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Bittersweet Symphony This Life

From Kate:

I feel compelled to post this before Getty’s 1st Birthday. Friday is going to be so terrific for so many different reasons, and I don’t want the blues to consume me, so I thought perhaps blogging about it now would be kind of like a preemptive strike. Those work right? 🙂

I have been very emotional lately and I think it really comes down to a few things.

1st) Getty will be 1. When we sat in that neurologist’s room on that  fateful day in July, I honestly didn’t think we would be celebrating her 1st birthday with her. Our neurologist  had painted such a grim picture of SMA that I thought maybe we had a few months, if that. But here we are, and she is going to be 1 in two days; I can’t tell you how amazing that feels.

I can’t thank the SMA community enough for helping us care for Getty: supporting and guiding  us to ask the right questions to doctors who don’t educate themselves about this disease. I can honestly say, I attribute all of the vitality of our little missy to your help. She is healthy, she is thriving, and she is so incredibly smart. I am so blessed to be her mommy and to also have a chance to get to know her. So I thank you all.

Okay give me a second while I wipe my face of pure weepies. These are certainly tears of joy and tears of gratitude. We need to continue to all stick together and continue fighting for our babies, warriors, and angels. We need a cure like yesterday, so let’s keep pushing on!

2nd) I have been thinking a lot about life in general. I have moments of pure spontaneous meditation, when my body will be doing one thing while my mind is doing something completely different.

So today’s pause was about the meaning of life. I know, really deep, but really, what is the meaning of life?

Another thought was yes, SMA is a devastating disease and, not to trivialize, but if Getty’s life is theoretically on a “timeline”, well isn’t everybody’s? I mean just because she has a terminal disease doesn’t mean I am going to live any longer than she. I know this is sounding morbid, but stick with me.

What gives us (meaning just people in general) the right to not take in life as a gift every day? What gives us the right to assume we have tomorrow? I think that is really the point I have been learning for myself since this journey began. I don’t have any guarantees, so since that is the case, I need to live life to the fullest, and Getty has taught me that. She lives with such grace and I am so proud to be her mommy.

So what is the meaning of life? To live life like you may not have tomorrow would be my answer right now.

3rd) So turning 1 is certainly an awesome milestone. It is bittersweet to see our little girl getting so big. I’m serious, Getty is 23 pounds and 29 inches. They sure grow up fast. I wish time could stand still on Friday, but since it can’t, we will take lots of pictures and make tons of memories.

I hope Getty appreciates the crazy amounts of crepe paper that will stream across the house. I think I bought too much, but damn it, I am going to use it, even if we have some streamers in the bathroom. 🙂

I have also bought a few presents for her that I have restrained myself from showing her. I have already wrapped them. So that little sneaky snake can’t peek. 🙂

Morgan will be coming over to take pictures and my hope is to post on the festivities the following day. Then, after her birthday, we will celebrate 13 months, and 14months, and 15 months, and……you get the pattern.

I just want to thank everyone for all the kind well wishes Getty has received so far. It is so nice to know that you are thinking of Getty on her big day. We are equally so excited to see the birthday videos. Thank you Stacey for your awesome idea, and thank you for having Leyton set the bar so high with his tambourine solo.

Getty Emelia Storm

Born March 25, 2010 at 8:16pm

Happy Birthday Little Owl!

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  • Danna says:

    Happy early Birthday Getty!!! I hope that you have a wonderful day!!!
    P.S. The picture is DARLING!

  • Oh my goodness. Thank you Miss Getty for gently entering into my life, you give me purpose dear girl. I am so proud to know you, and I look forward to your little diva shoot on Friday. Feeling blessed because of you Owl!

    Morgan 🙂

  • Eileen says:

    Happy birthday bella nina, you have taugh me more than you know!!

  • Oh, she is so beautiful!! I just want to squeeze her. I know exactly how you feel. Ella turned 1 yr old on a Friday and we found out on Monday that she had SMA. We had a birthday party planned for her the following weekend and all we could think was “this is it”. I cried the whole week trying to get things together. Luckily my family stepped in and did most everything. I did make her a giant 3-tiered cake though. But, the last two and a half months I have come to realize that Ella isn’t going anywhere just yet and that we may be blessed with many more birthdays. There are so many amazing kids with SMA and they continue to give me hope. You are absolutely right, this makes you realize that EVERY single day and EVERY single moment is such a gift! (wipe tears here…) 🙂
    So, Happy Happy 1st Birthday Miss Getty Owl! You are a beautiful, amazing, inspiring baby girl with equally amazing and inspiring parents! Have a wonderful party and enjoy a little taste of cake 🙂 I know that there will be many more for you too! Hugs to you all <3

  • How can such an adorably precious being have anything fighting against her? She is gorgeous. Happy Birthday to your strong little baby …and to many more as well.

  • Leslie Stumpf says:

    Kate, Mark and Getty,

    We are looking forward to your birthday celebration tomorrow!! The girls did post a you tube video singing happy birthday to their beautiful niece, Getty!! So as not to ruin the video, John and I did not attempt to sing :). Anyways, the girls sent a birthday pacakage to Getty hope she gets it today or tomorrow. Looking forward to tomorrow.

    John, Leslie, Rachel and Sarah

  • Evelyn & Evin Stump says:

    Happy Birthday, you beautiful, precious Sweetheart. Your Grandma & Garandpa in Temecula love you.

    Evelyn & Evin

  • Penny says:

    Happy happy day incredible Miss Getty! What a sweet little owly you are. I think of you everytime I see a Hooty hat or clippie!

    Here’s to hoping you’ll see too many more to count!

  • Tara says:

    Happy Birthday Baby Getty 🙂

    Kate, I just want you to know that you and your family amaze me. I think I just read almost every post on Getty’s website, and found myself realizing that you, Getty, Mark, and so many others in this world are truly heroes. Your deep pondering about the meaning of life really made me think about the fact that each day is truly a gift, and that we are never guaranteed tomorrow. I think Getty’s story has helped me to start appreciating things more, and she truly is touching so many lives. I pray for your family regularly, as many people do, and it shows that prayer’s do come true because of all the angels who have stepped into your life. I love the story about Getty’s new limo :-). I look forward to next weekend’s rummage sale and spaghetti feed. I am also thinking about trying to do some of the Team Getty walk/runs. You are so missed at San Juan, but there’s no place you should be, but with that beautiful bundle of joy. Thank you for making a difference in the world through your courage, optimism, positive spirit, and dedication to a cause that needs warriors. I truly admire you.

  • I feel like covering my house in streamers in honor of this major milestone. Getty, you are just kicking butt little one, I am so proud of you! And Kate…there are no words for the ways in which you inspire me.

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