Getty Owl Foundation

Serenity Weekend

From Kate:

It is not easy to take time off as a family. The walls of our home, while comforting and safe don’t match an opportunity to pack up the van and get out of town.

We didn’t really plan it actually. I think I just thought, “we need to get out of here”, and it just kind of worked out. We knew we wanted to go somewhere familiar, low altitude, somewhere with easy access for Getty, and somewhere we could just breathe and lose ourselves in nature.

I’d say we did that. 🙂 Oh and a place where Coopie could come too.

Guerneville, CA is a very sweet, little town that is pretty much hugged by redwoods and nourished by the Russian River.

It is quiet, it is slow, the temperature didn’t go over 70 degrees; it was perfect. It is the kind of town that once you arrive you unconsciously leave your mental baggage at the beginning of Main Street.

Our stay was for the Labor Day weekend. I perused the vacation home rentals the week prior and kept my fingers crossed on one in particular. Open floor plan and a big adaptable room for Getty. Most of the rentals are cabin like, which to us meant, narrow hallways, small rooms, and lots of stairs. So when I saw this one and I saw the amazing price for so many days I immediately crossed all fingers and toes.

And we got it! It obviously isn’t your average cabin in the woods. Very modern design outside and in. It was perfect for us. And to be surrounded with this view instantly gave us a new perspective.

It felt like every time I would have a worry, it was almost like the forest would shhhhh me and say, “shut up, look at this view.” 🙂

We really had no plans for the weekend. We knew we wanted to head over to the ocean, which was about 20 minutes away. We also wanted to check out Armstrong State Park. But most of the trip we just relaxed and hung out.

Getty loved the trip. The entire time she was in good spirits and enjoyed watching the wildlife  and the great scenery. We brought books and activities to do with her. We tried to keep some of her routine the same. We also had times when we just wanted to wow her with new experiences.

Packing and unpacking was a lot easier this time around. Mark bought plastic tubs to organize all of Getty’s stuff. When we got the the house, we instantly started working on modifying her room. I wish I had taken a picture of what the room looked like before.  I guess I would describe it as “romantic”. That quickly changed as we moved in.

Getty had everything she needed. We tried to mimic her set up at home as much as possible. The bed was not so comfortable, so if we do this again, we will definitely bring an overlay of foam. But overall the room was big enough for everything which was nice because small rooms can sure start to feel suffocating.

Off to Armstrong Redwoods State Park. It was just simply gorgeous. There were great paved routes we could all access. That morning we were actually able to put Getty in pants and a jacket. We haven’t been able to do that since I think last October. The weather has been so nutty, I don’t think we had a winter or a spring in Sacramento.

Anyways, we got to the park and it was just beautiful. Getty looked all over the place and got very quiet. That is when we know she is loving it. Just a calm serenity over her face as if to say, “wow this is cool.” Or I guess, “what the heck are those tall thing.” Either way, she was having a great time. Cooper was allowed on the walk as well. So his day also was the “coolest.”

After got out of the van and were all situated, we headed out on the trail. Getty was awfully chatty when we would stop. Actually to the point that she started to cry. She can get a little bossy. 🙂 She here is the, “keep moving you guys, I need to see everything”, picture.

This is ten minutes later.

What? We are in such a beautiful place and you fall asleep? 🙂 Just our luck. So we took a quick family picture, just in case she did not wake up on our trip. We wanted to remember the moment as a family, even if our sweet owl was in dreamland.

So we put her bi-pap on and we let her sleep while the three of us (Cooper included) admired the scenery.

The grounds are beautiful and the paved roads are actually paved and nice to walk along. Getty’s stroller can’t usually take every bump and can become uncomfortable for her if the ground is not flat. So it was smooth sailings all day.

Mark and Cooper got a chance to spend some time together.

And then after a little while on the walk our sweet baboo woke up.

We were so excited to continue our walk and had a great time. Mark and Getty touched a redwood.

Overall the trip to the park was amazing. It may seem simple that we went to a park, but for us it meant the world to be together as a family. So many parks are just simply not accessible for Getty. But this park was so nice and shaded, easy to move around, and an accessible place for Getty to use all of her senses.

After a few days of naps, eating inside and just relaxing, we headed to Fort Ross.

This place was NOT accessible, but it was still fun. :)We love history, so to show Getty this fort was very cool. She even got to ring the bell.

I titled this post “Serenity Vacation” for a reason. While it is not very easy to travel and while we always have to be at a heighten state of alert as an SMA family, there were moments that we were able to breathe and take in the time we had together. For this weekend at least we were able to let stresses go, let worries go, let our family reconnect in a way that we really have not been able to do for a long time. Getty had a great time and that IS all that matters.Or hope is to be able to come back very soon. There is definitely something about nature that calms the soul. The quiet peacefulness of wind whispering by and the gentle chirping of birds allows all of life’s worries to stay at bay.

And if you are not sure what serenity looks like, maybe this will help.

Yes folks, even Cooper needed some much needed R & R.

Thank You SMA Families & Friends!

From Kate:

I wanted to take a moment to thank all of the SMA families and friends that offered to donate art pieces and silent auction gifts for not only our online auction, but our 2nd Annual Hoot the Grid. I love this time of year because we get to raise awareness more, since it is National Awareness month. We get to show our community that SMA has a name, a face, and that we are no different to anyone else in this world.

I was approached by a woman the other day that asked about SMA, to which I was thrilled. While we are in conversation she told me that she couldn’t be a carrier. She had a beautiful, non-SMA kiddo so that meant that she was not a carrier. Ahhh, what a teachable moment I thought to myself. I basically told her this, without the visual.

She paused a moment and then thanked me for putting it such easy terms. Then she said, “well if I get tested, I could have any kind of SMA, aren’t there like tons of mutations?” To which I did another fist pump of happiness and I told her, “no”. “you either have the SMA carrier gene or you don’t”. “It is that simple?” she said. And I said, “yes”.

Folks, this is why we do what we do. This is why we do events online and in our community. If we can reach one more person in the very least , to learn about SMA, we are satisfied. My hope is that the mom I spoke to will go and tell someone else and then that person tells someone else, etc.

So thank you to all the families and friends that helped make these events possible. I was asked that very same question, several times online during the auction as well as at our event here in Sacramento. One person at a time.

Thank you to:

Miss Stephanie Tomasegovich

Mr. Jeffery Lorenzen

The Goeppert Family & Nana Teri

Miss Morgan Saunders

Kaige’s Uncle Ryan and Sister, Paris

The McClain Family

The Kennedy Family

The Miller Family

The Sniezek Family

The Burks Family

The Calafiore Family

The Lohin Family

The Bundy Family

The Gooden Family

The Barnett Family

The Poluchowicz Family

The Pruitt Family

Mr. Ivan Pretorius

Miss MJ Purk

The Bonelli Family

The Shifflett Family

The Reed Family

The Engle Family

The Lorey Family

The Reed Family

The Gardner Family

Stacey Ball

Miss Getty Spaghetti

Thank you all for helping us make this event a reality two years in a row. We are ever so grateful and we appreciate the time and effort you all made to help us educate not only our community, but anyone that reads our blog.

I am still crunching the numbers. I will update on how much we were able to raise in a bit.

Ms. Strong Goes to Washington

From Mark:

Ms. Gwendolyn Strong is quite the inspiration! You see, Ms. G is not only defying the odds each day, but she just finished her first day of Kindergarten at Washington Elementary!

Gwendolyn has SMA Type 1, just like Getty. She was born in October 2007, and hospitalized by December. There she stayed for her first Christmas, and went home soon after New Years.

Infant botulism, they thought. It wasn’t until about 4 months later, Gwendolyn’s doctors figured it out and her parents first heard those three cursed words: Spinal Muscular Atrophy. Suddenly, infant botulism sounded like a walk in the park.

Over time, Gwendolyn became full-time vent dependent (bipap) and has been in and out of the PICU. However, in that time, she has done many wonderful things, like travel cross-country, drive a power chair, visit Disneyland, and accompany her family on the beach. In 2009, she also inspired her parents, Bill and Victoria Strong, to launch sister SMA organization, Gwendolyn Strong Foundation.

Bill and Victoria were one of the first SMA families we contacted when Getty was diagnosed in July 2010. They gladly gave us input on launching Getty Owl Foundation in January 2011. Their personal and professional input was and has been invaluable.

Now, despite SMA, its complications, its hardships, the ever-present fear of potential illness, and the fact that Gwendolyn was admitted to the PICU for an emergency blood transfusion less than two weeks ago, Ms. G just finished her first day of Kindergarten. I know parents of healthy kids can be nervous on the first day of Kindergarten, so I can only imagine the knots in her parents’ stomachs.

She met new friends, listened to stories, and got to hang her backpack on a hook. I’m sure that sounds like normal Kindergarten stuff to a lot of people, but to an SMA family . . . IT’S HUGE!

All too many SMA families can only dream of their child doing something as simple as hanging a backpack on a hook in Kindergarten. There’s a little SMA angel, named Amanda, who earned her wings at age 21 months who always comes to mind first when I think of these things.

We are so happy for Gwendolyn, Bill, and Victoria. “It was a really emotional day for all of us. It went great and we’re off to a really good start with the makings of hopefully a wonderful year for G,” Bill said.

SMA comes with a lot of pain, turmoil, frustration, despair, and exhaustion, but triumphs like these help keep us going. Congratulations!

Victoria, Bill, and Gwendolyn Strong

Everyone Deserves A Second Chance

From Kate:

Quickly wanted to thank those that have purchased artwork. This will be the last post about the auction before the wrap up  post sometime next week. There are three pieces that did not find homes, so I wanted to give them one more chance to be bid on.

Auction Item #1

One if by Land, Two if by Sea

Click HERE to Bid!

Auction Item #2

Rustic Country

Click HERE to Bid!

Auction Items #3

Say Yes to the Dress!

Click HERE to Bid!

Auction Item #4

Windmill

Click HERE to Bid!

SMA Art Auction Day #6

From Kate:

Okay here we go.We have three for today and then Monday will be our Second Chance Auction for all the pieces that need to find just the right home. I hope you enjoy these pieces. Day #4 and Day #5 are still up for auction, go check them out as well.

Auction Item #25

Beach

Click HERE to Bid!

Art Auction #26

Elise

Click HERE to Bid!

Art Auction Item #27

Friends

Click HERE to Bid!