Three

Georgie would have been three years old today. It is a heavy day for me, full of all kinds of 'could have beens'. I wonder what she would have been like now. Would her hair have lightened up like her sisters'? Would she be quiet and cautious like Calla? Mischievous and dramatic like Maya? Playful and determined like Aria? Would she be smart like her dad, stubborn like her mom? Would she sing like an angel?

It hurts to ponder all of the things and yet I can't help myself. We carry Georgia with us each and every day. I am as aware of her birthday as I am of her sisters. I wish that I could smile and celebrate with others but it is still too painful. We will escape again today and celebrate our girl in our own way.

While I find today quite painful, I have only to look at some pictures from 3 years ago to see see the JOY.

Happy Birthday Georgia Lily! We miss you so much!

Georgia's Journey of Hope 2011

Well, despite the lower numbers this year we still managed to raise at least $8500 including our online donations. Thank you to everyone who donated, came to have fun, wore a t-shirt or simply told somebody about SMA. Thank you as well to everyone who has sent emails and offered words of encouragement.

We will definitely do it again next year but are hoping that we will be able get a few more families in through the door. The only way to ever end SMA will be to continue educating others and trying to raise funds. I am very open to any suggestions anybody has regarding the event and would love to hear your feedback.

I will try to post some pictures in the next few days.

Love to you all,

Kristen

The Truck (again)

After blowing off some steam last night I thought that perhaps the best way to remind people about how I feel is to simply copy and paste something that I wrote last year. I wrote 'The Truck' when I was feeling somewhat angry at the idea that people seemed to be forgetting about Georgia. The response that I got not just from friends and family but also from other grieving parents was overwhelming. Families of SMA ended up publishing the following in their newsletter and many families were sharing it with each other.

The Truck

When a parent receives a terminal diagnosis for their child, you may as well hit them with a truck...literally. All of the air seems to leave your body and you are left disoriented and hurting. The diagnosis is just that however, a word, a prediction of what will probably happen. A parent will most likely take some deep breaths shake off the disorientation and keep moving. Their child needs them and so they step up to the plate.

When your child takes their last breath however the truck hits you again. This time it slams you right in the chest leaving you struggling to breathe and wondering why you would even want to. Your body seems to ache all over and you have a hard time deciphering what is real. Everything seems surreal, as if you are truly walking in a nightmare. You just want to wake up and live happily ever after.

Peeling yourself off of the pavement is no easy task. Oh sure, you can read books about it, talk to experts and even take meds. It still isn't easy. It can take weeks, months even years. There is no timeline. It took me a long time to peel myself up off the pavement, to become a mother and wife again. As the weeks went on, I found myself seeing clearly. Breathing didn't hurt so badly and I knew all of the reasons that I wanted to keep it up.

I have accepted the loss of my daughter. I have learned to smile when I talk about her instead of crying my eyes out. I have found ways to keep her memory alive. I consider myself a better person since losing her but... I still get hit.

You see. Once you have lost a child, you can peel yourself off the pavement but you can't get off the road. The truck just keeps coming. As time goes by, you can start to expect it at certain times and prepare yourself. But there are still days, moments where the air is suddenly sucked right out of your body and your heart aches terribly.

I choose not to avoid the truck. I let it hit me. Sometimes I even welcome it, help it along. It reminds me that I am alive - that I am only a human. While I put on a smile and explore the world with my three surviving daughters, I am forever a mother that has lost a child.

Love to you all,

Kristen

Disappointment

Well, it's 2:30 am, and my head is pounding but of course I am not sleeping. Instead, I am doing what I do best in this kind of situtation, writing. Firstly, let me start by saying thank you to the many friends and family that volunteer so much of their time every year to make Georgia's Journey of Hope a reality. Thank you also to all of our friends that donated such amazing prizes. This year was no exception. So many of you stepped up to the plate again and I can't express what this means to us as a family.

The fundraiser allows us to celebrate our daughter's life but it also raises much needed awareness and funding for a cruel and devastating disease. For Calla and Maya, Georgia's Journey of Hope allows them to publicly acknowledge a sister that they continue to love with many friends that knew Georgia and other friends that have never met her. It also allows them to see that they continue to be loved and supported and that love really can transcend tragedy.

This afternoon started out with a pretty packed house but by 3:00 it had almost emptied. Keep in mind that we still hald 1.5 hours to go. Unlike the last two years there was no 'second wave'. We had hoped that by having Jets tickets more people would be drawn in. Indeed, there were many people who sent money or just popped in to purchase raffle tickets. The Jets tickets are definitely a hot commodity! Despite the approximate $8000 in prizes we did not draw in the crowds.

The truth is that many, many families chose to do something else this year. In some ways I understand. I have heard all of the reasons... I also know that this was probably the last Sunday of mid twenty temperatures until spring. When you put your heart and soul into something however, it's hard not to take personally and I have no qualms about telling you all that I do. I do take it personally.

Two and half years later, and Georgia's Journey of Hope is no longer a priority for many. People figure that we are happy and moved on. If you have looked at our beautiful family pictures on facebook I can understand how you would think that. We are happy. But, please, please please make no mistake. We have not 'moved on.' We live each and every day without one of our children.

I would love to scream at and shake some of you to make you understand how that feels but that would be futile and truthfully I hope that you will never truly understand. I wouldn't wish this kind of understanding on my worst enemy.

Love to you all,

Kristen