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Diagnosis Day 4 Years Later

From Kate:

“Call my Mom and tell her to meet us at the house.” I said to Mark as we drove home from the neurologist’s office. I could not do it myself. I knew the slightest crack in my voice would expose to my mom that something was wrong. I just needed them to be there once we got home so they could hear it from us, they could know immediately and they could offer support. Because we needed it.

“Your daughter has Spinal Muscular Atrophy.” exclaimed the neurologist. Silence. “How long do we have?” I asked. “One year but not more than two”. Silence. “And there is nothing we can do?” Mark said. “No”. Silence.

With three pairs of eyes staring at Getty as she giggled and cooed we were discussing the prognosis of our child and his patient.

“Thank you doctor”. We scooped her up and we left. We were taking her home. We were taking her to a safe place. We were taking her to a place that had her perfect crib and her perfect changing table and her perfect mobile and her perfect clothes all neatly hung in her perfect closet. All of her toys and blankets were perfectly placed in the room. The paint had just dried and it was a perfect shade of light blue. You see I made everything perfect. I had full control of Getty and her environment and now I had none.

My mom and dad were at the house when we got home. We discussed the diagnosis and the prognosis. Silence. Crying. Silence. Hugging. Silence.

Thankfully we (our family) were given the luxury of time. Getty was healthy to the point that she was never hospitalized that entire year after diagnosis. Looking back we had the luxury of time to make decisions about care. We had time to get used to the machines that were/are ultimately saving her life. To make decisions about diet. To make decisions about what this genetic condition was going to do to her and what it would do to our family. We had time to make adjustments. We had time to learn and to listen and to absorb everything we could from……..other families.

We are acutely aware that Getty was very lucky in her first year after diagnosis. It takes my breath way with the realization that we had no scares until we seemed to be armed and ready.

This diagnosis has changed the pendulum of our household. Our family looks vastly different than what it did on July 30, 2010.

As Getty’s mother, I am her willing and ferocious dragon. I will strike at anyone when need be. The words used are eloquent and resolute, but they will leave anyone feeling scathed. My metamorphosis started in the doctors office diagnosis day. I started out as a mama bear and have slowly morphed into a fire breathing dragon. I don’t like what it has done to my overall self. It has made me hard and hot to the touch. It is hard to take off this armor, but I would rather be in it than not have the tools to fight for Getty’s care. But my apologies do lay to the general population that has been burnt by my fire and probably did not deserve it. 🙂

A few days ago my heart had grown heavy. Typically there is a reason, but I could not quite place my finger on it until  I sat down long enough to feel, to listen, and remember what that day entailed. I can say that life as we knew it changed forever. I can say from that moment we became new people. I can say that in an instant a new normal was created. I can say that we were scared. I can say that we were petrified with what was to come. Those are all valid, however those words seem superficial and perhaps generalized.

There is no way I can “sum up” or “generalize” what this all feels like, what it sounds like, what it looks like to anyone except for someone that is in it. It is that simple.

It is scary. It is bi-polar. It is routine. It is uncertain. It is real and what we do is literally fight off a beast every single day. Every single day to ensure that Getty is safe, happy, and healthy.

It has been four years since that doctors visit. We have held off this monster for four years. We have found ways to allow Getty to thrive when we were told to just “take her home and love her.” Well yes we have done that and then some.

There is absolutely nothing we regret. I have snuck away to write this post while Getty sleeps soundly. I have not left her side since she was born except for early mornings to actually get some things done around the house. 🙂 Getty is happy, she is thriving, she is SASSY, she is living life with pure elation.

She has affected our lives for the past 1,580 days. She is an incredible human being who has the ability to get anything she wants with a look or a coo. She is spoiled. 🙂 Getty loves, is curious, and is often hard to excite. You should see how how hard we try to get her to show interest in certain things. 🙂 I have never jumped up and down or made a fool of myself  so much just to get an eye brow raise. But man, when I get it, it feels like I won a medal.

Getty is adding and subtracting. She enjoys painting, music, and all things Monster University. Her timing of giggles and coos during a book or show can sometimes be creepy. Adult humor she is slowly getting and that alone is funny. Cognitively she is not impaired and so I relate her brain to a sponge that is just absorbing anything and everything, even things I don’t realize she picks up on.

This journey is a beautiful one, although it absolutely has its pitfalls and there are many times I have found myself down without skills to get myself back up.

So while today, and every July 30th will bring a heavy heart, it will also remind us of what we have. A beautiful child that lives and loves without abandonment. And so do we. She couldn’t be a better teacher.

 

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A Debt of Gratitude. SF Marathon Recap

From Kate:

This past weekend has been a whirlwind of emotions. This past weekend was an incredible experience. This past weekend was magical. This past weekend made a difference.

The SF Marathon was this weekend. Our TEAM GETTY crew was nothing short of a whole bunch of amazing individuals that offered their love, support, and physical exertion to help spread awareness about SMA and raise funds to help affected families of SMA.

Ultimately being chosen as a charity partner for the SF Marathon, was certainly a huge highlight of this event. Getting the opportunity to have our logo on various media outlets was pure celebration. People were within arms reach of learning more about Spinal Muscular Atrophy. That made being selected so worth it. And then something happened that was even more unexpected.

After being chosen, our beautiful TEAM GETTY crew started to take shape. Friends, acquaintances, relative strangers started to sign up and became a mighty 20! 20 runners that were so excited about this opportunity. To run for Getty and the foundation, no it was more than that. It was a sense of camaraderie that made all of the difference. You were all running with all of our kids in mind. It was beautiful. I, we can’t thank you enough.

Thank you to:

David

Tracy

Brad

Frank

Samantha

Jennifer

Ben

Christine

Morgan

Liz

Carley

Gina

Carl

Randy Kay

Brenda and Britney ( We love you guys and wish you could have been here. You were here in spirit.)

Krista

Chrissy

Omair

Thank you all for being present and offering your physical talent to make this such a fun and rewarding opportunity for Getty Owl Foundation. It was not an easy task. For those that ran the 1st half marathon, like I did, waking up at 4:30am to get in line to run by 6ish am was not pleasant. 🙂

Having a platform to spread awareness was an honor and the hope is that education and curiosity was accomplished. I even had a few people pace along side of me to ask about our shirt. BAM! “Take that SMA, you can’t hide”, I said in my head as I answered some questions. 🙂 It was pure joy to teach.

In the process, every TEAM GETTY runner raised funds for the foundation. I am happy and so humbled to announce that the team raised over $2,000. This money is already earmarked for the purchase of more bi-pap masks, pulse oximeters, and other needs we have for our equipment closet. Thank you!

Running a marathon or a half marathon is not an easy task. There is a lot of training involved before hand. I appreciate the work that each person put on individually to make this run happen. Thank you for your time and commitment.

Here are some pictures from the marathon. Some are incredibly breathtaking. Running over the bridge was such an amazing experience. Let’s face it SF is beautiful, it is just a matter of braving the hills, to which we all did.  Thank you TEAM GETTY crew. You made memories that are so very special to our family and foundation.

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Photo Shoot for Miss Getty

From Kate:

We have missed Morgan so much this past year. She has been in Australia doing her thing and we are so proud of her efforts in school. When she is able to come home for even the briefest amount of time we try and get in a photo shoot for Getty. Morgan is always so gracious with her time and we were lucky enough to get a shoot in before she went back to her Aussie home.

 

We gave Morgan the title of Getty’s Big Sissy because she has always been so sweet to Getty and I know that she looks out for her, thinks about her and loves her just as a big sister would. Morgan we love you and we do consider you a part of our family.

 

So Thursday Morgan visited and took some beautiful pictures of Getty. One in particular that I wanted to recreate from when Getty was only 16 months old. My how time flies and my how big and gorgeous Getty is getting. Such a big girl. We are so proud of her.

 

Getty and Mommy

 

 
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Upcoming Events

From Kate:

Lots of great events are coming up this month and next that I just wanted to mention.

July 27th: Our TEAM GETTY crew will be running either the half or full marathon at the SF Marathon, in San Francisco. It has been a pleasure and honor to have been chosen as an official charity of the race and we are equally so excited to have a team participating in the day. The idea of runners and spectators alike learning about SMA, is a great feeling and I am always overcome with emotion when I stop to think about it.

If you would like to donate to our team, you can go to our Crowdrise page and support our running crew. We thank you in advance. If you are already signed up for the marathon and you see one of our runners in our black tech shirts, throw us a high five. If you see a tired woman hunched over, but still moving, that is me. Simply tell me to, “keep on truckin.” That will for sure keep my spirits up. 🙂 If you are a spectator give us a yell. This is not an easy race and I know whatever support we hear and get will feel like a million bucks. 🙂

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August 2nd: It’s our 3rd Annual SMA Awareness Night at the Sacramento River Cats. We are so excited to have their support this year while they host a special night to raise awareness for Spinal Muscular Atrophy. We are currently selling tickets for $17 a piece. Children under 23 months are free. Simply call us at 916-476-3977 or email us at hoot@gettyowl.org. We have the tickets and we will mail them out as they sell. Space is limited. All money raised supports Getty Owl Foundation. Last year we had a great group of 60 come and enjoy a great game and help spread awareness.

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August is SMA Awareness MonthThe entire month of August is Spinal Muscular Atrophy Month. For us, every day is SMA day, but for those that might not know much or anything about SMA, this gives us a chance to educate and empower those that might not. We have fact cards and bracelets to offer anyone that would like them. Here is the catch, you need to educate as well. We will give you the tools and your part of the bargain is to spread the good word about the #1 genetic killer of young children. Knowledge is power. Here are two easy ways you can become an SMA warrior.

1) Ask for a Tell 6! packet.

2) Print out your own SMA Tool Kit.

Easy Peezy!

 

So here is to a successful and safe SF Marathon, here is to a fun Sacramento River Cats game, here is to SMA Awareness Month, and here is to a continued and concreted effort to END SMA!

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