Getty Owl Foundation

Happy Halloween!

From Kate:

We hope everyone has a terrific Halloween this weekend. Stay safe and if you need any protection from ghosts and ghouls, know that Super Getty will be out and about keeping everyone safe. 🙂

Age Isn’t Just a Number

From Mark:

Hey Kate… Happy birthday!

You know what they say… Age is just a number; but once again, you have disproven what “they” say.

“They” said, “Getty has 2 years.” Thanks to your boundless love and and dedication, it’s been 5 years and counting, and she is doing wonderfully.

In this case, age isn’t “just a number.” It’s a big deal. You helped make it a big deal when you decided years ago to do everything you could to defy the odds for her.
In Getty’s case, numbers aren’t just numbers. They are an integral part of her life.

The numbers on her pulse ox show she is in good health. The numbers that go into her bipap settings, cough settings, nutrition, feed rate, temperature, and supply shipments are crucial to her well being, and you have mastered them. The numbers she says aloud in her school work are evidence that you are bringing her worlds of enlightenment and  enrichment daily.

Numbers mean a lot. They are her signposts, which stand as constant reminders of all the good and happiness you deliver her every day.

I’m proud of you. I’m sure I speak for both Getty and me when I say thank you.

Happy birthday!

In Pure Getty Fashion

From Kate:

Well Kindergarten has begun and in pure Getty fashion she has:

-Made friends almost immediately.

-Enjoys learning and writing her numbers and letters.

-Scoffs at anyone who stops reading a book.

-Squeals with any activity.

-Enjoys the routine of the day.

-Loves everything about school.

-Adores her teacher.

-Isn’t a fan of getting up in the morning, but gets upset when school is over for the day.

-IS TALKING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I might just add to this list as we go for the year. I know there are a lot more that I am unintentionally leaving out, but you can bet our little lady is thinking Kindergarten is pretty freakin’ cool! We could not be more proud of her and the excitement she has every day to learn and to socialize is infectious.

We were able to take Getty to school a few days to first meet her classmates and also take part in a few fun activities at school. Her classmates are incredible and she loves interacting with them. I think she has a few “favorite” peers. 🙂 The attention they give Getty gives her such fulfillment. I love to watch her face as they interact with her both from home on her VGo and also at school. Their relationships are so sweet, genuine, and so kind. I hope the kids she continues to make connections with grow and blossom as the school year progresses.

Getty has been able to go to the fire station with her friends, she has been able to communicate with them and play with them both from home and at school. I know this is helping Getty grow and mature as a person. I know this is why she now has the confidence to talk to us. And that my friends is such an amazing bonus for us as her parents. SMA is a tricky situation for SO many different reasons. One is the ability to communicate.

As her mom, I have always been so desperate to communicate with Getty. I think sometimes communication can be taken for granted. A child gets to a certain age and then they communicate right? They ask for things with their words, they use their words to string sentences together, they use their vocal cords and energy to produce sounds that become words. It would be my assumption as a parent that the bonus for this ability gives a parent the benefit to know if their child needs something, if something is hurt, if they feel sick, or if they just want to tell you they love you. Mark and I unfortunately do not get that opportunity with Getty.  We rely heavily on her O2 and heart rate levels to know if she is hurting, sick and/or needs something. We are so in tune with her facial expressions. Down to a slight eye brow movement can usually tell us how she is feeling, what she is or is not enjoying, and whether she we should be concerned about anything Getty related. Isn’t that crazy? To think that our relationship of communication boils down to a slight lip movement, eye opening, and sound influx can determine what she might be thinking or needing. It is a crazy new normal we have grown to adore. But to be honest I do have days when I just want to have a conversation. I want to hear Getty’s sweet voice put together a sentence or just say a word that is somewhat recognizable.

In true Getty fashion, she “decided” to wait until I needed it I guess. 🙂 In a muffled kind of way Getty is starting to communicate. The tone, syllables, and timing are spot on. She can count out loud with us, she can read her pre-decodable books, AND we now are using the VGo in a way that we did not last last year. We are taking the mute button off during certain times of the day so Getty can answer questions and contribute to class. Ugh! I cannot tell you how awesome all of this is. Not only is she trying to communicate, not only is she obtaining the confidence and will to talk out loud, but we can see that she takes such joy in being able to do it. That is what it is all about. To be independent and feel a sense of success around her peers and teacher is so wonderful. It has to be an encouraging feeling to know that when she tries and she gets immediate positive affirmation for her hard work. So proud of her!

A wonderful man out together a video of Getty and her relationship with her class last year using her VGo. We cannot thank Larry enough for giving us a chance to introduce the VGo with whomever was interested in learning more about this incredible opportunity. Even though Getty is home for school, she is an intricate part of her class. Her classmates treat her as though she is physically in the classroom. She is challenged by her awesome teacher just as she would if she were physically there. It is a win, win for Getty.

Here is the video! https://vimeo.com/128526973

So here is to Kindergarten. It has been amazing so far and we know that there is more awesomeness to come.

Playing Catch Up!

From Kate:

In certain ways I have been excited and bummed about writing this post. There have been so many exciting things happen this summer and I wanted so much to write about it and then something equally will happen and then something else. Well needless to say I got behind and the I started to get bummed because I wanted each cool thing to have its own post. Alas, in order to get everything down in an attempt to not forget anything, it will just need to go here. 🙂 So hold you hats and buckle your seat belts, I have a lot ground to cover.

In July we were able to take Getty for a week a) out of the house and b) to a “remote” area to just relax. It is not easy to find a space that will accommodate boxes and boxes of supplies, equipment, vital back up equipment, and honestly the kitchen sink. A couple of days away is an undertaking so think of how crazy it would be for an entire week? Yay that is exactly what I am talking about. Nuts! The van was packed to the brim and so was my Mom’s van. Oh didn’t I mention Getty’s stuff also is too much for her van, we have to have an entourage of people and stuff to make this happen. But you know what? IT IS ALL WORTH IT!

I found a house with an open floor plan on Airbnb. What a great site to find what you need and it is also incredibly affordable. A week at a hotel would have been way out of price range, but renting a house with all the amenities was really the best option for us. I found a spacious house in that was going to be perfect for all of needs. The area was quiet and remote and it was just perfect for what we needed. The last time we had taken Getty for an extended trip was a few years ago. So we saved to make it happen this year. It was kind of a beautiful feeling and a sad feeling at the same time. We were so excited for her to get out of the house and be in a new environment, but as her mom I was also trying to hold onto every sliver of time with her before she went on to Kindergarten. I knew time spent together would be different as soon as school beckoned in August.

Once we made it to the house, the unpacking began. As Getty watched a movie, the rest of us wiped down every inch of the house. Vans were unloaded, machines were set up, and supplies were organized. As I type this, I kind of chuckle because I wish I could just write those three things and have it be that. But there is so much involved with unloading, setting up, and organizing. 🙂 If there are any SMA parents reading this, you know what I am talking about. For those that do not, I will spare you the details of what it takes to make sure that everything is ready for a week. I should have just taken a picture. Here is the best I can do for now. This is right before we left. Aside from the Pepsi, the rest is Getty’s private entourage. In order to make sure Getty has everything, well everything needs to come with us. 🙂 The house offered a few things that we were looking forward to: Relaxing environment, beautiful space to be consumed by, and really a place that was as accessible as we could get for Getty. I think we did pretty good. Oh and they had a hot tub. That worked out good. I was able to get Getty in the hot tub the first night. She looooooooooved it. It was beautiful to watch her float in the warm water. Gravity is not kind to any child with SMA, let alone type 1. Once Getty was in the water it was a beautiful sight to watch her slowly move her arms and legs. She giggled and squealed as I moved her around in the water. The trip was a hit. Lots of books were read, music was sung, memories were made, and the trip really was worth it. Oh and Cooper got to go, so that made him happy. 🙂

Honestly, he didn’t move much in the five days we were there. I don’t blame him. With the occasional trip outside when nature called, he was pretty much right here all week. 🙂

I think the best part of the trip was that we didn’t have to go anywhere or do anything if we didn’t want to. Sure, the usual care was taken as it always is wherever we are with regards to Getty’s care, but other than that there were no doctor appointments, no rushing around to get somewhere at a certain time, no stress of making sure something was done, and no phone calls or emails. It was a nice break from reality for all of us I think.

Once we got home it seemed to be back to the daily grind of things to do. I know Getty really enjoyed the trip and I know she appreciated having a better rested mother by her side. I know she gets annoyed when I am stressed and I don’t need to. 🙂 I would be annoyed by me as well. 🙂

So as the summer started to wind down and before school started, Getty started to do something we were not sure we would hear. She started to talk. Getty seemed to blossom over the summer and now she had decided to truly communicate her needs and wants. Well ok we will take that! It is not easy to decipher what she is saying to most people, but in her muffled voice she started to respond to questions with pretty good precision. To which point I freaked out and could not stop crying. It was an astonishing moment. It was a beautiful moment and it is even cooler that she continues to this day.

Getty’s respiratory strength has always been stronger than her arm and leg movement. She could always belt out all kinds of sounds to us and it seemed as though throughout the summer she began testing that strength with formulated words to the best of her ability. Now that she is in Kindergarten, she is reading books and that not only is blowing our minds, but she loves to read and the fact that she is reading out loud is seriously the icing on the cake. We are so proud of her and we can only imagine how rewarding it is for her to truly feel heard. She never seemed frustrated in the past if we had a communication barrier, but it seems like now since the door has been pulled off its hinges, she thinks it is pretty cool. 🙂

So what else? Getty flew a kite, worked in her powerchair, lots of walks, mama snuggle days, a night at the Rivercats, Saturday swing days, watched tons of musicals, read copious amounts of books and we read all sorts of chapter books to her. Some of her favorites: Captain Awesome, Captain Underpants, The Neverland Girls, Ivy & Bean, Ulysses & Flora, Heidi Hecklebeck, and many more. Our library is seriously out of control! We went to see the movie Inside Out. She enjoyed the movie a lot.

So there you have it, Getty’s dance card was pretty full. Next up…………….Kindergarten! Here is a sneak peek.

Getty thank you for letting your entire village be a part of your life. We all are so thankful to be a part of your journey. I know I can speak for all of us when I say that you touch our lives every single day in a new way. Your smile absolutely trumps any care we may have. Your spirit transforms us into better people. You are a gift and we are so jazzed about what it to come.

D-Day (Diagnosis Day)

Another July is coming to a close. It’s a special time to reflect and give thanks.

In the SMA community, four days a year never pass without significance: birthdays, diagnosis days, angel days, and SMA candle lighting days (the second Saturday in August).

Getty was diagnosed with Spinal Muscular Atrophy at the end of July 2010.

Her age: 4 months.

Her prognosis: She will not live to see her second birthday

Recommended action: Take her home and love her; there is nothing you can do

Reaction: Devastation

Knowing absolutely nothing about SMA at the time, we feared her that her passing away in up to 2 years might mean as little as 2 WEEKS. We made a pact to keep her smiling for as long as she is with us. In whatever time she has, she should know nothing but love and happiness, and she will have lived a good life.

Through the SMA community, we learned more about SMA than any other source and turned the tables on the “experts.” What was supposed to be maybe two weeks or maybe two years has become five glorious years. True to our pact, Getty thrives today and keeps on smiling. Her life is full of love and happiness every day.

(OK… She is sometimes unhappy when she doesn’t want to take a nap or when someone turns her music off, but hey, she’s a kid. What do you expect?)

With our loving help, Getty attends school, travels, feeds horses, swings at the playground, goes to the forest and beaches, learns her letters and numbers, drives her own power wheelchair, soaks in pools and hot tubs, listens to music, goes to the ballet, attends plays, watches movies at the theater, and spends plenty of fun time with family and friends.

No, it’s not easy. In fact, it’s downright exhausting…. But it is oh so worth it to see her smile with joy, meet her loving eyes, and hear her hoot and holler with delight.

On the original D-day, our dreams were crushed, but through her love, strength, and contentment, she has inspired us to find richer love, deeper strength, and refined contentment in ways we never dreamed possible. We enjoy sharing that with others in the hopes they get to know us and Getty a little better and perhaps find some of Getty’s magic within themselves.

It’s been an amazing five years. Wow!

We never expected to be here with her. What do we do now?

She — we — will just keep on smiling.

There is a song that has always resonated with our family. Natalie Merchant recorded a song called Wonder. Here are the lyrics and we hope you can see why we interpret it to fit our little lady and all kids with SMA. Hope you enjoy the video. 🙂

Doctors have come from distant cities, just to see me
Stand over my bed, disbelieving what they’re seeing

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Newspapers ask intimate questions, want confessions
They reach into my head to steal, the glory of my story

They say I must be one of the wonders
Of God’s own creation
And as far as they see, they can offer
No explanation

Ooo, I believe, fate smiled
And destiny laughed as you came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience, and with faith
She’ll make her way, she’ll make her way

People see me I’m a challenge to your balance
I’m over your heads how I confound you
And astound you
To know I must be one of the wonders
God’s own creation
And as far as they see, they can offer
Me no explanation

Ooo, I believe, fate smiled
And destiny laughed as she came to my cradle
Know this child will be able
Laughed as she came to my mother
Know this child will not suffer
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way, she’ll make her way
She’ll make her way, she’ll make her way