18 months

Well, today Aria is 18 months old and such a big girl. I have had lots of messages over the last week asking how her arm is doing and I am pleased to tell you that it is healing really well. Last night she wrestled it out of her sling (as the doctor warned me that she would) and woke up this morning happy to try using it. She is still not putting any pressure on it but was lifting it above her head to reach for something and was using it to help carry stuff around. Not bad for 13 days! LOL

At 18 months Aria is a very busy little girl, always trying to keep up with her big sisters. She has become quite the parrot. Calla and Maya love trying to get her to repeat all kinds of words. She has even started stringing some together. The most common phrase is, 'What's dat?' and 'I go outside'. The funniest phrase however is when she gets this mischevious look on her face and starts walking backwards singsonging the words, 'I can get you!' meaning 'you can't get me!' She thinks that it's so funny when we go chasing after her.

Before she broke her arm I was going to put her on bobskates because she is desperate to be out on the ice with her sisters but I think that I'll wait until after Christmas. We don't need any more breaks.

Aria just loves books at the moment continually pointing and asking, "What's dad?" In the last week she has decided that she wants to be a part of the big girl story time in Calla and Maya's room. I knew that it was bound to happen soon but she is just getting so big so fast!

Here she is sitting with Daddy and her sisters before bed. You can see that her arm is free!

Love to you all,

Kristen

Poor Aria!

As many of you that follow us on facebook already know, Aria had a bit of a rough day today. Just before 8:00 this morning she climbed up onto and then fell off of our piano stool. Unfortunately, she fell backwards onto the hardwood floor and must have twisted her arm. I was actually in the kitchen at the time but the second that I saw her I knew that she had broken something. It was actually a sickening sight.

Thanks to some very kind friends it took me less than half an hour to have Calla and Maya packed up and taken care of for the day. I then placed my baby into the van and started the well known route to Children's. I kept reminding myself that this was a very different scenario than two and a half years ago. While Aria was obviously in pain, she is healthy and I had no reason to believe that she wouldn't make a full and complete recovery. Her injury had in fact taken place because she is such an active kid.

To be quite honest, I just went into 'auto pilot' mode. It was actually almost too easy. I don't have to even think about which way to drive. I pulled up into the Emergency loop where Mike met me and I carried my baby through the doors. Mercifully, there were no doctors or nurses that I recognized. We were checked in immediately and seen right away. As Aria screamed and cried through her x-rays I gave thanks that they weren't x-raying her lungs. When I saw the break on the screen I wanted to cry but instead reminded myself that she would heal.

Later as the ortho guy wrapped her arm into a special sling I again gave thanks that I was about to walk back out the hospital doors with my daughter in my arms - no special equipment needed or a ride in an ambulance, just the three of us.

We were actually home before lunch time and Calla insisted on coming home to see Aria. I think that she was really worried. Maya was really worried too but was disappointed that Aria didn't have a cast she could sign! LOL At supper time we all talked about the many things to be grateful for today - the fact that Aria was okay, the amazing friends that dropped everything to help us, the doctors that took such good care of Aria, all of the messages of concern and support and of course, the little girl whose life and death continually reminds us to be grateful for everything!

Aria is now sleeping. She has a really bad cold on top of her broken arm so I'm not sure how long it's going to last but I'll take it. When I think about my life with Georgia or all of our friends that are fighting for their kids' lives every day I know that today was actually... a good day.

Love to you all,

Kristen

Halloween Fun

We've been pretty busy having fun around here the last week. Calla and Maya have been so excited about Halloween. They had lots of opportunities to wear their costumes from dance class, to Boo at the Zoo, and Halloween parties. My beautiful and sweet butterfly and peacock were replaced this year with a 'Batterina' and a 'Vampiress'. Maya actually wanted to be a bat but we couldn't find a costume to fit her. The Batterina outfit seems to suit her way better anyway!

Here she is riding the carousel at Boo at the Zoo. It was actually quite chilly that night as you can see by the mitts and coat.

Decorating her princess pumpkin.

Calla wanted to decorate her pumpkin as a cat. She doesn't remember doing the same thing two years ago. Oh well!

This picture was taken just before the trick or treating began. Maya put on her butterfly costume to stay warm. She doesn't like the look of Batterina over her coat! LOL

What a difference a year makes. Last year Aria was a tiny baby in the bucket seat and this year she is walking everywhere.

Aria actually loves dressing up. Here she is wearing Calla's old peacock costume. I posted this picture because she is actually smiling. It's a hard shot to get as she normally becomes quite serious when she sees the camera.

This is Aria's offcial costume. She actually loves it and has been insisting on wearing it around the house. This picture was taken at gymnastics. Isn't my little strawberry cute?!

Happy Halloween!

Love to you all,

Kristen

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