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, March 31, 2010

No April Fool's

On Wednesday April 1st, the results were finally in. The neurologist's diagnosis was proven correct - Spinal Muscual Atrophy Type 1. What I remember most about the few minutes after being given the news was the look on Georgia's face. As Mike and I tried to compose ourselves while a team of medical experts was getting ready to meet with us, Georgia watched us with a look of utter peace. Mike and I both noticed and asked each other if it were possible to have a six month old baby try to comfort her parents simply with a look. I'm pretty sure that most parents of a child with SMA would say that it happens all of the time.

Approximately, half an hour later the 'team' had been gathered to answer our questions. We had very few. Mike and I were now on a mission to get our baby girl home and were ready for battle. The meeting was tense for a while as we were obviously grieving and there were some issues about how the news had been delivered, but getting Georgia home was our priority and it took the team very little time to realize that we weren't backing down.

I just want everybody to understand that we didn't bring Georgie home to give up on her. On the contrary we wanted to offer her as full a life as we could and we believed that her being at home with her family was the place to do that. The only medical options that we were offered was the idea of intubating her when things got worse and possibly traching her. Georgie's condition was advancing so quickly that we just wanted her to feel loved and enjoy her last days on earth.

Miraculously, with the help of some amazing people we would all be home within 48 hours.

Love to you all,

Kristen
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1 comment:

  1. EmmaApril 1, 2010 at 2:30 PM

    I don't think there is a single person out 'here' that thinks you brought Georgie home to give up on her...you two are the most incredible, strong, wonderful parents and were given Georgia for a reason. I have no doubt part of that reason was because you knew what was best for her, you knew what you had to do to make the time she did have here with you the best it could possibly be and you certainly did that. I remember the pics and videos from when she was home, she was a different baby than in the hospital...she was her happy, content self. She had time to relax and enjoy watching her big sisters, see her parents in their own environment again and be in the most comfortable, loving place she could be-in your home and ultimately in your arms. Hugs, Em

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