As the end of school year draws to a close, we take pause in how incredible this year has been for Getty. Many firsts for our little lady. Many memories made. Much growth in all kinds of ways. With the end of the school year we try our best to get out of town to basically breathe for the year. It gives us all a chance to change the scenery. Our lives kind revolve around the academic school year, as many families do. Fall is the beginning of school, new people, new things. Near the end of fall we start to move more inside and we basically shutter off our lives from November-April. When RSV season rears its ugly head, we need to keep Getty as healthy and safe as we can and most of the time that means we cannot venture out into the rest of the world. We just completed our sixth RSV season and while it always seems daunting to retreat inside the four walls of our home, we have seemed to nail the idea of truly living life enclosed. It is amazing how much life you can conquer while sequestered for months on end. 🙂 However isolation never truly gets comfortable and I find that near the end of March, everyone in the house is hankering for some sun, breeze, and new places.
We are lucky enough to be able to find little niches during the summer to get away, recoup and enjoy the summer. In order to leave the house for hours/days, we have to have backup power for all of Getty’s machines. It is a nonnegotiable. It will always be a nonnegotiable. Most of Getty’s machines come with back-up battery power, but it seems that those that are the most important either do not come with this option or that the power offered is not powerful enough to sustain a long trip in the car. So a battery/inverter system is essential for safe travel.
Many aspects of an SMA life are not paid through insurance. Many life saving options are either denied for various reasons or they aren’t even considered. Out of pocket expenses can truly add up and they can become a financial burden.
So we want to help some SMA families get the back-up power they need to get moving this summer and lessen the financial load in powering up life saving machines for their amazing warrior kiddos. We are having a giveaway!!!!!!!!
We will be giving away 6 battery/inverter systems and a getaway quilt to help some SMA families get moving this summer!!!!!!!
How to enter:
Email one submission to email@example.com with the following information:
-Your first and last name.
-Your child’s name.
-What special trip would you go on this summer to make memories if you had this system?
-Submit a picture of your child and/or entire family.
*No purchase necessary. One submission per household. All entires are available for submission starting today (now), May 31st-June 7th (6pm, pacific time).
* The six SMA families will be chosen at random using random.com. All winners will be announced on June 8th. If you have any questions, please feel free to email us.
-A BIG thank you to fellow SMA mama Barb for making such beautiful quilts. Thank you to all of our donors for giving us the ability to purchase these battery/inverter systems for SMA families.
Getty’s academic journey has been a very exciting road. She is now nearing the end of Kindergarten and as I look back, she has grown heaps from the infant program to pre-school and now to kindergarten. She is academically ready for 1st grade. She is also knocking it out of the park socially. With the help of the telepresence robot called VGo, she is able to connect, communicate, and develop relationships.
Technology can be a great burden, but it can also be a welcome addition to a little girl that just wants to be one of the kids. This technology is giving her the ability, power, and independence to do so. We have had some incredible people along the way of Getty’s educational journey. Many have been here from the start and they were/are huge advocates in assisting with Getty’s needs and abilities.
A video was created last year by an amazing man named Larry Edelman that truly captured Getty’s pre-school experience. The hope was to offer counties, districts, teachers, advocates, parents an option for obtaining as close to inclusion experience for their child that may be homebound temporally or permanently. The video was a huge success and I tip my hat to Larry who was able to really capture Getty’s early experiences with the VGo and her classmates.
This past year Larry came back to do an update and…. well…..this video is amazing. I have no other words to say. Please watch, please share, and please keep in mind that education should be for all kids. True education, inclusive education regardless of special need.
*Larry, you are wonderful and a loving addition to Getty’s village. Thank you for your kindness and attention to detail.
What would you do if you had no physical limitations? Would you squeeze me tight? Would you run and jump and skin your knee? Would you play in the dirt with reckless abandonment? Would you create constructed works of art? What would it mean to you if you had a day to just be what most kids get to experience every day? Would you kiss and hug us all? Would you dance? Would you twirl? Would you kick a soccer ball?
When I have days that feel sad or out of sorts, I have to be honest and say that sometimes these thoughts race through my mind and they hurt my heart.
But without fail you find a way, your own Getty way of telling me to calm my heart. You have an incredible way of telling me that those “things” are just extra. Those things, while they may sound and look fun, do not define what this life is about. What this life if about is this moment, this second, and nothing more. I look into your eyes and you wise demeanor tames my weakened heart. That twinkle tells me that all is and will be okay.
So I rejoice in what is beautiful. My heart feels full and content that you are such a happy kiddo and what life has and will offer is and can only continue to be spectacular.
“Now if you would just change my movie I would be a super happy kid. Mom, seriously you are driving me crazy.” exclaimed Getty.
Can’t dwell for long. Back to regularly scheduled life. 🙂