Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Wednesday, August 17, 2011

SMA Awareness

I have been meaning to sit down and write for over two weeks now but just haven't managed to do it. August is SMA awareness month and I feel like I should have a lot to say but have been struggling. It's been 2 years and almost 4 months since we lost Georgia. Most of the time I feel at peace and know that I should be counting my blessings. I know that I am so lucky to have three beautiful and healthy girls here with me and I know that most people can tell that we as a family are doing well.

That doesn't change the fact however, that my beautiful blue -eyed daughter lies in a fluffy pink casket below the earth's surface over by the fountain. It doesn't change the fact that there is a continual void in our family and that Calla and Maya don't miss their sister. Every time I hear a little girl being called Georgia or Lily I turn my head and stare. How is it that they got to keep theirs?

The truth is that I am at peace with the loss of Georgia but I can't stand knowing that there are so many children out there struggling for every breath that they take. I hate knowing that there are so many parents living in a constant state of anxiety wondering what's next and will there be a tomorrow? Phrases like., "We know that Gwendolyn is deteriorating." "Lucy can no longer bring her hands up to her face." And, "Today we had to say good- bye..." make me want to help and yet at the same time feel so helpless. I know that these families know pain like no others. I know that they struggle with almost everything that they do. That is why raising awareness about SMA is so important.

Aria is almost 15 months old. She runs around now. She dances and screams at the top of her lungs. She has mastered climbing onto the coffee table and the back of the couch. She even likes to climb into the rocking chair and rock it standing up. She laughs at me when I say, "Danger!" I marvel at her physical ability and her zest for life. Georgia too had a zest for life, and so do so many of these kids. Right now we can only dare to dream that one day they too will be climbing a coffee table or dancing around.

I will be running my first 10k this weekend in honor of all of these SMA kiddos and families. Georgia's Journey of Hope will take place on Sunday October 2nd, at Glenwood Community Centre. I am now starting the call for volunteers.

Oh yes, I know that I am lucky but I am also dedicated to helping raise awareness about SMA. Will you?

Love to you all,

Kristen

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