Our young lady turned 8 on March 25th and I just wanted to share a bit. Getty is eight years old. I have been sitting with this impending realization for the few days before her birthday and I just sit in awe. I try my very best to stay in the present and in the positive as much as I can, but it is hard not to reflect on the day Getty was diagnosed. The tone and the message that flowed from the doctor’s mouth as he explained what Getty’s diagnosis was and how this basically was going to play out for her stings every single time I reflect. As you can probably guess it is ridiculous to stay in that space long for many reasons, mainly because it is essentially wasted energy that I no longer have a reservoir of. However there was something so incredible about that day. When we were driving home from the appointment on July 30, 2010, I never felt defeated. I never felt like this was the end of something. I never felt like this time bomb, which was SMA, would win after the obviously grim prognosis of maybe two years. No, there was something more to this story that I just felt in my heart had more to write. There had to be more.
So we went about life after diagnosis. Albeit, different from what we thought the “normal” was going to be. While kids were swallowing, sitting unassisted, crawling, holding their head up, eating, walking, swinging, sitting in a chair, brushing their own teeth, sleeping alone, independently exploring the world, running, jumping, clearly talking and socializing, writing with different materials, hugging, falling, getting dirty, tying their shoes, climbing, and whatever it is that “normal” kids do, that wasn’t our world. It wouldn’t be honest if I told you that not reaching some of those milestones didn’t hurt, because they did, they hurt a lot. But as I have said before, staying in that space offers nothing but pain and serious energy that is better utilized in the present and in the positive.
The planet we live on outwardly functions a bit differently. So how do I explain that to someone who doesn’t know much about the life we live? How do I explain the richness that is our life without all of the listed milestones above? Simple, I don’t. I don’t because I don’t need to explain it to anyone. If you knew Getty and you knew our life and the world we live in, you would feel it and you would be convinced of it the moment you met our daughter and the village that adores her. I say it in this manner because I have found that I have spent way too much time thinking I needed to convince people that even with all of the outward challenges, that somehow Getty’s life was not amazing. In the back of my mind when I spoke about Getty and our adventures, I could still see people were hanging onto the notion that without physical abilities, life was not as grand. If you ever needed someone to give you permission to truly be convinced that physical abilities isn’t the core to happiness, now you have heard it. Physical ability doesn’t equate to success, happiness, intelligence, and maybe most important, purpose.
Getty has adapted in such genius ways in a world that can sometimes be overlooking of human beings with physical challenges. Having become aware of these possible road blocks over time, you learn to find new ways, I like to call them “plot twists”. 🙂 We go to places that come with accessible spaces and caring people. Getty charms every single person she meets. This non-verbal and physically challenged child can sweep you of your feet and demand attention and understanding. She uses her various tones and shrills to indicate when she is not happy or indifferent, in other words sassy. Getty offers high pitched coos when she is satisfied and content. And the eye roll, oh heavens I can’t leave out, the famous eye roll. Well Getty reserves those for when she thinks your ideas are silly, when she thinks you are embarrassing to her, when she knows she is getting away with murder. 🙂
Books are life! If there is a book in your hand, you must read it immediately or she will yell at you. Getty enjoys reading books with the reader and she has been reading out loud on her own since she started Kindergarten. One morning in her early days of Kindergarten, I opened one of her decoder books from class and she just went for it. Her tones and syllable breaks were on point and we knew she was reading on her own. She is not picky about genre, I mean really a book is a book to her, but if pushed to narrow it down it would definitely be mystery, fantasy, sarcastic, relationships, suspense, adventure, and mischievous characters. 🙂
Getty’s love of music is something to behold. All kinds of music brings smiles and coos. If a book or a movie are not on the current menu, then music is being played. Pop, Jazz, Folk, and honestly anything else offers Getty some contentment and she falls into the sweetest harmonic rest. Dance has come become a perfect compliment to music. She loves watching ballet and our annual trip to see the Nutcracker brings her so much joy and excitement. She enjoys shows like So You Think You Can Dance, The Voice, and World of Dance. We try our best to stay up to date with each of these shows, so you can understand right now how crazy the house is right now since The Voice is back on this Spring. 🙂
For Getty’s birthday this year, we invited our local high school’s jazz ensemble to come and play for her. River City High School’s Jazz Band, Sea Monkey’s are so talented and we were all so “jazzed” to know that our surprise was met with happy coos and smiles. 🙂 Getty loved it.
All of our lives were enriched the moment Getty Emelia Storm was born. This bright light has been shining for the past eight years and she just brightens everyone’s lives that are a part of her world. She continues to show the world that any version of life is with purpose. Her grace and grit offers a narrative of what fulfillment looks and feels like. Never in eight years has she ever looked to be defeated or obstructed by this life. She always finds a way around adversity and she always offers the patience of a saint when she has to wait for the rest of the world to get on board. 🙂 Unless you are holding a book in your hand and you haven’t started reading. 🙂 Then rightly so she has no patience for your obvious lack of understanding. 🙂
Happy Birthday Sweet Owl, we love you and we are so excited for what is to come. Keep knocking it out of the park!
I would like to thank everyone who has sent such incredibly sweet messages lately about what the Getty Owl Run/Walk has meant to you. I had planned on posting something sooner, but holiday break happened and then Getty’s 6th treatment of Spinraza was in January and time just isn’t slowing down at all for us. Which is an amazing blessing.
I blogged about the bittersweet decision I made about the Getty Owl Run/Walk a few months ago. While it was a difficult decision to make, I am realizing how thankful I am to myself for sticking to my guns on the decision to no longer host the event. I simply do not have the same amount of time to balance both Getty’s care and organizing the annual event.
For those interested, here is the blog post for the entire story. http://gettyowl.org/2017/11/04/even-amazingly-beautiful-things-come-to-an-end/
Since the announcement I have received such incredibly sweet messages of gratitude. Pictures and comments of entire families, first time runners/walkers, and even brand new babies, who came out every single year to help Getty Owl Foundation raise funds to help support families affected by SMA. We thank everyone who participated and helped us raise funds to make a difference. While Getty Owl Foundation will continue to help support families and raise awareness for SMA, our annual event will not longer be around.
Take care and please continue to send the emails and memorable pictures. They really are a comfort and help me realize what the event meant to you.
I am a bit early today, but Getty has the opportunity to see an incredibly amazing jazz band tonight. River City High School’s jazz band, the Syncopating Sea-Monkeys will be performing tonight and Getty is …….jazzed! 🙂 Having said that, I don’t want to delay the awesome news of announcing the recipients of our SMA Holiday Giveaway.
I would like to thank all of our donors for helping support Getty Owl Foundation’s efforts to help support our SMA community with iPads. We cannot do this alone and we thank every single individual and organization who has helped us make this happen. Thank you to Karen and Hannah from Lionel’s Place for the pillows and prints. Thank you to Daisy Trotti for her exceptional talent and making such the exceptional blankets. 🙂
Thank you to the SMA community for your participation. Hopefully next year we can offer even more iPad packages and support more awesome SMA kiddos.
So here we go!
Age: 8 1/2
Age: 3 1/2
Age: 14 months
A few months ago at Getty’s school fall festival, I was introduced to a couple of dynamic women. Karen and Hannah were vendors at the festival and what they had to offer made my heart happy. Lionel’s Place, offered all kinds of fun pillows, prints, t-shirts, buttons, and an amazing book called The Little Lemon That Leapt. This is Lionel the lemon. 🙂 Lionel travels the world meeting various friends along the way and learning what makes us different can and is wonderful.
What I appreciate most is Karen and Hannah’s passion and mission to help support positive efforts to help kids embrace weird. “We will never be able to measure how much greatness the world has missed out on because a bully shut down a child’s creativity. That is why it is our mission to bully-proof kids one at a time by teaching them that different is beautiful. When a child accepts and loves his or her own quirks, it in turn becomes easier for that child to accept and love quirks in others. Choose Weird is our mantra and way of empowering kids to own their differences in a positive and intentional way.”
My perspective as a mother with a child with special considerations, I often worry whether Getty would be accepted in her environment. Would children only see differences as negatives? Would they not take the time to really see her as just one of the kids? Would they see what we see every single day? A confident, sassy, and incredibly smart young lady who embraces all that life has to offer. Well I can honestly report that ever since Getty has been enrolled in school, she has always encountered a warm smile and a kind offering of friendship. We have been overwhelmed with kindness and I can’t tell you how much it empowers Getty’s growth.
I am also aware that not all experiences are similar and I am so thankful for Karen, Hannah and Lionel’s Place for offering a positive platform to learn positive ways to embrace differences. Your efforts will continue to make an impact, that is certain.
“It is about a movement to raise a generation of children who are full of compassion and empathy, and who choose to celebrate what makes them weird.” I love this and I could not agree more.
This year for our SMA Holiday Giveaway, I wanted Lionel’s Place to participate. So for those SMA families entering our giveaway, you have a chance to also win one of their beautiful owl pillows and prints. Check it out!
I was obviously drawn to the owl prints. 🙂 I am a bit partial to them for many reasons. I was also drawn to the phrase, “Fly Fearlessly”. I think all of our SMA kids fly fearlessly. Since Getty’s diagnosis, she has had to endure many challenges and without fail, she flies fearlessly into every challenge or hurtle with ease and grace. I am in awe of her daily and just so proud of her zest for life. She is a constant teacher that challenges me in so many ways.
I hope everyone reading can take a moment to check out Lionel’s Place.
For those SMA families interested in entering your child’s name into our giveaway, please CLICK HERE . Deadline for entries is December 3rd @ 6pm PT.
I love this time of year for so many reasons. On a personal level I love how the seasons change here in Sacramento. Yes, I loathe the fact that winter is not kind and viruses linger everywhere and we always have to be vigilant, but it’s still pretty outside. 🙂 Sometimes it is very hard to find the silver lining to our “normal” lives during the winter months, but holiday carols are nice and looking forward to Charlie Brown, The Grinch, Polar Express, and snuggling when the weather is colder sure makes for some great memories. Hopefully we will get the tree up soon to enjoy. 🙂 We hope Thanksgiving was a beautiful day for everyone.
Another reason for excitement is what has now become an annual iPad giveaway for our SMA community. This year we will be giving away 10 iPads. We are just so thankful to have a platform to support SMA families. Thank you to our donors for supporting our efforts. We certainly could not do this without the confidence and support of all of you.
Technology serves many purposes for our SMA community. Technology opens the door to independence, education, communication, entertainment, and socialization. So much learning in our environment comes from experience, but for an individual with SMA, their could be some barriers that might not allow for opportunities. iPads offer a chance to explore, communicate, and have a sense of independence that they might not otherwise get.
So we want to help. 🙂 I know 10 iPads might not be a lot, but we hope to always double our number from the year prior. 🙂
This year we have some really special additions to our SMA Holiday Giveaway. Here is a picture.
What’s inside our iPad Packages?
9.5 inch iPad. $50 gift card to be used for iTunes in the App Store. The two adorable owls (pillow & print) have come to us from an amazing mother/daughter organization, called Lionel’s Place. (More about them next week.) Last, a GOF reusable grocery bag. One awesome item that is not pictured comes from a local artist and GOF volunteer, Daisy Trotti. Her handmade crochet blankets are beautiful and perfect for the season.
What a great giveaway, huh! 🙂
Details for the SMA Holiday Giveaway 2017:
Getty Owl Foundation will be giving away 10 iPad Packages.
This giveaway is for people with Spinal Muscular Atrophy (SMA) only. While we are aware that many people could benefit from an iPad, Getty Owl Foundation’s primary commitment is to individuals with SMA.
*No purchase necessary.
* One entry per individual. (Duplicate entries will be void.)
*If you have any questions, please email me at firstname.lastname@example.org
How do you enter? Super easy.
Email us at email@example.com
Submit the following information:
Please attach a picture.
Now until December 3rd @ 6pm PT
Giveaway Recipients Announced:
Tuesday, December 5th @ 6pm PT