Six

Today I am remembering my angel that never lived to see her first birthday.  Georgie would have been six years old - a champagne birthday! While we continue to celebrate her very special life, there will be no champagne. In many ways, today is the saddest day of the year for me.  It is the day that reminds me of everything that might have been...

In a recent family picture Mike immediately noticed that there was a perfect space that should have been filled by another one of our girls.  With every milestone that our family or one of our kids mark, we notice her absence.  We did not send her off to school in September with her sisters.  We did not take her to the zoo or swim with her in the backyard this summer.  We will not be buying her Christmas presents or helping her write a letter to Santa.  We will not be taking her on holiday with us in January.  Yes, even six years later we both still have random moments where we feel like we're missing someone.

While it would be easy to let darkness and despair overcome me that is not what Georgia was about and certainly not what she would ever have wanted.  She lived a very short life but it continues to impact so many others'.  My daughter was full of light and brought joy into our family.  While I will never hold her hand to cross the street, I can remember the way her little hand felt in mine.  While I will never see her smile of hear her laugh again, I have many pictures and videos to remind me.  While I will never brush her hair, I am lucky enough to have 3 daughters that let me do just that!

On days like today Georgia's absence is overwhelming.  It's very hard to celebrate a child's birthday without the child being present.  I could easily let myself be overcome with the feeling of having lost her but today I am reminding myself of her ever presence.  I carry Georgia in my heart every minute, of every hour of every day.  It is she who reminds me to be grateful.  It is she who reminds me to laugh it off.  It is she who reminds me to be kind and to give generously.  She was a gift!

Today we will not be having a party or even lighting birthday candles.  I am sure there will be tears but there will also be smiles and laughter.  We will be grateful to have one another and grateful to have known her.  Truly, it was an honor.

Happy, happy birthday Sweet Girl! We love you and miss you always!

Love to you all,

Kristen

Momentum

Five years ago, Georgia died less than three weeks after her diagnosis.  As a family, we had only just begun to understand anything about Spinal Muscular Atrophy and she was already gone!  It was devastating and heart wrenching.  While I knew, that I it was too late to save my daughter I could not sit idly by as other families continued to lose their babies.

For the last five years, our family and community has continued to try to raise awareness and funds towards a cure. This has not always been easy.  To say that is emotionally exhausting at times is an understatement.  The truth of the matter however, is that we really are getting close!

The SMA community has been getting louder and more powerful by the year, thanks mostly, to some very influential and inspiring people in the states. This past May the first infants with SMA type 1 (just like Georgia) are receiving the first ever trials of gene therapy.  There is also something new and fun happening, that while isn't directly related to SMA,  can only help!

The ALS ice bucket challenge has already raised over $70 million and it's everywhere!  People all over the world are learning about this brutal and devastating disease!  What many people do not know is that SMA is considered Baby ALS in that it is a strikingly similar disease that it affects much younger individuals.  The momentum created by this challenge is opening up a conversation and creating a new understanding.

Make know mistake, momentum is a powerful force!  It is a strength that allows something to grow stronger and or faster as it continues!  The families that are waiting for cures to ALS and SMA, need this momentum.
It allows parents even like me to feel a new sense of optimism and support. As we approach this year's Georgia's Journey of Hope and what would have been her 6th birthday, I can honestly say that I am feeling... HOPEFUL.  

Please continue to support these worthwhile causes.  You can do so by choosing to participate in events, volunteering or donating.  The momentum is growing faster and we are all moving towards something miraculous that will change lives forever.  Won't it feel good to say that you were part of it?

Love to you all,

Kristen

Missing You

Five years ago, on this day, when the veil between this world and the next was opened, I knew that you had chosen your time. In those brief moments,  even as I held you in my arms I saw you before me: a smile on your face, a skip in your step as you lifted your hand ever so slightly to wave. There was joy on your face even as my heart was breaking, and I knew that you were finally free from the bonds that held you so still here on earth. Knowing that you were free and had known only love allowed me to say good bye.

While over the years I have made peace with much of it, the world since losing you has become that much more confusing and sometimes painful. 'Let go of the things you cannot change.' 'Forgive yourself.' 'Be grateful.'  These are the catch phrases of the day and truly words to live by but I still have days where I want to rage at the world!  You taught us all so much about love but not how to let go. How do I let go of a part of myself, of my heart? Could I have fought harder for you? What do I do with all the 'missing'?

I miss your smile and your giggle. I miss holding your hand and giving you a bath. I miss watching your sisters play with you. I miss watching your daddy hold you. I miss holding you. You would be 5 today. Would you have gone to kindergarten or would we have home schooled you? Would you have loved music as much as you did? Would it have been Mozart or Katy Perry? Would your hair be long like Rapunzel's? What would your favorite color be? Your favorite tv show? Who would your friends be?  Would you be shy or outgoing?  I miss knowing all of this.

I hope that I am right. I hope that you left feeling loved and that I had not given up on you. I would be happy to be fighting alongside of you right now. I let you go because I knew I had to but that doesn't mean that I wanted to. I let you go to fly free but know that I will spend every day of the rest of my life missing you.