Georgia's Journey

Merry Christmas

2011-12-25T12:56:00.003-06:00

"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

2011-12-21T23:07:00.003-06:00

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

2011-12-21T20:37:00.006-06:00

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

2011-11-22T19:41:00.003-06:00

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!

2011-11-09T19:49:00.002-06:00

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

2011-10-31T18:18:00.009-05:00

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

2011-10-06T10:36:00.000-05:00

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

2011-10-04T20:15:00.002-05:00

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)

2011-10-03T20:35:00.002-05:00

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

2011-10-03T02:31:00.002-05:00

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

2011-09-30T13:31:00.003-05:00

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

2011-09-24T14:41:00.002-05:00

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!

2011-09-11T20:38:00.002-05:00

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!

2011-09-05T14:12:00.005-05:00

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!

2011-08-23T08:19:00.003-05:00

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

2011-08-21T19:43:00.003-05:00

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

2011-08-17T09:25:00.004-05:00

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

2011-07-20T20:18:00.002-05:00

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

2011-06-27T20:08:00.008-05:00

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

2011-06-25T21:20:00.002-05:00

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

2011-06-19T20:38:00.002-05:00

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

2011-06-05T11:01:00.003-05:00

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!

2011-05-22T20:22:00.005-05:00

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

2011-05-20T20:57:00.003-05:00

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

2011-05-08T20:02:00.005-05:00

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

2011-05-07T21:03:00.002-05:00

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

2011-05-05T14:08:00.002-05:00

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

2011-04-21T08:05:00.002-05:00

Until we meet again...

Surrender

2011-04-20T09:28:00.005-05:00

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

2011-04-17T21:04:00.002-05:00

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

2011-04-15T20:20:00.003-05:00

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

2011-04-13T16:39:00.002-05:00

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

2011-04-01T19:24:00.002-05:00

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

2011-03-23T20:43:00.004-05:00

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

2011-03-20T20:25:00.004-05:00

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

2011-03-17T12:40:00.002-05:00

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

2011-03-16T21:17:00.004-05:00

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!

2011-03-14T10:38:00.002-05:00

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)

Birthday Party

2011-03-13T13:50:00.009-05:00

Well, two years ago we approached Calla's 5th birthday with a sense of foreboding, a feeling that as soon as the party was done our lives would take a turn for the worse...and of course that is exactly what happened. Yesterday however, we celebrated Calla's 7th birthday at Petland and it was a fun time for all involved.

Calla decided, on her own, that she would like to collect ten dollars (as suggested last year) and keep 5 while donating 5 to the Winnipeg Humaine Society. She is very happy and proud to be donating $80 to our local pet shelter. She is also excited about buying herself something but she hasn't quite figured out what that is yet.

Originally, she had wanted a dog this year and while we weren't totally on board we know that one is definitely in our future so we had some long discussions on responsibility etc. Calla is now thinking that she would like to wait one more year before taking on such a HUGE responsibility!! I have no idea how I ended up with such a level headed and rational little girl but she always surprises me. My brother and I were having a good laugh the other day because we fully acknowledge that we would never have thought twice about the responsibility. We just wanted a dog!! Calla is way more mature that we ever were!! LOL

Enjoy the pictures!

Calla checking out the Siamese cat.

Maya and Anna petting the bunny.

Baby Gecko and the bird

The cake.

Make a wish!!

Love to you all,

Kristen

Riding the Coaster

2011-03-04T20:22:00.002-06:00

I haven't written much lately. It's not that I haven't wanted to...it just hasn't happened. The reasons for such have become complex and convoluted. I wanted to write a couple of weeks ago and tell everyone how we escaped down to Grand Forks for my birthday (Maya's idea of course). It's amazing how just getting away for a couple of days can relax and rejuvenate someone. I spent the day swimming with the girls and shopping. We went out for supper of course, and I had deep fried cheesecake for dessert. Imagine the calories!!! : ) It was a great day and I didn't cry once. Even the girls noticed that mommy was happy on her birthday this year.

Upon returning home however, Aria developed a chest cold that she is still getting over. There were a few days where Mike and I were both holding our breath praying that we wouldn't have to take her in. We fully understand that she is a healthy baby and does not have SMA but chest colds in babies can turn nasty quickly and we didn't want to have her in hospital.

Thankfully, her cold has gotten much better but she now has a minor ear infection which isn't making anything easier. I keep crossing my fingers that she will wake up better tomorrow. Last night she and I slept for a five hour stretch leaving us both a little more energetic.

I have kept up with my running. The motto continues to be 'Just One Mile' but many days I'll run 2-3 miles. The running seems to be keeping me from sinking but I find myself still struggling. March and April aren't easy months around here. Yesterday, as many of you know I went to register Maya for soccer at the community club. I was feeling really excited for her and was happy that there was no line up. Just as I was leaving I saw some of the parents arriving for the Parent and Twos class. I used to take Maya and Georgia there when Calla was in school. As I stood there I realized that I would have been there again with Georgie and Aria this time (Maya is now in school). It was sudden but not surprising how fast and hard 'the truck' hit. I left feeling completely deflated and sad. Thankfully, it was a busy day and I didn't have a lot of time to feel sorry for myself.

In fact, we spent part of the evening at Calla's school where our perfect little student showed us all of the things that she is working on. Calla remains excited about school and hates to miss a day. She loves her friends and her teacher. Sometimes I refer to her as 'my rock'. Right now, she is just so well adjusted and stable. She truly is an amazing little being. : )

And so the roller coaster continues...

Love to you all,

Kristen

9 Months

2011-02-23T19:49:00.002-06:00

Yesterday our little Aria turned nine months old and she is definitely starting to show us what she can do. She now pulls herself up onto just about everything...tables, chairs, window sills, legs etc. In fact, yesterday she somehow pulled herself up against the wall! Today she moved from the window sill to her ball track. If you hold her by the hands she'll start walking and sometimes she'll even try to stand on her own. We are in such big trouble!!!

We took Aria swimming for the first time this past weekend. Maya was absolutely delighted by the number of bathing suits that Aria has. Five - that's right the baby has 5 bathing suits and just went swimming for the first time. LOL In all fairness, 3 of them are hand-me-downs and the other two were gifts. They're all super cute so we have to use all of them! : ) Aria loved the pool. She loved splashing in the water, floating around and watching all of the kids.

Aria continues to babble whenever she's happy. She'll often try to say 'hi' when she sees someone and will wave 'bye bye' when she's in the right mood. She has also started to play strange with people that she doesn't see very often. The best part about this stage is how excited she gets when she sees people that she recognizes. Daddy gets a very enthusiastic welcome when he comes home from work every day.

Love to you all,

Kristen

Just One Mile

2011-02-12T10:22:00.003-06:00

So the last couple of weeks have seemed very long to me. Aria cut a couple more teeth which meant that she was up numerous times during the night for several nights in a row. Maya ended up with some kind of flu and we were housebound for a while as well. This almost felt like a blessing because who really wants to be bundling up 3 kids and trudging outside in the freezing cold anyway? But being housebound as many of you know gets old really fast.

The first couple of days that Maya was recovering she spent almost all of her waking moments crying or whining. It was not fun!! I was exhausted from not sleeping, not exercising because I was exhausted and everything started feeling like it was too much. I realized that I didn't really feel like doing anything at all. I was lethargic and grumpy. I didn't feel like getting together with people, going outside, doing the housework etc. I didn't even feel like reading or watching t.v. And then it struck me. That ugly word that nobody likes to think about or say out loud. I was feeling depressed!

I just wanted to curl up and go back to bed. I didn't have the energy for anything. The worst thing about being depressed is that you know that you should just get up and be grateful but you're not physically able to do it. Then you feel guilty on top of everything else which just compounds the problem.

I'm not really sure how I ended up in that state except to say that it crept up on me. I have never loved the winter especially in Winnipeg. The long dark nights and short cold days are draining even at the best of times. Throw in a lack of sleep, a sick kid, some postpartum hormones and it's not hard to start sinking. The one good thing is that since losing Georgia I am hyper aware of my feelings. Having lost a child I know that I will be more prone to depression for the rest of my life. Therefore I pay attention. 'Fake it til you make it' served me really well once but this time it wasn't working and I knew that I just had to force myself to do something...anything.

That's when I decided that I should just run one mile. I tend to run in fits and spurts. I haven't been running as much since the weather got cold for several reasons/excuses. Now, running one mile is actually easy. In fact, most runners would tell you that one mile is nothing. But that is the point. I couldn't convince myself to get up and run because normally I run a lot further than one mile and it can be time consuming. Feeling depressed means that the idea of 'time consuming' or 'hard work' makes it even harder to want to do it. I recognize that, so I told myself that I should just run one mile... just one mile. It would only take about ten minutes and then I could just go back to doing whatever it was that I was doing - nothing.

So I dragged my sorry butt downstairs and hopped on the treadmill. The only expectation I had was to run one mile. I ran my one mile and then gave myself permission to quit. I walked back upstairs and realized that I was in fact feeling better. So the next day while Aria and Maya were entertained for about 10 minutes I ran one mile again and then went back to them. Again, I was feeling pretty good. I did that again the next day and have realized that if I run just one mile I start to feel better. : )

Now one mile to a lot of people is nothing. Just one mile to me however, means more energy for my family and friends. It means clean laundry and homemade snacks. Just one mile means going out and laughing along the way. It means being able to give back to those that have given so much to us. Just one mile is my sanity. It allows me to continue being truly grateful for the amazing life that I have been given. Just one mile to me is EVERYTHING.

Love to you all,

Kristen

Snow Days!

2011-01-30T19:33:00.004-06:00

Well, it seems like everybody has had a pretty good taste of winter this year. The East coast has been pummeled and even the southern states have had their share of snow. We got dumped on again this past Friday morning. It takes a lot to shut down our city and so far there have been no snow days this year. There was one day where school buses weren't running because it was -45 but other than that Winnipegers are just expected to keep going.

We have been staying pretty busy around here. Last week Calla lost her second tooth. I actually haven't taken a picture of her yet because it happened right before bed and I keep forgetting. The tooth fairy came to visit yet again. I don't know if Calla is more excited by the money or the note that she left. : )

Maya, Aria and I were busy running to and from school and gymnastics as well as a couple of playdates. Friday we made it to dance but I shoveled the driveway on the way out and then again on the way back. Mike then shoveled it again when he got home. It was crazy! All the snow makes it fun for Mike and the girls to go snowshoeing. They all really like it and I am hoping to give it a try before the snow melts. The way that it just keeps coming I'm pretty sure that I have a couple more months...an early spring would be nice though.

Here are a couple of pictures. They are taken on our front street.

Love to you all,

Kristen

Blind

2011-01-23T23:14:00.002-06:00

Two years ago, as the end of January approached I was excited. Georgia was almost that magical age of four months where she'd be able to jump around in her jolly jumper and play in her exersaucer. Granted, I had already noticed that she was quite weak but I kept hoping that as February 6th arrived, the exact date that she'd be four months I could place her in that exersaucer and she would play happily.

The memory of Georgia in that exersaucer will haunt me forever. At some point, I did place her in it and of course, she flopped over like a rag doll. The alarm bells were ringing like sirens at that point and I started to panic. When I think about this time it's still hard for me not to feel angry. How could I have been so blind? How did I not see that a hideous disease was ravaging my child's body? Was I stupid?

Oh sure, I can still come up with a dozen excuses. I was busy with three kids under the age of five. Georgia had had a string of bad colds and wasn't feeling well. There was no history of anything in our family. Every child develops differently etc. The truth is however that I was totally and completely blind.

Now, I did love Georgia fiercely. I loved her from the moment that I knew I was carrying her. I felt like she was my gift, my third and most precious child. My lucky number 3. She would complete our family. She was born at home. She was perfect and beautiful. She slept like a champ! In fact, when she was only a couple weeks old I remember telling a stranger that I had never been so impatient to see my baby smile. I just wanted her to feel how much we all loved her. I wanted her to be happy.

Even though she was calm, I held Georgia more than the others. I just always wanted to have her close to me. All of my decisions regarding Georgia's care were out of love (Thank you Devon for reminding me of this). I took her to the hospital out of love and I brought her home because I loved her. I sang to her, rocked her, changed her and in the end held her because I loved her. I needed her to know even in her last moments here on earth that she was loved.

The more that I reflect, the more that I learn about myself and the more I accept. For whatever reason I wasn't meant to see SMA until I did. Even when I look back at pictures I don't see SMA. I only see Georgia. When I look at other children with the same condition I still don't see SMA. I don't see the masks and the equipment. I see only beauty and perfection.

I have come to a new understanding about myself and my life with Georgia. Of course I was blind. I was blinded by love! A love so strong and pure that SMA and even death cannot touch.

Love to you all,

Kristen

8 Months

2011-01-23T20:11:00.002-06:00

Yes, it's hard to believe but yesterday marked 8 months that we have had Aria here with us. As mentioned in my previous post, she is now babbling. I really can't express how the sound of her babbling has brought so much joy into our house. It is such a happy sound and we all love hearing it!

Aria still prefers eating her 'orange' food and despite my best efforts the greens aren't going down! She has recently started eating baby rice crackers and I think that we'll probably try a few more finger foods in the next month.

If I leave the room Aria will often come looking for me. When I run her bath at night she will often crawl into the bathroom with a big smile on her face. She loves her bathtime. : ) She can also go from lying down to sitting up on her own. Truthfully, I don't remember Calla and Maya doing that at all.

Aria also loves to be part of the action. If the girls are playing something then she wants to be a part of it, especially when daddy is involved. She LOVES the monster game the best! Yesterday, I took her upstairs to nurse her and she heard Mike say something in his monster voice to the girls. She immediately sat up wide eyed and tried to throw herself out of my lap. She would have crawled straight out the door had I not taken her. As it was she was kicking her feet and waving her arms in excitement. I can't believe how much my baby wants to be kid!!

We continue to enjoy every moment that we have with our little one and are so grateful for her presence.

Love to you all,

Kristen

Winter Blahs!

2011-01-20T13:34:00.002-06:00

Well, on Tuesday morning we woke up to temperatures in the -forties! This isn't really unusual for Winnipeg but it still sucks! Today we woke up to the same but yesterday I walked Calla to school in the morning because it was a balmy -36! LOL Calla is unaffected by the cold. In fact, she has a hard time understanding why she isn't allowed to play outside. Maya on the other hand, seems to be having a rough time. There has been lots of whining and crying on her part the last couple of weeks.

We had been considering a winter holiday and haven't ruled it out just yet but we aren't sure that this is the best year. Aria is now quite mobile and she isn't going to understand that she has to be still for a 5-6 hour flight. Also, she still isn't really sleeping very well and I don't want to make things worse. If the weather keeps up however, I'm not going to worry about it.

With the cold and Aria not sleeping I am still feeling quite tired. A wise person recently told me that it really is okay for me to feel tired and that I should just give myself some time. I am trying to do just that. I have actually upped my running but am giving myself permission to not get everything done every day. I mean really, as long as we're all fed, clothed and happy I think that we'll survive! : )

On a positive note Aria has started babbling. She is almost 8 months so it's rather late developmentally. I actually thought that she was just going to be one of those kids that didn't babble. I'm so glad that she is because I think that it's the cutest thing. I mean really, if you can't wake up to morning sunshine and the birds singing, a baby babbling is truly awesome!!

Love to you all,

Kristen

Walk On

2011-01-12T20:42:00.003-06:00

Every once in a while somebody will send me a message thanking me for sharing my grief so publicly. They'll often send me notes expressing how nice it is for someone to say what so many of us are feeling and thinking but don't usually share. This got me to thinking about why that is. Why is it so shameful to openly grieve in our society? Why are so many of us uncomfortable not just with the idea of death but with the idea of publicly demonstrating how much it hurts when we lose someone we love? Don't get me wrong, I am not any better with it.

I'm sure that many of you that have read this blog from day one feel like I have expressed my feelings openly but the truth is that my posts are often edited for audience purposes. Meaning, that I'll often write exactly how I am feeling, then realize that it's too raw and start tweaking it so that it doesn't sound as harsh. I haven't done this in a long time but in the beginning I did it a lot.

Most people won't see me cry when talking about Georgia. This isn't because it doesn't happen but because even I am uncomfortable crying in front of others...even though my child died. I have actually stood stoically by as some of my friends have cried. That could just be a personality thing but I think that our society plays a part in it too.

I am no better than anyone else when it comes to comforting someone that is hurting. I often struggle for words and am afraid that I'll say the wrong thing. I do know however, that often the best thing to do is just to be quiet and listen. Yes. Shutting up is often the best approach!! : )

For those of you that wonder I still struggle every day. Deep breaths, running, writing, praying, singing, playing etc. All of these things help but some days can be really long, especially at this time of year. Tonight on the treadmill as I was running and waiting for that high I played a song that is guaranteed to bring it. The lyrics to Walk On often move me even when I feel stuck. I never have enough breath to sing the words (that and I can't sing AT ALL) but I will try to say them aloud as I run. The power of song is amazing! So for all of you still hurting, find a song that moves you, that lifts you up, that makes you feel something, ANYTHING and walk on.

And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Walk on, walk on
What you got they can’t steal it
No they can’t even feel it
Walk on, walk on...
Stay safe tonight

............

And I know it aches
And your heart it breaks
And you can only take so much
Walk on, walk on

U2 - All That You Can't Leave Behind

Love to you all,

Kristen

Tired

2011-01-09T08:14:00.003-06:00

I haven't been feeling much like writing lately. Mostly because I am just tired. Not tired of writing or anything like that. Just plain physically exhausted, doggone tired. Aria spent the first four months of her life sleeping like a champ but the last few months she has started waking more and more often. There have been nights in the last few weeks where we have been up ten times or more. I don't really want to complain or look for sympathy here. I know how blessed I am to have a beautiful happy baby and I know that it is EASY to wake up and tend to a healthy one.

When Georgie was sick I lived on very little sleep. I knew that her time here was limited and so I spent every second I could with her. When I did sleep I was constantly aware of the hum of the oxygen, the beeps of the bipap and kangaroo pump etc. If she made the tiniest little peep I would jump up and make sure that she was okay. I was in a constant state of adrenaline. Sleep was an escape when it actually happened. The worst part however, was that upon waking I always realized that my life was actually the nightmare and there was no escaping it.

Mike and I will both admit that Aria is totally spoiled with love. The girls and us cannot get enough of her. She almost never cries because there is always somebody there ready to see to her needs including at night. Waking up with Aria however, has started to wear on me. I wake up exhausted and have very little energy. The cold weather doesn't help much either. I have had had thrush so many times that I have lost count - always when I am super tired. I hardly ever feel like running because if I do have the time I just want to lie down.

Back in September as we started spending less time outside Aria started fighting her naps. She seemed to always be awake. I could lay her down awake and she would play, fuss, cry in her bed for over an hour. Sometimes she would fall asleep for 5-20 minutes and then she would be up and ready to play. There was nothing I could do to get her back to sleep, including leaving her alone. Sometimes she would fall asleep in the car or while I was nursing her but that never lasted longer than 40 minutes. Eventually, this lead to more nighttime waking.

Now Aria is my fourth child and I have read many books on how to get babies to sleep. Calla didn't sleep at all for the the first 6 months of her life. Poor little thing was always crying. Remember Shannon? Eventually, I managed to start getting her to sleep and she remains a great sleeper to this day. Maya went through a phase of wakefulness but we survived that too. Aria is just different. They're all different!

The last few nights with Aria have been better and I am hoping that we are on the upswing. I can handle getting up once or twice a night but any more than that leaves me feeling less than adequate. We have just started getting back into a regular routine with Calla and Maya so hopefully I can help Aria to find one that works for everyone. She remains a happy and active baby. I can't believe how much she has grown and how much she can do. So again, I don't really want to complain or look for sympathy. I am just tired...

Love to you all,

Kristen

PS As I am writing this Aria is pulling on my netbook cord with all her might! : )

Reflection

2010-12-31T14:32:00.002-06:00

As 2010 draws to a close I have spent quite a bit of time reflecting over the last year. I remember my New Year's Resolution from last year. It was simply to try harder when it came to our food choices. In many ways, we as a family have succeeded. We actually haven't bought a loaf of bread in almost a year. We eat most of our meals at home and we buy local and organic as much as possible. The girls have gotten used to eating homemade soups and pretty much anything else I can make in a crock pot. Sure, we still have our mac n cheese but we buy the organic now and try to eat it sparingly. Muffins and granola bars are all homemade but we still have crackers and cereal. We are definitely eating better.

2010 has been a good year for our family. In February, we spent a couple weeks in Portugal where I found peace on the beach and the girls found hours of fun in the waves. In May, we welcomed Aria into the world and our lives have forever been changed - for the better. In October,we organized and put on our second annual Georgia's Journey of Hope. Final totals put us just over $15000 thanks to a lot of amazing support. For Thanksgiving, we made our first road trip with Aria to Calgary and had a blast visiting family and friends. December offered us the chance to do tribute to our amazing palliative care team here in Winnipeg just before celebrating Christmas.

Resolutions? Well, I have one - to try to live in the moment and trust that I am on the right path. I know it's really vague but I have some more concrete ideas on how to make it happen. The first and foremost is to laugh more. I am going to start recording Ellen and other funny shows. Modern Family is my favorite but it only comes on for a half hour once a week and that's not enough. I am also going to start taking pictures of Maya every time that she comes down in a bathing suit or sun dress telling me that she is ready to go outside - keep in mind that it's often -20 degrees here! Instead of getting frustrated about it I am just going to start documenting it. It will probably give many of you a laugh too! : )

The girls of course have no resolutions for the new year. They continue to love school and their after school activities which include, swimming, gymnastics, dance and piano. Calla is really enjoying her piano lessons and I admit that I love sitting down to play with her. Some of her books have a teacher's part and Calla loves me to play along. It has been a great bonding experience. Part of my living in the moment is to continue taking the time to play the piano with Calla.

Trusting that I am on the right path is more difficult. I do know however, since the birth and death of Georgia that I am at least moving in the right direction. Georgia's Journey of Hope will again take place, hopefully bigger and better than ever. I also have a few other ideas about raising awareness.

I have been struggling since last August with what to do with GJH. Several people have asked me to register it as a charity and I am still doing my own research and soul searching. While I am totally dedicated to ending SMA and honoring Georgia, I am also totally dedicated to raising my three daughters. I consider myself a dedicated mother, wife, daughter, sister, friend etc. The demands of starting my own charity may be just a little bit too much at the moment especially when there is a Canadian SMA charity that seems to be doing a wonderful job. If anyone has suggestions as to how I may structure a charity that would complement FSMAC instead of competing with it please contact me. I'd love to hear from you.

We are looking forward to a nice family dinner out tonight and then a movie and popcorn. Maybe Aria will surprise us and start the new year by sleeping through the night!! LOL

We wish you all a happy new year surrounded by the love of family and friends!

Love to you all,

Kristen

Palliative Care

2010-12-28T19:56:00.006-06:00

On Thursday evening here on CTV news they will be running a piece about pediatric palliative care. Most people don't like to hear the words pediatric palliative care and some get quite riled up when they hear the words. People seem to think that the minute that you accept care from the Palliative doctors you are giving up. When children are involved this makes people either super sad or super angry.

The truth of the matter for us however, is that the pediatric palliative care team here in Winnipeg stepped up when no one else would. They listened to us. When I say they listened to us I mean they listened to us. Once they had heard us they took immediate action. The hospital staff at that point seemed unsure as how to proceed. Their solution seemed to be that we could just stay in the hospital until Georgia died. Given that she was bipap dependent that meant that she stayed in the PICU. That would have meant that I would also have stayed in the PICU and our family would have remained apart. Of course, at this point we had no idea how long that would be.

Georgia was never happy in the hospital and she was no longer showing any signs of improvement. The doctors had stabilized her as much as they could. Dr. Mike and Simone showed up within a couple hours of Georgia's SMA diagnosis and had us home less than 48 hours later. Our city is a small one and we were told that children almost never leave from the PICU to go home. It's just not done. I believe that we may have been the first family to ever take a child home that was bipap dependent.

We did not bring Georgia home to die as many people think. We brought her home to live. The palliative care team worked alongside us to make sure that we had everything that we needed and most importantly our daughter was HAPPY! Bringing Georgia home allowed her to be with her sisters. She was able to sit in her swing or lay on the floor. She was constantly entertained. It allowed us to celebrate her half year birthday with family and friends. It allowed us to read bed time stories to all three girls and let Calla and Maya say goodnight to their baby sister everyday. We were able to sit down to meals together too. It allowed Mike and I to sleep in the same bed drawing strength from one another even as the machines beeped.

The two and half weeks that we had at home with Georgia (post diagnosis) are some of the best in our lives. We have so many incredible pictures and memories! It was also the hardest time in our lives. We were still reeling from the diagnosis and constantly worried about what may happen. Our friends from Palliative Care were always there. They would often show up within minutes of a phone call. They were often our only light on the darkest of days.

We know that not everybody would choose to bring home their terminally ill child. There are many contributing factors to making a decision like that but in the end it was the best decision for our family and it happened because of the incredible staff here in Winnipeg. We are honored to be a part of their story on Thursday night and hope that it may shine even a tiny ray of light into someone else's darkest of days.

Love to you all,

Kristen

PS The story will be part of the 'Small Wonders' segment on CTV Thursday at 6:00.

Edit: here is a link to the CTV video online (click Play on the palliative care story)

Christmas

2010-12-26T08:54:00.006-06:00

We have had a very busy yet relaxing couple of days. On Friday afternoon I took the girls the to play, "If You Give a Mouse a Cookie" before heading over to my parents for Christmas Eve. There are always lots of people there and it's great to catch up with everyone.

We all slept in until almost 8:00 yesterday. My parents were actually in the driveway waiting for us to call them!! We let the girls play with their Santa gifts while we made breakfast. Then onto opening...Calla and Maya had both asked for DSi's this year. We actually bought the Leapfrog Explorer for Maya and I am so glad. It does all of the reading for her. Aria was thrilled with the little guitar her friends sent but wasn't so sure about the puppy that Santa brought. It barks and moves forward when it's patted. She also loved the stacking ball that Grandpa sent.

When the gift exchange was finished my parents left and Mike proudly proclaimed,"Our job as parents is done for the day." : ) We both had a good laugh as we looked around the disaster that was once our living room. One good thing about having a baby on the move is that it can't stay like that for long. Everything has to get picked up.

Later in the afternoon we headed back to my parents to exchange gifts with Kevin and Melissa as well. The best part was eating our traditional dinner of steak and lobster! Mmmmm....

I am hoping to check out the deals at some point today. No rush though, there is plenty of cleaning to be done around here!! Yikes!!

The tone was different this year. One of us was missing. She always seems to be just beyond reach, as if she is hiding behind the corner. But, the burden was lifted. The day was full of joy and fun. We wish that she could have been here to add to the mess, and the chaos that is our Chrismtas day but she remains forever part of the joy and love.

Love to you all,

Kristen

7 months

2010-12-22T19:37:00.010-06:00

Today our Aria is seven months old. She, and we have all had a busy month. With concerts, and baking, shopping and more shopping the month seems to have flown by. Aria now has three teeth and just yesterday she got her ears pierced! She cried for all of 10 seconds and then stopped to look around at all of the stuff and people in the store. She is up on her hands and knees all of the time now although she has yet to perfect the act of crawling. She still prefers the inch worm, army crawl and rolling.

I have been introducing new foods to her on a regular basis but no surprise to me, she prefers the orange food. Carrots are her favorite followed by squash and then sweet potatoes. Beans received a few tentative swallows followed by gagging and spitting, while peas received the the all out puking award - won't try those again as I am actually allergic to them myself. She will however, chew on brocolli and seems to really like the taste so there is hope for the greens! : )

Calla had her last day of school today so I feel like our holidays are finally beginning. Everything seems to have come together and I am hoping to have some relaxing moments with the girls over the next couple of days. Enjoy the pictures!

The girls with their gingerbread house that they made with Grandma!

Reading stories with daddy.

Maya in the church pageant.

Calla all ready for her school concert.

Aria chewing on her drumstick!

Who says you need t.v.?! Yes, she is actually watching the washing machine and loving it!! : )

Ready to go see Santa. Check out those ears!

Love to you all,

Kristen

Grief

2010-12-18T21:16:00.003-06:00

My friend Emma sent me the following text today as it was printed on another SMA family's blog and she thought that I could relate. It is perfect and expresses my feelings accurately so I am reposting it here:

Meet my Friend Grief

"I would like you to meet my best friend. His name is Grief. We met each other unexpectedly and became friends instantly. He follows me wherever I go. When I go to sleep at night he tucks me in and whispers in my ear, "I'll see you in the morning." When I awake surely he has held true to his promise and greets me with a frown. He frowns because he is sad he had to meet me. He is the most loyal friend in the world. You can forget him for a while and not even think about him and he is willing to return at the drop of a dime. Grief is unselfish though. When other friends are around, he takes a back seat. He is quieted by the chattering of my other friends. It's nice to have a break from Him. Sometimes he's unrelenting and can be a drag. Other times I am grateful he's my friend because when he's around I know I haven't Forgotten.

A while back he was my very best friend. Slowly other friends are taking his place and he doesn't visit as often. I have even made friends with Joy again. I thought I had lost her friendship forever. Joy is a good friend too. Hopefully one day I will be able to be as good friends with Joy as I was with Grief. Maybe one day we can all be friends and share the same heart. To live in the Joy of today, to remember the grief of yesterday and to love all of my tomorrows. When all three of us can attain the same heart, I know our new best friend will be peace."
-by Michelle Krainich

Thanks Emma and Kendra!

Love to you all,

Kristen

Christmas Busyness

2010-12-16T21:09:00.003-06:00

I know that I haven't written in a while. It's not because I haven't wanted to, but I ended up with a really bad cold last week that lasted a good 11 days! I spent two Saturdays just trying to rest so that I could survive the week. I am finally feeling better but now poor Aria has a cold. She only seems bothered it by night however so I guess I should be happy about that.

With Christmas soon to arrive we have been very busy. Last week, we of course attended Calla's winter concert. Mike and I also attended a dinner to raise money and collect toys for the Cheer Board. I have also been trying to buy presents and wrap them as well as get out our Christmas cards and do some baking. I am trying really hard to throw myself into Christmas this year but I am finding it a little bit hard. Feeling sick for over a week hasn't helped my situation. I just ended up feeling overwhelmed and grumpy knowing that I couldn't get it all done without help.

Thank you to my mom! She has been here twice this week already and will be here again tomorrow so that I can volunteer for an hour at Calla's school. I have managed to finish all of my Christmas shopping and some baking. The cards are still sitting here but they'll get out eventually. : )

Tomorrow we are also being interviewed for CTV for a piece that they are doing about pediatric palliative care. No idea when it is being aired but will keep everyone updated.

So does it get easier? A little...we hung Georgia's decorations this year and I didn't feel bitter, just sad. While I am trying to have fun and continually remind myself about the true meaning of Christmas most of the time I feel 'flat'. It's hard for me to get excited about anything, even Christmas. I realized recently that I can go days without laughing. That's not good. I am going through the motions though and once again following my motto of 'Fake it till you make it'. My new year's resolution will probably be something like,'Laugh every day!' I may have to start recording Ellen. She always makes me laugh. : )

Love to you all,

Kristen

Numbers

2010-12-07T19:54:00.003-06:00

As many of you who have seen my facebook status know, today, December 7th Aria is 6 months and 15 days old. Why is that significant? Well, because that is exactly how long we got to keep our Georgie. Ironically, December 7th is also the anniversary of Wendy's (Mike's mom) death. I like to think of the two of them hanging out up there in Heaven. I never really had to the chance to get to know Wendy well but I know that she loved babies and would have been all over her grand daughters.

While we try not to focus on numbers and dwell on dates sometimes it's hard not to. Tomorrow, Aria will be older than Georgia ever was and that feels almost strange. She is already bigger that Georgia ever was (18.5 lbs and 27 inches) and is a super active kid. She never stops moving. : ) It seems odd that our baby girl will now start to look older than her sister. While Aria's pictures will continue to change, Georgia's will remain forever the same.

While I feel like I have made peace with Georgia's death I still have moments where I am angry. I can become easily overwhelmed and start to get really grumpy. Then I often feel guilty because Georgia was an amazing gift that taught so many of us so much in such a short period of time. I really believe that that was her mission in life...but being only human I still get mad. My treadmill is often my best friend when I am feeling like that. I run and run until the anger starts to dissipate and positive energy starts to fill me up again.

We had a good day today. Calla was performing in her school Christmas concert. I attended the afternoon performance with Aria and my parents. Mike and Maya are there right now for the evening show. Aria is currently sleeping in her bed. I am so excited to have another day with her. I can't wait to see what 6 months and 16 days will bring.

Love to you all,

Kristen

One Step at a Time

2010-12-01T21:33:00.004-06:00

There is big news in the SMA world today. Here is part of the bulletin from Families of Spinal Muscular Atrophy.

CSC, a leading stem cell therapeutics company, has developed a stem cell-derived motor neuron transplantation therapy, MotorGraftTM, for the treatment of SMA Type I. Pre-clinical studies completed in collaboration with the Hans Keirstead Research Group at the University of California, Irvine have shown functional benefit and safety in animal models. CSC's MotorGraftTM was granted orphan drug status for treatment of SMA by the FDA in late 2009.

Filing of this application is the first step in a multi-phase clinical development pathway aimed ultimately at approval of a novel therapy. The approval process for cutting-edge therapeutic approaches such as cell products may present unique regulatory challenges compared to conventional drugs, so companies and the FDA must work in close partnership to ensure safety and efficacy of these first in-human products. A cautious regulatory approach has been the norm in cell therapy applications submitted to date in other disease areas.

This trial will study the safety of MotorGraftTM and the surgical procedure required to deliver these cells directly into the spinal cords of patients with SMA Type I and will enroll a very limited number of patients. This IND filing is a major milestone in the search for a treatment for SMA patients.

One more big step!

Love to you all,

Kristen

New Video

2010-11-30T20:42:00.003-06:00

The Strongs have put together a very powerful new video about SMA. Please take a few minutes to watch it and count your blessings as we enter the holiday season. Just click here

We are truly honoured that the Strongs have included a picture of Mike and Georgia.

Love to you all,

Kristen

A New Day Has Come

2010-11-27T22:33:00.009-06:00

November 27th, 2009

It was already almost 4:00 when the phone rang that Friday afternoon. I was busy trying to get Calla ready for her dance class. It was a dark and cloudy day and that suited my mood just fine. I was resigned to the fact that I would have to wait until at least Monday before they told me about the baby I carried. I was trying to stay busy but the fear just kept creeping in.

When the phone rang I assumed that it would be someone else but I immediately recognized the number and my heart literally skipped a beat. The butterflies were instantly felt in my stomach and for a moment I was almost too afraid to answer. "Hello." "Hi, Is this Kristen?" "Yes" "Kristen, I'm calling with good news!"

The butterflies were gone but then the tears started. Poor Calla and Maya started to panic when they saw mommy crying. I kept telling them that I was crying because it was good news but they didn't quite understand. The phone call was relatively short. I was told that the baby did not have SMA several times because I kept saying, "Really?" I could hardly believe it. And then, just before I said good bye I asked if she knew the gender. She replied in the affirmative and asked me if I wanted to know. So, within a few minutes I was explaining to Calla and Maya that they would have another baby sister and she did not have the same disease as Georgia.

This was followed by a phone call to Mike (still at work) and then my parents. We were then off to dance. Ken Blue was out fiddling with all of the Christmas lights and decorations but I almost drove off the road when I saw the twinkling stars lit up. They hadn't been lit since Georgia's funeral. For those of you that don't know the Blues kept their star lights lit every night that Georgia was alive, well into spring. I know that I was not the only person that ended up staring at them, reminded of the compassion and hope that lives even in the face of tragedy.

November 27th was a new day. A year later it is now a happy anniversary for me. One that I look forward to right before throwing myself into holiday preparations. It's funny, I've never been a huge Celine Dion, but the lyrics in one of her songs always reminds me about learning that I would be a mother to one more child.

Let the rain come down and wash away my tears
Let it fill my soul and drown my fears
Let it shatter the walls for a new sun
A new day has...come

Where it was dark now there's light
Where there was pain now there's joy
Where there was weakness, I found my strength

A new day has come

Don't get me wrong. I still miss my Georgie every day. She would be almost 26 months old now. I'd love to be Christmas shopping for her. I'd love see her playing in all of the snow. I'd love to be taking her to Tiny Tots and singing songs with her. I'd love to see her in a Christmas dress, in a sled, in skates, in a snowsuit... but a new day has come and I am so grateful.

Love to you all,

Kristen

6 months

2010-11-22T12:40:00.003-06:00

Today our Aria is six months old. Last year on this date I was afraid to even imagine what it may be like to have a six month old baby again. But here she is!

We smile when she smiles, we laugh when she laughs and we rejoice when she cries ever so loudly.

Love to you all,

Kristen

Dark Days

2010-11-17T20:29:00.003-06:00

A year ago yesterday, I got up early (like 4 AM early) drove to the airport and took off for Toronto. I went to have a CVS test done on Aria to find out if she had SMA. I was home in time to have a late supper and put the girls to bed. It was a cool blustery day but the sun was shining. It's funny. I wasn't nervous about the test at all. I sat in the waiting room reading a book and then went for lunch afterwards before returning to the airport. I even picked up a new book while travelling because I had finished the first.

We would wait 11 days for the results and those 11 days were some of the darkest of my life. While, I had never really been nervous about the test, the results terrified me. How would we handle another child with SMA? What would that do to the girls? What would that do to us,.. our parents,.. our friendships? Would we try to move down to the States? Would we sell our house? What would that do to the girls?

The questions and uncertainties were without end, and for 11 days my world was dark. It didn't help that it was November. November just happens to be dark and gloomy with the first snow storms always threatening. My mother's instinct told me that the baby was fine and over the years I have learned to trust that instinct but, SMA is HUGE! It had come into my life once and shattered my world. The pieces hadn't even been put back together and I was afraid that it would be shattered again. I was afraid that if it did happen again I wouldn't be able to put any of the pieces back together. This time the grief would not only swallow me whole but leave me in a pit of despair that I would never again climb out from.

It didn't help that almost nobody knew. I didn't want to answer questions when I wasn't prepared to answer them. I didn't want to have to look Calla and Maya in the eyes and say, "I don't know." It was all still too fresh. I'm sure some people thought to themselves that we should have waited. Georgia hadn't been gone very long after all. I'm sure others thought that we should just have counted our blessings - two healthy kids. And others probably thought that we had no business getting pregnant when we knew that there was a possibility that we could bring another child with SMA into the world. How cruel and selfish! Thank you to all of you that may have thought any one of these things and kept them to yourself. I was not ready to hear them last November.

During those dark days I kept reminding myself why we chose to have another child. If we truly believed that Georgia was a gift and her life was full of meaning then why wouldn't we want to have another child, with or without SMA? Why wouldn't we want to try one more time so that Maya could practice being a big sister in her every day life? If we truly believed that the only way to live is to push out the fear and embrace love then we had to try at least one more time.

Don't get me wrong. As I said, I was terrified as I waited for those results. At times the darkness was almost unbearable but in the end we had our answer. Aria Evangeline would be born without SMA. They say that it's always darkest just before dawn and sure enough the dark days would come to an end. Just like that my world changed yet again.

Love to you all,

Kristen

Whispers

2010-11-11T20:16:00.002-06:00

All of my girls are different but I can't help but compare them. At the age Aria is now Georgie had already been admitted to hospital. She'd already had several colds and seemed to be getting weaker by the day. She had never been able to roll around, crawl or even hold her head up. She had never even tried to eat food. Aria, on the other hand does all of these things...well we're still working on the crawling but she gets around. She also tries to throw herself out of the bouncy chair and almost swung herself out of her carseat the other day (just in the kitchen). She can sit up but prefers to throw herself forward in an attempt to crawl - even if she is surrounded by toys and pillows. It's actually quite funny! I don't know that she'll ever sit still! : )

Sometimes I think that Georgie is there whispering in her ear. "Go for it!" I could swear that she encourages Aria to do all of the things that she never got to experience. Remember how Georgie loved her swing and especially her mobile...

Look at this picture!

It's actually hard to tell from the angle of the shot but that's Aria reaching out to touch her mobile. And yes, she grabs it quite regularly. : )

I may not be able to hear the whispers but Aria is always there showing me what she can do. She continually reminds me that each one of these new little skills aren't little at all. Aria is as headstrong and she is physically strong and while the toddler years frighten me a bit, I plan on savouring every moment - reminding myself that there may just be a driving force behind my little "mover and shaker".

Love to you all,

Kristen

Holiday Shopping

2010-11-05T19:57:00.003-05:00

I know that it's still early and I have no problem admitting that I am a real procrastinator but the holidays will be here before we know it and some of you are already shopping. Being the procrastinator that I am, I haven't started but always tell myself that I'm going to. For any of you that do some or all of your shopping online please consider using ShopToEndSMA.com They have hundreds of businesses listed, including many Canadian ones, that will donate a percentage of your purchase to The Gwendolyn Strong Foundation.

It's super easy. Just go to ShopToEndSma.com and find the merchant that you were considering ordering from. From that point on you just shop like normal and feel good that you are helping to fund critical research for SMA.

Happy Shopping! I'll let you know if I actually get started before the end of November!! : )

Love to you all,

Kristen

Halloween

2010-11-02T13:20:00.007-05:00

I know that I am a little bit late but I still wanted to share some of our Halloween fun! On Friday night we headed out to Boo at the Zoo with some friends.

Here are my little peacock and butterfly just getting out of the van.

Calla and Maya's friends had the exact same costumes which made it extra fun and oh so cute!

We had to make an impromptu stop on the way home because Aria was screaming to be fed. Mike took the girls into Old Navy while I sat in the van with Aria. Calla and Maya thought that it would be fun to pose with the mannequins. Many of the shoppers thought that it was fun too! : )

Here is our little caterpillar looking non-too impressed with her outfit. She only wore it for a few minutes as it seemed to 'cramp her style.'

Just before Calla and Maya went trick or treating I managed to snap a few shots of all three girls.

All in all it was a fun weekend. We were all busy but the absence is always felt. I am glad that October is over and that it ended on such a positive note. Oh yeah! My mom's hair raiser is now over $5000 thanks to some generous friends. : )

Love to you all,

Kristen

Betty's Hair Raiser

2010-10-31T15:01:00.005-05:00

Well, my mom made it back from her holidays and today was the big day. The three choices were to shave her head bald, to shave it into a mohawk or to keep her hair. Mohawk won by a a land slide! : )

Here are my mom and our amazing friend and hair dresser Carmen about to get started.

The mohawk actually looked really good on my mom and probably woudn't have attracted a lot of attention so...

Let's throw a little purple in there!

Let's also remind everyone why her hair is purple!

A little cuddle with the grandbabies afterwards!

A HUGE thank you to my mom for having the courage to do this. She raised over $4700 for SMA research. Isn't that awesome? Who knew that her hair could be worth that much!! Another thank you to all of the people that donated and of course to Carmen for coming out and doing whatever it was that needed to be done! I don't know many people that could pull off a purple mohawk but mom you look AWESOME!! Georgie would be so honoured!

Love to you all,

Kristen

A Nutty Story!

2010-10-24T20:16:00.003-05:00

Wow, has it really been a week since I last posted? Calla and Aria have had bad colds since Friday so it has meant very little sleep around here. They both seem to be on the mend now so hopefully we'll all be in the clear for a while. Just as I'm writing this however, Mike is sniffling and complaining that he isn't feeling very well. Argh!! I hate cold and flu season.

Since there isn't much else to report I thought that I would share a funny story with you. When I was in kindergarten I went for allergy testing. At the time they tested me for all kinds of things and one of them was peanuts. My mom was told that I was very allergic to them and that I should stay away from all nuts. As the years went on my allergy to peanuts seemed to get worse. Even the smell started to bother me and I started to carry around an epipen. I accidentally ate a peanut butter cookie once and the reaction was instantaneous.

Every time that I went out to eat I always had to ask if there was any nuts and sesame seeds for that matter as I now have a severe allergy to those to0. There's no Thai food around here! : (

Fast forward more than 25 years - my mom starts talking about how healthy almonds are. I reply that I know but I'm allergic to nuts. Then my mom says, "Well actually I'm not sure that you are allergic to nuts. They only tested you for peanuts and told us to just stay away from the other nuts. Aren't peanuts a legume anyway?" (Please take a minute now to sit in stunned silence as I did)

WHAT!!!! I was never tested for tree nuts? I have spent pretty much my entire life avoiding all kinds of foods because of nuts. Now, I know that it wasn't my mom's fault. I don't really think that they had differentiated between peanuts and tree nuts at the time so I understand but - WHAT??!!!!

So, anyway I went out and bought some almonds... and I ate the almonds. In fact, I have eaten hundreds of almonds in the last month! : ) I really like almonds! Today, I decided to try walnuts. Guess what? I can eat those too! My plan is to slowly try all of the tree nuts. Anyone who has severe allergies can understand how life changing this is for me.

So that's my story.

Love to you all,

Kristen

Aria

2010-10-17T22:13:00.003-05:00

I admittedly have written very little about Aria. There are many reasons/excuses for this - none of which I am proud. Some of my crazy head talk includes thinking that Georgia may think that I have forgotten her or found some kind of replacement. I have also considered the idea that some people that are grieving the loss of a child or have a child with SMA may not want to hear all about Aria. I also know that despite the fact that everyone always says that you shouldn't compare your kids, I do - ALL THE TIME. I just can't help it! I don't love any one more than the other. They're all different and I think about how they are the same and how they are different every day. Aria, having three older sisters gets the most of this.

Aria is now almost five months old. She is actually the spitting image of her sister Georgia except that she doesn't have the same thick head of hair. A doctor from the hospital recently met her and looked like he had seen a ghost. He even made reference to the fact that she has the same eyes as her angel sister. The difference however, is that while Georgia's eyes were calm and full of wisdom, Aria's are mischievous and determined.

Aria is quick to smile but slow to laugh. She seems to save her laughter for her sisters. She is always entertained when Calla and Maya are around. She is a very content baby for the most part but quite serious. She is always busy but is also very calm. She only ever cries if she needs something and is easily soothed.

Aria is strong. She rolls from her back to her stomach and brings her knees up. The other day she was reaching out for the blanket trying to pull herself forward. She has also started to roll in one direction. I could just see all of the neurons firing in her brain as she figured out that she could actually move towards something. Man, am I in trouble! : ) The first time that I put her in her exersaucer, she stood up straight to look around...and I cried. She also likes to bounce around in the jolly jumper and every once in a while I have to catch my breath.

There is my baby girl with big blue eyes reminding me that life is good. There is my baby girl reminding me to slow down and take a breath. There is my baby girl forcing me to continually remind myself about what is important in life.

The word aria of course means a melody and our Aria's melody is just so sweet. I truly believe that Georgia is nothing but thrilled for us. Because Georgia knows my heart she understands that the joy I find in everyday with her sisters will never mean that I have stopped missing or loving her. And, while I find October an especially hard month I am just so grateful to the continual surprises that my girls, but most of all Aria keeps showing me.

Love to you all,

Kristen

We're Back

2010-10-15T20:05:00.009-05:00

Well, I know that I have been letting the blog slide a little. The fundraiser kept me quite busy and then we decided to take off. I find Georgia's birthday really hard and wanted to get away so we went out to the mountains for a few days. It worked out well that it was Thanksgiving long weekend. We've been back just over 48 hours and things are finally starting to settle down. Mike is even back to work on Monday so we really will be back to 'normal'. As promised here are a few pictures of the girls.

Calla's first day of school.

Maya's first day of school.

Aria, showing off her GSF beanie. Check our those eyes!

Reading on the counch.

Oh yeah! Maybe the biggest news in Calla's young life...She finally lost her first tooth!! : )

Love to you all,

Kristen

2010-10-06T07:06:00.001-05:00

Happy Birthday Sweet Angel Baby! You remain the light in our lives and our inspiration to carry on!

Almost 2

2010-10-05T20:31:00.003-05:00

Dearest Georgie,

It has been 1 year, 5 months and 14 days since I held you in my arms and watched you take your last breath. When I close my eyes, I can still smell the sweet smell of your skin and feel your little hand curled around my fingers. While I am no longer pained by every breath, once in a while it still hurts to breathe. While I am no longer surprised by the beating of my own heart, sometimes when I think of you it feels like it is going to burst right out of my chest.

We threw a birthday party for you again. We had over 30 volunteers and hundreds of people showed up. Everybody had fun. It felt good to know that we are surrounded by such amazing people. It feels great to continue raising money and awareness for SMA but... it also leaves me exhausted and aching. I...we miss you every moment of every day.

The girls want to celebrate your birthday tomorrow. We will actually be on the road. I purposely planned it this way. I am not ready to share your birthday with others. I don't want to put on a happy face and pretend that it's okay. It will never be okay! Tomorrow, we will celebrate your second birthday in our own way... just us. I will make sure that your sisters are pleased however and one day I hope that I will be able smile on your birthday and not have to pretend.

Love Mommy

Georgia's Journey of Hope 2010

2010-10-04T12:08:00.006-05:00

Well, some of you have been waiting patiently so see how Georgia's Journey of Hope 2010 went down. Well, let's just say that it was a big success. For those of you that didn't make it, let me help you to visualize it.

As you walked into the community hall you walked down a hall to the left where you were greeted by a collage of faces. The board read, "Look into the eyes of SMA" and featured the faces of several SMA angels and warriors. Thank you to all of the families involved and to my amazing friend Tanya who continually goes above and beyond, always behind the scenes and always with a creativity and determination that leaves me in awe. Many people stopped to look into the eyes of our inspirational people. Some were moved to tears, others just shook their heads in shock. How does something so devastating continue to not be heard of by the majority of the public?

As you handed your tickets in a the door the hall opened up and there stood our 24 prize packages worth thousands. We had an amazing response from our sponsors this year. Two children's bikes, a Kobo reader, sports tickets, the list went on and on. Our amazing volunteers stood there with 'tickets 4 sale' written on their cheeks collecting money and selling tickets. On the right hand side we had over 300 hand made beautiful cards for sale as well as last year's t'shirts, homemade knit beret style hats, beautifully decorated cupcakes, cinnamon buns and stunningly intricate chocolates. Thank you to all of the volunteers who made that possible.

As you continued to walk straight ahead you walked into the gym. On the right hand side stood the bounce house and the giant slide bouncer. These two items kept the kids busy for hours!! Thank you to Jaime Barr of Funquest who graciously donated them once again this year. They have become the main attraction and we don't know what we'd do without them.

To the right the tables were all set up where people could sit down to enjoy all of the free snacks. Thank you to Doug Park of Old Dutch for providing all of the chips and to Costco for the gift card. We had juice boxes, cheesestrings, cookies and popscicles. There was also cotton candy provided by Funquest that we charged $2 for. The fountain drinks were all provided by Glenwood Community Centre. Thank you Roxanne, Michelle and Adrienne for serving all of the food and drinks and making the cotton candy!

As you continued walking to the right you were greeted by Kristen, our 'balloon maker extraordinaire' . Kristen, we don't know what we'd do with you! As you walked through the doorway just past Kristen you ended up in the face painting area where there were no less than 4 face painters at any given moment. I am pretty sure that we have some of the best face painters around! : ) Thank you to everyone who took a turn and to Euro-Can for donating all of the paints.

Well that almost sums it up. We also had a coloring and play dough table and Lulubelle the clown came for a while too! Please ask yourself how many people it takes to make an event like this work. Did, I forget to mention the hundreds of people that came through the doors? Thank you, thank you, thank you! We are so blessed to have all of you in our lives. Your continued support leaves us humbled, sometimes surprised, and always, always, always so grateful!

I promise to post the pictures soon... In the meantime, we are very excited to report that thus far we have raised $13 452! For anybody still considering donating you can either donate online directly to FSMAC click here Don't forget about Betty's Hair Raiser that will be going on for a few more weeks!

On another note, today is Monday October 4th 2010 and Gwendolyn Strong is 3 years old! Happy birthday to a little princess that continues to inspire people all over the world!

End SMA!

Love to you all,

Kristen

Our Logo

2010-10-02T20:00:00.003-05:00

Thanks to the amazingly kind and creative genius of Rick Sellar we now have a logo. Check it out! We love it and hope that it will soon become something that people all over will recognize. Thank you Rick! We couldn't be more pleased!

Love to you all,

Kristen

Once Upon a Time

2010-10-01T20:56:00.002-05:00

Once upon a time a couple rushed excitedly to the hospital anticipating the birth of their first born child. They were thrilled beyond belief to welcome a baby girl into the world and couldn't believe how it was possible to love a human being as much as they loved this little one. The baby girl delighted them with everything from the way she curled her fingers around daddy's pinky, to the way she made little noises as she stretched and squirmed. They took their baby home and were prepared to live happily ever after.

Somewhere between two and three months the mother noticed that her baby didn't seem as strong as some of the other babies her age. She didn't put any weight on her feet and still had a really hard time holding her head up. Worried that there might be something wrong, she decided to make an appointment with the doctor.

The doctor agreed that the little girl seemed weak and started a whole battery of tests. A few days later when they met again the doctor explained to the couple that their daughter had Spinal Muscular Atrophy. The couple was devastated as the looked into the eyes of their baby. They had lots of questions and felt like their fairy tale family was falling apart.

"Not to worry," the doctor said. "Spinal Muscular Atrophy affects 1 in 6000 babies but it's easily treatable nowadays. A few years ago it was considered a death sentence but thanks to the determination of so many dedicated families, doctors and scientists it's an easy fix. Your daughter will grow up to run and play just like all of the other kids."

The couple looked at each other in relief and held their baby tightly. She was going to be just fine and they all lived happily ever after...

A fairy tale today... A reality tomorrow...

Join The Journey

End SMA

Love to you all,

Kristen

Crunch Time!

2010-09-28T20:07:00.002-05:00

One week tomorrow and our Georgie would have been two years old...hard to believe. I have been pretty preoccupied lately getting everything ready for this year's Georgia's Journey of Hope. I just realized that I haven't even posted pictures of the girls' first days of school yet. We have been collecting prizes, selling tickets, dropping off letters and flyers and even doing an interview. : ) If you don't check in with facebook, there should be a piece about our event this Friday on Global here in Winnipeg. It will also be available online for anyone out of town that is interested. We want to give a huge shout out to Craig Larkins who took the time to actually do a story about Georgia, SMA and raising awareness.

The prizes have been steadily rolling in and everything seems to be falling into place. Mike and I went back to the venue today just to check everything out. It is much bigger than last year and there are actually 3 different rooms which should cut down on the noise. Anybody who would like to come but hasn't purchased tickets is welcome to just pay at the door (same price). I have been continually checking things off of my list but it just seems to keep getting longer! I am hoping that we will have it all done by Friday night as Saturday we are going to have family pictures done in the park with our friend Tanya Lynn and then I am hoping to relax - just a little.

The girls have settled into their fall routines nicely. I am thrilled to say that Maya is loving school and excited about going. Calla is also enjoying school but is often exhausted by the end of the day - Grade 1 is tough that way. Both of the girls are dancing and swimming again. I'm pretty sure that Calla actually goes to socialize with her friends and Maya goes just to show off her dance attire! : )

Aria is growing like crazy! She is now over 15 pounds. With her big blue eyes, sweet smile and round chubby face, she has us all ready to do her bidding. She has even decided that the only place that she would like to sleep during the day is Daddy's arms. Mike has been obliging so far but I have been trying to lay her down sometimes because Mike will be back to work in a couple of weeks and my arms aren't as strong as his!

While I admit that I find this time of year really hard, I am also continually moved by the number of compassionate people we find ourselves surrounded by. I'd love to start naming them off but it would take me all night and I still have lots of stuff to do. : ) To all of you that continue to support us, help us, make us laugh, watch our kids, drive our kids, hang out with us, send us messages, share our story and just plain love us - thank you!

Love to you all,

Kristen

Coulda, Shoulda, Woulda

2010-09-21T14:02:00.003-05:00

Today is the first day of fall, and as we inch closer to Georgia's birthday my emotions become more and more volatile. It seems that the tears are always there, just below the surface ready to flow with less than a moment's notice. Plans for the fundraiser are well underway and I am expecting it to be another success... yet I still have my moments.

Yesterday, as I rushed around trying to drop off flyers to be displayed I started to feel frustrated. I wonder who will even bother to read them? Who will come because they see a poster? Today, as I was driving to the grocery store I started to really feel sorry for myself. I started thinking about how I should be planning a second birthday party, how I could have been making an appointment to get Georgia's portraits done, how I would have been helping her to pick out the perfect birthday cake.

When I'm in the car alone I can throw myself a pretty big pity party. : ) Then it hit me. The 'coulda, shoulda, wouldas' will serve me no purpose. Dwelling on what I would have been doing if Georgie was still alive isn't going to help me carry on. It's certainly not going to help me do anything in her memory.

Learning to live in the moment is not easy. In fact, I think that's it's one of the harder lessons that I will ever learn. I am really trying though. It's scary to let go of the 'coulda, shoulda, wouldas' because for some reason it feels like if I do I a may start to forget Georgia. If I don't stop to dwell on what kind of cake she may have wanted or who her friends would have been then she'll think that I have forgotten about her. Absolutely untrue of course. It's just hard to stop.

As the pity party came to an end I started to refocus on what I am doing and what I will do. I am putting on a fundraiser and doing my best to promote it, all in the name of my daughter. I will celebrate her birthday every year and mark every milestone if only silently to myself. I will continue to share her story and those of other little SMA warriors and angels. I will allow myself a pity party once in a while but I have to let go of the 'coulda,'shoulda, wouldas'. Then and only then will I be able to truly live up to my potential and understand what I am meant to do next.

Love to you all,

Kristen

This is SMA

2010-09-16T21:29:00.005-05:00

Georgie was born bright eyed and strong. She had us all wrapped around her little finger in the first few moments of her life. We loved our Georgie, or 'Joja Wiwee' as Maya used to call her. We took her absolutely everywhere. How could we not when her two older sisters were involved in all kinds of activities?

When she had her first cold at two weeks I was troubled but everyone reminded me that it was fall and she was constantly being exposed to little kids and all kinds of germs. I let it go. I kept letting all of the colds go until I noticed that instead of getting stronger she appeared to actually be getting weaker.

At four months I placed her in the exersaucer and she flopped over like a rag doll, literally. I wanted to throw up but instead made an appointment with the doctor. It would take weeks to get that appointment and a hospitalization before we received the most devastating news parents can ever receive. Spinal Muscular Atrophy. What the heck is that?

Well, it's awful, devastating and breathtaking. It stole Georgia's ability to breath at just six months of age. It left us all reeling and wondering how we would go on. Luckily for us, our friends and family have lifted us up. We have learned to live on faith and of course the support of those family and friends.

Before I lost my baby girl, babies didn't die in 'my world'. My maternal grandmother had 11 children and they are all still alive well into adulthood. My paternal grandmother had six children all of whom lived well into adulthood. Mike's maternal grandmother can trace their family history back 100 years and there are no records of babies or even children dying. I lived in a blissfully ignorant world.

My world was rocked on April 1st 2009 and then shattered on April 21st of that same year. I continue placing the pieces together thanks in large part to a new and expansive family. My SMA family. They are strong. They are passionate. They are hard core. They are courageous. They inspire me each and every day. They need a cure!!

There are many steps needed in finding a cure. One of the first ones is making sure that people know that Spinal Muscular Atrophy not only exists, it is creating angels every day. If you can't remember how to explain it to people you can always say that it's like 'Baby ALS or Lou Gehrig's disease.' That usually gets people's attention.

When Mike and I decided to get pregnant with a fourth child she had a 25% chance of having SMA. In fact, all of our children had that same chance. Because we are both carriers every pregnancy is risky. Somehow we ended up with 3 healthy girls but there are families out there that lose 2 and 3 children to this awful disease. Try to imagine it for even 10 seconds...

We are grateful for all four of our children but miss our 'Joja Wiwee' each and every day. We continue to ask for your help in raising awareness and funds for Spinal Muscular Atrophy not only to honor our daughter but honor and fight for so many other children - because, 'Happiness and moral duty are inseparably connected.' George Washington

Love to you all,

Kristen

It's a Blog Party!

2010-09-15T19:52:00.001-05:00

Okay, so I'm one day early but this is the only way that I am going to get it done. We're having a blog party and you're all invited! Today, September 16th, we are asking all of you fellow bloggers, facebookers, tweeters and whatever else you use to communicate with the world to join us. What's it all about? Well it's rather simple. Help us to raise awareness about SMA.

Here are a few facts:

SMA Statistics

SMA is the #1 genetic killer of young children.
SMA is estimated to occur in nearly 1 out of every 6,000 births.
1 in every 40 people, or nearly 10 million Americans, UNKNOWINGLY carries the gene responsible for SMA. Few have any known family history.
SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources.
The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.

What can you do to help? Lots of things. One of the easiest is to simply post some facts about Spinal Muscular Atrophy on your blogs, or on facebook. You can also help the Gwendolyn Strong Foundation win $20000 by clicking here. How about wearing an ivory ribbon and telling people about SMA when they ask what it's for. If you live here in the city please join us on October 3rd for Georgia's Journey of Hope. You can have fun with your family and friends and help raise funds towards finding a cure.

Today as I handed out some of our flyers to families at school one of the mom's had the courage to admit that she still didn't know what SMA is. She knows that we have a little angel named Georgia that passed away but doesn't understand why. I can assure you that she now knows a lot more about SMA. : )

So can you help me out? Do you have a blog? Please consider sharing some information about Spinal Muscular Atrophy. Don't have a blog? How about just posting some information on facebook.

"As long as we have faith in our own cause and an unconquerable will to win, victory will not be denied us."

Winston Churchill

Love to you all,

Kristen

The Garage Sale

2010-09-12T09:13:00.002-05:00

Well, it was a cold blustery day. We didn't have any big ticket items or half as much traffic as last year but we still managed to raise $350 for The Children's Hospital here in the city. If Mike's company matches our donation (keep your fingers crossed) we will double that amount. I figure that $700 isn't bad for one morning's worth of work.

Thank you to all that dropped off items, came and bought something or just came by to say 'hi'. A few of you just came by to make a donation. Thank you. Another big thank you to my mom who stayed the whole time. Her cinnamon buns were a big success and were gone shortly after 10:00.

I always find doing a garage sale exhausting but this year wasn't as stressful as I didn't feel pressured to do it. I decided to do it last minute and am glad that I did. It's very liberating to watch all of that stuff go to people who will use it while making room for anything new that we may need. The fact that the money all went to the hospital makes it all the more rewarding. I'm probably going to have to do it again next year as some people came by because they remembered that we were 'the proceeds house'.

The rest of the day was spent relaxing with friends. We were thrilled to meet and spend time with another SMA family. Their baby girl (SMA free) and Aria were fast friends. We took lots of pictures. : ) We are looking forward to spending more time with them in the future. They are the first SMA family that we have had the privilege of spending time with. Thanks for coming Lisa!

In the evening, the girls rode their bikes around on the street with their little buddies all lovingly referred to as 'The Bike Gang'. Maya asked Mike to take off her training wheels last week and he has been spending lots of time running around with her. Well, just to top off a great day our Maya took off! And, when I say took off I mean that she was riding all by herself, turning the corner and stopping on her own! I was choked up watching my anxious little girl, only four years old, riding around, so independent with a huge grin on her face.

Cross your fingers that starting preschool this week goes just as well!

Love to you all,

Kristen

Catching Up

2010-09-08T21:13:00.004-05:00

Wow! It's been a week since my last post. We have been very busy around here. Tickets are now available for Georgia's Journey of Hope. Thank you to all of the volunteers that showed up last week. We have plenty of help and I have no doubt that th event will once again be a success. Flyers will be ready in the next day or so. Thanks to a very generous graphic artist they will be showing off our new logo!

Betty's Hair Raiser is also proving to be a great success. Earlier today she had reached almost $1800. Thank you to all of our friends and family that have been so generous. My mom has also been busy making cinnamon buns. She has already sold several dozen and we are hoping to sell even more at our community garage sale this weekend. Just a reminder that if you would like to drop off anything on our driveway by Friday evening we will sell it on Saturday with all proceeds going to Winnipeg Children's Hospital.

On another note, I wanted to thank everyone for the response that I received from my last post. "The Truck" will now be published in FSMA's newsletter in November. I am truly humbled by the honor and can only hope that other families will take some comfort in those words.

Tomorrow is Calla's first day of school and I am already feeling disorganized. At least it's only a two day week to start!! : )

Love to you all,

Kristen

The Truck

2010-09-01T23:17:00.002-05:00

Love to you all,

Kristen

Betty's Hair Raiser

2010-08-31T09:00:00.003-05:00

So, in case you didn't already know, my mom is an absolutely incredible person. In conjunction with this year's Georgia's Journey of Hope she is accepting donations to either shave her head, get it into a mohawk or to keep it. All donations go to Families of Spinal Muscular Atrophy Canada and my mom has pledged to do whichever idea raises the most money. We would have liked to shave her hair at the actual fundraiser but she is leaving on a European river cruise for her 40th wedding anniversary a few days later so she is doing it later on in October. Don't worry we'll post all of the pictures!! : ) You can check out all of the details (and donate online) by clicking here.

And, just in case you still don't know how incredible my mom is, she will be baking her famous cinnamon buns. They will be available at the garage sale, September 11th with all proceeds going to Winnipeg Children's Hospital or you can pre-order some and we'll deliver them to you. All of the proceeds from the ordered cinnamon buns will go to Georgia's Journey of Hope. If you're interested please contact either my mom or me.

Just a quick reminder that there is a meeting at my place tomorrow night at 7:00. It won't be very long. Please bring a pen and a piece of paper.

Love to you all,

Kristen

3 months

2010-08-25T13:25:00.007-05:00

Well, somehow it's been 3 months since Aria joined us. In those three months she has kept us quite busy and has brought immeasurable joy to our family. I call her my little firecracker as she has quite the personality! She has no trouble letting us know when she needs something and will holler until that need is met. The other day I took a little longer that she would have liked to start feeding her and she let me know. She was yelling at the top of her lungs until she took a few contented sips, even sighed. She then opened her mouth to yell at me one more time, essentially telling me off, before resuming eating contently. : ) If she doesn't want to be put down in her car seat she has already figured out how to plant her feet and arch her back. I think that we are going to be in real trouble when she is a toddler!

Aria also loves to cuddle and she absolutely adores her big sisters. She sleeps most of the night normally getting up once to feed and is packing on the pounds. I'm not sure how much she weighs right now but I'm sure that it has to be at least 14 pounds. She has taken on that rounded baby look that all of my babies have had. Aria enjoys being outside and showing us daily how strong she is becoming. In the picture below she is sitting up on the couch.

Lying down with Calla.

Cuddling with Maya.

Bath time is hilarious around here. Aria loves to kick her legs but also leaves her arms relaxed at her sides. She resembles a true Irish dancer when she gets going! : )

Fast asleep at the local wading pool. I love how portable she is. It has allowed the girls and I to really enjoy being outside this summer!

Thanks to all of you that have picked up ribbons. I was so happy to come back after a couple days away to find my mailbox with only one ribbon. I have filled it up again. Please help yourself and remember to tell others about SMA.

Love to you all,

Kristen

Volunteers Please!

2010-08-18T22:13:00.004-05:00

We have been very busy around here getting everything ready for this year's fundraiser. I am thrilled to announce that Funquest has once again agreed to sponsor this year's event which means bouncers and of course cotton candy! The event will be very similar to last year, just at a slightly bigger location. If you have any suggestions about things to add please feel free to share your ideas. I am in need of volunteers again as well. There will be a meeting at my place on September 1st at 7:00. If you can't make the meeting but are still interested in helping out please contact me.

We have sent out close to 200 letters requesting prizes. If you or your company would like to make a donation please let us know. You will also be able to download the letter requesting prizes in the next day or two from the site.

For all of the SMA families we are working on setting up a collage of all of the little angels and warriors out there. Please email tanyafrancis@shaw.ca if you would like your child's picture to be included. You may also include a sentence or two about your child that will be added to the image.

Also, my mom is donating all of her profits from Norwex sales this summer to FSMAC. If you are running low on anything please call her before the end of summer. She is also working on another little project that some of you will be interested in. It has to do with head shaving... : ) Stay tuned for more details.

Love to you all,

Kristen

The Promise

2010-08-13T13:19:00.003-05:00

To Georgia,

"In those last few moments, I held you tight and apologized that I could not save you. I sang to you and asked you to stay even though I knew that our parting was within minutes. I promised you that I would never forget you or stop loving you. I promised that I would never let others forget about you or about this awful disease that was robbing you of your ability to breathe. I told you that I would fight to see SPINAL MUSCULAR ATROPHY cured so that others would not have to live the same fate.

The world of SMA is devastating, heart-wrenching and exhausting. It robs families not just of their children but can also rob them of their hope and optimism. On any given day, I can feel none, one or all of these feelings. I still have moments where I want to hide under the covers and not get up. I want to pretend that SMA doesn't exist. But...there you are.

I see your face not just in my memories but all over our home. I hear your laugh in the baby sister that is helping to heal this family. I see your pain in the faces of so many other little warriors. I can still feel your little hand in mine and the way your head would lay in my arms, so different from your sisters'. My promise to you will never be forgotten. You will remain a part of our lives for as long as my heart continues to beat.

I have come to realize that I cannot keep my promise alone. Last year hundreds of people helped to take the first step. I am hopeful that once again this year a community will come together. They will come because they remember you. They will come to celebrate your second birthday and have fun. They will come because they too have suffered a loss or know someone that has. They will come because your story has touched their lives. They will come because they don't just believe in a cure, they believe in HOPE."

Join me on October 3rd for the second annual Georgia's Journey of Hope. Help me to keep my promise.

Love to you all,

Kristen

Want to help? Letters are now available requesting prizes. Volunteers will be needed. Please contact me if you are interested. Ivory ribbons will be available in my mailbox starting next week until October 3rd.

No Regrets

2010-08-11T21:32:00.002-05:00

I happen to be lucky enough to live in a country that allows a parent to be off of work for up to a year, collect E.I. and return to the same position when that child is turning one. That is...if you have been working and contributing for the year previously. I obviously was not working and am not taking any kind of leave from any type of employment since the arrival of Aria. Mike, on the other hand, has been working and is entitled to taking a parental leave. Leaving his position however and the whole family living off of E.I. is a little bit scary but we have decided to bite the bullet and put our family first.

Since Georgia became sick I always try to make decisions that I am sure I won't regret in the long run. Mike seems to have taken on this same attitude as he is about to start a two month leave from work. This will allow us to spend the rest of the summer together, get the girls into school and pull off the fundraiser. We will also celebrate Georgie's second birthday and Thanksgiving before he returns.

We will be living off of some savings and the E.I. Things will be a little bit tight around here but we are all so excited. In fact, the countdown has been on for quite some time. Friday is his last day and Calla and Maya will both tell you that Daddy is going to be home for almost one hundred days!!

While we are a little bit nervous about the finances Mike and I have both had a good laugh when we ask ourselves that when our daughters walk down the aisle one day will we regret this time? Will we sit back and say, "Wow! This wedding is way too expensive. You really should have worked those two months!" I seriously doubt it.

Aria will only be this little once. Calla will only start grade one once and Maya will only be 4 years old once.

Living without regrets means taking a chance sometimes and we can't wait to have ours...TOGETHER!

Love to you all,

Kristen

Raising Awareness

2010-08-03T22:38:00.003-05:00

I tried to do this on Facebook but it didn't work. It will now get there by default.

Please help me to raise awareness by posting or emailing the following information.

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

SMA is one of the most prevalent genetic disorders. One in every 6,000 babies is born with SMA. SMA can strike anyone of any age, race or gender.One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA. 7.5 million Americans are carriers.

SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent. Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support. --THIS IS THE TYPE that Georgia had.

With each pregnancy Mike and I have there is a 25% chance that our baby will be affected. Calla, Maya and Aria are all healthy (Thank God) but they too may be carriers. We have lost one child and while we will probably never have any more children we continue to work towards a cure in honor of Georgia and all of the other warriors and angels out there.

August is SMA awareness month. Please consider wearing an ivory ribbon. The color is representative of the innocence and purity of SMA's victims.

Cure SMA

Six Years Old

2010-08-03T16:45:00.005-05:00

Well, the blog has been sort of ignored the last few weeks. Calla just finished two weeks of daily swimming lessons that seemed to somehow eat up any time I had. It was worth it in the end however as she started out being scared to put her face in the water and ended up swimming like a fish! She now likes to try and sit on the bottom. : ) She has been showing off her skills at the local wading pool and the beach.

I have been thinking that six years old must be pretty tough. There are so many new skills to be learned and experiences to live. Since Calla turned six she has really started to read. She has also started to ride her bike and now she is actually swimming. Can you imagine if we all tried to seriously learn 3 new skills in half a year. Think about how accomplished we'd all be?!

Did I mention that she also started skating over the winter and is now doing basic math. She has also learned how to do a pretty good cartwheel! In another month she'll be off everyday from 8:30 until 3:30 at school (I am hoping to have her home for lunch). I find it amazing to watch how much Calla is learning every day.

On another note August is SMA awareness month. I tell people regularly all about Georgia and what SMA is. As we approach Georgia's birthday I am going to throw out a challenge to all of my Winnipeg friends and family but right now I am asking anybody who reads this to make a commitment to telling two people about SMA - two people that don't already know.

You could also wear an ivory ribbon. Why ivory? The color represents innocence and purity. If you wear one people will automatically ask what it stands for. I figure that if we all went at the task of raising awareness about SMA the way a six year old approaches life, before we knew it there would be no one left to tell.

Love to you all,

Kristen

The Weight of Aria

2010-07-25T09:53:00.002-05:00

Once, not so long ago I wrote about how I missed the weight of Georgia. A new mother knows exactly what I am talking about. You carry around this extra weight in your midsection for nine months and then you carry around that weight in your arms for the next several years. Recently, a friend asked me if I felt like I had the weight back. It took me a minute to realize what she was referring to and then I was surprised by my answer. 'Yes.'

Aria is now about twelve pounds. She, in no way replaces Georgia but rather, continually reminds us of the lessons that Georgie taught. At two months of age, Aria now sees her spirit friends on a regular basis. Calla and Maya have actually noticed this on their own. "What is she looking at mom? and "Why is she looking like that?" are frequent questions lately. My answer is always simple, "Her spirit friends of course." We can't see them but she obviously see something that makes her happy. I take comfort in the fact that she sees them in different places but most often in my room. Calla and Maya have asked if she can see Georgie and I always say that I think she can. This seems to bring comfort to Calla and Maya too.

Aria has also discovered her hands and her tongue. She is constantly gnawing on her fists or sticking out her tongue. I try to smile and play with her when she is sticking out her tongue but there is always a sick feeling in my stomach. For those of you not familiar with the symptoms of SMA, one of them is the rippling of the tongue. Mike and I have both admitted that we sometimes stare at Aria's tongue half expecting to see the rippling even though we know that she is fine.

How do we know that she is fine? Well, she holds her head and her back up to look around constantly. When I try to burp her against my chest she plants her feet down and stands up! She is constantly kicking and trying to roll over. Of course, she has a super loud cry which like I said actually makes me laugh.

At twelve pounds Aria has grounded me. She reminds me of the beauty and hope that exists in the world. She reminds me that life is worth living and taking risks is a part of living. She makes me smile and laugh and keeps me so busy that sometimes I can't remember the last time that I sat down. She loves to cuddle and forces me to carry her often. The weight of Aria doesn't replace the weight of Georgia but her weight is exactly what I need right now.

Love to you all,

Kristen

The Sound of Life

2010-07-18T10:54:00.003-05:00

When a baby is born we all wait to hear that famous first cry that tells us that s/he is alive and breathing. When Calla was born we were relieved to hear that first cry but within a few days I would start to dread it. Calla was by many accounts one of the most colicky babies most people had ever met. There was no rhyme or reason to her crying, she basically just cried around the clock. She would have about 3 twenty minute naps during the day and the rest of the time was spent with me trying to keep her from crying. Once she started crying she could go on for an hour or two at a time. It was exhausting. This went on for several months before she settled and eventually became one of the most calm toddlers anyone had ever met. I guess that she had gotten it all out of her system early! : )

Maya was a calmer baby who still cried but was much more easy to settle. Georgia was born with a strong cry but within a few weeks it would get weaker and weaker. I remember one day she was asleep in her car seat at Maya's drop in class and started to cry. I couldn't hear her but I could see her from where I was standing. I felt awful, not knowing how long she had been upset. I never dreaded hearing Georgia's cry because she was easily settled most of the time and it was such a soft sound. By the time she was three months, I swear that she understood half of what I said to her and would often wait patiently to be fed or picked up.

It sounds awful but I do find myself smiling and almost laughing sometimes when I hear Aria cry. It's not that I like her to be upset, but hearing how loud she can get and watching her kick and try to roll around is amazing! She is so strong and she is also easily settled. When she is kicking up a fit to be fed I remind myself to be grateful.

The night before Georgia died she had more breath than she'd had in weeks. She was cooing and trying to sing that night. Sadly, I had almost forgotten the sound of her voice. In the moment just before she took her last breath she cried out. It wasn't very loud but I knew that it took every last bit of her energy. It wasn't a painful cry, more like a cry of relief...or at least I like to think of it that way. Ironically, it was the first and last sound of her life.

So now when I hear Aria bellowing it out I remind myself that what I am hearing is the sound of life, music to my ears. : )

Love to you all,

Kristen

Maya's Song

2010-07-13T11:09:00.003-05:00

Healing after a loss can take a short while or it can take a whole lifetime. When I consider the loss of Georgia I know that healing for me will take a lifetime, but what about the girls? I often wonder how much they will remember about their baby sister. Will they feel her absence for the rest of their lives the way that I will? While I want them to always know about Georgia and honor her memory, I definitely hope that they will heal.

So the other day when I heard Maya singing I couldn't help but smile. Calla's friend had just arrived and was very interested in Aria. She had all kinds of questions that the girls were more than willing to answer. All of a sudden Maya broke into song, her arms open wide and twirled around the living room. Her song was about how Aria was her new baby sister and that she was going to stay with her forever. She sang about how she doesn't like doctors and hospitals and how Aria will stay at home with her. She sang about how Georgie got sick and died. And then at the very end, she sang about how she loved both Aria and Georgia.

If I had known that she would sing that song ahead of time I would have recorded it but instead I am writing about it and hoping that I never forget. My children are healing. In fact, my girls are truly amazing... all four of them!

Love to you all,

Kristen

The World of SMA

2010-07-11T15:59:00.003-05:00

In the world of SMA there are huge celebrations and far too many farewells. One of the most exciting things that happened this week is that Lucy Zahn (SMA 1) turned one. Yay Lucy!! Lucy's mom Barb and several relatives and friends all shaved their heads to make money for SMA and mark this momentous day. I should tell you that Barb had beautiful thick dark long hair but looks even more beautiful now that she has it shaved. Her selfless determination to save her daughter only shines through that much more. Your courage is inspiring Barb!

In Toronto the Rebecca Run went on. It takes place in New Market Ontario and this year our friend Emersyn Klomp was honored. Emersyn and Georgie would have been the same age. Their birth and angel dates are within weeks of each other. All money raised is donated to Families of Spinal Muscular Atrophy Canada. The Rebecca Run has become so popular that it now sells out! One day we'll all walk together Melanie!

And, then there are the farewells. On Friday right here in Winnipeg a baby girl was laid to rest. Josie was only a month old when she passed away from SMA. For those of you that are on Facebook we all know and are saddened by the passing of Xavier. Xavier had just turned 4 - a miracle in itself!! Two days later, on Thursday he had a plug that couldn't be cleared. My heart aches for these families and it saddens me to continually hear about all of these children dying.

And so... we continue on, not just to honor our Georgie but so many of these kids. Plans are now in the works for Georgia's Journey of Hope 2010. This is a heads up and a reminder for all of our friends and family here in Winnipeg. It will take place on Sunday October 3rd from 12:30-4:30 in the afternoon. I will once again be putting out a call for volunteers late in August. It will be a family fun event with bouncers and face painting of course. I am hoping that our famous balloon animal gal Kristen will be attending otherwise someone is going to have to take a course!! : ) There will also be food and drinks. Tickets will be available in September. Please help us to spread the word not just about the event but about SMA.

Love to you all,

Kristen

6 Weeks

2010-07-04T15:58:00.006-05:00

The last six weeks have flown by for me despite the fact that I have been battling thrush for much of it. I am happy to say that the meds finally seem to be kicking in and I am more comfortable every day. Aria continues to grow like a weed. Many of the little sleepers and outfits that she originally wore no longer fit. She is now smiling and cooing and tries to watch me when I walk around in a room. She is also amazingly strong. She holds her head up to look around and loves to plant her feet down so that she can push up into standing. Calla and Maya remain enamoured with their little sister as you can see in the picture below.

Mike has taken the girls to the beach a couple of times this year. I haven't made it yet because it has been super hot and anywhere there is shade there are mosquitos. It kind of sucks for a newborn.

Here is Aria in one of her pretty little outfits. I just love ladybugs!

This is Calla riding a pony on her field trip to the farm. Mike took the day off and joined them.

Here are a couple of shots from the littlest big girl's birthday. She decorated her own crown and wanted a princess birthday cake. Belle is her favorite.

Love to you all,

Kristen

Missing

2010-07-01T14:52:00.004-05:00

This week has been a roller coaster of emotions for me. Last weekend we of course celebrated Maya's fourth birthday. We had a small party for her on Saturday with a few of her little friends. It went really well and we were even able to get outside this year - first time since she turned one.

On Tuesday we celebrated Calla finishing up kindergarten. It was quite obvious that the teacher and the kids had all worked really hard into making a special presentation for all of us. There were songs, a couple of poems and a slide presentation followed by snacks of course. Calla has really come out of her shell this year and we couldn't be happier with her development. She is already looking forward to grade one.

The roller coaster of course comes into play when I stop and look around and feel the absence. All of these big days and celebrations I feel like something is missing. It's almost like a sense of panic when you think that you have forgotten something. Of course, I haven't forgotten anything. I am just always aware that Georgie is missing. She should have been running around getting into trouble at the party and we should have been trying to keep her quiet at Calla's celebration. Not to be. It really hits home when I look at pictures and see how much the girls have changed and grown. Georgie will remain 6 months forever.

Do you know that I never sent in a family picture to Calla's class this year as requested by her teacher? I had in fact forgotten at the beginning of the year but when I went in to volunteer I saw the wall where several photos of happy families were hanging and I remembered. Many of them were obviously taken during the summer holidays and all of them were full of joy. A family picture?? The last one we had taken was by the NILMDTS photographer and while I consider it absolutely beautiful I felt funny about sending it in. So...I didn't and funnily enough Calla never asked me to. Maybe she was just confused as me about a family picture.

How do I take a family picture really? If I wanted to take a picture of all four of my girls I could give one of them a picture of Georgie and have them hold it or I could line Calla, Maya and Aria up next to Georgie's headstone. I actually don't mind that idea but others would probably find it weird.

I don't even know how to sign the thank you cards I have been handing to people on behalf of gifts for Aria. Do I sign Georgie's name too? I wasn't but now I feel guilty. It is hard to reconcile with the idea that she will always be missing from every major event that we celebrate as a family. Fourteen months, one week and two days after losing Georgia and I miss her now as much as the day that she took her last breath.

Missing you running around at the beach today Georgie,

Love to you all,

Kristen

4 Years Old!

2010-06-27T08:53:00.002-05:00

Dear Maya,

Four years ago your daddy's hands guided you into this world and we met you for the first time. I remember how when they later placed you in the bassinette next to my bed you rolled right onto your side so that you could still see me! I remember how you had a tuft of dark red hair at the top of your head and how later on it grew into a perfect mohawk! : ) By the time you were six months old you would sit at the dinner table with us and try to make us laugh. Even as a baby you were trying to make the people around you happy.

We love that at 4 you love to dance. When you are happy, you will sing and dance around our house making us all want to join in with you.

We love that at 4 your excitement about life is contagious. I watched you skip all the way to a friend's house the other day and couldn't stop smiling.

We love that you are kind and sweet.

We love that you are determined and stubborn.

We love that you are the little sister and the big sister.

We love that your outfits of choice are usually bathing suits - even when its -30 outside!

We love that you think that Grand Forks is the greatest place on earth!

We love that you are smart and independent even when it's frustrating for us parents.

We love your innocence and your wisdom.

We love watching you change and grow.

Maya, you are the spark in this family. The one that keeps us all on our toes, making us laugh along the way. We love you to the moon and back!

Happy 4th Birthday to the Littlest Big Girl!

Love Mommy and Daddy

Father's Day

2010-06-20T10:28:00.003-05:00

Truthfully, I am too tired to post much of anything today but I wanted to wish everyone a Happy Father's Day. I am so blessed to have an amazing father, father in-law and the best dad for my kids. Mike is hoping to take the girls to the beach today if the weather holds. Later we'll go and join my mom and dad for dinner. Mike's dad is currently up in the North West Territories on holiday so we won't be seeing him today but hopefully later this summer.

Love to you all,

Kristen

P.S. Well we didn't make it to the beach as Maya had a tummy ache in the morning, but we ended up playing on the neighbours' fabulous slip 'n slide all afternoon. Fun! Here are some videos of the girls wishing my dad a Happy Father's Day while sliding. - Mike

The Color Purple

2010-06-17T20:23:00.003-05:00

Purple has never been my favorite color even though I quite like it. Calla and Maya both claim it to be their favorite so I decided to do Aria's room in that color. It's beautiful and I love it! I can't say however, that I am loving the color very much these days. If you are squeamish or uncomfortable with the idea of breastfeeding please stop reading this post. If you want a bit of a laugh at my expense, read on!

With Calla, Maya and Georgia I was never able to nurse them for very long. The main underlying problem was that I actually made too much milk. Believe it or not, making too much milk causes just as many problems as not making enough. In my case, it lead to constant engorgement, difficulty latching, leaking, plugged ducts, thrush and mastitis. I did seek help from lactation consultants with all three girls and in the end all of them had no idea how to help me. With Aria I decided that I would feed her for at least two weeks and then if it was going downhill I would stop.

Surprisingly, I didn't become engorged this time and for the first time in my life I was able to nurse my baby totally pain free. That was until THRUSH came into my life. I wasn't surprised that I got it as I had antibiotics during labor which is considered to be one of the main causes. For those of you that don't know thrush causes burning, and shooting pains . Not fun!

I immediately started treating myself with gentian violet. Oh yes, there is nothing like painting your nipples purple and having a baby with a purple mouth to boost a new mother's spirits! : ) Add that to the pain and sleep deprivation and it can be pretty discouraging. I should also mention that it's extremely messy and stains everything it touches including your skin. Luckily I had my little cheer leader Maya who happened to think that purple nipples and a purple mouth are beautiful. She even went over the the neighbor's one day and declared, "My mommy paints her nipples!" Thank goodness my neighbor knew what was going on and is a very open minded person.

Unfortunately, the gentian violet didn't work. This lead to a trip to the Walk In whereby I was prescribed something that is now considered 'ineffective' in the case of thrush, followed by a melt down at the pharmacy and another at home. Thanks to a fabulous friend and public health nurse I now have something much stronger that I am optimistic about. We have also been able to put away the purple stuff and feel a little more comfortable venturing out in public again.

So... we are still nursing and will continue until the we are done with the meds. But like I said I am not loving purple very much these days.

For those of you wondering, Aria has been unaffected by the thrush thus far and is packing on the pounds. She now weighs around 9lbs. That's almost two pounds since birth. She is a content baby for the most part and is just starting to wake up into this world. We are enjoying every moment with her.

Love to you all,

Kristen

Pictures!!

2010-06-10T08:14:00.004-05:00

On Sunday our very kind and generous friend Tanya came over to take some new born shots of Aria. Now Aria wasn't exactly cooperative and yet somehow Tanya has taken some beautiful pictures that we will get to treasure. Please click on Tanya Lynn's link on the right hand side if you'd like to see them. EDIT: here is a direct link to the pictures that will always work (Tanya updates her blog pretty often so Aria's pictures may move off the home page soon)

Thank you so much Tanya!

Love to you all,

Kristen

2 Weeks

2010-06-05T09:14:00.007-05:00

I have been slow to update lately. I have found myself a little bit busy. Aria arrived 2 weeks ago and we already have lots of pictures. As promised I have posted a few here and will continue to post them as she grows. There is also one picture of Maya with her friend Addy at their recital. Unfortunately, we don't have any of Calla at the moment because we forgot our camera that night. I'll check with friends.

While I have been trying to take it easy Aria has been all over the place in her first two weeks of life. She of course, made it to the concert hall two nights in a row to watch her sisters dance. They both did a fantastic job and can't wait to start dancing again in the fall. She has also been to Grandma and Grumpa's, friends', gymnastics and the park. Tomorrow she will be attending her first birthday party! : )

The girls are absolutely infatuated with their new baby sister. In doing so they have not forgotten about Georgia at all. Maya looked around the dinner table the other day and asked, "Mommy? So...when is Georgia going to come down from Heaven to meet Aria?" That lead to a discussion about the idea that Georgia has probably already met Aria and can see her all of the time. Poor Maya also seems to think that Aria will be leaving us some time soon. She has asked me more than once when she will be going to Heaven. While I find her question kind of sad I am amazed at the compassion and attention that she continues to lavish on Aria even while believing that she is going to die before her first birthday. Maybe she'll grown up to be a nurse. Who knows!

On another note Aria's name is pronounced 'ar' like in the word 'car'. I only mention it because many people have been asking. Who does she look like? Well, she looks like them all. She even sounds like the other three. Her hair color is light brown like Georgia's and I'm pretty sure that I wouldn't be able to tell them apart at this age. We have some pictures where they look almost identical especially from the profile. Straight on however, she looks a little bit more like Maya.

Somebody is getting hungry...

Love to you all,

Kristen

To Love Anew

2010-05-26T12:38:00.004-05:00

Well, Aria's labor didn't go exactly as planned but then again nothing about Aria has ever been planned...at least by me. Granted we did choose to get pregnant with her consciously but I really believed that I would never be given another girl. Wrong! The truth is that I have never imagined myself being a parent to four girls but here I am. After Georgia was born we had pretty much decided that we were probably done having children. Wrong! And, after birthing 3 babies with relative ease, then the fourth should pretty much walk out right?! Wrong!

My water broke around 4:30 am Saturday morning WHILE I WAS IN BED! That never happens! I mean I wasn't even doing anything. My water broke with Maya and Georgia minutes before they were born. So, I got myself cleaned up and tried to go back to sleep. After a few big contractions I decided to get up and get showered. Mike and I made our way over to the hospital around 6:30. At that point my contractions were around 5 minutes apart and weren't very strong. I had told my mom before leaving that it was going to be a LONG day.

A short while after arriving at the hospital my contractions spaced out even more and stopped altogether. The nurses assured me that they would start me on Pitocin around 10:30 that morning if they didn't pick back up. Mike and I had breakfast and walked and walked. Later on we had lunch and then decided to have a rest. Finally, around 4:00 I received a room and the drip was started a short while later.

By 10:30 pm, 6 hours on the drip, and now enduring hard contractions they told me that I had made no progress. The long day was starting to wear on Mike and I. The doctor came in at one point and told us not to get discouraged. She was confident that as soon as the Pitocin really kicked in Aria would be born in record time. My confidence was shot and so was Mike's.

It was around this time that he said out loud, "I only hope that we can love her as much as we love Georgia." At first I was shocked and then I realized that Mike hasn't been able to feel this baby grow and move daily for the last several months. All of a suddent, I started to wonder too. Our love for Calla, Maya and Georgia were absolute. Was it possible to love another little being after losing one that we cherished? Was it really possible to love her as much as the one we had originally planned for? Was it possible to love her as much as the one I had not only brought into the world, but had held as she left it? Could I love her as fiercely as I love my other three children?

She arrived just over an hour later. The doctor had been absolutely right. 4 to 10 cm in an hour and approximately 10 minutes of pushing. There was a moment of hushed silence as they placed her on my chest. Everybody that had joined us in that room knew our family story. Everybody in that room stared at her in awe just like we did. There was no doubt that she was ours. There was no doubt that that we already loved her. There was no doubt that in that moment she held our heart in her little hands. A feeling that remains.

Love to you all,

Kristen

Aria's arrival

2010-05-23T15:08:00.005-05:00

(posted by Mike)
Aria Evangeline Rose Lucas has arrived!

She was born at 11:51pm last night (May 22, at least in Winnipeg time!). She weighed 7 pounds 2 ounces and measured 20 1/4 inches. She is cute as a button!

Baby and mom are both doing great -- although Kristen is a little tired of course.

Once, not long after Calla was born, I was visiting my sister Peggy in Vancouver. A friend of hers asked me out of the blue, "What's it like to have a baby?" I thought for a moment, then said, "Well, you're in a room with a bunch of people, and suddenly there's a new person in the room, and she's yours, and she didn't come in through the door." I've never felt that more strongly than last night: the utter miracle that is new life, so much the opposite of (and yet so intertwined with) everything we experienced last April.

Bracelets

2010-05-17T16:43:00.005-05:00

To all of my friends and family here in Canada and most especially Winnipeg, my friend Tanya has been working with the Gwendolyn Strong Foundation and has a special offer for all of our Canadian friends. As many of you know Tanya was the one who made and gave the girls and I three very beautiful and personal charm bracelets in memory of Georgia. She has now been making them as part of a fundraiser for the Gwendolyn Strong Foundation. Now all of us up here can't get the tax receipt but you could still help out and receive a beautiful bracelet in the process.

Tanya is offering to have a bracelet made for you for $45.00 Canadian. This includes 9 personal charms of your choosing. They can be birthstones, initials, photos, whatever you can think of. You will also receive an End SMA charm as part of the fundraiser. It obviously doesn't have to be a memorial bracelet like mine. Please check it out here This is a great opportunity to purchase a beautiful gift and help the fight against SMA. The deadline was actually this past weekend but has been extended for our Canadian and Winnipeg purchasers.

I should say that people almost always notice mine and ask about it. For me, it is often a great opportunity to tell people Georgia's story or about SMA. For you it might be just the chance to show off pictures of your kids or tell them a little bit about yourself.

Love to you all,

Kristen