There have been some incredible things going in the Mathany-Storm household that just needs to get out and more stuff on the way that I can’t talk about yet, but believe me it will be worth the wait. Let me start first by saying the holiday season was a very special time for our family. It was a time of good health, making memories, and enjoying being in the moment. We created some traditions, obtained mass amounts of snuggles and just overall enjoyed being together. We received some wonderful well wishes from people from all over, which gave us great comfort.
Getty’s health has remained stable. She has lost some strength in her arms. The range of motion she once had, has kind of tapered off. Makeshift slings have allowed her to have more range and gives her the ability to manipulate the iPad screen, which in turn gives her more independence. We seem to have a really good daily routine. Feeds, breathing exercises, singing, massages, reading, iPad, and nightly bi-pap. Getty has really taken to the routine and it is so fun to watch her take delight in our nightly routine of singing and reading.
There have been a couple of times when Mark and I were busy taking care of her nightly set-up that we were “late” getting to singing and she certainly let us know. 🙂 The nursery book we read to Getty has about twenty different stories in it. Since it is routine, I am noticing her start to mimic me while I read and/or use similar sounds as I make them.
One night, selfishly I was sleepy, so I thought I’d give Getty the “Cliffnote” version of the nursery book. Um…..bad idea. She knew and I ultimately went back and read the entire book like I should have. Another lesson learned.
So onto the “Please Someone Pinch Me”. SMA is such a tricky disease. I find that when “good news” comes our way, it is quickly compromised by bad news or the ever lingering prognosis of this genetic disease. I often feel unsure about getting good news, because I just know that bad news might be lurking close by, just ready to pounce on whatever hope or celebration we may be able to have. It is kind of like an emotional shadow. I am very optimistic person by nature, however, the shadow that lingers can be pretty persuasive at times.
First and foremost, lots of people have made some gracious donations towards the Team Getty bracelets. To date, we have already sent out 75 bracelets. We are beside ourselves, that is incredible. That means there are essentially 75 people wearing Getty’s bracelet and raising awareness. Thank you so very much. You are all her warriors now, go forth and educate!
While we are on the Team Getty topic, our dear friend Morgan Saunders has taken on the quest of recruiting members for the Team Getty Runners 2011 team. Throughout the entire year, the Team Getty Runners will be accepting donations while they train for the December 4th California International Marathon here in Sacramento. All abilities and ages are welcome. Some people are running the entire race, some are relaying, and some are walking. More details to come.
If you are interested in participating or have questions, please email us at email@example.com. If you would like to follow Team Getty Runners progress, check out the page called Team Getty and follow the blog. Thank you Morgan for organizing this endeavor. We are simply humbled by your willingness to help organize the team and if I remember correctly there are already over 25 people signed up to run. Awesome!
Alright, last but certainly not least, I have a story to share. I will do my best to summarize but keep the integrity of the story. So Stacey, who is clearly our family’s constant angel, always seems to have something up her sleeve. This story is no exception. There is a band called, The Damnwells that Stacey has been a fan of for some time, beginning with a song called “I Will Keep the Bad Things From You“. An absolutely beautiful song that I have grown to love. I had not heard of the band but I quickly dove in to their tracks and simply was in awe of their lyrics and composition.
We are also new to the blog world and Stacey had been reading a woman named Morgan’s blog called the 818. Turns out that she knows the Damnwells. It gets better. The lead singer, Alex and his wife, Angela had been working on an album of lullabies. And because of Stacey’s connection with Morgan, Alex and Angela read about our sweet Getty. I am so humbled to announce that the title for the lullaby album will be called “Lullabies for Getty”. Commence pinching! And proceeds from the sale of the album will be going to Sophia’s Cure towards SMA research in honor of Getty.
And in attempt to raise the bar even higher of incredible, on January 18th in Los Angeles, CA there is a Gala called Hope for SMA . Hosted by the Prendiz family. This amazing night will help raise funds for SMA research. In attendance will be many inspiring SMA families, Dr. Kaspar, Vincent Gaynor (Sophia’s Cure daddy :)) and to connect this circle, the Damnwells will be performing. Simply amazing.
If any of you are interested in buying tickets or know anyone who would offer to sponsor this incredible event please go the Hope for SMA link above. Thank you Prendiz family for putting on what will be a very successful and beautiful event.
Okay let me catch my breath. 🙂 Again there are tons more phenomenal news to give, but I can’t talk about some of it yet. Oh the suspense! I am not doing this on purpose, I just want to make sure all of our “ducks are in a row” before we spill the beans. 🙂 But I would bank that all of this stupendous news could hold everyone for a few days. It is for us. This is the kind of news that gets us out of bed everyday. This is the kind of news that renews our faith that anything is possible, this is the kind of news that solidifies the notion that people are good and they care about helping all SMA families find a cure.
All we want is time with our babies, it isn’t that big of a request if you think about it. It would have been something I would not have even thought about if I had a healthy child. But since I don’t, I want to find a way to make that so. Getty as well as all SMA children deserve to have hope and the security of a future.
I thank everyone that has purchased a bracelet. Perhaps someone hearing Getty’s story will open a door. I thank everyone for joining the Team Getty Runners or donating to a runner. Perhaps a person running along side of one of our team members could make a difference. I want to thank The Damnwells, Alex and Angela. You have never even met our sweet Getty, yet you are fighting for her and all SMA children as though you were their parents.
I am learning more and more that we are ALL connected. There is a common denominator that is so incredibly powerful. It is the diagnosis of SMA that so many people have decided needs to be cured.
SMA if you are listening, you had better watch your back because there are so many motivated warriors ready and willing in all kinds of ways to help eradicate you. Your days are numbered.