Getty Owl Foundation

Mixed Emotions

From Kate:

In the days following Getty’s diagnosis, my mind was reeling. I was searching for answers, I was searching for others that were going through my same heartache, and I was not totally content with what I found. I found family after family that looked pretty much like us. Hard working people that were involved in the same train wreck only to pick up the pieces to fight for their child and other SMA children. While that was comforting, it still did not fill a void I was looking for.

I had a moment, no not a moment, I was drenched in this thought for a while. A very big sense of shallowness and thought, where are all the celebrities? Isn’t there someone famous that had gone through this? I am only a high school teacher in a small suburban town in California. How on earth could I make a difference when we are just trying to make ends meet in a society that gravitates towards Hollywood for justice and advocacy? Who would care about a little family in Sacramento that has a terminal child? How would that affect another family, how could they start a movement?

So what do you do? You find out who knows who and try and find connections with people that might have more of a voice to send a message. Then when you get that opportunity, well, what would you want the world to know? Everything I guess, but I think most importantly I would want people to know that this diagnosis could be yours. That is really it. I would love for someone with more connections to announce to the world that Spinal Muscular Atrophy is a reality and with enough resources we can end it. I had this Hollywood idea of a person in front of the camera in a very raw moment wearing a t-shirt with the initials SMA and them telling the viewer that they can make a difference.

I don’t know if I got my wish today or not, but all I know is that Spinal Muscular Atrophy was mentioned today on Oprah. That isn’t a bad start.

Oprah Interviews James Frey

I want to thank James Frey for having the courage to talk about his son’s death. I am not “on the other side,” so I will not even attempt to relate, but I think what I can totally relate to was your vacant stare.

That look I have seen on my husband, on myself, and in other SMA families. That stare tells me that you have seen too much as a father and have endured too much to even comprehend.

I appreciate the fact that you mentioned that you were going to the hospital to have a healthy child. My pregnancy was perfect, dare I say … easy. Measurements were on cue, movement was on cue, and progress was on cue. I, too, was going to have a healthy child. My only worry was that Getty would turn out to be a boy, and we had to frantically think of a backup plan for a name if she was a he. Nowhere in the scenario was the thought that we had passed along this gene, or lack thereof, to her.

I appreciate the fact that you said, Spinal Muscular Atrophy.  Thank you for explaining what SMA is. “A neurological muscular disease, it’s incurable, untreatable, and fatal.”

I thank you for answering questions about your son. You simply didn’t have to. I think some would say you could have done more for SMA, and yes, perhaps that might be the case, but again I am not here to judge, just to thank you.

The words Spinal Muscular Atrophy were uttered for the entire world to hear. Oprah is in her final season and billions are watching. I can only imagine how many times people typed in Spinal Muscular Atrophy into their search engine today.

In an unfortunate way, James Frey, you have shown the world that SMA can happen to anyone: a small town history teacher, to a stay at home mom, to an award winning author.

I have got to believe that awareness is happening, people are talking, and we are moving in the right direction.

This disease has the ability to chop you down to size. It does change your perspective about life and what is worth fighting for.

Getty and I went to her sleep study last night to evaluate her bipap settings. We turned it into a “girls night out”. We had a great time and she fell asleep after 11pm.

As she slept I brushed her hair with my fingers and I thought to myself that this wasn’t the life I wanted for Getty. She deserves to be walking and bouncing around with life. She deserves to be talking. She deserves to be eating all kinds of different foods. She deserves to be a healthy 1 year old kiddo. I want the world for her. So while she slept I cried with all the mommy things that suffocate my heart. And then Getty, in her infinite wisdom and zest for life, wakes me up in the morning with her sweet coos. I opened my eyes only to be greeted by the bluest of eyes.

“Well, good morning sweet pea,” I said. Then she followed her cuteness up with her little smirk. 🙂 So now all is well with this mommy. Days of sadness are present, and those days are excruciating, but they do go away and they are replaced with days of euphoria in the presence of Miss Getty.

So what has this interview done for SMA awareness? Not sure. My hope is that it had done something and we are better off for it as an SMA community. My wish would be that, in some way, James Frey continues to be a participant in this fight. But ultimately it is up to him and his family.

What I would love is to have Oprah on her new network do a piece on SMA. Oh, man, could you believe how powerful that would be? If she interviewed any family the viewers would understand how hard we fight to make sure everyday is magical for our kids. They would get a glimpse of how we multitask  to raise money, learn all we can about this disease, advocate for our kids and for each other.

I think they would also get  a chance to understand that even though SMA has been called an orphan disease, there is nothing insignificant about it. It is devastating, families are affected, and there will continue to be more without proper awareness. I think most importantly, they would get a sense of how we need a cure and how it is entirely possible with enough support.

I will just keep wishing over here in my small town and doing what I can to do right for Getty and all SMA kids.

Tickets Winners and the Zoo

From Kate:

Tickets

I wanted to thank all those that left comments about their favorite teams and even better were your experiences all things baseball. Thank you for participating. I used random.org to choose the winner. Kathy you have won 4 tickets to the game. Congrats and I will send them your way asap. 🙂 One other announcement in regards to the River Cats Non-Profit Night on May 24th is that we sold the most tickets (130) which means we will have an information table at the game for the foundation and Mark WILL be throwing out the first pitch! Awesomeness!

Zoo

Mark and I have been waiting to take Getty to the zoo for some time. Well let’s be honest, Mark and I have been looking forward to getting out of the house with Getty for a long time.  RSV season is basically over and I just wanted her to experience more than just the four walls of our house.

I hate that Getty’s ability to handle sickness is weak, it scares me and I know we need to protect her as much as we can, but I am also sad that there are so many months in the year that she can’t get outside and experience outdoor life. But you make do and we found all kinds of fun things to do inside.

The outdoor temperature this past week has been in the upper 70’s. The weather is definitely getting warmer and safer for Getty. We had been talking about the zoo so much and thought today would be the best time to go. It’s the beginning of the week, maybe not so populated, and not too hot.

We started getting things going about 10am. We packed the travel bag with all the essentials, worst case scenario items, and just-in-case things. Getty was up and about by 10:20 and we did her breathing exercises.

I think she thought something was up — she looked curious. I told her we were going to the zoo and that it was likely some of her owl friends were there. Then we hooted a few times to get in the mood. 🙂

We packed up the cough assist, suction, joey pump, pulse ox, and travel battery on her stroller and we were out the door by 11:30am. Everything fit perfectly in the van. Thank you, thank you Kiwanis Club. Every time we are able to go out as a family in the van I internally thank you all for being so generous.

We got to the Sacramento Zoo and found a place to park. We lifted the stroller out of the van and we were off to make some memories.

Just as we were about to push Getty forward up a slight hill near the zoo entrance, the lights on the pulse ox turned off. The battery was dead! Of all the preparations made ahead of time never once did it occur to us that the pulse ox would keel over.We also forgot to bring the plug for the pulse ox.

So now what? There is no way we could continue not knowing what her oxygen levels were. I thought originally I should be freaking out. We depend on that machine to give us a second-by-second oxygen and heart rate reading and now we know nothing. We just kind of sat there for a second and tried to figure out what to do next.

The three of us, Mark, Angie, and I, decided that Mark will go back to the house, get the cord, and we would be good because we could plug the pulse ox into the portable battery on her stroller. Getty’s sats were fine before the mishap, so we felt comfortable knowing that in the small amount of time he would be gone, she should be fine.We also had the suction and cough assist ready to go in case Getty appeared to be in need.

So we took Getty around some of the park outside the zoo and stopped to suction often just to be safe. I also stopped to put my ear to her chest just to see if she has any rattling and all was good. In fact halfway through our walk, our little owl fell right to sleep, and of course she had her comb. This comb is starting to go everywhere with us now.

Getty needed to eat, so we got the Joey pump ready to go and, while she slept, we were able to feed her. At one point I wanted to check to see if she was almost done eating so I bent down to look at the pump interface and I must have somehow pulled out her tube, letting formula pour out everywhere. 🙁

We fixed it and all was good. I started thinking of all the things that are going wrong and wondering whether to close up shop and try again another day. I was highly considering it. 🙂 We were only about 200 yards away from the zoo, yet we just couldn’t get in the darn place.

Mark returned within twenty minutes. I don’t want to know how fast he was driving. We plugged in the pulse ox and we were ready to go. Getty woke up as well and she smiled with delight. Perhaps she knew this had all happened and she thoughtfully took a nap to refuel for the zoo. Smart girl!

We walked into the zoo and it was just awesome. Trees everywhere, exhibits everywhere, sounds of all kinds of animals surrounded us. We were finally in the right place. We looked over the map to find the best route and then we were off.

Getty was having a great time. She was concentrating on everything she saw. We joked that maybe she thought we were on our usual walk to the regular park and if she was going to expect to see her new animal friends every day. Boy, we would be in trouble. 🙂 Getty and Daddy got a few very special moments in as well.

We were having a great time. One of our last destinations was to find Getty’s BFFs. We knew they had owls here, it was just a matter of finding them … and we certainly did.

These two little guys were very fun to watch. The one that has his head turned was so not in the mood to talk to us. But the big eyed owl was very hooty chatty. He was very curious about our obvious interest in him. We all talked to him, and Getty got a chance to discuss all things owly. If you listen really close, Getty hoots a few times.

[youtube=http://www.youtube.com/watch?v=TMG0zkAzYSE]

There was one other owl exhibit. Angie took some incredible pictures of the Burrowing Owl. I only got one of them so I will post the picture of the baby owl later. Aside from Getty, I don’t think I have every seen a cuter being than a baby Burrowing owl.

So the the day was amazing. I found myself so giddy for Getty and for our family to have such a special day out. I was worried about how this would all play out. I just wanted things to go well to the point we felt comfortable and then confident for the next time and the next time. It was fantastic and we are now looking forward to the next adventure. Angie got some great family pictures of us all together and I will update as soon as I get them.

But for now I think this these pictures say it all. Our little owl had a great time and I know she is ready for the next outing.

Bird Feeder Update

From Kate:

Since I am sure everyone was wondering how the bird “situation” was going over here at the Storm-Mathany household, well just take a look for yourself.

I was able to get a picture of one of our new neighbors in mid-flight. About a week ago some birds started slowly coming around. They didn’t stay long. My thought was that they were “sampling” to see if it was worth their time. Since this picture was taken, last week, I can’t keep the bird feeder stocked fast enough. 🙂

Yesterday we had what I would call a Disney moment. I looked out the window to see the birds and the squirrels eating together in perfect harmony. Now I just need to get Getty near the window at the right time to see all of her friends.

Thank you for the bird input. Not sure exactly what brought them, but I did add a water feature to the front yard, so maybe that helped? I think they just got hungry and their other neighborhood food source ran out, but we will see.

One other update. We ARE going to the zoo this week. Very excited and nervous at the same time. Pictures to follow.

Thank You for Picking Me!

From Kate:

Getty I wanted to write this to you on what will be the 2nd Mother’s Day, a day I get to celebrate being your mommy.

Getty when you were born I was over the moon in love with you. The moment the nurse brought me to you, I knew you were something special. I was so excited to become a mom and more importantly, your mom. I’ll be honest I wasn’t sure what it meant to be a mom. Your Grammy had set the bar so high, that I didn’t know if I could do as good of a job.

In hindsight I think I read too much, I conjured up all kinds of things in my head of what I should already know about how to care for you that I think I really stressed myself out. I took classes, researched and one word I kept hearing was the word should. “You should breastfeed, you child should walk at a year old, teething should happen by 5 months.” And you know what Getty, I listened to all of it because I just wanted to do right by you. You deserved anything and everything.

Never in my wildest dreams could I every have imagined that something so devastating could shake our family foundation to the core like SMA did. I remember distinctly in between the pediatrician and neurology appointment looking at you and telling you, “Getty you can’t leave me.” I had no idea what fate was going to serve us, but there was something telling my heart that something wasn’t right. We had only known each other for a few months and for you to leave me was out of the question. Incomprehensible to think a diagnosis could be so grim.

My eyes were focused on your little body as he said, “two years”. I didn’t cry, I didn’t feel, I just froze.

Since that day your Daddy and I have done everything in or power to make sure that every day is filled with love and happiness.

Getty you are my constant teacher. You teach me to be patient, unconditional, resilient and strong. You continue to teach me humility and compassion. You are so forgiving of my “mommy moments”. I think what you continue to teach me and that I can’t thank you enough is if I follow my heart then anything is possible.

Getty you are my buddy. I look forward to sleeping by your side and waking up in your presence. I enjoy spending time with you during the day. You are so curious and mischievous. I enjoy watching you when you experience new things. Your caterpillars will be hatching soon and I look forward to experiencing that with you. The zoo is calling your name and I cannot wait to see you see live animals bigger than your kitties and puppy.

You have given me so many incredible memories in the last 13 months and I look forward to making more with you and daddy.

Getty I love you with all of my being and I want to thank you for letting me be your mommy, thank you for picking me. You are the best gift I could have ever asked for.

River Cats Tickets Giveaway!

From Kate:

So I had every intention to talk about three more Team Getty Runners last night, but maybe you can guess why I postponed………….yep, Getty was so snuggly and we were really enjoying our time together.

Tonight’s topic still has a sports theme but it is all about baseball. River Cats Baseball to be specific. May 24th will be Non-Profit Night at the ballpark and the Getty Owl Foundation was invited to be one of the organizations. People come from all over the Sacramento region to come see the River Cats play and we were so excited about getting even more SMA awareness out into the region. I always think that if one person knows about SMA they are bound to tell another and then another and then another. We will have a table at the game to pass out info on SMA and to help promote all of our upcoming events.

The outpouring of support to buy tickets was simply awesome. We were only asked to sell about 50 tickets and we sold over 130 instead. Thank you all for supporting us and purchasing tickets, looking forward to seeing you all there. I haven’t heard yet, but if we sold the most tickets out of all the non-profits that night, we would be able to throw out the first pitch. So I told Mark to work on his throwing form just in case. 🙂

That night will also be very special for our family. Getty will hopefully, (cross all fingers and toes) will be coming to the game. We need to do a couple of outings before hand to just be comfortable, but our goal is to go as a family. She just got a special hat in the mail today. I think she is ready, what do you think?

So since this is going to be a fantastic night and a memorable game for our family  and foundation we wanted to celebrate by doing a giveaway for 4 lawn seats. Another great aspect of this giveaway is that this game in on a Tuesday night which means Kids Eat Free and the tickets are transferable, so if you can’t make the game you can go to another.

So here is how you win, very simple indeed, just comment to this post and tell us your favorite baseball team.

For a 2nd entry option, include your favorite baseball memory. So for example, my favorite team is the San Fransisco Giants and my favorite baseball memory is when I got hit in the eye with a ball as a kid which left a wicked black eye. Another favorite memory is when the New York Mets won the pendant in 86′. Mookie Wilson hit that crazy ball along the 1st base line. Can’t wait to hear your favorite memory.

We will announce the winner of the 4 tickets next Tuesday, May 10th at 7pm.  Good luck to everyone!