Merry Christmas

"Oh I miss you now, my love
Merry Christmas, merry Christmas,
Merry Christmas, my love

Sense of joy fills the air
And I daydream and I stare
Up at the tree and I see
Your star up there

And this is how I see you
In the snow on Christmas morning
Love and happiness surround you
As you throw your arms up to the sky
I keep this moment by and by"
Sarah Mclachlan



Merry Christmas sweet Georgia!

The Missing Paragraph

Georgia would have been 3 years old this year. I imagine that I would have had her registered in Kindermusik and she would probably have danced on Tuesday mornings with her friend Ruby. She would have started preschool this past September. I would have had so much fun doing up her thick hair every day. I imagine that she would have loved singing Christmas Carols and listening to Calla sing in the choir. I can imagine her giggling with Maya as they played games in the morning and tried to decide what to wear every day. She would have started skating lessons this year. I am sure that Calla and Maya would have taken her by the hand. She would have been a big sister to Aria. I picture her trying to teach Aria the words to songs and playing dolls with her.

As Chrismas approaches I feel her absence more than ever. I wish I were buying her presents and going to her preschool concert. I wish that I could see her dance, and smile and play. I wish that I could hear her sing...

A Christmas Letter

At some point in my life I wrote a Christmas letter every year. It was a chance to update family and friends what we as a family, were doing. The last one I wrote was in 2008. In March, of 2009 I made my life quite public by writing in this blog. When the holidays came around that year I simply didn't have the energy to sum up what 2009 had done to us as a family. Last year I didn't feel like doing it either but this year I am feeling ready so here goes:

Dear Family and Friends,

We hope that this letter finds you in good health as you prepare for the holiday season. We have had another busy year around here. It's pretty hard not to be busy with three kids running around! Usually I'd start with Calla but since Maya is the middle child I thought that I'd write about her first this time.

Maya finished up preschool this year and in September she started kindergarten. We were all a little bit nervous about how she would adapt but I am thrilled to say that kindergarten and Miss Granda have been the best thing to happen to Maya in three years. She is loving school and thriving. I am so proud to see her becoming a social butterfly and gaining confidence. Maya is still dancing and loving it! She has requested to dance more often so next year I'll be putting her in at least two classes. She also tried soccer this year and liked it. She hasn't quite decided if she will play again this spring. Maya is also becoming quite the skater. So much so, that I even asked her if she'd like to play ringette. So far the answer remains 'No'. Her true love is DANCE.

Calla started grade 2 this year. She has become a fantastic reader and is loving the 'Geronimo/Thea Stilton series right now. She decided to dance ballet and jazz this year and continues to enjoy it. She has given up piano because she didn't want to try a new teacher. The teacher that we had won't be back in town until next fall. : ( Calla did join the school choir however and seems to be loving it. She learned at least a dozen Christmas songs this year and had the chance to sing them at a Seniors' Residence and the mall. Calla is also still skating but really only does it because one of her buddy's is in her class. LOL Skating really isn't her thing!

Aria has grown up so much in the last year. Her language skills are quite advanced as she is now speaking in short sentences. Today she said, "I wanna see where Maya go!" She is busy, busy, busy and... fearless! She broke her arm in November by climbing up onto our piano stool and standing up before falling down. She had wiggled out of her sling 13 days later and the break hardly seems to have slowed her down. Currently, Aria is obssessed with puppies, Elmo and just yesterday "Yo Gabba Gabba!" She loves to dance and sing and her favorite song is 'Baby Baby, Baby' by Justin Bieber. I am not kidding. She asks for it and sings along! LOL

As for Mike, it has been just over a year since he moved from IBM to Great West Life. He is quite happy and we attended the Children's Christmas Party just last weekend. Lots of fun! He continues to bake bread but not quite as much as his quest for health has led him to believe that too many grains aren't good for us. So, we all eat a little less bread. He is looking forward to going to the Grand Canyon at the beginning of February with his dad and siblings. They will be celebrating Bob's 60th birthday.

As for me, I stay busy. I ran my first 10k in August and it felt great! Now that all of my running has to be done inside I've let it slide for now. I also escape once a week to Pilates but am hoping to do it a little bit more in the new year. I have also started to sub a little bit again and am pleased to say that there is little to no anxiety on the part of Maya or myself. : ) Mike and I hosted the 3rd annual Georgia's Journey of Hope this year. We managed to raise approximately $12 000. It continues to be a labour of love.

We are looking forward to escaping some place warm in the next couple of months but have yet to book. The season is just keeping us so busy!

From our home to yours - Merry Christmas and Happy New Year!

Love Kristen, Mike, Calla, Maya, and Aria

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

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

SMA Awareness

I have been meaning to sit down and write for over two weeks now but just haven't managed to do it. August is SMA awareness month and I feel like I should have a lot to say but have been struggling. It's been 2 years and almost 4 months since we lost Georgia. Most of the time I feel at peace and know that I should be counting my blessings. I know that I am so lucky to have three beautiful and healthy girls here with me and I know that most people can tell that we as a family are doing well.

That doesn't change the fact however, that my beautiful blue -eyed daughter lies in a fluffy pink casket below the earth's surface over by the fountain. It doesn't change the fact that there is a continual void in our family and that Calla and Maya don't miss their sister. Every time I hear a little girl being called Georgia or Lily I turn my head and stare. How is it that they got to keep theirs?

The truth is that I am at peace with the loss of Georgia but I can't stand knowing that there are so many children out there struggling for every breath that they take. I hate knowing that there are so many parents living in a constant state of anxiety wondering what's next and will there be a tomorrow? Phrases like., "We know that Gwendolyn is deteriorating." "Lucy can no longer bring her hands up to her face." And, "Today we had to say good- bye..." make me want to help and yet at the same time feel so helpless. I know that these families know pain like no others. I know that they struggle with almost everything that they do. That is why raising awareness about SMA is so important.

Aria is almost 15 months old. She runs around now. She dances and screams at the top of her lungs. She has mastered climbing onto the coffee table and the back of the couch. She even likes to climb into the rocking chair and rock it standing up. She laughs at me when I say, "Danger!" I marvel at her physical ability and her zest for life. Georgia too had a zest for life, and so do so many of these kids. Right now we can only dare to dream that one day they too will be climbing a coffee table or dancing around.

I will be running my first 10k this weekend in honor of all of these SMA kiddos and families. Georgia's Journey of Hope will take place on Sunday October 2nd, at Glenwood Community Centre. I am now starting the call for volunteers.

Oh yes, I know that I am lucky but I am also dedicated to helping raise awareness about SMA. Will you?

Love to you all,

Kristen

Because I Can

After Georgia died my life seemed to be a nightmare and like any normal human being I felt the urge to run away. Running away of course, really wasn't an option. While I wanted to run from the pain, anger and hurt, I didn't want to run away from my family. So, I did the next best thing. I jumped onto a treadmill and somewhere along the way I started to feel better.

I have never been to see a therapist, nor have I ever taken antidepressents. I am one of the lucky few that found a different drug of choice - running. Running has never been easy for me. Those of you that have followed my story the last couple of years know how true this is. I have only ever really run a couple miles at a time. Often it's just enough time to clear my head and fill me with positive energy for the next couple of days. Being pregnant for a fourth time, breast feeding and getting up several times a night left me with little more energy.

In my cyber world, I have met people who have done all kinds of amazing things. Bill Strong is about to run his first marathon, just having completed his first half marathon. This on top of working full time and caring for a three year old with SMA. Then there's Stephen Taylor. He just ran 100 miles AGAIN! There's also Magda. Magda came up with the slogan - "We run for those who can't" The slogan that Stephen Taylor, Magda and one hundred others wore back in March as they ran the New Bedford half marathon. They are already planning to do it again next year.

Magda has also launched a challenge to to make this the best July ever by coming up with three big goals - a fitness, a nutrition and a spiritual goal. There is a group of us online that have all signed up and people regularly post about what they're up to. Now my fitness goal had nothing to do with running (it was core strength) but last week as I read an article I came up with another one. The article was posted by somebody else in the group and the message that stuck with me was that most of us will spend more energy thinking about the things that we'd like to be able to do instead of actually making them happen. Hmmmm...

So, I signed up to run a 10k in August. I know, I know it's not a marathon or even a half marathon but it's going to leave me empowered!! I have asked and received permission to wear the slogan, "We run for those who can't" and am going to have a few t'shirts made up with GJH's logo. I am hoping that a few others will want to join me or want a t shirt even if they are just running for fun. But, I have learned something else this month.

For the first time in over two years I am O.K. I am no longer afraid to stand on my own two feet. Even if I am the only person who ever wears one of those shirts and gets out there to run I will be just fine. I will always be in good company as I know that my reasons for running are good. I run not just in memory of Georgia but in memory of so many others. I also run for those little people still fighting.

Two years ago I wanted to run away from a nightmare but I now realize that you can never run away from a nightmare. The only way to ever feel better is to wake up. I am finally doing just that. I have set a goal and I will run simply because I can.

If you'd like to join me please let me know. You won't believe how good it feels to run for others. : )

Love to you all,

Kristen

This is Our Maya

5 years ago today, at just after 6 a.m. Mike and I welcomed our second daughter into the world. My labor had gone so smoothly that Mike was encouraged to 'glove up' and 'catch her'. I remember how her hair was a dark auburn color and when I later placed her in the basinette she kept turning right up onto her side to stare at me. : )

At 5 Maya can of course write her name and recognizes most of her letters. She loves to play dress up and will often change her clothes several times a day. She notices if I wear different shoes, earrings, necklace etc. Too bad for her, her mommy is kind of boring and could wear the same things every day! She loves to have her nails painted and her hair curled. If I allowed it she'd be wearing make up every day. She is truly my little girl.

This past spring Maya took up soccer for the first time. She loves to play goalie and will chase after the ball but isn't a very aggressive player. At a few of the games she has stopped to chat with some of her friends on opposite teams. "What are you doing here?" One time she spent most of her shift trying to get her friend's attention to point out that they had matching shin guards and socks! LOL This is our Maya.

Maya is a very sweet little girl with a big heart. She often senses people's emotions before most adults. If somebody falls down on the soccer field she often stands there waiting for them to get up - even while the play is still going on. Maya is an amazing big sister. She watches over Aria like a true Mother Hen. She is my second set of eyes and I don't know what I would do without her. Maya is also a great little sister to Calla, always waiting for her to come home and play.

Maya had lots of friends and I think that it's because she is so kind hearted and excited about life. Yes, she still suffers from anxiety, sometimes at the most awkward moments, but her spirit continues to be bright and shiny. This is our Maya!

Ready for the party!

She wanted the enchanted castle cake. Sorry that it's sideways!


The Prairie Fairy came to her party this year. That's why she is wearing her fairy wings and skirt.

Here we are just hanging out after our dinner at Boston Pizza. Maya's choice, of course!!

Love to you all,

Kristen

Almost 5

In two sleeps Maya will be turning 5. I decided to seize the opportunity and ask her a few questions about herself. Thanks Tammy for the great idea!! Here's what she had to say.

How old are you Maya? 4

Soon you'll be? 5

What's your favorite color? purple

Are you excited to start kindergarten? Yes!

What to do you think you'll do there? Mmmm..Make trees.

What's your favorite thing to wear? A Dress. (I definitely thought she'd say a bathing suit!)

Who are some of your friends? Addy, Mia, Kai, Maggie, Bella, Macy, Ruby, Hannah, Eva...

What your favorite meal? Kraft Dinner

What's your favorite snack? Lollipops

What's your favorte restaurant? Boston Pizza

What's your favorite drink? Apple Juice

What's your favorite book? Sadie the Ballerina and My Little Pony

What's your favorite toy? Barbies

What's your favorite game to play? Old Maid

What's your favorite board game? Chicky Boom

What do you want to do when you grow up? Be a Pet Veterinarian

What's your favorite animal? Bunny!!... Koala, monkey, puppy kitty

Are you afraid of anything? NO!

Not even the dark? Mmmmm...

What's your favorite sport? Soccer

What's your favorite place to visit? Grand Forks!!!

What the best part of Grand Forks? The WATER SLIDES!

Who's your favorite person? Calla.

What's your favorite t.v. show? Wild Kratts and The Peter Pan show

What's your favorite movie? Honey, I Shrunk the Kids.

What's your favorite thing to do in summer? play in the pool, sprinkler, slip n slide and go to the beach.

Is there anything that you want to learn how to do? Yes. Swim.

So...Maya apparently loves the water and wants to learn to swim but refuses to do lessons. Sigh. Hopefully, year 5 will be the year to learn!

Love to you all,

Kristen

My Dad

Top 10 Things That I Have Received From My Dad

10. The need for sunscreen because of my pale skin.

9. The ability to sleep in the middle of the day! : )

8. My temper - a long fuse but then we blow!

7. The ability to 'just walk away.'

6. My love of travelling.

5. My love of languages.

4. My ability to cook!! Oops! That one definitely belongs to MOM. : )

3. The ability to put family first - that one belongs to both of them.

2. The belief that it will be better in the morning - after a good night sleep.

1. My sense of humour!

Love ya Dad! Happy Father's Day!

Kristen

Dancing Queens

It's been almost a couple of weeks, but on the 24th Calla and Maya both danced in their year end recital. Maya was a monkey and Calla danced to the music of Kung Fu Panda. Both of their routines were super cute and it's so fun to watch how much they have learned. Calla is practically a veteran dancing at the concert hall but this was only Maya's second time. Mike and I both had tears in our eyes when we talked about Maya's performance later that night.

We both think that it takes a lot of courage to get up in front of hundreds of people and perform and we're never sure how Maya will react. This year however, Maya was a performer! We caught another glimpse of that toddler we had so long ago. She was confident. She was smiling. She was having a blast! There was no sign of our shy and anxious little girl.

After the show when we went back to congratulate the girls Maya immediately cast her eyes down and started to whine. She can't handle compliments. Calla received her congrats with a big smile and several thank yous. I wish that we had recorded the performances but it remains ingrained forever in my mind. Maya continues to give us glimpses of who she will become and we continue to hope that she will thrive alongside her sisters. She loves to dance and it seems to bring out the best in both of our girls. For that we are grateful. : )


There was also a very pleasant and humbling surprise. Two of the hip hop classes taught by Miss Carmelle raised money through their 'Just Believe' t-shirts in memory of Georgia. Our family recieved a cheque for FSMAC for $215.00 and we had no idea that it was happening! Wow!! If you'd like more information about the Just Believe World organization please click here. According to their website 'just believe is optimism. just believe is hope. just believe is ambition. just believe is change. just believe is love...' We are so thankful to all of the dancers and teachers involved.

Love to you all,

Kristen

One!

Aria Evangeline...a song bearing good news. Your name is so appropriate and yet it was the hardest to choose. We wanted you to understand how wanted you were, how loved you were and always would be. We wanted your name to represent who you are to us and so, it is Aria Evangeline. Did you know that I wanted your middle name to be Joy? I just knew that you would bring us so much of that. I also wanted your middle name to be Hope. The moment that I found out I was carrying you, that is what you meant to me. You are all of these things to us and we feel so blessed to have you in our lives.

We celebrated your first birthday with a big party yesterday and a smaller one today. So many people came to join us! In lieu of gifts we requested donations to Children's Hospital. I knew that you wouldn't mind. Of course, you still received a few presents. A lot of people just can't resist, not that I blame them.

Here you are digging something out from one of your birthday bags.


Here you are with your Winnie the Pooh birthday cake. I didn't know what to pick for you because you don't have any favorite toys. Next year you'll be able to tell me! You certainly don't look very impressed in this picture.

You weren't really sure about the cake. You really liked smooshing it between your fingers but didn't want to eat it. Oh well. You sure looked cute!!

Now you are sleeping up in your bed. I can't wait to see what another year brings.

Love to you all,

Kristen

Ready

Tomorrow we will be celebrating Aria's first birthday. It's actually on Sunday but we decided to start the partying one day early. I have been getting organized all week as we are expecting quite a few people. We were hoping to be barbecuing in the backyard but the forecast is calling for rain. Nobody around here seems surprised. It's kind of become the expectation for May long weekend. It was cloudy and raining last year when I went into labor too. Hard to believe it's been a year.

Aria is on the verge of walking. She can stand up and keep her balance almost anywhere and will take a step or two. She realizes that she gets around faster by crawling so that is still her preferred mode of transportation. When she is outside however she bear walks. I don't think that she likes the feeling of the grass and the concrete on her knees! Can't say that I blame her.

Aria has a few words including, mum, dada, hi, bye and bread. Yes, 'bread'. She is her father's daughter after all. : )

So I am ready to celebrate my daughter's first birthday. It was a day that I never thought I'd celebrate again. I had hoped Georgia would make it until her first birthday but that of course, didn't happen. I truly believe that Georgie had a hand in sending Aria here to us. She is so much like Georgia and yet so different. While I grieve all of the missed milestones with Georgia, I am so excited to mark this one with Aria.

We will release some balloons for Georgie but I have no doubt that she will be here celebrating with us. I am ready!!

Love to you all,

Kristen

Lucky Daughter

I have an amazing mom. She is generous beyond words, ready to drop whatever she is doing to go out and help another individual. She canvasses for diabetes and cancer. She volunteers through her church and other organizations. She loves to feed people. She has us over for dinner twice a week. I'm pretty sure that she doesn't enjoy cooking so much as she just enjoys her family. She also pops in a couple times a week just to say 'hi', drop something off or give me a 'break.' She bakes the most delicious cinnamon buns ever! She gives the best hugs ever! She is compassionate and warm always wanting to help.

My mom has more energy than most people I have ever met. Several years ago she thought that she would take up running and within a couple of months she ran a half marathon. Keep in mind that she was already at least 50 by then. : ) She still runs for fun but she also swims, does zumba and weights. She was taking yoga but gave that up this session because she was a little bit busy. LOL

When I was little my mom stayed home to raise us and took in some of the neighborhood kids to help make ends meet. Living on one income means having to make sacrifices. When I look back, I had no idea that we didn't have a lot of money. Our house was full of joy and love and sibling rivalry. : ) We had home cooked meals almost all of the time and always sat down at the table as a family.

When my brother and I were both in school full time my mom went back to school herself and earned a college degree. I can't imagine how exhausting that must have been. She was still cooking all of those meals and baking those cinnamon buns. I also don't think that I'd have the courage to go back to school at this stage in my life but I admire my mother for showing me that it can be done.

I'm pretty sure that the most important thing that my mom has taught me besides making my family a priority is to just be myself. I am so lucky to have such a good mother. These lyrics often remind me of my mom.

......
I've got a good mother,
and her voice is what keeps me here.

Feet on ground,
Heart in hand,
Facing forward,
Be yourself. Jan Arden

Happy Mother's Day Mom! You're the best!!

Love Kristen

Lucky Mom

I know that I am lucky despite the fact that I have lost a child. I try to count my blessings every day and continually remind myself what is important. I am far from perfect and sometimes get caught up in the little things. Sometimes I feel overwhelmed and frustrated. I sigh when Maya asks for another band aid, Calla still isn't ready or Aria is up yet again.

What I find amazing however, is that these little beings really do appreciate every thing I do. How do I know this? Well, they aren't always saying thank you, or putting their toys away. No. They don't remember to bring their dishes to the counter or throw their clothes in the hamper. No. They certainly don't eat the meals I prepare every day without complaining. No. Half the time they don't even remember to flush! : ) How do I know?

Well, it's the way their faces light up when they see me after only being apart for an hour. It's the way that they reach for my hand when they are unsure or bury their face in my shoulder. It's the way that they blow me kisses and say good night at least ten times. It's the way that they look to me for reassurance and guidance. It's the way they repeat what I say to others (not always in the most flattering way). They will ask me if I am happy, angry or sad. They will hug me and throw themselves at me sometimes when I least expect it. They love me just as much as I love them.

Calla came home on Friday instructing me not to look in her bag. She had a surprise for Mother's Day. Later on after she had removed the surprise I went through her stuff. I found a paper entitled 'Six Thing I love about You!' I asked her if it was part of her surprise. "Nope", she said. "You can read it now!" I tried to take a picture of it to post but the glare from the camera kept washing it out so I am retyping it here. [edit: I've scanned it so you can look at the message in Calla's printing below... -Mike]

Six Thing I Love about You!

I Love the way You cook. I Love wen you cook pasta. I Love how you bake me short bread cookies. I Love You. I love how you hug me and kiss me every day. I love that you are my mom because I Love you and you are the best mom in the world!
Love Calla

See... Three beautiful girls here on earth and one in Heaven watching over all of us. I am a lucky mom to be so loved.

Love to you all,

Kristen

Reflection

I know that it has been a while since I last posted. We are all well. We escaped own to the States for Georgia's angel date without too much trouble. The main highway had been opened on the way home and it was like driving through a lake. There was water as far as we could see on both sides of the road. Because of the floodway, Winnipeg has been spared from a disaster but the communities up north are now under siege.

April has become my quiet month, my Georgie month. I gave myself permission this year to just be. This meant doing a little bit less than usual but it also gave me time to reflect and find calm. Along the way I was interviewed for the Children's Hospital Radiothon airing today, as well as for a piece in the Children's Hospital Annual Report. I had several messages on Saturday from people telling me that they were greeted in the morning by Georgie's beautiful face. The fact that so many of you are quick to recognize her is an amazing feeling. It reminds me that I must be doing something right. My daughter is not forgotten.

May arrived with a dumping of snow but we were also able to attend a memorial at the hospital in memory of all of the young lives lost. We didn't make it last year but were so grateful that Georgie was included again this year. We had a chance to meet some other families and the girls came home with a bunch of flowers and balloons.

Now that we are well into May my quiet month is over. It is time to move forward. May is a big month in our family this year. Aria will be turning 1 on the 22nd. Mike and I are thrilled to be celebrating such a milestone with our little girl. A party is being planned. : )

Love to you all,

Kristen

Always Loved

Until we meet again...

Surrender

The morning of April 20th Georgia had developed a fever. She had just finished a course of antibiotics but new ones were ordered and started. Later that day her fever broke and she was like a new child...or more like the one that we once knew. She was full of smiles and had found her voice again. I have clear memories of those few hours with her. We sang songs and she rode in her swing. I just wanted to savor every moment with her and stop time. Here was my beautiful, happy baby full of energy and having fun. April 20th would be Georgia's last full day on earth. Those moments that we had together would be the last time that I would see Georgie smile, or even open her eyes.

Her breathing became more and more labored through the night. The next morning she seemed calmer but my instincts were telling me otherwise. I knew that when the time came that I wanted Georgia to be in my arms. I wanted her to understand that she was loved beyond measure. It wasn't long before the curtain between this world and the next was opened wide. I so desperately wanted to keep her here but I knew that my job now was to surrender.

Georgia's life and death were beautiful. The memories that we have of her we cherish. The pictures that we have of her we treasure. We watch for signs of her everywhere, from the dozens of birds that visit our yard to the sound of the wind chimes when there is no breeze. We continue to tell her story so that others will know her, understand her...remember her.

We carry her in our hearts every second, of every minute of every day. We continue to fight to end SMA. We talk about her daily. We miss her terribly.

Letting go of Georgia was the hardest thing that I have ever done. I am learning however that the only way to truly find peace is to trust in something greater than myself and to truly surrender.

Love to you all,

Kristen

Our Little Bunny

Check out Aria in her new bunny hat. Isn't she cute? The hat was purchased in conjuction with the Gwendolyn Strong Foundation so that cute little number is actually a donation to help end SMA. Click here if you'd like more information. Love to you all, Kristen

Quiet

The days have been flying by lately. Yesterday I felt like I couldn't keep up with the clock. It seemed to be moving way faster than I was and I felt like I was moving quickly! In my last post I wrote that we have been quietly keeping busy. I wrote the word quiet because that is how it feels when I am not reliving every moment that I had with Georgia. Of course, she has been on my mind. She is always on my mind but this year I find myself feeling much calmer as we approach her angel date.

Calla and Maya have been having a bit of a hard time, especially at night. Calla has been up in the night crying because she misses her sister and Maya has been up with nightmares. It's funny how even though Mike and I haven't said anything, as soon as Calla's birthday is over they start to 'feel' things. I am pretty sure that Maya has very little memory left of Georgia but the minute spring arrives she starts to change. Calla too has become quiet again. Not quite as obvious as last year but she is definitely more subdued.

We are hoping to escape next week but with all of the flooding we don't actually know that we'll make it to the States. We don't even know that we'll make it out of the city, so extensive is the flooding. We'll find some way of getting away however.

Every once in a while I feel guilty that I haven't been more upset. Sometimes I think that I should be feeling sadder or having a hard time but right now I am feeling calm. After losing a child I am very aware of how life can take one dramatic turn after another - how one day you think that life is perfect and then the next... Right now I am enjoying the calm. Today and hopefully tomorrow, I am enjoying the quiet of my life.

Love to you all,

Kristen

We have been quietly staying busy around here the last couple of weeks. The weather finally warmed up earlier this week only to greet us with below zero temperatures this morning and a windchill!! No fun. At least we've had the bikes out for a couple of weeks now. It's kind of funny that my kids have had to take off their toques to put on their helmets and then they ride around with their mitts on! : ) Mike's sister Peggy came out for a visit over the weekend and to celebrate Mike's birthday which we did on Monday. I'm pretty sure that his favorite gift is a book about breadmaking!! He also requested one on pizza dough but doesn't seem quite as excited about it. Bread making has become his passion and I'm not complaining!

Mike and the girls with his birthday pie.

This one I just put up for fun. Check out the teeth! : )

Love to you all,

Kristen

Shattered

If I had only one word to describe April 1st 2009, it would be 'shattered'. Just after lunch we would receive Georgia's diagnosis. SPINAL MUSCULAR ATROPHY. In that moment it was like somebody had taken a sledge hammer to my fragile glass life and smashed it into a million pieces. It would turn my world upside down and cause me to question everything I thought I had ever known. How was this possible? How could these doctors be telling me that my beautiful, perfect little girl was dying? How had I unknowingly passed on this horrendous terminal disease? How would we care for her? How would we care for Calla and Maya? Why was this happening? Did we do something to deserve this? How would we all survive?

The palliative care team would arrive shortly after the team meeting. Somehow this team of two would start to answer some of these questions providing us reassurance and a new sense of hope. I am still struggling with some...okay many of the answers even two years later. Every once in a while I will feel that sense of panic and see my life in a million pieces. Every once in a while I will doubt myself and the decisions that we made regarding caring for Georgia.

I continually remind myself that all of our decisions were made out of love. All of the decisions that Mike and I continue to make with Calla, Maya and Aria continue to be made out of love. I know that we didn't do anything to deserve this. I know that we will all survive. More than ever, I know what hope and forgiveness are. I now understand that even though our family's life was shattered that fateful April 1st and again on the 21st, it is love that not only puts the pieces back together but it holds them in place. That bond is stronger than ever.

Love to you all,

Kristen

Milestones

Well, yesterday marked ten months for Aria. When people ask about her I find myself constantly saying, "Aria is EVERYWHERE!" She now pulls herself up onto anything higher than her knees and cruises around the furniture. She also crawls up the stairs and would love to have the opportunity to go down them head first but I put my foot down!! : ) She absolutely loves the vacuum. In fact, I'd venture to say that the vacuum may be her best friend. She giggles and gets excited the minute that she sees it and laughs out loud if the girls play with her and the toy one.

Today is my dad's 65th birthday. We celebrated with balloons, steak and lobster and of course, a gift certificate to Golf Town! My dad seems a bit sheepish about celebrating. Two years ago there wasn't alot to be happy about. The day was overshadowed by Georgie's illness and hospitalization. We were still waiting on results but all knew that there was something seriously wrong. 65 is a huge milestone however and Georgie would love to know that we were all together today.

Happy Birthday Dad! Happy Birthday Grumpa! We love you and want to celebrate many, many more birthdays together.

Love to you all,

Kristen

A Long Week

Well, yesterday we finally managed to take the girls out for dinner and celebrate Calla's birthday as a family. We were supposed to go out last Monday but Calla picked up a really bad cold. Because she is asthmatic she gets hit pretty hard and often gets a fever. By Tuesday however, her fever had broken and I thought that she was on the mend. Wednesday she still seemed quite sluggish but we had everything ready to go back to school that evening. Thursday she came downstairs, lie down on the couch and her fever was up over 103.

By Thursday evening I fully admit that I was fighting anxiety. Maya also had a fever at this point and I was worried that Calla was developing pneumonia. Nightmarish memories of Georgia in hospital kept threatening to overwhelm me as I tried to stay calm and rational. Friday morning Maya was showing signs of recovery but Calla still didn't look good so Mike took her in. She didn't have pneumonia but the doctor thought something was brewing so he started her on some antibiotics - first time in her 7 years.

Yesterday morning she was a new kid again! : ) I am now breathing a sigh of relief regarding my own children but am saddened to learn that another kiddo earned her wings on Friday. You can learn about Ashley's story by clicking here or on the link entitled Our Two Angels on the right hand side.

Give your little ones and extra hug and kiss tonight. They really are so precious!

Love to you all,

Kristen

St. Patrick's Day

Happy St. Paddy's Day!!

Calla and Maya are both resting so I have only one Irish baby to show off today!

Love to you all,

Kristen

2 year ago

Two years ago today I placed Georgia in her bucket seat for the last time and walked into Emergency. I left the girls with my mom and would not return home for 18 days (at least to stay). I would not be fully present in Calla and Maya's lives for weeks. The memories are hard to think about and yet they are ever present.

I had hoped to celebrate Calla's birthday today as she has been sick since Sunday but she still wasn't well enough. Instead, I spent the day inside with all three girls. It felt good in many ways. We had no place to go and really nothing to do except to be together.

After supper I took Maya to Old Navy because she really wanted a St. Patrick's Day shirt. : ) It was raining and she was absolutely delighted. She squealed with delight when she saw a patch of grass or we hit a giant puddle. When we got there she insisted on putting up her umbrella even though it was only sprinkling. We didn't find a shirt in the end, but we had lots of fun looking around.

It's funny how something as simple as a trip to the store with Maya can make me smile. She was in such a good mood that it was contagious. At some point I realized how lucky I am that Maya can still be such a bundle of energy and enthusiasm. Two years ago I left her and she would change in a way that left her hard to recognize. Today however, she was the Maya I once knew - Self confident and fun, easy going and full of laughter, ready for adventure and mischievous.

As the memories start to come hard and fast as I know they will, I am going to hold onto my evening with Maya. Moving forward isn't always easy but with Maya around she's practically pulling me along. : )

Love to you all,

Kristen

PS Calla is feeling much better tonight and we are hoping that she will be back to normal tomorrow.

7 Years Old!

Calla,

At seven you have discovered the world of silly bands, sketchers, DSIs and BFFs. In the last year you have grown into a self confident girl who knows how to do and get what she wants. You have started to question the world, wondering if Santa and the Tooth Fairy could possibly be real. You could walk to school by yourself but allow me the pleasure of accompanying you. You are a very kind little girl who always looks for the best in people. You are a hard worker who always has time to help others.

At seven you can now read simple chapter books, ride a two wheel bike and do an awesome cartwheel. You can also swim from one side of the pool to the other and love to sit at the bottom. : ) You absolutely love the snow and could play outside for hours. You are an amazing big sister and daughter. We love you more than words could ever say and consider it a privilege to be your parents.

Happy 7th Birthday!

Love Mommy and Daddy (or should I just say mom and dad)