Getty Owl Foundation

Sometimes You Just HaveThose Days

From Kate:

It is not often that I go back and look at pictures before Getty was diagnosed. For several reasons, it is easier to live in the moment and to absorb every minute with her, instead of reflecting on the past. Don’t get me wrong, she was just as cute of a peanut as she is now, but there is still quite a bit of sting that seems to come over me when I do see some earlier pictures.

Well I had that day today. I really should of kept myself more busy because I had a little time to go down memory lane and I was stopped in my tracks with grief. I was looking at her pictures and thinking about all of the things we didn’t know yet and how our lives were literally going to be turned upside down within a month’s time.

Getty would have a team of specialty doctors, Mark and I would be frantically trying to learn all we could about this “random” genetic disease. Constant doctor appointments, blood work, Getty would start to lose her swallow, she would never lift her head, she would never walk, surgeries, shots, and the elusive RSV winter season we had heard so much about.

So as I looked at some of her pictures I kept asking myself, “Why do they hurt so bad?” I guess the obvious answer to me is that they are all a reminder of how life can change in an instant. You go one day knowing you have a healthy child to the next, when you are told there is no treatment or cure and your child will likely die in less than 2 years.

To attempt some comic relief, I tired to remember what my concerns were as a new mother at that time. I guess how to balance career and motherhood? How to remedy gas or butt rash? I even think at one point I was actually concerned about losing the baby weight. That sounds so ridiculous now. Who the hell cares?

Yes life can change in an instant, perhaps people who can understand what that must feel like are those who have that reality. I never took that phrase seriously. I was a new mom, great career, house, cars, food, husband, dog, savings and insurance. “Um…. okay right like something significant is going to happen to me. Look at the safety net I have created. What on earth can change?”

But the real answer I finally found in my heart today was that those pictures were not just a reminder of how life can be altered in a moment, but it was more of a reminder of the innocence we all lost when Getty was diagnosed. This disease robed us of our innocence. Carefree doesn’t live here anymore. Spontaneity doesn’t live here anymore. Freedom doesn’t live her anymore. We have to be constantly alert, advocating, resubmitting, fighting, manipulating, stressing, diligent, and any other word that would describe fighting every step of the way to make sure Getty gets everything she needs to be healthy and happy.

Notice I never said patient. Patience doesn’t get you anywhere. Patience causes delays and delays can mean life or death.

No, patience is only reserved for the little lady of our household. Getty gets all of it and deserves every ounce of it.

So I had that day today. I got to grieve a little more today and afterwards I felt a lot better. The pictures aren’t stinging like they once were and so I guess what I have done perhaps is stopped allowing those pictures to keep my feelings hostage. I wish my feeling had not kept me from looking at these pictures because they are beautiful and hold such wonderful memories.

Getty’s first bath, it is amazing she was that small. I think she even fit into one of my mixing bowls. Getty and I watched pretty much every World Cup game together in the summer of 2010. Whether she was watching or sleeping, I just enjoyed holding her. Our favorite team is England, we share the same boyfriend, John Terry, so of course she needed her own jersey.

Very good memories.

Halloween Costume Results!

From Kate:

I want to thank everyone for submitting pictures. I was asking for the most creative and I was seriously blown away by all the outstanding costumes. I asked the help of our entire GOF board as well as a few of our wonderful volunteers to vote their top three. Well as luck would have it we had some ties that needed to be broken, so we left that huge decision up to the lady in charge around here, Getty. I made a few paper squares and I put her arm in one of the supportive arm slings. The one she chose first  became the winner of the contest and then so on.

We would like to congratulate all of you little sweet peas for participating. It is obvious that your parents are just over the moon about you, MJ the world loves you and all of your costumes were awesome.

So here we go!

Congratulations Mr. Gavin, you are the winner of the Halloween Costume Contest. Miss Ella you have won 2nd place. And Mr. Roman you have won 3rd place.

Here are their costumes.

Here is a collage of all the kids that participated and one dog named Chance. 🙂

Update: We had minor tech glitch, so here are two more. Sorry it is not proportional to the others. I am still trying to figure out the photo program Picnik. 🙂

We hope you all had a great Halloween. Miss Getty did as well. I did try to refrain from buying another owl outfit this year, but I couldn’t resist when I saw this one. So next year, I will just let her decide what she wants to be. 🙂

Halloween Costume Contest!

From Kate:

Since we are getting so close to Halloween, I thought why not do a quick contest to celebrate Halloween. Fall is our favorite time of the year. We love the smell of fall. The leaves are changing colors to that beautiful orangeish red. There is just the right amount of chill in the air. And you can tell that Halloween is right around the corner. Love it.

Anyone can participate in the contest. We encourage all ages and species to wear their most creative costume. Take a picture and send it to hoot@gettyowl.org. It is that easy! We’ve got some cool prizes for the winners.

#1 Prize:Crane Owl Humidifier & Sweet Water Child~Lullabies for Getty CD

#2 Prize: Frogg Toggs Chilly Pad Towel &  Sweet Water Child~Lullabies for Getty CD

#3 Prize: Sweet Water Child~Lullabies for Getty download

DEADLINE FOR ENTRIES IS NOVEMBER 1st!

Winners will be announced on November 2nd at 6pm pacific time. Thank you all in advance for participating.

In case you need some inspiration, I have asked some of our littlest members of Getty Owl Foundation to participate in this post.

Mr. Sharkman Leyton

Mr. Bark Bark Charley & Miss Meooooooow Mady

Mr. “Mom, Why did you put me in this?” Fairy Cooper

Miss Hoot Hoot Getty Owl  (6 months old)

Come Support Our Friends at The Couch Sports Lounge

From Kate:

I am sure this is the time of the year when you are always looking for somewhere to go celebrate Halloween. Well we have just the place for you, if you are in the greater Sacramento area. Brandie and Justin Berenstein, fellow alumnus from Del Campo High School have opened up a great sports bar called The Couch Sports Lounge.

A couple of things you should know about the Beresteins is that they are HUGE supporters of our family and Getty Owl Foundation. They were both very supportive of our August SMA Awareness Month activities, Hoot the Grid and SMA Art Auction.

So here is the deal, their new sports bar is in Citrus Heights, which is really a great central location, just minutes from Sacramento, Roseville, and Folsom. Check out their Facebook page here. I grabbed a picture from their page just you can see how cool it looks inside.

IT GETS EVEN BETTER!

The Couch will be donating to Getty Owl Foundation this entire week.

From October 26-28th The Couch will be donating 10% of all sales made between the hours of 7-9pm to Getty Owl Foundation.

In addition to their nightly fundraising efforts, they will also raise money at their Grand Opening Halloween Party on Saturday, October 29th from 5pm-close. 20% of all food sales made that night will be donated as well.

So now you know what to do for this weekend. Stop in this week and support a great, local family owned business and a great, new sports bar. Then on Saturday, find a  Halloween costume and join them for some Halloween tricks and treats!

Hope to see you there. Tell you friends, share this post on Facebook, email, or make a phone call. Let’s help them pack it in that night. And remember…….There’s always room here at The Couch for you!!!!

Thank you to the Berensteins and The Couch for your continued support of Getty and Getty Owl Foundation.

The Couch Sports Lounge

7431 Madison Avenue

Citrus Heights, 95610

916-961-3342

Our Beautiful Owl is 19 Months!

From Kate:

Little lady how on earth did you get so big? You have turned into such a little lady before our eyes. Today you are 19 months and we are so proud of you. You are our superhero with the powers of strength, wisdom, and perseverance.

Many things have changed since this time last year and one thing is for sure, your daddy and I are going to do everything in our power to keep you healthy and well throughout this yucky winter season. Instead of going out, we will find fun things to do inside.

Please keep teaching us the power of love and acceptance. You are far wiser than your parents, but we are learning and listening.

Happy 19 months sweet Getty Spaghetti.