Hello from our most favorite owl nest, Getty’s room. 🙂 On behalf of Getty Owl Foundation, we send our love and hope for a healthy and happy holiday season. We hope everyone can be in the presence of your loved ones. We send our sincerest warmth to everyone in the community.
Thank you to all of the families who entered their amazing kiddos into our 14 Reasons to Celebrate Giveaway. Every year just keeps getting better. We thank all who have trusted us with your donations to then find a need in the SMA community. Technology helps bridge gaps to education, inclusivity, and communication. We are so thankful to have the ability to support as many kids as we can.
We would like to congratulate the following 14 recipients.
Happy Holidays one and all!
It is that time of the year when Getty Owl Foundation can truly celebrate our efforts to support as many families of Spinal Muscular Atrophy as we can. This year seems a little extra special. We will be able to award 14 iPad packages to some great kids who need the tools to navigate their education and communication with the support of technology.
We have been so lucky as a family, to be able to offer Getty, any and all avenues to grow and blossom. We are so aware of the fact that we are fortunate to give her the world. We know that many families are not afforded that same opportunity. Truly, that is why we created the foundation in the first place. Our forever goal was to find a need in our community and try our best to meet it.
This year, similar to last year has brought some overall worries about our kids health and well-being. I have often told people outside of the SMA community that while we have been uniquely prepared for a “pandemic-like” situation, overall isolation is hard, even for the strongest. It isn’t easy live in a world of insecurity in regards to health. It is scary on so many fronts. But in true fashion this SMA community has found many ways to remain optimistic and in forward motion. I want to thank so many in the community who have supported not only our family but so many others who needed a pep talk or a virtual hug.
For the past 10 years, Getty Owl Foundation has strived to find gaps in need and fill them as best as we can. Time and time again, it centers on technology. Technology opens so many doors for our community.
In order to fill those technological gaps, we completely depend on the outside world for support. Donors from all over the world have found us, Getty Owl Foundation as a trusted organization and that trust means the world to us. We are aware that donors can go anywhere and donate to any organization and the mere fact that you have chosen us gives us pause with gratitude. Thank you!
We would like to thank a specific donor today. One who has supported GOF for many years. The Grubbs Family and their entire staff at Dutch Bros. Coffee has stepped up to support our efforts. $1 from every drink purchase has accumulated into the support we need to help our SMA community. Thank you all for your tireless and selfless efforts. We literally couldn’t do this without you.
Over the years, Getty Owl Foundation has given away over 70 iPads. 70 amazing children have benefited from our annual giveaway. While we can help meet the needs of 14 SMA children in this 2021 giveaway, we hope to be able to continue our efforts for years to come.
So, let’s get to the details, shall we? 🙂
We will be having a giveaway for the holidays. SMA families, we hope you can join us!
This year we will be gifting the following items to 14 SMA kids:
Each gift box will include:
-(1) iPad 10.2
-(1) iPad travel holder
-(1) $50 Apple Gift Card
How to enter:
-Email us at firstname.lastname@example.org with the following information:
-Your child’s name
-Attach a picture
DEADLINE FOR ENTRIES: DECEMBER 10th
GIVEAWAY RECIPIENTS ANNOUNCED: DECEMBER 11th
As with all giveaways, Getty Owl Foundation is an organization that fosters support for families with Spinal Muscular Atrophy. Please consider this before entering the giveaway. Thank you!
Well from the looks of things, it is clear that writing a blog post seems to be one of the hardest things to do as of late. This used to be a place I longed to be in order to update on Getty’s health, her successes, her journey, and everything in between. She turned 11 years old this past March and I just want time to stand still long enough to take in all of the incredible milestones she has achieved and continues to strive towards. Her ability to learn and enrich herself in her own way is really one of the most incredible aspects of being her mom. I wish everyone could take a little bit of time out of their day, grab a cup of coffee, and hang out with her while she is on her eye-gaze computer. Her eyes bounce around on the screen in ways I don’t think my eyes could have ever done, even when they worked well. 🙂
Getty can move around on the computer in the same way most of us move our mouse. Her pinpointed ability to navigate the internet and to find anything she finds interesting is pretty astonishing. It seems the moment I am just blow away I think to myself, “Yes, of course she has taught herself to navigate the internet completely by herself.” Getty has always figured out a way to strive in her own way. I think what I appreciate most about her personality and will is that she never waits for others to help her. She just figures it out.
There is a level of intelligence that I feel like most able bodied people might never understand or even attain. I don’t know, but what I do know is that Getty continues to learn, trouble-shoot, and strive in her own way.
It made me think about how she is going into the 6th grade and how the level of academic rigor continues to increase and how will she internally modify her world to find her own path? She will now have six different teachers with six different classrooms of peers. How will she connect with with her studies and also with her peers and teachers? The simple answer is, “she just will.” Getty in her own way finds ways to connect through the screen of a telepresence robot. Since pre-school, Getty has been going to school remotely from home. What most kids experienced through this pandemic with regards to distance learning, has always been Getty’s mode of attaining her education. I remember the moment all of her peers and teachers moved to remote learning. There were two aspects I thought of while this transition was happening. I thought, “Why did it have to take a pandemic for others to realize and relate to Getty’s way of receiving her education.” I mean sometimes in life in order to relate, you kind of have to take a similar route in order to really get it.
- Students are staying home to prevent getting sick. (Check)
- Remote learning has its ups and downs. (Check)
- Hand washing and basic hygiene precautions are always a good thing. (Check)
- Being more aware of how you may affect others (verbally, physically, emotionally) are all valid concerns that take care and time. (Check)
I watched throughout the past year how Getty’s peers were relating to her on levels I don’t think I was even ready for. I heard kids say: “Getty I don’t want to get sick either and I think I understand why you stay home.” “Getty I wash my hands all the time now and maybe when we go back to school you can come see us because we won’t be grimmy.” “Getty, I like seeing your face closer now that we are on Zoom. I miss school, but I like that your face is like right there and I can see you roll your eyes.”
I would like to believe that after this duration of lockdown is complete and kids go back to school, they will continue to remember and relate to Getty on the levels they all created when everyone was remote. I mean, what a beautiful and powerful skill to acquire at such a young age. Relating and learning empathy are life-long attributes that all people can embrace.
Luckily and thankfully, Getty has been fortunate to be enrolled in a school that has truly embraced her from day one. Sure, there have been bumps along the way, but as her mom, and a former educator, her school gets it to the best of their ability. We have all learned throughout the years of how to make the bridge between virtual and physical work. Getty has been truly blessed with a staff and peers who continue to embrace her and push her to new heights.
I am also aware that while her education and learning community has been flexible, empowering, and kind, I am fully aware that while I would love to control her entire environment, people can sometimes not be kind or rather, just make horrible decisions based on what they perceive. As much as I would like to list the ways in which Getty has been treated in the general public (mama bear would like to expose the blaring ways people are mean and pathetic but I will refrain and try and be an adult). Instead I would like to offer successful suggestions. I think I gear this towards adults. I say that because I like to offer children a wide range of room for learning. Kids mirror the behavior they see from adults, right? I think that is something we can all agree upon. So with that lens, here is a great way to address her and perhaps other awesome individuals that may not be wrapped in the same preferred societal plastic wrapping.
How are you?
My name is ______, what is yours?
Oh you have beautiful eyes!
Isn’t today awesome? I hope you have a great day!
I love that song you are listening to, it’s one of my favorites.
Girl, that dress you are wearing, amazing!
Cool shoes, I wish I had some of those, but my feet are too big.
(All great conversation starters that she has experienced from adults.)
Moments in the public are few and far between. A couple reasons: 1) Germs/illness 2) Just getting out of the house logistics and energy is enough to remain home (equipment, supplies, worst case scenarios, transportation, weather, etc.) 3) Lack of accessibility and accommodation (as much as I am thankful for ADA, it doesn’t ensure safety, ease, or accessibility for Getty)
So having said all of that, when we are out and she is addressed in some way in the community, the moment Getty is seen and not assumed, usually becomes one of the best experiences. If I could ask the community at large for one thing it would be to ask for visibility. Please don’t allow for devices, how she lays flat instead of running, how she may not visibly/physically respond in the way most might, become a deterrent from just saying hello. A hello is everything and yet one of the most simple gestures of love.
And listen, we all make mistakes, I make plenty of them, and I know that before having Getty, I found myself locked into societal boxes that dictated how to react or respond to individuals who may have presented like Getty. There is a mystery and perhaps even a suffocating response to not wanting to say the wrong thing or offend. But what I have learned from Getty and so many other beautiful children and adults is that……..it isn’t about me. Never was. It has always been about recognizing everyone as worthy and deserving love. So to the adults in the room, my hope is that while we learn and grow, you also teach your children to move through this world with the notion that everyone is deserving EQUALLY of love. And in order to teach that, you need to demonstrate on the regular. AND making mistakes happens, and they will continue to happen, and that is okay.
I met a mother and her son a long time ago who literally was struggling to talk to me while they both starred at Getty the entire time. It was actually very off-putting, and then I thought, maybe she just needed a nudge. So I started with, “Hey kiddo, have you met Getty yet?” His smile blossomed immediately and he quickly told her his name and showed her all of the toys he had in his hand. For the next ten minutes he consumed her world with his toys and she was mesmerized. The mom, for whatever reason still starring, finally snapped out of it and mouthed “thank you”. I smiled and mouthed, “It’s not about you,” and she immediately shook her head and mouthed, “Ugh I know.” Getty and that sweet boy are still friends and I am happy to say that the mom has made a complete recovery. 🙂 I think in so many ways, we all just need a nudge.
I will try my best to post more. Ugh, it’s hard. Getty goes a mile a minute and keeping up with her has aged me considerably. But know she is doing awesomely and she is becoming a bigger version of herself with the same amount of sass she always had.