Getty’s Two!
From Mark:
Getty’s two.
GETTY’S TWO!
There was a time when I couldn’t imagine having a child. Then there was a time when I couldn’t imagine having a daughter. Then there was a time I could easily imagine years filled with playful laughter and fun with Daddy’s little girl – and she would always be just that.
Then there was SMA.
“It’s degenerative.”
“It’s terminal.”
“There’s nothing you can do.”
“Take her home and love her.”
“Just because we CAN do certain things doesn’t mean we SHOULD.”
“There’s no data to support that.”
“It’s not medically necessary.”
“It’s excluded.”
“Are you sure you want to do that? Why would you want to do that to a child?”
“She probably won’t live to see age two.”
These are doctors’ words. They echo throughout the SMA community. They are words of fear, defeat.
“You will soon know more than your doctors about SMA.”
“Don’t trust the doctors.”
“SMA parents know their children better than any doctors.”
“Advocate for your child.”
“You need to tell the doctors what to do.”
“Your doctor is wrong.”
These words also echo throughout the SMA community. They are words of empowerment, hope.
Newly diagnosed families are flooded with conflicting opinions and advice at a time when they are already lost, confused, traumatized, and afraid. Our family was no different.
If you intervene, are you prolonging life for its own sake? Will you cause more harm than good? Is it best to let nature take its course?
These are enormously important and infinitely deep questions that needed answering very quickly after being told Getty wouldn’t make it past two. We managed to answer the question fairly quickly though, with a vow to give Getty the best quality of life possible in whatever time she has with us. “As long as she’s happy, we’re doing the right thing.”
Getty’s second birthday is a huge milestone. It’s a sigh of relief. It’s an opportunity to celebrate life and love of family. It’s a time to look into her eyes and admire our sassy little fighter. It’s a time to give a huge middle finger to her obstructors and naysayers. It’s a time to reflect on life. It’s a time to thank all those who helped get her here – thank you! It’s a time to honor my wife, Getty’s wonderful mother – both the nurturing mom and the dragon mom. It’s a time to re-imagine visions of our future … GETTY’S future.
My girls are beautiful, intelligent, wise, and strong. I love them so much and can’t wait to see what tomorrow will bring. Daddy’s baby is now Daddy’s little lady, and she’s beating the odds every day.
Getty’s happy. We’re doing the right thing. With love and pride, we hoot from the mountaintops …
GETTY’S TWO!
5
Apr
2012
5 Comments
Apr
2012
In A Moment
From Kate:
In a moment:
I gave birth to a beautiful little girl.
We became a family.
Our lives changed forever.
Our lives changed FOREVER.
I stubbornly let go of what I thought motherhood was going to be like.
I lost control.
We embraced every second of every day.
The future seemed uncertain at every corner.
My heart skips a beat when I catch Getty looking at me and smiling.
You simply no longer have time nor energy to sweat the small stuff.
There is a celebration of every toe twitch, finger tap, head roll, and smile.
The world can stand still when there is an emergency.
There is a sigh of relief when all is okay.
SMA doesn’t even know who he messed with.
Realizing that I never knew love before Getty. She encompasses every sense of the word.
Becoming a mother is so incredibly awesome, the best “job” a person could ever have.
You can become a nurse, a respiratory therapist, counselor, advocate, nutritionist, physical therapist, occupational therapist, and teacher, in a moments notice and all at the same time.
I became a world renowned singer to Getty’s ears. (If she only knew!)
Having marathon book readings is the coolest, but can’t deviate because she knows exactly what is happening in the book.
I feel like the luckiest mom on the planet for letting me be Getty’s mommy.
I will hear the sounds of coos coming from her room as they will travel throughout the house like a breeze. It is her polite way of letting me know that she is ready to start the day.
A sense of relief that she is getting the nutrients she needs to continue to beat the odds healthy and happy.
Making her bed and keeping everything nice and tidy feels comforting.
I am realizing that I need her just as much as she needs me. For so many different reasons.
Noticing that Getty’s hair is getting longer and thicker.
I realize that she is turning into a little lady.
Understanding that I have far more strength and energy that I ever thought I had. And then with a lot of coffee I can go to another level.
Getty is a proud a girly girl. I love it!
I can go from nice mom to dragon mom in a nano second if Getty needs something. (Doctors, insurance providers, DME, Apria; you know what I am talking about.)
I realized how smart Getty is and then I became even more desperate to find more ways to communicate with her.
Getty is defining what she is accomplishing and there is no test, no evaluation, and no professional that can label her abilities. She is our super hero, our genius, and master of her own destiny.
I was humbled.
I am in awe of her giggles. Her timing is impeccable.
I stopped fighting the loss of control and allowed myself to just be.
My eyes see a different world.
I realized who my friends are.
The celebration of 1st and 2nd birthday’s bring such overwhelming comfort. Seeing ahead to the 3rd and 4th and 5th now does not seem unattainable like it once did.
A cure will be found.
4
Apr
2012
12 Comments
Apr
2012
No, Thank You!
I’ve gotten a couple emails and comments in the last two days thanking me for Getty’s Virtual Birthday Party. It’s a motto of mine to always appreciate thanks when they are given so let me start by saying, you are very welcome. Here’s the thing though, this party was just a little idea in my head when Getty’s first birthday came around. I knew this was a little girl that might not celebrate her birthday the way most children would because her birthday falls during RSV season. Being the party planner, I still wanted Getty, Kate and Mark to have a party.
Sounding totally cliche, it wouldn’t work without all of you. I had an idea, but without you: without the donations, without the party goers, this event would be a complete flop. It is because of you that it was so much fun and such a huge success. So, I thank you for doing what you did to make this party the best I could have ever hoped for.
It can’t go unsaid that the donations that came in were AMAZING. So many that prizes were bigger and most people won two items! I wanted to do one last shout out for those that donated good. If you didn’t win something, I highly encourage you to check out some of the websites for these generous people and companies. They are who we should support when buying!
Linda Adams
Jacqueline
Katie Angelone
Mary Johnson
Thanks again and love to you all!
28
Mar
2012
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2012
Comment
And the winners are……
We are so excited to let everyone know who won that we just can’t wait till noon! We assigned each comment an entry number based on the order in which the comments came in. We then used random.org to pick a winner at random for each prize. The winners are as follows:
Getty Owl Gift Set : Debie Trotti
Owl Hat and Bows : Nicole Juntunen-Williams
Tie Purse and Keychains : Angelina Bohannan
Say What Gift Certificate ($40 value) : Shannon McClain
Wink the Blabla Doll : Shannon Leach
Mother and Child Owl Apron Set : Char Allen
California Footwear Sandals : Jennifer Webster
Clip Holder and Owl Clip : Momma Trumble
Windchime and Upholstery Fragrance : Kim Saunders
Purse and Owl Earrings : Kim S.
Udderly Smooth Gift Set : Lacey
Necklace, Earrings and Gift Certificate : Denise Lamora
University Art and Paragary’s Gift Certificate : Susan
Clip Holder and Owl Clip : Donna Gagnon
Doll Clothes and Pillow : Melanie O
California Footwear Sandals : Autumn Nguyen
A Runner’s Gift Set : Doni
Prudence the BlaBla Doll : Holli Spaulding
Tiny Prints Set w/Gift Certificate and Crochet Owl w/Clip : Jenn Lozina
Girls Crochet Hat and Tutu : Kalynn
Purse and Owl Earrings : Nikki M.
California Footwear Sandals : Dannete Lyden
Kindle Fire : Jen Hanson
Thank you to everyone that entered, sent in videos and partied along with us on Sunday and Monday! Winners will receive an email from me (staceyball@gmail.com). Winners must email me back by Thursday at 1opm to claim their prize or a new winner will be chosen. Please reply to the email with your mailing address.
Congrats to everyone!!
27
Mar
2012
9 Comments
Mar
2012
Getty Owl Gift Set
We did it! We wrapped up over 24 hours of giveaways. What a perfect celebration this was. Don’t forget, all giveaways have a deadline to enter of Monday March 26th at 11pm PST. if you are just arriving to the party on Monday morning, well..we will still be here to party with you.
Our final item tonight is all about awareness. We are simply calling this the Getty Owl Gift Set. This will include:
A Getty Owl Foundation Bracelet, tote bag, t shirt, sweatshirt and hat. Also included will be a physical copy of the tribute album Sweet Water Child – Lullabies for Getty.
We know that the winner of this will wear these items proudly and help us spread the word and raise awareness for SMA.
Leave a comment vowing to tell at least 7 people about SMA in the next month.
Thanks for partying with us, I can only imagine how the 3rd Birthday Party is going to look!
26
Mar
2012
58 Comments
Mar
2012
