A blog about family life and remembering our sweet Georgia, who died of SMA.
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.
Tuesday, April 14, 2009
no expectations now
I should have known Georgia would have a good night when, driving home from the airport after dropping off my sister ("auntie trish") we saw the Blue family's Christmas lights on. Calla and Maya were very impressed when I explained why they were on, and it's fitting that most of the lights are twinkling stars.
As Kristen mentioned the good night carried into the morning, and as it turns out Georgia had a great afternoon also! We took her mask off and she was a bit fussy at first, we wanted to take her outside and even hooked up the portable O2 canister, but she didn't seem ready. So we were about to put her mask back on but Kristen tried laying her down in our bed and she suddenly perked up. So we played with her there for quite a while (see the attached video) and then put her in her baby swing where she hung out happily for over an hour. The palliative care team (two doctors and one nurse, fantastic people all of them) arrived at this time for their daily visit, and were very impressed at how well she was doing. Her improvement is amazing after they had told us she only had "hours" left. Prayers really do work!
After the scare we had Saturday night I really feel like there are no expectations now. Kristen and I both understand that Georgia could leave us at any moment. Questions with numbers for answers -- hours? weeks? how many? -- are almost pointless. How can we enumerate that which is infinitely precious?
So we just take it day by day, hour by hour, sometimes minute by minute. And thanks to all the help we've been received (friends taking C & M to play at their place, meals, prayers, etc.) we are able to focus more of that time on what really matters.