Wednesday was a beautiful day. Getty got to take part in her first of two zoo school fun days. I had not bought the official Sacramento Zoo School t-shirt yet, so I thought a bug t-shirt would suffice. Before leaving I asked Getty what bug she wanted to carry with her as we got into the van. Praying Mantis was the choice and we were off. We found perfect parking and we unloaded the car and found the meet up spot.
In past years I have wanted to enroll Getty in summer programs but there were always trouble with carrying it out. I simply was a loser mom and I missed deadlines. I was always so nervous about having her around kids, and perhaps the overall feeling of uneasiness of leaving the house. One can get very accustomed to not leaving the house. I can control (for the most part) what happens at home. I don’t have to worry as a mother about the elements, I don’t have to worry about germ kids touching Getty, and I certainly do not have to listen to the usual comments of (Why is she laying down? She is sick isn’t she. Stop starring honey!) I can handle comments fine, but there is a limit. Think about that for a moment. What if everywhere you took your precious child you heard comments like that. Even the subtle gaze of “something is wrong”. It wears on a mom, this mom. I want to be able to take Getty anywhere and she just be one of the kids.
I want to thank the Sacramento Zoo for just being totally awesome! Completely accommodating. The kids were awesome. The parents were awesome. Getty’s experience went off without a hitch and I attribute that to human beings that just get it. Getty was just one of the kids. I got to just be a mom.
The day started in the Discovery Room where everyone got their name button. Circle time started the day. Each child got to tell the class what their favorite animal was. I asked Getty previously what her favorite animal was at home. I showed her numerous pictures of animals and then we narrowed it down. Something told me that animals were going to be involved in this camp and I thought perhaps we needed the basics like favorite animal. 🙂 Giraffe was hands down the winner. So I verbalized the animal name for Getty to the class. There were some flamingos, bears, a hawk, lots of snakes and oddly enough a lot of giraffes. 🙂 For some of the kids that chose giraffe, it was very cute, they looked at Getty first and then said, “giraffe.” Not sure what that meant, but I took at it as a way for that child to relate to Getty. I could be totally wrong, but still it felt amazing. I can only imagine what that may have felt for Getty to know that there were more kids in the room that also liked giraffes.
We left the room after sorting animals by “fur, feathers, and scales”. We moved on to the amphitheater, where all the kids got to touch all kinds of fun creatures. Getty felt a snake (brave little lady), a hedgehog, a lizard, and a duck (now I want Getty to have a duck).
Back to the classroom for some crafts and a story.
The weather could not have been better. The Sacramento weather restrained itself to the low 80’s. That alone was a huge concern for me before the day came. Sacramento is notorious for HOT weather, even in the mornings. But it was perfect!
Wednesday was perfect. I enjoyed spending some great moments with Getty. I know inside Getty’s brain was blown by all of the animals and the excitement of the day with all of the kids.
After Zoo School we headed over to Petco. We were on a mission. Since Getty got to see so many cool creatures, I thought perhaps we could find some low maintenance creatures for her own. So an aquarium was purchased and now we have Jacque, Gil and Marlin. Our family now has three fish. Getty picked out the rocks. The backdrop is of Finding Nemo, so it was only fair to give Getty the options of names from the movie. Daddy and Getty chose names that night. Pictures to come. 🙂
Life is all about moments. Wednesday was a beautiful moment and day all the way around. Heck, we were even on time, early even. 🙂 Sitting with Getty and holding her hand in the amphitheater while she gazed and touched all of the animals was heavenly. So glad we had the resources to make this day happen. I am so glad she was able to try something new and love the day.
Band of Warriors
We are getting closer to the July 27th, SF Marathon and I wanted to give an update about our band of warriors. I hope to have a blog post out before the run, so everyone can meet the family and we can all explain why we signed up.
Training has been far more difficult than last year. Finding niches of time to get some mileage has proven few and far between. I keep telling myself sarcastically, “well this is going to be fun”. Meaning, not sure if my body is ready, but it will happen. Writing this post might be my conscious way of telling my entire body all the up to my hair down to my toes nails that I will finish. 🙂
I want to thank all of our awesome TEAM GETTY runners. I was humbled when Getty Owl Foundation was chosen as a charity partner of the SF Marathon and then I was over the moon when I realized that we will also have a great group of people spreading the good word out on the course about SMA. When good things come, they usually come in bulk, and that makes this mom’s heart sing.
The SF Marathon is a very popular run that typically sells out. In true form the Marathon and 1st Half Marathon has sold out at this point. We have over 20 TEAM GETTY runners so far and we are still looking for more to add to our our ever growing team. We still have slots for the 2nd half marathon. If you are interested please email us at firstname.lastname@example.org or call us at 916-476-3977.
If you would like to donate to the TEAM GETTY Runners, click HERE!
One Step Closer to Cure Spinal Muscular Atrophy (SMA)
Gene Therapy human clinical trials are OPEN and recruiting participants!
Gene Therapy is a research program at Nationwide Children’s Hospital, conducted by Dr. Brian Kaspar. The basic goal is to use a special virus to replace the ONE missing gene causing Spinal Muscular Atrophy (SMA), the #1 genetic killer of young children. Once in place, by a single injection, the new gene is expected to work just like the missing gene should work, completely wiping out SMA at the source.
A lot of questions need to be answered in this process regarding safety and efficacy. The only way to truly answer them is to try gene therapy on humans and take all precautions along the way. Some amazing SMA families will step up into this program and help move the entire SMA population closer to a cure.
The trial is open to the following children:
- SMA Type 1
- Age nine months or younger at the day of injection
- Bi-allec SMN1 gene mutations with 2 copies of SMN2
- Onset of SMA before age 6 months
- Hypotonia with delay in motor skills, poor head control, round shoulder posture, and hypermobility of joints
For exclusion criteria and more information – CLICK HERE.
Getty Owl Foundation has been a proud supporter and fundraiser for this program since Day One. Thank you for all of your support and contributions over the years. You are part of something great, and we all hope gene therapy is the answer to this cruel disorder.
Our work is not done, however, and we look forward to your continued support! Thank you!
Last Day of School
Getty’s last day of school was on Thursday. Getty got the chance to go to her physical pre-school and see her friends and say, “Happy Summer” to all of her peers.
It was a beautiful day (hot and bright), but beautiful the same in the amount of memories that were created. I am not a mother of a healthy child. I don’t know what it means or feels to a mother who watches her daughter/son walk across the lawn to greet her pre-school teacher and to receive a certificate of completion (diploma). But I can tell you what it meant for me. I am taking the time to say in this manner because my assumption is that a pre-school ceremony is just one stepping stone to kindergarten, then first grade, etc. We were told Getty would not “make it to the age of two”, and that alone makes one realize that this day maybe might not have happened. So stating it in this manner is not to suggest this day was not precious for the other families, it was just different. SMA is cruel in so many ways and even though we give Getty every chance at an amazing life, there is no room for error on our end.
Unfortunately, Mark was not able to come, but I know I can speak for him when I explain this feeling. Before Getty received her certificate, her awesome teacher said sentences like, “we are so glad to have Getty here today.” She could have just stopped there, because that is seriously the only sentence that means the world to us. Getty is here. GETTY IS HERE! We are experiencing events in Getty’s life that we had no idea we would. We have never been doom and gloom and we seriously try very hard to keep the positive in the forefront. But man, did that sentence permeate through my heart.
As a family we also have hard days. Days that can really break a parent’s heart. But with Getty’s unconditional love and support from our family and friends, those moments are fleeting and sometimes are few and far between. So that perhaps simple sentence was both emotional and also a triumphant one.
Watching Getty receive her certificate was affirmation to me as a mother that, “yes, Getty IS doing this and we are loving this journey with her.”
Her teacher spent a few minutes talking to the group of parents about Getty and then she asked the kids how old Getty is and the entire class yelled 4! In my heart and mind, I also said 4 and I had a beautiful flashback of our time so far with Getty. I thought about birthdays, walks to the park, the sound of her giggles, the beautiful moments we have all shared as a family, then I flashed back to where I physically was. I had her hold her certificate and I caressed her hand as the class sang a few songs.
You know I dream of these moments with Getty. I don’t, take these events for granted and I know that our lives are fragile but firm with determination. But I tell you, Getty is a fighter and I know that next year, we will be at the same event and celebrating the completion of another grade level.
It was a very emotional day for me. Seeing all of the kids circle around Getty and welcome her in such a loving way was beautiful. The way in which they take great care to make sure she is involved is such a precious thing to be witness to.
But in true Getty form I could tell she could sense I was getting a bit over emotional and went “Getty” on me. It was clear that at some point in the celebration of certificates, the spotlight was not going to be on her anymore. She had sung the songs, she had received her certificate and so that meant, “let’s go!” Her heart rate increased, she started to whimper and so I looked over at Angie and my mom across the grass and mouthed, “we need to go.” I swear Getty is a diva. If only I could hear and see the dialogue in her head, it clearly would have sounded like, “um…..ok this isn’t about me anymore, let’s go.”
We abided and we left mid ceremony. Listen, I am not going to battle with her. That wasn’t the moment to talk about “sharing”. 🙂
So here is to summer. Getty’s list of to do’s consist of the following.
Walks to the duck pond
Trips to the ocean
Hanging out in jogging stroller as mom pushes the princess.
Experiencing life, love and happiness.