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

Out of the Mouths of Babes

Everything seems to be coming together even if it does end up being last minute! LOL Global just came by to do an interview which will be airing tonight on the 6:00 news. The camera man seemed really touched by the story and is actually hoping to come by with his kids. He seemed really excited about the Jets tickets actually! : )

This morning I loaded Maya and Aria up into the van to drive across the city to pick up the raffle tickets. When Maya asked what we were doing, I was waiting for an all out melt down. She gets carsick and I know that she would have rather been doing anything other than sitting in a van driving around town on a beautiful morning. I told her that we were going to pick up the prize tickets for Georgia's Journey of Hope. It was only two days away after all. Instead of melting down she replied,

"Oh Right! We have to do Georgia's Journey of Hope so that those men can make some magic potions and cure all of the babies like Georgia! Right Mommy!?"

No meltdown. No complaining. Just a nice happy ride singing along to the Mini Pops. Thanks for that Maya! Thanks for reminding me that one day those men and women are going to come up with a potion and all of those little warriors will be saved. That's why we keep going!! : )

Love to you all,

Kristen

Moving Right Along

Well, it's crunch time around here. The prizes are rolling in now. Thank you so much to all of our very generous friends and sponsors. This year we are very excited to have among our many awesome prizes a barbecue and three sets of JETS Tickets! If you don't think you can make it to this year's Georgia's Journey of Hope please consider donating online or send your friends with some money to purchase prize tickets! : ) Those Jets games are going to be hard to come by this year.

In all of the busyness I forgot to post some pictures from the first days of school. Calla and Maya actually started on different days because Maya had a staggered entrance. Calla is loving grade 2 and Maya is slowly warming up to kindergarten. Her anxiety was definitely present the first few days but I am very hopeful that she will settle right in this week. Fingers crossed!

Here are a few pictures of going to school and one of Aria showing off her silly side! : )

Can't believe my baby is off to kindergarten!! : (

I think that she may seriously consider herself some kind of pirate in those glasses! LOL

Love to you all,

Kristen

Tickets!

For those of you that don't follow on facebook I just wanted to let you know that tickets are now available for this year's Georgia's Journey of Hope. They remain at $5 a person and include admission, snacks, bouncy castle fun and face painting. My mom is also baking her famous cinnamon buns. You may order them for $15 a dozen or $9 for half a dozen. All proceeds to Families of Spinal Muscular Atrophy Canada. Please contact me directly.

Love to you all,

Kristen

Summertime Fun!

Labour day tends to mark the end of summer time around here. I realized that I haven't posted any pictures all summer and have been a very sporatic blogger. The reason for that is that we have been busy having fun. : )

Aria couldn't get enough of the sand, water and all of the beach balls. She loves roaming the beach pointing them all out.

We made it out to the beach several times. Calla and Maya are pretty good swimmers now. Calla passed levels 2-4 this year and Maya has now passed Salamander and Sunfish.

We also made it out to Cartown twice. This was actually the first time for the girls and a good thing that we got there. As you can tell, Calla is almost too big to fit into the cars!

This was Aria's first year at Tinkertown. She absolutely loved these little boats that go around in a circle. She actually wouldn't get out. The girl running them thought that she was cute and because she had a wrist band she just kept on riding.

Aria managed to go on a few other rides with the help of her big sisters. : )

I'll try to post some pictures of our camping trip before the first day of school on Thursday!

Love to you all,

Kristen

Volunteers Please!

We are gearing up for this year's Georgia's Journey of Hope to be held on Sunday October 2nd at Glenwood Community Centre. It takes an army of volunteers to make this thing happen and I am once again humbly asking for help. If you can donate even one hour of your time please contact me directly or come to a short meeting on Thursday September 1st -7:00.

We need help with face painting, bouncer supervision, front door, and sales tables. If you have any suggestions on activites for older kids please let me know. I will also have copies of prize request letters, flyers and tickets to be sold.

“I am of the opinion that my life belongs to the whole community and as long as I live, it is my privilege to do for it whatever I can. I want to be thoroughly used up when I die, for the harder I work the more I live.”

George Bernard END SMA! Love to you all, Kristen

In Good Company

As SMA Awareness month continues I ran my first 10km (6.2miles) this morning. I was excited but a little nervous as the furthest that I had ever run was 5 miles - and that was last Monday!! LOL Shortly before the warm up began a few of us stood together to have our pictures taken in our t-shirts. As I stood there I was surprised, and yet not... to see one of Georgie's PICU doctors. It's funny that even though it's been over 2 years our eyes locked and met in recognition instantly. I will always remember and be grateful to this doctor as she was always considerate and compassionate when it came to caring for Georgia. She was the one person that I knew I could turn to if I wanted honest answers. Our time in the hospital was quite awful but this one person made a huge difference in our lives. We had a few minutes to catch up before the race and I knew right then and there that I was exactly where I was meant to be.

I chose to try to keep pace with a woman that I only met a few days ago. She is actually training to run the Diva marathon in New York along with a few of my friends in October. In the end she became my angel. She kept the time and the pace with me - even sharing her music to help me find my rhythm. At the end when I thought that I was going to throw up she told me just to keep going until I saw my girls. The rest was easy! Nothing like hearing, "Go Mommy!" when the original reason that brought you to a place was losing a child.

The experience was uplifting and empowering. Thanks to all of my friends that joined me today especially my new running buddy Theresa. I still have no desire to be running more than 10km but I think that I'll definitely do it again. : )

This is me post race in my new shirt.

Here are the backs of the t-shirt. I am hoping that if enough people wear them the logo will soon become recognized.

Love to you all,

Kristen