Getty Owl Foundation

Getty Owl Run/Walk Logistics

From Kate:

Okay so here we go. Less than a week out and I can’t tell you how crazy excited we are for Sunday to come. I wanted to do  little housekeeping today so if some of our participants have questions, I can try and answer them now.  If for some reason I have not answered your question, comment to this post or email us at hoot@gettyowl.org.

1) Am I going to have an amazing time? Yes

2) What time do the races begin? The 1/4 mile kids race starts at 8:05am. The 5K & 10K begin at 8:30am. Click here for more information.

3) Where is Packet Pick-Up? Go to Race Information under the events tab and there will be all of the dates and times. Packet Pick-up is Fleet Feet, Roseville both the Friday, 24th (2-8pm) and Saturday, 25th (10-6pm).

4) Can I wait and pick up my stuff on Sunday instead? Yes, it will be ready for you at the registration tent.

5) Can I register at Fleet Feet, Roseville and/or on the the day of the race, Sunday 26th? Absolutely! Registration fees will reflect the late registration price. You can pay with cash, check or credit.

6) What are the hours of the Post-Race family Festival? Vendor booths will be available as early as 7am, but the festival will really get jumping after the race.  Festival will end at 12 noon. Want to see a map of the park and find out who to be there? Click here!

7) Can I bring a stroller? Absolutely. We suggest that strollers start in the back.

8 ) Can my dog(s) run with me? It pains me to say this, but no.

9) Where do I park? There is parking on N Street for sure. Otherwise, we are downtown and parking is available on the streets. It is also on a Sunday and most parking is free. We highly encourage car pooling.

Thank you for helping to end SMA!

Have a terrific time!

Hoot! Hoot! 

And So The Countdown Begins!

From Kate:

With a week before the Getty Owl Run/Walk, I think everything is starting to hit me finally. I was cruising along pretty well for a while. At times I even forget that I was helping to organize a run. I guess I was just getting  into the grove and at times lost sight of what I was actually doing in the process of just pushing ahead. Perhaps we all do that in some ways.

But everything pretty much hit me today. Not in an emotional way, but more in like a triumphant way. I really felt like today I was making a difference to help end SMA. This feeling of empowerment was exhilarating.

Today I drove by the hospital where I gave birth to Getty. It is the same place we go to for all of her appointments, but on the one side of the block you can only see the hospital.

This was the place where I was admitted to be induced. I had enough magazines to occupy my pregnant mind. I had my pillow, my iPod for soothing music, etc. This was the place that told me that my baby’s heartbeat was great. This was the place where my military mid-wife “coached me”, more like “ordered me”  through almost 24 hours of labor. This was the place that was going to do everything in their power to make sure I was that mom, who got to carry out her healthy baby and start an incredible life as a family.

Even though we go to this place frequently for appointments, there is just something about seeing the hospital that I still hold resentment. I know in time it will diminish, but I still have strong feelings that Getty, Mark, and I were all robbed of that stereotypical reality. And now the reasons for going to that hospital is because of interventions we make to help make sure Getty can eat safely and interventions we make to make sure she recovers from sickness.

What struck me this time as I drove by that hospital today was this: Life just isn’t fair! Simple as that.

I would give anything to take SMA away from Getty and any child for that matter. But since there is no cure yet, what I do have the power to do is plenty. I have the ability to give her all the nutrients she need. I have the ability to support her respiratory needs. I have the ability to constantly teach our doctors best practices. I have the ability to help make her happy,  however I’ll be honest, she does a good job of that herself. 🙂 And yes, life might not be fair, but I can do something.

So today I did.  With the help of some awesome and very generous people we did this!

We packed the swagger wagon with 800 goody bags full of stuff for all the participants for the run next Sunday. I should have taken a pictures, especially of all of the great kids from William Jessup University, Casa Robles High School, and some great ladies (Denise and her daughter, Morgan, Takoa, and Shea and her two daughters). Thank you all for helping.

800 goody bags who will be getting all kinds of swag from:

Thanks to all of the companies that offered to be a part of not only adding items to our goody bags, but for also supporting our race. The support from local and national companies has been an unbelievable blessing.

So back to the “Life isn’t fair” statement. Yep, it is true maybe is not, but since Getty’s diagnosis what I am learning is, what to do with that uncertainly to make it a positive.

So this is what I do know.

I know that 800 bags will be given out that has information about Spinal Muscular Atrophy.

I know that the Getty Owl Run/Walk is all about raising awareness about SMA and raising funds for reasearch.

I know that we will have a booth at the post-race family festival and I know that people will stop by.

I know that many people had heard about our foundation and signed up for the run/walk.

I know we are doing something positive.

Perhaps someone in the crowd will learn about SMA and educate another person. Perhaps someone will notice the 1 in 40 SMA carrier statistic and feel compelled to get a simple blood test that can educate generations to come. Perhaps someone in the crowd will hear that 1 in every 6,000 births is to a child with SMA and now want to do more to help find a cure. And hopefully everyone has such a great time next Sunday, that they want to come back next year.

Oh yes, we are doing this again next year and the next and the next! 🙂

So you can probably guess what I was feeling on the way back from the goody bag assembly party today. I felt amazing and I also could not wait to get back to Miss Getty. Wouldn’t you know it the timing was perfect, it was nap time. I joined her as quickly as I could. I kissed her on the head and brushed her hair and I just told her how proud I am of her. She is such an inspiration and I am just so incredibly fortunate to be her mommy. I also told her that there are even more warriors out their learning and fighting against SMA. More soldiers trying desperately to help find a cure. Getty just kind of looked at me as if to say, “Mom enough already, it’s neenie time (that is what we call nap time), quit talking and get to snuggling.” Man she is pushy. 🙂

So the countdown begins to the first of many Getty Owl Run/Walk. We are all so very excited. There are so many cool things happening Sunday, February 26th. Some surprises that I know everyone their will say, WHAT? This is awesome! A new surprise just came up today. I can’t tell you what “it” is, but I do want to thank Mama Linda for being so crafty.

Thank you all in advance for registering. For others who have not yet, I hope you can join us, there is still lots of time to register.

Hoot!

2012 Valentine’s Day Montage

From Kate:

Last year we put together a little collection of pictures played to music “montage”. So I thought why not do it again. Getty is becoming such a little lady and I want to celebrate her girliness and individuality. We are so, so blessed to have had another year of beautiful pictures of Miss Getty.

Update on her health is simple……she is doing awesome and with every passing day she is getting more personality. She is so sassy and so sure of herself. We are all enjoying her so much. She is starting to formulate sounds and words better. I wish I could bottle up her loud squeals, they are magical and they brighten our day.

Since 2011 Valentine’s Day, it has been a year of blessings, worries, education, understanding, forgiving, fighting (in a good way :)), good fortune, love, commitment, uncertainty, and perseverance.  This journey is very windy and there are times when not being able to see around the next corner can be so scary and then we just look at Getty and things just seem to work out. I need to keep remembering that she is driving. And what kind of car is she driving? If I had to guess it would be something fast with flames on it. She is not the type to not be noticed. 🙂

Happy Valentine’s Day

Thank You Inside Publications

From Kate:

We wanted to take a moment to thank Inside Publications and more specifically Terry Kaufman for a very special interview and article in this month’s February edition. The article talks about our Miss Getty, about SMA, about Getty Owl Foundation, and about our fight as a family to spread SMA awareness and help fight to find a cure for Getty and her friends.

We have always been a big fan of Inside Publications. They do an outstanding job of embracing our community and giving us all a chance to meet some incredible people that live among us and the contributions they make to the community. So when we got the call to do this article, well we were beside ourselves. It has been such a humbling experience to be given this opportunity.

We got great feedback from lots of people about the article. Thank you for all the nice emails and comments.

Getty had a great time getting her picture taken. I swear she is beginning to turn into a little diva. She followed the camera the entire time of the photo shoot. It was so cute. 🙂

Here is the article in its entirety.

Getty On Ice!

From Kate:

Last Sunday we had the absolute pleasure of helping to celebrate the 4th birthday of sweet Mr. Aaron. His parents have been a huge source of support and help with all things SMA and having them close in proximately has really helped us not feel so alone.

In fact on more than one occasion they have helped in an absolute pinch and we can’t thank them enough for stepping in to rescue us.

So Mr. Aaron turned the BIG 4 and to celebrate his big day we were all invited to go ice skating. What an absolute blast we had. We enjoyed spending time with everyone.

The ice skating part was a little worrisome. Mark and I do not skate. The idea of holding up my body with a thin piece of metal was a little unnerving. But we drew straws and well I lost. 🙂 Aaron and Getty were all snuggled in their strollers and Aaron’s dad, Robert and I braved the chilly rink and went for it. The skating rink was so very accommodating for us. They had a guide with us as we made our way around the rink. It was hard to skate side by side, so we kind of went in a single file skate off. 🙂 I was able to glance at Aaron’s expression and I believe he was having a great time taking everything in. Getty too was absorbing the moment. I was a little worried about, well everything. All the what ifs, but you know what, once we got on the ice and I saw Getty’s face light up, all was good. People would pass us and I watched her follow each ice skater. It was very cute. I pushed her from behind, so it made it difficult to really see her expressions, but I will say that I stopped a few times to check on her and she was so happy. A bit sassy I may add that mom even had the audacity to stop moving. Lesson learned. 🙂 She cooed as we made turns. Her eyes were full of wonder. A wonderful memory was created. I hope we can try skating again sometime soon. I think Getty really enjoyed it. So Aaron, we need to make another skate off date.

Happy Birthday to you, Mr. Aaron. You are the ultimate warrior and train engineer. We love you and your parents. Thank you for inviting Getty and letting us be a part of your special day. Ice skating rocked!