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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!