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.

Sunday, January 23, 2011


Two years ago, as the end of January approached I was excited. Georgia was almost that magical age of four months where she'd be able to jump around in her jolly jumper and play in her exersaucer. Granted, I had already noticed that she was quite weak but I kept hoping that as February 6th arrived, the exact date that she'd be four months I could place her in that exersaucer and she would play happily.

The memory of Georgia in that exersaucer will haunt me forever. At some point, I did place her in it and of course, she flopped over like a rag doll. The alarm bells were ringing like sirens at that point and I started to panic. When I think about this time it's still hard for me not to feel angry. How could I have been so blind? How did I not see that a hideous disease was ravaging my child's body? Was I stupid?

Oh sure, I can still come up with a dozen excuses. I was busy with three kids under the age of five. Georgia had had a string of bad colds and wasn't feeling well. There was no history of anything in our family. Every child develops differently etc. The truth is however that I was totally and completely blind.

Now, I did love Georgia fiercely. I loved her from the moment that I knew I was carrying her. I felt like she was my gift, my third and most precious child. My lucky number 3. She would complete our family. She was born at home. She was perfect and beautiful. She slept like a champ! In fact, when she was only a couple weeks old I remember telling a stranger that I had never been so impatient to see my baby smile. I just wanted her to feel how much we all loved her. I wanted her to be happy.

Even though she was calm, I held Georgia more than the others. I just always wanted to have her close to me. All of my decisions regarding Georgia's care were out of love (Thank you Devon for reminding me of this). I took her to the hospital out of love and I brought her home because I loved her. I sang to her, rocked her, changed her and in the end held her because I loved her. I needed her to know even in her last moments here on earth that she was loved.

The more that I reflect, the more that I learn about myself and the more I accept. For whatever reason I wasn't meant to see SMA until I did. Even when I look back at pictures I don't see SMA. I only see Georgia. When I look at other children with the same condition I still don't see SMA. I don't see the masks and the equipment. I see only beauty and perfection.

I have come to a new understanding about myself and my life with Georgia. Of course I was blind. I was blinded by love! A love so strong and pure that SMA and even death cannot touch.

Love to you all,



  1. "Even when I look back at pictures I don't see SMA. I only see Georgia. When I look at other children with the same condition I still don't see SMA. I don't see the masks and the equipment. I see only beauty and perfection."

    This this this this!! I love this! That is the same way I feel when I look at Dakin. The tubes are invisible to me. Love this.

    I think there are some people who choose palliative for selfish reasons--they don't want to deal with a special needs child, etc. But I know for sure you are not one of those people. And I also know that Georgia knew/knows exactly how much she is loved. I have no doubt of that.

  2. yes! the love we have for our children is so strong!

  3. Kristen, your incredible love for Georgia is felt and seen still to this day....it is a love like no other and I know she still feels it! Your love gave you the wisdom you needed in those days, to do what you knew was best for Georgia even when those answers were hard to "hear". She knew you would always do what was best for her and bringing her home-what a gift!! You gave her such an incredible gift in those weeks, to be home with her family-the people she knew loved and adored everythign about her, the people who brought her laughter back when you thought you wouldn't hear it again-that to me says it all!!
    Blinded by love....this allowed you to see Georgia, not the SMA, and do what SHE needed you to do for her. When you needed to find it, you did, and every step from there on out was out of love-you are incredible, inspiring and such an awesome Mom to all 4 of your girls-they are so lucky to have you! (and so are we of course!)
    Love and hugs, Em

  4. A mother's love covers a lot, doesn't it :o)

    I was so fierce to defend Olivia ("there's nothing wrong with her!") because I saw so much of myself in her. I think it was a mercy that we didn't see her SMA until Nicholas passed away. I don't think I could have handled it all at the same time.

  5. Dear Kristin,
    I was just going back through your blog and the one on Oct 17, 2010 caught my eye...Thank you for being so kind and considerate knowing that Candace is grieving the loss of Kaden. We all miss him so much as you well know. We also are so happy for you and your family to have such a beautiful baby once again. May you all be a healthy and happy family.

    Love from
    Sharon Lofgren (Candace's Mom)

  6. Kristen,

    I can so relate to the exersaucer and worse, the Bumbo. The image of Ethan in it will haunt me forever. The sight of his little body, struggling for strength to hold himself up which ineviatably would lead to his head flopped onto the tray where it would stay. I would try to convince myself that if maybe I jammed a tea towel here or there, behind his back, or maybe a phone book under his feet, or maybe it's just because he is tired, or just not ready...any reason NOT to face the fact that something was wrong with my baby...something was WRONG!

    Hypotonia stole my time and memories with Ethan as a baby. When I look back on pictures, all I "see" is the fright I felt each and every day that something was really wrong with my baby.

    Thanks for sharing Kristen...thinking of Georgia :)