgiving.com/brookpritchett. Thanks again!

Grumpy old lady

I am a grumpy old lady. I was reminded again today of how much I don't like change. I think I just get too comfortable with routine and when that routine is changed up, it sends me spiraling downward. I started a new job today. It's not the same. It isn't the same beautiful drive downtown at my own pace, it's a drive in heavy traffic and construction. It isn't the same lunch, it's a 'get in your car and drive to a drive-thru instead of walking along the brick sidewalks of downtown' lunch. It isn't the same people, it's people that don't know me or my story.

I think one reason why I hadn't posted in so long is because I got into a routine of being at home and being comfortable, surrounded by happy pictures and happy memories of my girlies. And today, during that awful drive, a lot of negative feelings came back.

In the first two hours of my new job I was asked if I had any kids. Before I got to work I told myself that I wouldn't bring up anything about the girls for a while because I wanted my co-workers to get to know me first. When I was asked, I just kind of shrugged on the outside. On the inside, I was having a full-blown panic attack. How disrespectful of me to not answer that...to the person asking, but most importantly, to my girls. I just froze and didn't know what to say. My face got hot, my palms got sweaty and all the air escaped my lungs. I just wish I knew what to say to people. I feel like when I answer that question, all I do is bring people down...but if they had only known my girls and what amazing, sweet babies they were, it wouldn't be so sad.

So, I guess the question is, what's the best way to answer such a difficult question???

Merry Christmas Sweet Girlies!

I'm pretty positive I've posted this picture before but, I just love it. 3 little baby Santa's, this picture makes me melt! "Nate and his girlfriends!" We had so much fun last year posing you in your little Santa hats, this Christmas won't be the same without you two.Miss you lots and love you bunches.

~Auntie Jess~

One more thing...

This was us, last Thanksgiving. I love this picture!

Thanksgiving insurance

I am very grumpy today. I was very grumpy yesterday. Jake and I were not looking forward to Thanksgiving very much because we knew what would happen...the girls would not even be mentioned, acknowledged, anything. And that is exactly what happened. It was a pretty awkward situation so Jake and I just kind of kept to ourselves, even when the topic of universal healthcare came up. I appreciate and understand everybody's opinions on universal healthcare, but there are a few problems with bringing it up at a family function:

1. Don't bring it up at Thanksgiving. It's a sensitive topic and there are too many people with too differing opinions and it just makes for bad conversation.
2. Don't bring it up around your son and daughter-in-law because you have no idea. You have had insurance steadily for the past humpteen years. We were so incredibly lucky to have insurance when the girls were sick. In the one month that they were ill, we racked up over $60,000 in medical bills. Thankfully, we've only had to pay a fraction of that, but if we hadn't had insurance at that time, we would not be surviving.
3. Don't bring it up around people that you know are losing their insurance in a few short months. The idea of us not having insurance scares the crap out of us and we have told you how upset we are about it, but thank you for being selfish and only thinking of yourself and how universal healthcare will raise your taxes and bankrupt the country. Thank you so much.
4. Don't bring it up to people that are about to lose their insurance even if they have pre-existing conditions. If there is even a 10 minute lapse in coverage, our pre-existing conditions will not be covered for at least a year, if not longer, so if my eyeball explodes at Thanksgiving next year and lands in your mashed potatoes, please don't be mad...it's what you wanted.

Sorry to go off on such a tangent, but seriously, some conversations are better left for other venues.

I do want to thank Sean and Elly for being awesome cousins and talking to us and making us feel welcome. You were a ray of light on an otherwise very dark day.

Tonight

Jake and I were gone to my mom and dad's most of the weekend so it is late and I'm getting caught up on my e-mails and blogs. I was sad to learn that Owen, an SMA kiddo who's story I have followed since the girls were first diagnosed, passed away last night. One thing that I learned from reading his blog is something that helped me through some pretty difficult days and nights with the girls...that SMA kids are normal kids, their bodies just can't keep up with them. It was such a comfort to know that even when the girls could no longer eat without tubes and could no longer breath on their own, they could still hear us and know how much we loved them. Please think of Owen and his family today.

http://www.fight4owen.com/