Getty Owl Foundation

Summertime!

From Mark:

Summertime is special for many people but especially so for SMA families. The risk of illness is lowered, and we can breathe a bit easier going out in public.

In summer 2010, Getty was diagnosed with SMA. In summer 2011, we ventured out to Monterey for a weekend where Getty caught a cold and ended up in the hospital for two weeks. We have been determined to make summer 2012 special for her. So far, so good.

FAMILY VISIT

My older brother and Getty’s uncle John, aunt Leslie, and cousins Rachel and Sarah drove up from Orange County to visit us in Sacramento. Getty had never met them before, and we were all so happy to see them.

We had a great time eating with Getty inside a restaurant, which is a big deal for us. The risk of illness always lurks in our minds in enclosed public places. We are on constant watch for germs and armed with sanitizer.

We had a great time touring Sacramento and Davis, having some poolside drinks, catching up, and spending time together. Mostly, we are so happy Getty and her extended family could meet face-to-face.

SAN FRANCISCO

We set aside a weekend to take Getty to San Francisco Zoo. We spent a Saturday at the zoo, and it was fun! Getty loved seeing a variety of animals and plants, and soaked up the cool fresh air. She especially loved the petting zoo because she could get right up close to the goats. She pet a legless lizard, a turtle, and saw a couple of owls. She got tired, so we zipped through the second half of the zoo, and decided to pass on the Australia, South America, and big cats exhibits.

When Getty was napping, I was frustrated and disappointed in the zoo trip because Getty had an opportunity to see kangaroos and big cats, but missed out. Then I realized I was projecting what I wanted onto Getty. The point is not what I wanted her to see but hat she went to the zoo and had a great time seeing the things she saw, even if she never saw a kangaroo or a tiger.

Friday and Sunday were spent packing, driving, unpacking, handling medical equipment, set up, take down  … a ton of work! It was a fine trip, but Kate and I were more tired after our “vacation” than before. Getty had a lot of fun getting out and about, so we’re happy.

INDEPENDENCE DAY

As I mentioned, last year at this time, Getty was just being discharged after a two-week stay due to a summer cold. As Getty laid in bed sick on July 4th, the best Kate and I could do for fireworks was to catch a few glowing remnants of fireworks that were just out of view of the PICU window. This year, we had our own fireworks show, and Getty loved it!

I told her George Washington lit some firecrackers and scared the British away. When the wind kept blowing out our matches, I told her that’s what happened at Bunker Hill. That’s close enough, right?

I’d say Getty has had a great summer, and it’s not over yet!

Can’t Hold Back, So Much Going on in the Next Month in a Half. Can’t Restrain!

From Kate:

Before I start on all the fun Getty Owl Foundation events, Mark will be blogging about our awesome trip to the San Fransisco Zoo and our 4th of July Spectacular in the next few days. So I wanted to sneak in some fun activities for everyone in the very near future. By the way, Getty loooooooves fireworks. 🙂

Okay so August is coming very soon. August is National SMA Awareness Month and we try and take every advantage we can to spread the word about SMA in our community and to anyone who is listening, really. 🙂

So I will go in timeline order:

Saturday, July 21st from 11-7pm under the freeway.

GOF will have a tent at Sacto Mofo. Have you been to one of their events? Holy cow you need to. Picture a whole bunch of gourmet food trucks. Literally a little bit of everything for your palette. Drinks, music and on the 21st, our GOF tent and handmade crafts.

2nd Annual Hoot the Grid

Saturday, August 11th from 7-9pm @ AJF Salon

We are so excited to put this event on again this year. Plans are pretty much ready to go. Here are the details  for the night. I truly hope you can join us. We will be doing the SMA Awareness Walk before hand from 5-7pm and then from 7-9pm we will hold our SMA Art Auction. We thank AJF Salon again for their generosity of hosting this year once more.

Complementary food, beer and wine will be served. Live music and a silent auction will also be a part of the festivities. All the art was created by people, families, and friends affected by SMA. While this is a very emotional night, it is also a night where we celebrate the lives of so many gallant warriors and angels. We celebrate the fact that we will all fight to end SMA. SMA can affect anyone and this night is to make people aware that this is “our” fight as a community, not as a isolated population. So come on down and have a great time. As always it is open to the public.

SMA Awareness Night @ The River Cats

Saturday, August 25th

The River Cats have been so great to us. They are so generous to give us one night to celebrate SMA Awareness Month. Can you imagine having one night of a a captive audience to help educate people about SMA? I have goosebumps. Here are the details. I hope you can join us. You can buy tickets directly online, which is an easier option then we did last year. Let’s help pack that stadium and show support for The River Cats and SMA Awareness.

Tell 6!

Last year, while on my 5th cup of coffee I thought of Tell 5!. The idea was that I would send out a packet of 5 SMA Fact Cards along with 5 GOF bracelets to anyone that wanted to spread the word. It was a big hit. I mailed about 600 cards and bracelets. I got great feedback from people who received them. They told me really cool stories about their experiences of educating people about SMA.

So I am doing it again this year! And I am going to be very original and innovative and call it, Tell 6!. 🙂 So same idea as last year. I don’t care where you live, I will mail you out a package. All I ask is that you pass them out and educate 6 people. And double high five if you can get someone famous to educate. 🙂

So contact us and let’s spread some SMA education.

Lots going on and lots to do. We thank you in advance for your support. If you cannot attend any of our events, I only ask one thing of you. On August 11th at 8pm we light a candle for all of our SMA angels and warriors. If you can, we would greatly appreciate the effort and support to light a candle.

Thanks again.

It Is Amazing How Much Can Change In A Year.

From Kate:

In a moment of reflection today, I was thinking about where we were and what we were doing a year ago. We had been held captive at Kaiser Roseville, which seemed like forever. Getty’s health,  while at first was such a roller coaster ride, later became a matter of days before she was going to be able to “bust out”. She was graceful and kind and the strongest little soldier I had ever met. I feel like in certain respects, I learned more about my daughter in those two weeks than I ever had in her entire life. She was so steadfast and confident. Her eyes told me everyday, “Mom, don’t worry, I got this”. I put my trust in her and in pure Getty style, she fought her sickness off with intense force and determination.

Mark and I were exhausted to say the least. We were initially ill prepared to fight with the PICU staff for not only best practices, but following SMA protocols. When we left the hospital, our skin was thicker, our minds were focused, and our determination to keep Getty healthy, so we did not have to come back here was the goal.

The 4th of July was quite different last year as it will be tomorrow. We had a tiny window to look out of that night from her hospital room. We saw a glimmer of light here and there, but nothing spectacular as a full fledged fireworks show.

So we look forward to being together as a family tomorrow night and we hope everyone that celebrates the 4th of July does as well.

Getty is healthy and happy and she continues to teach us far more than we could ever teach her. So today I took a picture of her one year later. She is now 27 months. Knock on wood, we have not been back to the hospital and we hope to be blessed enough to not be going anytime soon.

And this is just what I love about Getty. She is healthy, happy, spunky, and sassy. She is watching Sesame Street, so at this point I do not exist. 🙂 And she has been gracious enough to allow me to take this picture without yelling at me to get out of the way. Ahhhh pure bliss. Life is good.

Happy 4th of July. May you celebrate with those you love. And if you are nerdy like we are, you will be reading the Declaration of Independence in its entirety and out loud  as we do every year. 🙂

The Beauty of 27!

From Kate:

Since Getty’s 3rd month of life our family was introduced to an amazing lady named Morgan Saunders. She is the kind of human being that understands love and commitment. Ever since she has been taking pictures of Getty, they not only have formed a bond, but we feel like Morgan is a part of our family. She has been with us through the good time and those times when we had no clue how much time we had with Getty. She has remained ever so kind and gentle with Getty and I know that Getty’s love is mutual.

Yesterday Morgan took pictures of Getty’s 27 month pictures. I know it is a little unorthodox to take pictures at all kinds of random months, but that is our life, unorthodox.

After each photo shoot, I simply cannot wait to see what comes of all of her pictures. And without fail, Morgan finds a way to capture Getty’s zest for life and personality.

Here are a few:

Oh our little lady is growing up so fast and so beautiful and as usual, we are just in awe of her spirit. We have shared 27 months together.

Inventory:

Estimated days spent snuggling together and counting!

Naps: 820

Slumber parties: 820

Estimated amounts of books read and counting!

15 x 820= 12,300

Time cherished and counting.  😉

Our beloved Morgan has chosen to study abroad in Australia for an entire year, starting in July. We will miss her so very much and I know Getty will miss her big sis for sure. Don’t worry Morgan we will ALL be here when you get back and ready for another photo shoot. We love you and your experience in Australia will be such an enriching experience. We know that you will exude love and cherish all who you meet there. Safe travels our friend. And if you can, bring home a kangaroo for Miss Getty.

Recon Run: Mission Complete

From Kate:

This may be a long post, but please know that there is a method to my madness (or long winded post, whichever you’d like to call it).

Before Getty, I used to run a lot. A lot. I had not ran a marathon, but that was next on my list. The planner in me had literally scheduled out all of the training weeks and races leading up to the California International Marathon. I was preparing for that grueling 26.2 miles for the entire year really. I was in the middle of a 4th of July run when around the 4th mile my body completely shutdown. Like I couldn’t move at all. Turns out that was Getty’s way of telling us that a) She was here (we had no clue we were pregnant) and b) That I needed to chill out with the running and take a break. So after the tests came back positive and we were with baby, well I pretty much stopped all activity.

I knew you could exercise but I was so freaked out that I would hurt her, that I seriously stopped cold turkey. I walked, but that was pretty much it.

At around 8 months I purchased a Road ID bracelet. You can put all kinds of information on it just in case of an emergency on route, etc. There was one line left on the bracelet that I could add info, but I didn’t have anything else to add. So I wrote, “Doing it for Getty!”

Mind you we had not “met” Getty yet. Turns out she waited well into 41 weeks to meet us. 🙂 But there was something weird about me writing that on the bracelet. What was for Getty? And why was I putting that on an emergency bracelet?

Life has such a weird way of staging events that will happen in an uncertain future for just the right reasons. Since Getty’s dx I have not run, I have not exercised , I have not broken a sweat like I used to everyday. My time and my devotion is to Getty and only to Getty. In my mind and in my body, every day was like running a marathon.

Making sure she had everything she needed, constantly monitoring her, suctioning, preparing for what could happen and when some scare would occur, breathing treatments, being able to jump in a nano second to fix the problem and remedy a solution. Sometimes it is as simple as repositioning and then to the opposite extreme; resuscitating her. My legs may have needed a good run, but my brain and my heart were working overtime. Caring for a child that is so medically fragile can fatigue you and you don’t even realize it because it becomes routine and your new normal is normal.

I was not eating, I was losing weight, I was in this anxiety ridden world that I could not break from. I was just so scared that if I was not hovering over her, that something drastic would happen and I would not have my “A” game to help her.

What I am learning now, and mind you very, very slowly is that I can’t be the best mom I can be unless I do break away and get time to do things that make me feel good, like running. I remember the first time I geared up and put my running shoes on for the first time in well over two years I just cried. I cried because I was leaving her for a half an hour for myself. I felt so guilty. But I will tell you this. After I put on my shoes and I reached for my timing watch, my Road ID was leaning right up against it. I grabbed it and put it around my wrist and saw the inscription of “Doing it for Getty”, and I knew I needed to get out, sweat, run and burn off all of this frustration I have been harboring for so long.

SMA frustration sucks, hands down. It comes in all forms and that first run I took was an amazing experience. I felt my legs move at a speed I remembered and cherished. My knees were a bit weary, but strong. Overall I did run for a half and hour and it felt awesome. I have no idea how far I went, but whatever the distance it felt like a victory and I wanted to celebrate. I ran inside the house and could not hold Getty long enough. The guilt I thought would follow me on my run had gone away and I even started to think about the next time I might be able to get out.

So fast forward to last Saturday. The Recon Run in Tracy was simply unbelievable. I wish I could bottle it up and keep those memories alive for my entire life. It felt invigorating, it felt empowering, it felt right. I did not want my Road ID to take the burden of all of the mud, but I did bring it with me, to remind myself that I am a better mom for Getty because I was doing something that was helping me mentally and physically.

We had such great support that day. Well over 20 people participating with us. We all had on the same t-shirt. SMA Warrior seemed to be a very fitting statement

I got the privilege to be with two other SMA moms, Meri and Jen you gals rock! It was an honor to be there with you. Two members of our GOF board was there as well. Takoa and Morgan, we kept together as a team and “killed it.”

The run itself was something that I think all people need to experience. The very first obstacle was a water slide to a pool of watery mud. Once I hit the water, there was no going back, it “was on!” And that really was the theme for the entire run. Tires, carrying bags of sand, going over and under into muddy water, jumping over 4ft walls, running up and down sandy dunes, etc. But you know what there was not one time I wanted to even complain. I kept thinking about the phrase, “We run for those can’t”. I had no business complaining when my daughter fights for her life every day. So I kept pushing and pushing.

The 12ft wall I was so worried about, nothing but a few planks of wood and a rope. We scaled it like it was no one’s business, it was awesome. I can’t even swim and the last leg of the race as swimming. I had no business being in there, but I did it with the help of my team.

Running across the finish line was a complete affirmation of strength, both mentally and physically.

Rejoicing as a team was a great experience. Hugging and cheering for a job well done felt so good. Oh and the beer was freezing cold. No one got hurt. 🙂

I have learned many things since Getty has graced us with her presence. One really important lesson is to listen to her and follow her lead. She has never led me astray and I think she has been telling me that I need to get out and do what I love to do. She is right, it only enriches our time together.

So Mark and I have been working on a new schedule that will give me about an hour a day to get out on the road and exert whatever I need to get out of my mind, process what is in my mind, and give me the time to clear my head and heart so I am ready for Getty to fill it up once more.

There are a few more races this summer that Team Getty will be entering and there are a few more Mud Runs that the SMA Warriors will be participating in and I can’t wait.

I think the only thing I would pass on is the gravel in the teeth. That was a new experience. 🙂

Here is a collage of the Recon Run. Some pictures were off the website.