Getty Owl Foundation

Get Your Guac On August 17th!!!!!!

From Kate:

I know there are lots of people out there that adore, no crave guacamole. Well I have just the remedy, come out on Saturday, August 17th, to the 8th Annual Guac Off. Located in the the heart of Midtown, Sacramento.

The competition will showcase the best of the best guacamole in town. If you think you have what it takes to win, simply enter by emailing Kelsey at guacoffsac@gmail.com. The event is FREE, but space is limited. You must RSVP to get a spot to taste test and vote for the best guac in town. Go HERE to sign up. Follow the event on facebook.

Getty Owl Foundation wants to thank Kelsey for being so kind to choose our foundation as the highlighted charity for the event. All donations are welcome, there will also be a raffle. We will also have some SMA Awareness information to give, since August is SMA Awareness Month.

We hope you have a great time. Getty, Mark and I will be there to taste as well. We are so excited.

That Fateful Day, 3 Years Later.

From Kate,

July 31st marks the 3rd year anniversary of Getty’s diagnosis — a day that will always be significant for Mark, me, our family, and friends. It changed our playbook. It changed our perspective on life. It changed pretty much everything about who we are as humans and humbled us to the core.

I have spoken many times about that day in our neurologist’s office and how hearing those three letters and learning about the prognosis solidified a sense of purpose for us. I ponder a lot of things all the time about that day. I think about how Mark and I walked into the office as certain people and were transformed walking out. I think about how in an instant in life can change anyone. I think about looking into Getty’s eyes the moment we were told one year for sure and, if you are lucky, two. I remember looking at her and hoping she could tell me what I should be feeling, how I should handle this news, looking for some kind of answer. Getty did not answer me with any sound, but only a deep gaze back at me with her beautiful blues.

In the last three years, many things have transpired for our family, and I can’t help but believe Getty knew all along what was to come and what our journey’s path was going to look like. She has always been wise beyond her years and I can’t help but believe in that office July 31st, 2010, she was communicating with me, to comfort me as her mom, but more so not to worry because so many incredible opportunities and experiences will follow us on this journey…

That we would:

• Meet some incredible SMA families who would give the shirts off their backs to make sure we had everything in place to keep Getty was stable, happy, and comfortable.
• Be able to call or message other SMA parents in the middle of the night for sound advice.
• Form incredible bonds with other SMA families across the US and abroad.
• Feel immediate comfort just being in the presence of other SMA families.
• Be among a group of people who would fight to make sure all of our kids were all getting proper care in the face of adversity.
• Have the ability to advocate for Getty and for other families.
• Receive special gifts for Getty from absolute strangers who have now become amazing friends and supportive confidants.
• Become the recipients of necessary equipment and transportation from loving families and companies that just want to make sure Getty gets to see the world.
• Receive warm meals, comforting emails, and phone calls to offer support in any way people knew how.
• Understand that people are good and people, while many do not understand our every day lives or SMA, still find ways to help us emotionally, spiritually, and physically.
• Go places that we never thought we would see and experience with Getty.
• Lose faith in the medical community but in the same breath watch professionals in time learn from Getty and instill protocols for newly diagnosed families so their journeys will not be as bumpy.
• Watch some of Getty’s doctors absolutely fall in love with her and find ways to help spread awareness in their own way.
• Watch our family comfort and love us from afar while we live in our bubble.
• Create a nonprofit to help spread SMA awareness, help other affected families, and to donate money to find a cure for SMA.
• That Mark and I would continue to fight together as a united front even with adversity and struggle. We would remain strong in keeping Getty always top priority.
• That I would continue to witness my husband evolve into a fierce and confident individual that loves her little girl and would move mountains to see her happy and healthy.
• Have teachers, speech therapists, and occupational therapists who take Getty in as their own and find new ways to challenge her and advocate for new technology to open more doors.
• Find the beauty in every day, every success, every attempt, every giggle, every sassy comeback, every sound, and every movement.

I do believe Getty knew on that fateful Friday. I think she knew that we were going to be okay. She may not have known the details of our journey or the specific route, but I do believe that she knew we were going to be okay.

 These pictures were taken the week after Getty was diagnosed. Special moments that were full of emotion, worry, the fear of the unknown, but a strong sense that this was not the end as Getty’s parents. Getty knew this disease would only strengthen our love together. What a wise old owl. We have yet to question our journey and since Getty is driving this ship, we will always follow her lead.

August Is So Close, Let’s Talk About It Now

From Kate:

August is national SMA Awareness Month. Since we created the Getty Owl Foundation we have tried to find ways to spread awareness locally and nationally and really to anyone who was willing to listen.

So since August is almost here, I thought “let’s just start talking about it now.”

We have 2 events locally happening and one nationally, maybe even internationally.

I will go in order:

1) The last few years we have mailed out free bracelets and SMA facts cards to whomever would like to help spread SMA Awareness. So we are going to keep on, keeping on. If you are interested to receive a SMA Awareness Bag, just email us at hoot@gettyowl.org. Simple as that. All we ask is that you spread the good word and help us make others aware of the #1 genetic killer of young children. We would certainly appreciate it! Last year I mailed out 100 bags and I hope to mail out even more this year. Every bag mailed brings an even bigger smile to my face.

2) Saturday, August 3rd at 7:05pm we will again be partnering with our local Sacramento Rivercats Baseball Team to have our annual fundraising night for Getty Owl Foundation and to spread SMA Awareness. We have all of the tickets to mail out. Simply email us at hoot@gettyowl.org. Tickets are $17 a piece. Children are free unless they need to occupy their own seat, then you will need to pay a ticket price for them as well. Their policy is 23 months or younger are free. Email us if you are interested. There is a special way to pay and a special way to figure out where you will sit as well. We do not get credit if you go to their website and buy tickets. We hope to hear from a lot of local peeps. In the last few years, the game has been a blast and we have really enjoyed meeting new families supporting Getty Owl Foundation and SMA Awareness.

3) Saturday, August 17th is a new and really awesome event. Getty Owl Foundation was chosen as the charity to be highlighted at this year’s 8th Annual Guac Off.  Tickets are FREE, however space is limited. The Guac off is locate at The Urban Hive

Interested in taste testing the best Guac in town? Get your free tickets HERE!

For more information go to the link above “HERE”.

They will also be holding a great raffle from all kinds of local business.

As the event gets closer, I will post about it again with even more detail. Hope to see you there.

Good Things!

From Kate:

Lots of great stuff has been happening for Getty and I just wanted to share. We are proud of her and I feel like I have been bursting at the seams to finally put it down into words.

Monterey

A few Friday’s ago I called Mark while at work and said, “Let’s go to Monterey.” We have never done anything spontaneous since Getty’s dx. We have always carefully planned out where we would be going, how long, what to expect, figured out all of the worst case scenarios, etc. So to call Mark and throw out a last-minute trip was scary but exhilarating.

I always felt like a getaway needed to be at least a few days. Day one is always a wash because it includes unpacking and setting up everything. The last day is a wash because it includes taking down and packing.

So how many days do we need to actually need really feel a sense of relaxation? We have never tested that. After this trip we realized that we need at least two additional nights to really feel relaxed and give Getty time to explore.

We had a blast! The weather was perfect.

We got a chance to go to the aquarium. Getty got to touch all kinds of little creatures there, and we were even able to go behind the scenes to let Getty see where all of the baby jellyfish are. That was so cool. Getty’s eyes were big and she was very serious watching them move around. We talked about the jellies from Finding Nemo and tried to relate to something she already knew. It was so wonderful to see her eyes light up.

This weekend, Mark and I learned a big lesson, and that is, we can be spontaneous. We can load that van as quickly as possible and perhaps we can continue to do little trips like this so our little lady can continue to explore her world. We had a great time.

Around the House

It is not always easy to get out of the house, so we try and find some fun things for Getty to experience even within the confines of our house and in the back yard. The weather has been really nice to be in the backyard. We have a nice patio area where we can wheel Getty around and access.

We played with bubbles, we picked flowers, and this past week, Grammy stayed with us for a few days. One night, Grammy and Getty had a camping night, and it was so much fun to watch them interact.

Superhero 5K

This past Sunday, we took part in a terrific run: Superheroes 5k in Downtown Sacramento. We were eleated to have our Getty Owl Foundation booth to spread awareness, and Getty got to not only dress up as Super Getty, but she got to meet some of her superhero peeps. It was a terrific day.

Chickens

This topic may be a constant topic on our blog. Getty loves her chickens. She is so vocal when they are around her. I love that they are encouraging her in ways that perhaps Mark or I could not offer. She loves to talk and we think we are getting Getty pretty good at saying, “Hey, chick, chick.”

Agnes, Mildred and Ethyl have all become far more comfortable with us, especially Getty. We try and get out at least once a morning, just so Getty can feed them treats and squawk with them.

If you listen carefully, you can hear Getty not only talk to her feathered sisters, but you might be able to pick up her saying “chick, chick, chick”.

Click for Chickens!

Happy Father’s Day!

From Mark:

After a long day at work, I come home weary, change, wash up, and then it happens. I quietly stroll into Getty’s room and see her lying peacefully in bed. The feeding pump softly churns. The vent whispers and hums. I admire her steady rhythmic chest rise and fall. She is content and healthy.

I feel a subtle sense of gratitude to all those who took the time and effort to provide all the specialized things Getty needs just to be with us. More importantly, I appreciate that Kate has delivered Getty yet another good day.

She has recently awaken from her nap, and she watches her animated shows intently. On occasion, she hoots and giggles at her show. I take a moment to stand behind her and just listen.

It’s as if she’s talking to the characters, laughing at the silly things they do, maybe singing with them. Sometimes, she belts out a holler, echoing through the entire house. Maybe she’s trying to tell them what to do, with sass. She’s good at that.

SMA has robbed her of the oral skill to form clear words. It has robbed all of us of truly hearing what she has to say. Honestly, that pains me at times, but I try not to dwell on it. I look right past her limitations and see a beautiful little girl. I delight in her chirps and take fatherly pride in her bellows. “The kid’s got lungs!” I think to myself.

I get close and slowly inch my face into her view. Her eyes dart to meet mine, and the whole of her face beams with a genuine and loving smile. She can’t say, “Daddy’s home!” — but she can.

I give her smoochies all over and provide the hugs I’ve been saving up. I move her arms and legs about, clap her hands, have her pat my cheeks and honk my nose. She laughs and laughs and laughs.

I settle her down and back away. Her eyes and squeals insist we “Keep going!” We give it a few more go ’rounds, and love it!

These are the kinds of moments that warm our hearts and invigorate our souls. These are the little things SMA Dads do.

Cherishing, laughing, playing, kissing, bonding, and loving through it all — these are the things Dads do.

Happy Father’s Day!