Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Wednesday, December 30, 2009

Christmas Pictures

We ended up having a pretty great Christmas despite missing our Georgie this year. The girls woke up and walked downstairs to find a new dollhouse from Santa. Calla will tell anyone who will listen that it's taller than her! The elves were up a little late on Christmas Eve putting it together but it was really worth it in the end. My parents came over in the morning to watch Calla and Maya open their presents and have breakfast with us. The girls were really into it this year as they both understand the concept and still believe in 'Santa'.

We headed back over to my parents later on in the day to spend time with my brother Kevin and his wife Melissa and of course partake in our annual steak and lobster Christmas dinner! Christmas day has always been quiet around the McDowell house and we're not big turkey eaters so years ago my mom starting doing something a little bit different. There are absolutely no complaints! : )

The last few days have been busy catching up with friends and getting stuff done around the house. Mike has been home since the 22nd and we're loving it. Technically, nobody has to be anywhere until the 4th!

We have nothing big planned tomorrow. We're looking forward to Mike's homemade pizza and movies. Calla has made me promise her that I would make a giant happy face cookie with her. Not sure where she got the idea but she seems excited to do it for New Year's. I'll post a picture of our creation tomorrow.

Here are a few pictures from the last week.



Oh, the excitement!


The girls admiring their dollhouse from Santa.


Mike helping the kids to release the balloons for Georgia.


One of the pictures on our Christmas card this year. We didn't get them done until really late this year so most people didn't receive one unless we saw you in person. My apologies but I will try harder next year.

Love to you all,

Kristen

Thursday, December 24, 2009

Merry Christmas to All...

We have had a very busy few days. On Saturday we attended my mom's family Christmas. There were approximately 40 people there and I figured that that is only just over half of us. My mom is one of 11 children so it doesn't take that many of us to fill a house. Needless to say there was tons of food, lots of laughter and 'Santa' even made an appearance. Calla and Maya had a blast playing with their cousins and of course receiving gifts from the big guy in red.

The next day was the family brunch and then we had some friends for dinner. We are so grateful to have so many loving and supportive people in our lives. Our friends showed up with gifts for the girls, flowers for me and the most touching gift was balloons to be released in honor of our sweet Georgia. This meant bundling up after supper in our toques, mitts and boots but it was so touching to see the little ones let go of their balloons and wish Georgie a Merry Christmas. The even chased them into the backyard where we all watched them as they slowly disappeared.

The last few days have been filled with a play, a movie, playing in all of the new snow and of course finishing up all of the Christmas stuff. It has been much harder to get into the spirit this year but Calla and Maya's excitement is quite infectious.

We had thought that we wouldn't hang Georgia's stocking this year. What were we going to put into it anyway? Well, this year there will be a picture of a little girl who is two years old. The other day as Mike and I walked through the mall to a movie he was drawn by the World Vision booth. I actually had decided that we were going to separate for a few minutes so I kept on walking. My very thoughtful and generous husband eventually called me back over and asked me if we could sponsor a child this year and place her picture in Georgie's stocking. I immediately scanned the pictures of children in front of me and picked up an image of a little girl named Gloria. Her eyes, while not blue, are huge and expressive and she has that round face and chubby cheeks that remind me of all 3 of my babies. "This is the one". I said.

The girl working at the booth was so excited. She told me that so many people had picked up Gloria's picture but they always ended up putting it down. She couldn't understand why the little girl had been waiting so long for a sponsor. I just smiled. I have no doubt that we were meant to sponsor her. So this year in honor of the child we lost we will help to keep another alive. Given the circumstances this is one of the best gifts that I could be given.

We hope that tonight you find yourself surrounded by people that you love and love you in return. For those of you mourning a loss we hope that you find comfort in memories and that feeling that only comes with Christmas, some would call magic.

Merry Christmas!

Love to you all,

Kristen

Saturday, December 19, 2009

Wish Upon a Star

There have been many questions since I announced our pregnancy. From how am I feeling, (just fine thank you) to what is CVS testing anyway? The simplest one to answer is, do we know if the baby is a boy or a girl? The answer is yes. The testing we had done was genetic and therefore had to figure out the gender because some diseases are carried on the X or Y chromosome. When I received the results I also asked to know the gender. I couldn't help myself.

On the afternoon of April 3rd of this year I uttered 5 words that altered my girls' childhoods forever. "Georgia is going to die." There were many questions as you remember. They so desperately wanted to keep her as we all did but when they found out that that just wasn't going to happen they asked us if we could make them another sister 'to keep'. This request has come up many times over the last 7 months but we have explained to them that life doesn't offer any guarantees. Firstly, we could give them another sibling but that baby could very well be a boy. They weren't thrilled about this but seemed willing to accept that possibility. : ) The second thing that we told them was that if we had another baby, that baby may very well leave us and go to Heaven too. In the beginning, this lead to silence on their part but as time went on they continued to request a baby sister anyway.

I, on the other hand was convinced that even if we had another child it would be a boy. I can't fully explain why except to say that I felt like I had been granted my quota of girls and even if I had 10 more babies (which I won't) I'd have boys. Please understand that I consider boys every much a blessing as I do girls but somehow being granted another daughter would be too good to be true.

Often in the evening, Calla will spot the first star and make a wish. She does this very seriously as only a 5 year old can. I know that she often wishes for normal 5 year old things like toys but every once in a while I see a look come over her face and I know that she is wishing for something way more meaningful than a Webkinz. She never tells us her wish, afraid that it won't come true but last night she told me that she thinks that Georgie is up there in that first bright star of the evening. I love the idea that Calla believes that Georgie is up there helping her dreams come true because in this case that is exactly what happened.

Calla and Maya are thrilled to be expecting another sister. She has no name yet only 'baby'. They kiss her goodnight every evening right after they have sent kisses up to Heaven for Georgie. I guess sometimes wishes really do come true.

Love to you all,

Kristen

Friday, December 11, 2009

The Bump

Two and a half months ago I sat in a public bathroom and stared at a stick that would change the course of this family. Dozens of emotions ran through me before I did something that I didn't know I could do. I took all of those emotions, shoved them deep down inside and then disposed of the evidence in a garbage can. In order to understand this you'd have to go back to August.

Sometime while we were on holidays or shortly before Mike and I decided that if the only reason we chose not to have another child was due to the fact that we were scared then that really wasn't a reason and certainly no way to live. Georgia taught us this and we do our best to live it. And so, at the end of September I stared at the stick in awe.

While I say that we do our best not to live in fear that was the one of the overwhelming emotions that set in. The idea of waiting nine months to find out if this child would even have a chance was too much for me to bear. And so, we decided to go ahead with the CVS testing. It is a test similar to an amnio where they take a piece of the placenta and then test for everything under the sun, including SMA. Because we decided not to tell anyone, this meant that on the morning of November 16th I woke up and 3:30 and snuck out of the house to make a 5:00 am flight to Toronto (CVS testing is no longer done in Winnipeg). The test went smoothly and I returned home in time to eat a late supper with the girls. We weren't ready to deal with everybody's questions, never mind opinions so we kept our pregnancy quiet.

11 Days later we received the good news. The baby does not have SMA or any of the other conditions that they apparently tested for. Mike and I were thrilled and relieved and thought that we were ready to share our joy with others. We managed to tell immediate family and a couple of friends before the shock and the reality of the situation started to really set in. There were also still a lot of 'What if?' feelings. After living in denial for weeks we realized that we needed time to let he news truly sink in. It has now been two weeks since we received the results and we are starting to accept the idea that maybe we really have been granted another chance.

We wouldn't have been able to keep it a secret much longer as I am now 16 weeks along. Being that this is my fourth pregnancy and I am a rather small framed person there is definitely a bump starting to make itself known. The bump continually reminds me that living in denial is no longer an option. At times I think that it even mocks me and asks why I would consider something so miraculous worth keeping a secret. The bump is a growing hope for our little family. Underneath the bump there lives a being that we hope will join us. We hope to watch that being learn to sit up, walk, run and grow up. We hope to hear this being laugh and scream in delight with her sisters. We even hope to hear her scream her lungs out when she scrapes her knee.

Saying all of that there are still some things that I want others to understand. Bringing another child into the world DOES NOT make everything better. While it does offer us another chance, s/he will never replace our Georgie. In fact, it is quite difficult at times to feel totally happy about bringing a child into the world when we only just lost one. Bringing another child into the world DOES NOT change our commitment to finding a cure for SMA. Georgia's Journey of Hope will go as planned. In fact, I view this child as another warrior to add to the ranks.

Love to you all,

Kristen


PS Within half an hour of hearing the good news I had to pack up the girls and drive them to dance. We all screamed in delight (well, I actually started to cry) as we passed the Blues' house. For the first time since the day after Georgia's funeral the twinkling stars were shining. I almost jumped out and banged on your door Lorna! Thank you for making our day that much more special.

Sunday, December 6, 2009

Songs

I know that 'they' say that our sense of smell has the longest memory but I also believe that our memory for music, particularly certain songs and melodies, is amazingly long as well. Isn't it amazing how only the first few notes of a song can take us back to a different time and place?

Sometimes at the girls' dance class the instructor plays a hauntingly beautiful instrumental version of 'Land of the Silver Birch'. It doesn't matter what I am doing whether I'm reading a story or involved in a conversation, I am immediately distracted and holding Georgie in my arms if but for a few minutes. If Maya is feeling sad and missing her little sister she often takes out Georgia's musical seahorse or her aquarium and sits down to listen to the music.

Now that we have started to listen to Christmas Carols the flooding of memories only gets stronger. Calla, Maya and Georgie's favorite Christmas song last year was "Do You Hear What I Hear?" Calla and I could sing the whole song from memory which we often did for Maya and Georgia. The week leading up to Christmas last year Georgie was not very happy (quite gassy) and I can't tell you how many times we sung that song to her. It didn't matter how miserable she was feeling or how off key we sang, she ALWAYS smiled! As I have said before Georgie was just a musical baby and in turn she made us all musical.

The other day we heard the song "Do You Hear What I Hear?" for the first time this season. As I started to have flashes of Georgia's smiling face, Calla's lit up with a grin. She kind of got a serene look on her face and she said, "Hey mom, I know this song!"

It makes me sad to think that Calla and especially Maya's memories of Georgia will fade as time goes by. The other day as I watched Calla start singing the song softly to herself however, I realized that she was remembering. And, as long as we keep talking and singing they will always have memories of their baby sister that they can hold in their hearts.

Love to you all,

Kristen

Thursday, December 3, 2009

Holiday Spirit

Earlier this week we passed the deadline for the Unite for the Cure Campaign. I am so pleased to tell you that the families involved have raised over $95 000 and that Dr. Keirstead is already receiving some of that money. Even better news is that November 30th was only a soft deadline and the families involved are still planning events to continue raising funds. We are expected to surpass the goal!!

November 22nd marked my friend Emma's birthday and this year she and and her husband Bruce planned something special. They hosted an evening where they provided the food and fun and asked all of their guests to consider making donations to FSMAC. Not only did they raise much needed awareness about SMA, they also managed to raise an incredible $1000! What an awesome birthday party! Thank you so much Emma and Bruce for being such generous people and part of our amazing support system. We are so grateful to have you in our lives. Thank you as well to all of the birthday guests that took part in the event. Your generosity is overwhelming. Sorry Emma, I have yet to figure out how to post that picture.

Here at home we have started to get into the holiday spirit. Last Friday Mike set up the Christmas tree only to take it down again (lighting issues) and run out on Saturday morning to buy a new one. We then put it up on Saturday evening and finally managed to decorate it on Sunday morning in our pyjamas (at Calla's insistence). Calla spends her days dancing around singing Christmas carols and Maya tries to join in when she can remember the words. Next week both Calla and Maya have Christmas performances at their school that they both seem really excited about. Christmas is so much fun when the little ones are around! : )

Love to you all,

Kristen

Thursday, November 26, 2009

Baby Steps

Georgia would be 13.5 months by now. Had she been healthy and followed in her sisters' footsteps she'd be toddling around the house by now. It's not something that I dwell on or can really imagine but it does cross my mind quite often especially when I see other little ones her age. The crib still stands in our room and her room remains untouched for the most part. This past week however, I took some baby steps of my own.

Calla's kindergarten class as well as the other kindergarten class has a special community project. They are collecting new household items for The NEEDS society that provides education, social activities and employment opportunities for immigrant and refugee families. When I found out about their project I was reminded that many of the people that land in this great country arrive with nothing but the clothes on their backs. I can't imagine being a mother arriving in a foreign (and very cold country) and not being able to provide for my children.

And so... I walked into Georgia's room and pulled out some of the clothes that had been given to her that still had tags on them (12-18 months) and placed them in the bag. I handed them over to the teacher myself and actually didn't feel sad. All that I could think of was that somewhere there was a mother who would be thrilled to receive some beautiful and warm clothes for her little girl. That felt really good and I have no doubt that Georgie was smiling down on the tentative steps that her mommy was taking.

Happy Thanksgiving to all of our American friends! We are so grateful to have all of you in our lives!

Love to you all,

Kristen

Saturday, November 21, 2009

7 months

I often ask myself what I have done in the last seven months. When I am feeling generous I remind myself that I have done plenty, most importantly working through not just my own grief but that of my husband and children as well. When I am feeling down however I become quite discouraged especially when I look back on the last month and a half. Since Georgia's Journey of Hope life has just seemed a little less joyful. My motivation and energy have plummeted. I get through my days and I focus on finding things to be grateful for but sometimes even the smallest of tasks seem like mountains to me.

Lately, I have started to feel the energy returning. I am continually inspired by the amazing people in the SMA community as well as those around me who continue to share my burden when the weight seems to heavy to bear. Take my friend Laura and her family for example. Laura and her mom sell Total She Products They took their commission from one of the products for the month of October and donated it to FSMAC. Her dad's company Grain Insurance and Guarantee had an office raffle ($115) and the social committee managed to raise $500.00. By raising awareness Laura and her family raised $723.75. Wow!

My auntie Joan who lives in the very small Manitoba town of Strathclair has also been selling the cutest homemade knit hats in her store. All proceeds are continually being donated to FSMAC. My friends Emma and Bruce out in Calgary also recently held an open house asking their guests to bring donations. We're still waiting on the final tally for that one but I have no doubt that it will be great.

And so as we approach the holiday season I thank all of you that continue to lift our burden and remind me that together we can move mountains.

Love to you all,

Kristen

Thursday, November 19, 2009

SMA Today

I've let blogging go for too long now. I have been wanting to sit down and write about many things but I need to prioritize. Let's focus on what is happening in the world of SMA today. There is an article in Esquire magazine talking about Dr. Keirstead's amazing work. Here is an exerpt:

"In 2002, at his lab at UC-Irvine, Hans Keirstead delicately sliced open the spines of eight lab rats with a scalpel, then not so delicately punched into their spinal-cord tissue with the force of two hundred kilodynes. A week later, he reached for a vial inside which was something most of the scientific world believed was impossible: a stem-cell solution so pure that the risk of any newly derived nerve cells morphing into tumors had been all but eliminated. He drew some liquid from the vial and injected his elixir — set to grow into oligodendrocytes, which help ferry movement-generating electric impulses into muscles — into the spines of the recently paralyzed rats. Then an assistant grabbed a camera. The resulting video was short, but its meaning was unmistakable: The rats stood up and wobbly walked. The clip went viral and the public cheered. But many of Keirstead’s colleagues were less sanguine. Was the science right? they wondered. He hadn’t even published a paper on it yet. As early as this spring, we’ll begin to find out.

Pending one final review, next year a handful of paralyzed men and women are set to get Keirstead’s high-purity stem cells injected directly into their spinal cords, above and below the injury site. Conducted by the Geron Corporation — to whom Keirstead turned over his research — it will be the first-ever test of purified stem cells in humans. Again, the public is mesmerized by what could happen, and again, Keirstead’s colleagues are nervous. If the phase-one trial exacerbates a subject’s condition or, far worse, kills one, Keirstead’s test won’t just fail, it could retard progress on stem cells for decades. He is in effect taking the first major step on stem cells for everyone. And he’s doing it with a novel therapy that has a shorter paper trail than most.

Aware of the stakes, the FDA temporarily put the brakes on the trial in August, weeks before it was originally set to begin, so it could rereview the data. But Keirstead is unfazed. He has confidence in his work. The trial application Geron submitted was the longest ever — twenty-two thousand pages — all pointing toward the success and efficacy of Keirstead’s method. He feels certain the trial will go forward. “My guess is that the FDA got new supporting data that is very interesting and they just need time to vet it.”

But Keirstead says he doesn’t have time to wait. And neither do the infants born with spinal muscular atrophy, a genetic mutation that often kills within twelve months of birth. He has already moved on to securing FDA approval for what would be the world’s second clinical trial of human embryonic stem cells to test a different stem-cell-derived nerve cell — the motor neuron — on infants with SMA. This go-round, he wants to increase velocity. No dribbling out a paper here and there and waiting for his colleagues’ comments. “This motor-neuron story, not a single publication out on it yet, but I’m going to the FDA!” trills Keirstead, forty-two. “I did everything at once this time: I did a manufacturing facility. I formulated the clinical plan, gathering all the medical doctors. I did the preclinical efficacy, preclinical safety, lined it all up side by side, moved it all forward.” Sure, he has a handful of papers on his motor-neuron story in review, but those are almost an afterthought. Cures don’t come from pushing paperwork."

To all of you that have helped with Georgia's Journey of Hope we are grateful. Thank you to all of you that joined in The Unite for the Cure campaign. Our family has raised approximately $6000.00 for the research project and as of last night the Uniters had raised over $70 000.00 Congratulations to all of the people that are making this happen. There are still other groups of people around here doing different things and raising money. Whether you donate to FSMAC or Unite for the Cure you are donating to HOPE and that should feel good. So many babies and children are waiting for that cure.

There is also a final push to get the SMA petition signed. If you can think of anybody that hasn't signed it please consider forwarding the information and asking them to sign. We really are close!

Next post will be about what's been happening around here.

Love to you all,

Kristen

Monday, November 9, 2009

Sunshine

October ended up being a long, dark and emotionally draining month. With the arrival of November and some much needed sunshine the clouds seem to be lifting a bit. Last week somebody asked me how I was doing and I replied the typical, "Good thanks." For a minute I was actually shocked to realize that I meant it. I felt really good at that moment.

We have stayed busy with the normal everyday routines and spending time with family and friends. This past weekend we took the girls to the zoo and we all had a blast. Calla absolutely loved watching the arctic foxes bounce around and Maya was fascinated by the camels lying down sleeping. That was probably the most animals we've ever seen up and around. I guess the fall weather is nice for them.

With the warm weather we were also able to get some yardwork done. I had given up on the garden back in October but we had a chance to 'put it to bed' over the weekend. We even found some more surprise carrots which Calla ate like candy!

With the uplift in mood I am hoping to get back to blogging a bit more. Friday of last week marked the date that Georgia has been dead longer than she was alive. Mike and I had approached the day with dread but surprisingly it meant very little to us. She continues to be alive as ever in our hearts and we will continue to honour her as we always have.




Love to you all,

Kristen

Saturday, October 31, 2009

Halloween Fun

Trick or treating has just started to slow down. The girls have been home for over an hour. They ran around with some of our neighbors for about 45 minutes before calling it quits. I'm actually glad as it means less candy to deal with!

The girls have been in costume since Wenesday morning. It started with preschool and gymnastics and then carried on with kindergarten, dance and finally the big day. Maya was dressed as Belle (Beauty and the Beast) up until this afternoon when she decided that she wanted to wear something warmer. Can't say that I blame her. Good thing that we have a couple of fuzzy unicorn costumes kicking around. Calla was dressed as Tinkerbell with a long blond hair piece just for fun!



This year we let the girls each decorate their own pumpkins with sticker kits and then Mike carved the biggest pumpkin. Thanks for all the pumkins Auntie Joan and Uncle Allan. We also made Halloween cookies (pumpkins and ghosts). Calla looked at me this evening as she was getting dressed up and said, "Mommy, I've waited all year for this! It finally happening!" So nice to hear such enthusiasm.


Calla's is the cat and Maya's is the princess.

Love to you all,

Kristen

Wednesday, October 28, 2009

The Paradox

I haven't felt much like writing lately. We have been quite busy. I was actually out of town all weekend on a shopping trip in Minneapolis. It's always nice to get away but always nicer to get home. The countless cloudy days and the hoopla over H1N1 seem to be affecting people's moods. I can't tell you how many people have told me that they just want to sleep all the time. I think that we all need a little sunshine around here.

I wasn't planning on writing tonight as I have very little to say. Apparently those cloudy days and all the hoopla are affecting my mood too. I received an email this morning however that I thought was worth sharing. If you've already read it, then read it again. It's worth thinking about. Enjoy! Thanks Corinne!

"The paradox of our time in history is that we have taller buildings but shorter tempers, wider freeways ,but narrower viewpoints. We spend more, but have less, we buy more, but enjoy less. We have bigger houses and smaller families, more conveniences, but less time. We have more degrees but less sense, more knowledge, but less judgement, more experts, yet more problems, more medicine, but less wellness.

We drink too much, smoke too much, spend too recklessly, laugh too little, drive too fast, get too angry, stay up too late, get up too tired, read too little, watch TV too much, and pray too seldom. We have multiplied our possessions, but reduced our values. We talk too much, love too seldom, and hate too often.

We've learned how to make a living, but not a life. We've added years to life not life to years. We've been all the way to the moon and back, but have trouble crossing the street to meet a new neighbour. We conquered outer space but not inner space. We've done larger things, but not better things.

We've cleaned up the air, but polluted the soul. We've conquered the atom, but not our prejudice. We write more, but learn less. We plan more, but accomplish less. We've learned to rush, but not to wait. We build more computers to hold more information, to produce more copies than ever, but we communicate less and less.

These are the times of fast foods and slow digestion, big men and small character, steep profits and shallow relationships. These are the days of two incomes but more divorce, fancier houses, but broken homes. These are days of quick trips, disposable diapers, throwaway morality, one night stands, overweight bodies, and pills that do everything from cheer, to quiet, to kill...

AND ALWAYS REMEMBER:

Life is not measured by the number of breaths we take, but by the moments that take our breath away."

George Carlin

Love to you all,

Kristen

Wednesday, October 21, 2009

6 months

The last couple of days have been a time of reflection. If I asked some of you what you could accomplish in 6 months I bet that you could come up with some pretty fantastic ideas. I haven't accomplished anything fantastic since losing Georgia but I have learned quite a bit.

For example, I have learned that I'm not a half bad writer. People actually read this blog sometimes because they want to hear what I've written. I'm not sure if it's the topic or the way that I write. It really doesn't matter, it's just something that I have learned about myself.

I have come to believe that I will truly see an end to the disease that stole the life of my daughter. Not only will I live to witness it but I will be able to say that I worked alongside countless others to make it happen. When people ask me if we have had the girls tested (as carriers) I always reply in the negative. It will be their choice but I really believe that it will never be necessary. SMA will no longer exist when they are of child bearing age.

People sometimes ask me how I am doing? They ask me if it gets any better? In the six months since losing Georgia I can tell you that the pain is no longer a sharp, take your breath away kind of pain. It has become a constant dull pain that still occasionally takes my breath away. It now allows me to be happy but it has stolen my ability to become excited. It lets me enjoy my children's laughter but it also leaves me craving silence.

In the 6 months since losing Georgia I have learned that I will live the rest of my life with a broken heart. Dont' get me wrong, I do believe that one day it will be healed. My reality however is that it won't be healed until I have breathed my last breath and my heart has stopped beating.

Calla and Maya still talk about their baby sister all of the time. They make reference to missing her and we all say good night to her every night. When Calla draws pictures of her family there are always 5 people. This tells me that in 6 months I have done something right. Despite having a child die 6 months ago all of our members remain intact. Despite not being able to see one of us we remain a unified whole.

In the 6 months since losing Georgia I have learned that the only way to live is to open ourselves up to all that life has to offer, even when it's awful. For all of us that chose to live in our perfect little worlds where children don't die and everybody is always happy, we aren't truly living. We are only pretending.

Love to you all,

Kristen

Monday, October 19, 2009

Charity Fair

This weekend Mike and I took the girls along with a whole bunch of friends to the IBM Skateathon and Charity Fair. Mike was asked if he wanted to set up a table with the others for FSMAC. The girls had a great time running around with their friends playing games, winning prizes and getting their faces painted of course. They even got air brushed tattoos that they think are the coolest things ever!

Mike and I took turns sitting at our table. Nobody was interested in the charities however. People just came to skate at the MTS Centre and have fun with their kids. In the end we did bring in another $100.00 and my mom brought in around $90.00 selling her Norwex products (all profits to FSMAC). We did manage to educate quite a few people about SMA as well as Unite for the Cure. So, in the end I guess it wasn't a waste of time but next year we may just bring the girls and have fun, skipping the whole table thing.

Mike reminded me that it just goes to show what a great event Georgia's Journey of Hope was. If you haven't seen the site it proudly mentions that we brought in $9554.00 that day. That doesn't include some of the last minute ticket money and donations. In the end, we probably raised over $9700.00! We are quite proud of what we started and look forward to making it bigger and better next year.

We also have sent a cheque to Unite for the Cure for $3500 Canadian which means that we will have reached our goal! Thank you to all of you that have supported us. If you are still considering donating please don't let that stop you. Other families have raised way more than the $5000 goal.

Love to you all,

Kristen

Monday, October 12, 2009

At least...

Since losing Georgia, I can't tell you how many times I have heard the expression, "Well... at least you have the other two." I have learned to simply smile whenever I hear this comment. Of course I am grateful for Calla and Maya but that doesn't mean that there isn't a huge void left in all of our lives. This weekend however,as we are supposed to be focusing on being thankful I have never appreciated my girls as much.

On Tuesday, just before I went to bed I went to feed my very old fish. He was lying at the bottom of his bowl dead. I just looked at Mike anxious to get that long day over and said. "Well, the fish is dead. I just want this day to end." I was already feeling quite bitter given that Georgie wasn't around for her birthday and the dead fish was like adding insult to injury.

We left the fish in the bowl until the next day because we wanted Calla and Maya to see it and understand what had happened. As I listened to Mike gently explaining to our girls that the fish had died I was still feeling bitter. It was a long week! Maya immediately got very excited upon hearing the news. Calla was smiling too. They both started going on about how great it was that the fish had died on Georgia's birthday because she must have wanted one for her birthday. "And, now she has one forever!", said Maya. Well, I couldn't help but smile after that.

Adn then, after several months of below normal temperatures followed by a gorgeous September the weather decided to go back to below normal temperatures. On Friday night it was snowing! The leaves have just started to change colors here and it was snowing like crazy. The next morning the ground was covered. I was horrified and my girls were thrilled! They couldn't wait to get out there. Our neighbor's little girl even woke her parents up already wearing her snow pants!

As disgusted as I was, we all spent a very fun morning outside playing in the snow. Calla wishes that it could be winter all year long! By afternoon most of the snow had melted but it remains quite cold here. Even as this week has been a long one I can actually smile and say to myself, "Well at least I have the other two!"

Thank you Calla and Maya. You fill our days with joy and sunshine even when it's snowing outside. Happy Thanksgiving!









Love to you all,

Kristen

Thursday, October 8, 2009

A Mother's Job

From the moment a woman knows that she is pregnant (at least under positive circumstances) her body does this amazing job of keeping that baby alive. The baby receives all of the nutrients it needs to grow bigger and stronger from day to day and it remains protected until it is ready to enter the world. If a mother hasn't already figured it out she very quickly realizes that her main job is to keep this amazing little being alive.

In the early days life revolves around making sure that the baby is fed, comfortable and gaining weight. As time goes on we struggle to make sure our little ones are stimulated... that they learn about the world, that they become independent and that with any luck they take with them some of the morals that we've tried to instill. While all of these things are important, the minute that we are hit with a crisis a mother, or a father for that matter realizes that their most important job as a parent is to keep that child safe, in other words to keep that child alive.

So this has been a hard week for me. Georgia not being here to celebrate her first birthday is a reminder that I as her mother have failed. Don't get me wrong I think that I did a lot of things right by her and know that I couldn't stop myself from failing but essentially that is exactly what has happened. I have failed to keep my child alive through no fault of my own. This is something that is very hard to wrap your head around. I'm sure that most of you reading this are thinking about how you are going to write to me and tell me about how I didn't fail. Nobody likes to fail and we all like to think that if we didn't have any control over it then we couldn't have failed. I disagree.

While none of us like the idea of failure, it can often set us down a path that we had never considered. It may save us from even bigger mistakes that we could make down the line. It could change our lives in such a profound way that it could be described as nothing but a gift.

I may have failed to keep my baby alive but I am now following a path that will make me a more compassionate human being. I now have goals that will allow me to say that I will never fail my daughter again. While I would take Georgie back in an instant, it is her arrival and even more so her departure that has been my gift. What happened this past Saturday was only the beginning. It was the laying down of a foundation to building something that will be great and beyond what many of us can imagine. I can now tell you that the final total will be even greater than what I previously estimated! : ) In honoring Georgia's birthday, I have not failed.

"Making your mark on the world is hard. If it were easy, everybody would do it. But it's not. It takes patience, it takes commitment, and it comes with plenty of failure along the way. The real test is not whether you avoid this failure, because you won't. it's whether you let it harden or shame you into inaction, or whether you learn from it; whether you choose to persevere." Barack Obama

Thank you to all of you that sent messages. Thank you to all of you for respecting our need for privacy and quiet as we have gone through this most difficult week. The journey that we are travelling is difficult but we remain grateful to all of you.

Love to you all,

Kristen

Tuesday, October 6, 2009

Birthday Girl



Happy Birthday Sweet Angel! We miss you so much!

Monday, October 5, 2009

Arrival


I felt the first twinges of labour just after the girls went to bed. I wasn't really surprised. The midwive had said afterall, "Tonight's the night!" After two sleepless nights due to strong contractions I felt ready. I was more than ready. Still, there was absolutely nothing going on as I finished supper at my parents' that night. Around 9:00 the contractions started to become regular and I started to believe my midwife. At some point I sent Mike to bed telling him to try to get at least an hour of sleep.

By 11:00 the fear started to creep in. Despite having done this two times previously my mind had forgotten the pain. With every contraction there was a new sense of panic. "How can I deliver this baby at home? I can't even get through the initial contractions!" "What if the pain becomes too much and I need an epidural?" Ridiculous, looking back. Mike came back down around 11:30 and realized that I was indeed in real labor.

We called the midwife around midnight and she arrived shortly thereafter along with another one shortly after that. By the time they arrived my emotions were under control. My feelings were the only thing that I could control and I had figured out how to do just that. I was calm. In fact, I even told the midwives what time to expect my water to break. I actually walked into my bathroom two contractions before it broke knowing that it was imminent. I told everyone in the room that night that Georgia would be born some time after 4:00.

The pushing took me by surprise. Maya had practically jumped out and I expected Georgie to do just that. This time the baby didn't want to come nearly as fast. I look back now and wonder if The Brave Little Soul was having second thoughts. Did she know that her life would be so short? Did she know that once she left my body and had to start breathing on her own, her days were numbered? Of course, I knew none of this at the time and only wanted her out.

She arrived angrily at 4:15 am on the 6th. I wasn't surprised by her anger because I had been joking for the last several days that she didn't want to come out. She was quite happy where she had been. I now understand why. She was beautiful and perfect. She eventually calmed down and actually ended up being the calmest of our 3 babies.

Eventually the midwives packed up and moved out just before Calla and Maya got out of bed. They walked in just after 7:00 to meet their gorgeous baby sister.

Missing you tonight Georgie.

Love to you all,

Kristen

Saturday, October 3, 2009

Georgia's Journey of Hope 2009

I thought that Georgia was going to be born on the third. 3 has always been my lucky number and I thought that it would be appropriate for my third child to be born on October 3rd. I even had contractions bad enough for several hours that we called the midwife. The contractions eventually eased up and spaced out. Georgia would not make her appearance for 3 more days.

It seems appropriate however that something big was meant to happen on the 3rd day of October. Perhaps my sixth sense was just off by a year. Today a community came together. There was no official head count but you definitely showed me that a bigger venue will be at the top of the list for next year! Many of you seemed surprised by the numbers. I can't say that I was. I realized a while back that Georgia's Journey of Hope was going to be bigger than I had originally thought.

When I first booked the hall I marched in telling myself that if I could make $1000.00 that I would be proud of myself. Surely $1000.00 could help make a difference and after all we are still reeling from the loss of Georgia. As preparations got under way the fundraiser seemed to take on an energy all unto itself. Many of you threw yourselves into it as if Georgie had been yours. All of you will never know how much it means to me to know that you continue to love our "Georgie Baby". She was always everyone's baby!

The initial counts taken home from the hall are over $7000.00. This does not include some cash donations as well as ticket and t-shirt money that Mike and I have already collected. Some people still have money to hand in. It will take a few days to get it all sorted by I am estimating we brought in approximately $8000.00!

I don't have a lot of pictures. I am expecting more and will post some of them as I receive them. For now please enjoy these.



This is Kristen. Our balloon maker extrodinare. She sat there for 4 hours doing balloon animals, flowers, hats etc

Here's Ginette painting Maya's face!



Here's my brother Kevin sitting at the Unite for the Cure Table with the amazing chocolate suckers that Tanya made. They say things like 'unite', 'hope' and 'Georgia'.

Here's Mike on the big bouncy slide. The kids loved this thing! Thank goodness that it fit. Thank you Funquest!!


I had an army of volunteers help me make today possible. Please know that I am grateful to each and everyone of you for sharing yourself with me. Thank you as well to all of our amazing sponsors and to all of you that came and had a great time.



At the end of the day as my friend Nat and I sat there alone waiting for the attendant to come and check everything out, a single pink balloon came floating down from the ceiling. It kind of danced around with the air currents as if saying, "Look at me!" I couldn't help but scoop up the one lone balloon and take it home. The signs that my daughter gives me are sometimes so obvious. I'd like to think that this time she was simply saying, "Thank you".


Love to you all,

Kristen

I got a feeling...

I gotta feeling that today’s gonna be a good
that today's gonna be a good day
that todays gonna be a good good day ooh hoo (x4)
Black Eyed Peas
Sing it! You know that you want to.
Love to you all,
Kristen

Friday, October 2, 2009

3...2...1...

We have been working hard the last couple of days getting all of the details worked out for tomorrow. I spent last night and this afternoon helping to organize and wrap the prizes. In the end we have 24 prize packages. I can't believe how many people have donated! It is really overwhelming. Mike's nanny had a beautiful memorial quilt made as one of the prizes. I prefer to call it a hope quilt. It has pink ribbons on it that say things like 'faith' and 'hope'. It is absolutely beautiful. We've also had many people just handing us ticket money without taking tickets claiming that they can't come but still want to support what we're doing. Thank you!

I have no doubt that Georgia's Journey of Hope will be a success. If you live in the area please consider coming. Georgia's Journey is as much about Gwendolyn, Nicholas, Dakin, Sophia and so many others as it is about her. It represents a community of people coming together not just to honor one little girl's birthday but to honor the lives of so many children lost to and living with SMA. It is at its very core love in action.

Love to you all,

Kristen

Tuesday, September 29, 2009

Tainted

Today it was 0 degrees as the girls and I walked to school. Had we tried to drive the car that was parked on the front street we would have had to scrape off all of the frost. With the change in weather comes a change in wardrobe. Away go the shorts, sandals and sun dresses and out come the long pants, socks and gloves. I have always believed that the clothes one wears can affect the way one feels but I have had quite the shock over the last couple of days.

As I started looking at some of my long sleeve tops and sweaters I was immediately overcome by feelings of helplessness and desperation. One look at my long sleeve purple shirt and I can see the doctor confirming Georgia's SMA diagnosis. As I glanced down at my shoes today, for a few moments I was speed walking through the halls of the hospital in a state of panic instead of leisurely walking through the grocery store with Maya.

I pulled out my gloves this morning but didn't put them on because all I could think of was driving home from the hospital in a snow storm to have dinner with the girls already panicking about how I was going to get back. My clothes are all tainted. They are tainted with the most negative feelings on earth. While these are feelings that I lived and accepted they are not feelings that I wish to carry with me every minute of every day.

I have one t-shirt and when I put it on I am empowered. I am hopeful. I am a mother who has accepted the unacceptable. I am a woman with the courage to carry on and fight for others. This one shirt represents everything that I want to be and everything that I believe I can become. It doesn't carry invisible memories of Georgie, instead it shows them off to the world. It says that I am a warrior and invites others to join the fight. It links me to some of the most amazing people I have ever had honor of knowing, even when I don't really know them.

My clothes are tainted but my heart remains pure. Sitting around helpless and feeling desperate will change nothing and one shirt isn't going to get me through the winter. It's time to change my clothes. I hope that Mike doesn't mind when I tell him that I have some major shopping to do! : )

Love to you all,

Kristen

Sunday, September 27, 2009

A Dinner Party

My friend Renelle is an amazingly creative, kind and generous human being. I am only just getting to know her. Her little boy went to school with Calla last year and she is actually married to somebody that I went to high school with but our friendship is rather young. Despite this fact, Renelle is constantly surprising me.

This past Friday Renelle invited a dozen of her girlfriends over for a dinner party. She had volunteered to provide all of the food and had asked her friends to make donations to Unite for the Cure as if they were going out to a restaurant. In the end, some of the others chipped in with food and such but that didn't seem to put a damper on the donations. In the end, this group of women raised $880.00 in one evening! One mother had challenged some of the other mothers to consider donating part of their child tax benefit. The card that we have been given signed by the women who attended the event said this, "A small thing done in great LOVE is a great thing." I couldn't agree with you more ladies!

Thank you Renelle, Melony, Joyce, Thiea, Gerry, Cheryl, Michelle, Jaclyn, Michelle, Nicole, Tricia, Nicole, Tamara, Courtney and Nikki.

Did I mention that Renelle's husband Todd along with his friend Andy (another old friend from high school) built two children's picnic tables for the prize draw on Saturday?! How's that for generosity!

On a side note, for those of you still in denial that Fall is here check out the picture below:


If you look carefully you should see some of the hundreds of geese that were hanging out on our front street this morning.
Love to you all,
Kristen

Saturday, September 26, 2009

Cinnamon Buns Changing the World

Yesterday, my friend Krista took 50 of my mom's homemade cinnamon buns and a bunch of awareness ribbons and brought them into her work. She asked $1.50 per cinnamon bun and$1.00 a ribbon. She arrived here yesterday with $174.00 for Unite for the Cure. Wow! Krista told me that the ladies in her office were pretty excited and I'm thinking that they must have been! Thank you so much Krista and all of the men and women who supported our effort. Thanks of course, to my mom who made all of the cinnamon buns from scratch. They will be available at the fundraiser next weekend as well.

One more week! We look forward to seeing you all there!

Love to you all,

Kristen

Thursday, September 24, 2009

Coming Together

The last week has been quite tiring but things are definitely coming together for Georgia's Journey of Hope. Ticket sales are quite good and the t-shirt sales have been great. I feel the need to clarify some of the information on the t-shirts. The toddler sizes come in pink and blue. There are also youth and adult sizes in a variety of colors. I have ordered a few more ladies long sleeve tops in chocolate brown because several people have been asking about them. The toddler and youth shirts are being sold for $15, the adult shirts are being sold for $20 while the long sleeve shirts are being sold for $25. All proceeds are being donated to Unite for the Cure.

I haven't been doing much blogging lately as there aren't enough minutes in the day to get everything done. Calla came down with a bad cold a couple of days ago. For someone in perfect health this would be no big deal but she is asthmatic. We spent a lot of the night before last up with her working on her breathing. We avoided the emergency room and today she was feeling much better. The thought of taking her into Emergency actually had me sick to the stomach. It has never been a bad experience with Calla. In the past she has received a ventolin treatment and then we have left. The last time I was there however, I was with Georgia. Watching Calla struggling to breathe has always been difficult but now I find it torture.

I let her go to school today because she did seem significantly better and it was picture day but I had my cell phone next to me at all times. I even debated calling the school at one point to ask how she was. Wow! I really am starting to feel crazy! Did I mention that the school is across the street?! Can't really get much closer!

It has been another long day and despite the fact that there is more fundraising stuff to do and there is a load of laundry waiting to be folded, I think that I may take a break and watch Grey's Anatomy. The PVR is all set up and it is my favorite show! In fact, it's kind of the only show that I really watch. I'm kind of excited now!

Love to you all,

Kristen


Monday, September 21, 2009

The Littlest Big Girl

Not so long ago my mom, also known as Grandma had two girls. They were originally referred to as her little girl and her baby girl. That was until the baby didn't want to be called a baby anymore and the little girl insisted on on being called a big girl. This worked out okay for Grandma because she was blessed with yet another girl that she referred to as her baby girl. Somewhere along the way however the little girl no longer wanted to be referred to as being little and Grandma had to improvise. The little girl is now called the littlest big girl.

Today the littlest big girl started her first day at pre-school. She proved that indeed she was a big girl as she ran off to the painting centre and waved good-bye to mommy without a second thought. It was mommy who shed the tears out in the parking lot. The littlest big girl was off to school and the baby girl had disappeared 5 months ago. Mommy was left alone. And, while mommy was so proud of the littlest big girl and so happy that she was able to run and to learn with her friends she couldn't help but wonder why she was left alone...



So proud of you Maya! Your smile always melts my heart!
Love to you all,
Kristen

Saturday, September 19, 2009

Birthday Party

Today we celebrated Parks' 4th birthday. Truthfully, we don't know Parks, his mom Jenn and his dad Keith that well. We have met them through close friends and see them a few times a year at birthday parties and get-togethers. They do live in the same neighborhood so sometimes we see them at the park or out walking. We were very touched however, when they invited us to join them today as they had asked all of their guests to make donations to either The Children's Hospital or directly to Mike and me for Unite for the Cure. Parks didn't seem fazed at all by the lack of presents. He was too busy jumping in the bouncer and throwing water balloons! Everyone had a great time on one of the last beautiful days of summer.

Thank you so much Keith and Jenn and most especially to Parks. What a big boy to give up presents on behalf of others! Here are a couple of pictures!


Calla and Maya about to climb into the bouncer.


There's Mike taking one for the team. He was soaked by the time the kids were finished with him! : )

Love to you all,

Kristen

Thursday, September 17, 2009

Check them out!

Today I went down to pick up the t-shirts to raise money for Unite for the Cure and must say that I am quite impressed. Thank you so much to Eli and the amazing staff at Special T Shirt Company. They were so kind and helpful and tried to offer a discount wherever possible. They also posted the petition flyer in their staff room and many of them signed it. The following pictures aren't the greatest but I wanted everyone to kind of get an idea of what they look like.



I found a couple of cute models to show them off. They are actually quite big. Calla is wearing a 4T and Maya is wearing a 2T.





Here's my t-shirt...long sleeves for the long cold winter!

I now have the t-shirts ready to sell. I have already pulled out the ones that some of you ordered and I will make arrangements to get them to you soon. Thanks for all of your support.

Love to you all,

Kristen

Wednesday, September 16, 2009

Trash the Dress

On Sunday my friend Tanya Lynn and her friend Carrie Ekosky, both photographers got seven gorgeous women together in their wedding dresses for "Trash the Dress". They spent some time in the Exchange district and then some time down on Bird's Hill Beach. Please take the time to read Tanya's blog about this amazing day. http://www.tanyalynnphotography.blogspot.com The group raised over $1000.00 and all proceeds are being donated! Thank you Tanya. Thank you Carrie. And, thank you to all seven women that took part in this very special day. Georgie's eyes would have been almost as huge as her smile as she watched all of you let go of those pink balloons!

Love to you all,

Kristen

Tuesday, September 15, 2009

Inspired

I didn't really feel like writing tonight but I came online to check on the other families via their blogs and was inspired. I only write when I feel like it and lately I don't often feel like it...mostly because I don't have a lot of time to sit down and reflect. I checked on the Unite for the Cure site and another family included the following quote in their reasons for accepting the challenge:

“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.” — Margaret Mead

Ahhh...

Remember my club? I believe that I said something about not underestimating our power. I asked you all to help us fight instead of watching helplessly from the sidelines and so many of you are stepping up. I also read the Daily Dakin about a little boy who continues to fight. His mother has decided that before she takes her last breath she will see this disease eradicated. I wrote back to her in agreement. I actually decided that quite some time ago. SMA will be eradicated and all of you will have been a part of that.

If you still have some doubts regarding the importance of the stem cell trials down in California then please spend some time reading some of the blogs I follow. So many families are still fighting with their little ones and they deserve a fighting chance. These children deserve to sit up, crawl, walk, eat, breathe and swallow on their own. These children deserve to not only celebrate their birthdays but blow out their own candles!

Our family total for Unite for the Cure stands at $1800.00 right now. That does not include the $400.00 that we made on the weekend. Thank you to all of you that have helped to make that happen. There are many more ideas being thrown around and put into action. I have no doubt that we will raise the $5000 nor that my club will raise the $100 000. Georgie would definitely approve of what we have done.

Love to you all,

Kristen

Sunday, September 13, 2009

First Day


On Friday we walked Calla to school for her first day of kindergarten. She seemed quite nervous upon arriving but followed her teacher into the school without a fuss. When I picked her up a few hours later she came bouncing out talking non-stop about all of the things that she had done and asking when she could go back. Having Calla feel happy and secure has never seemed more important to us. We are so thrilled that she had a great first day!

Maya missed her big sister but seemed quite excited for Calla and can't wait to go to pre-school in another week.

There she goes!

Love to you all,

Kristen

Saturday, September 12, 2009

The Garage Sale

Well. after lots of help from family and friends we joined our community today and had a garage sale. Thank you to all of you yet again that donated items, helped me get organized, showed up ready to buy or just to smile. Thank you especially to my mom who stood at the Unite for the Cure table for 7 hours telling complete strangers why it is so important. Even I don't have the energy for that!

In the end we raised $895.00 for pediatric palliative care in the city and $405.00 for Unite for the Cure. That's $1300.00! Not bad for a day's work. Thanks for the cinnamon buns mom, the chocolates Abby and Natalie and the ribbons Tanya.

Once again we find ourselves overwhelmed by your generosity and kindness. We continue to find our spirits uplifted by all of your support. I'm too tired to write more tonight. I plan on relaxing in front of the television with Mike and a glass of wine. Tomorrow I'll post about Calla's big day.

Love to you all,

Kristen

Thursday, September 10, 2009

Housekeeping

I have been letting my entries slip the last couple weeks. My apologies but I have become quite busy. Mike and I have been getting things ready for Georgia's Journey of Hope, the garage sale, Unite for the Cure as well as balancing all of the everyday activites like work, grocery shopping and back to school. Firstly, I want to draw your attention to the right side of our blog where you will now find a link to the fundraiser website. It remains a work in progress and we would love to have any suggestions or feedback about making it better. I plan on spending some time on it after the garage sale.

The flyer announcing the fundraiser should be ready by the end of today. All volunteers will receive a copy via email but if anybody else would like one please contact me. I am still in need of a few volunteers to help with facepainting so if anyone is interested please let me know.

I also wanted to send a big thank you to a few people. Thank you to Carol and Colin Rogers for their generous donation to Unite for the Cure. Thank you to Abby and Natalie Rich for making chocolates to sell at the garage sale. Thank you to Tanya Francis who is working on awareness ribbons to be sold at the garage sale and the fundraiser. Thank you to all of you that have offered and dropped off stuff to be sold and to all of you that are coming at different times to help me get organized. I don't know what I would do without all of you.

Before signing off I just wanted to say to Sue, "The Outlander series is one of my favorite series ever written. I have read the first three books several times and I rarely read a book more than once. Did you know that there is a new book coming out on the 22nd? I won't be touching it until October 4th!" : )



Love to you all,

Kristen

PS Calla starts school tomorrow. Stay tuned for pictures!

Monday, September 7, 2009

Let the Light Shine

Since losing Georgia I have stopped dismissing every coincidence in my life as just that. Sure, I still believe in coincidences but I am often surprised by how the right person, the right book, the right situation etc. will just present itself when I need it most. The other day we received our monthly flyer from the local pizzeria and I was surprised to see that she had included the following passage:

Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves, Who am I to be brilliant, gorgeous, talented, fabulous? Actually, who are you not to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It's not just in some of us; it's in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.

I have had many moments since April 21st where I would love to have hidden under the blankets and shrunk down until people stopped noticing me, but who am I to do that? There are still moments where I would love to just make myself invisible and sneak away unnoticed but I know that is not what I am meant to do. It is not who I am meant to be. I have been given a gift, many gifts actually but the one that I am referring to right now is the one that will have the greatest impact on the rest of my life.

Georgia's life and death has set my life's journey down a new path. A path that is filled with possibilities despite the many twists and turns along the way. It is up to me as her mother to help let her light shine. One of the ways that I do this is by reaching out to others to help me find ways of honouring her. October 3rd will be just one event in a continuous string of ideas and events that we will continue to remind people of the light that she brought with her. In doing so I have been liberated from fears and am learning to shine on my own.

I have no choice but to adopt this tactict you see because I will never just 'fit in' again. I am now the woman that lost the child. I am the woman that people recognize as 'the one that lost that baby'. I know that I am many other things to many people but I also understand how many people see me first. I will never just 'fit in' again. And so the question when one is left to stand alone is, "Do I shy away and try to make myself invisible or... do I rise up...face my fears head on...and let the light shine?"

Love to you all,

Kristen



Friday, September 4, 2009

The Meeting

Thank you to everyone who came to the meeting last night. I think that it went really well and am confident that Georgia's Journey of Hope will be a big success. Several of the volunteers took tickets to sell to family, friends and coworkers. If you would like some tickets to sell please let me know. Please note that you don't need to have a ticket to get in the door. You can just pay the $5.00 entrance fee as you arrive.

My ever so creative and generous friend Tanya(the one who made the bracelets) also came up with the brilliant idea to have awareness ribbons made up. They are hot pink and say,'unite for Georgia' on one end and 'cure SMA' on the other. Thank you yet again Tanya. I have shared this idea with the Strongs and am sure that it will be passed along to all of the uniters.

Another big thank you to Rita for her generous donation for "Unite for the Cure". I have managed to personally put $1700 down towards our goal. I will continue to update all of you.

Next weekend is the big garage sale. Several people have started dropping items off at our house. If you are interested in donating some of your stuff to Pediatric Palliative Care here in Winnpeg please let me know. The girls will be selling lollipops for Unite for the Cure! : )

Am I busy? You betcha! Am I happy? Alot of the time. I am energized, confident and most importantly hopeful! Thank you for helping me get here.

Love to you all,

Kristen

Wednesday, September 2, 2009

Escape

I have always been an avid reader, well at least from the age of 7. Ask me what I would take to a deserted island and books would be at the top of my list. I'll read almost anything as long as it has a strong story line and well developed characters. Since Georgia's death I have been unable to read the way I used to. Sure I can concentrate for a little while and read the lines but there hasn't been any stories that have grabbed my attention and made me want to read. In fact, there are several books that I have attempted to read since April 21st that lay unfinished in different spots around my house. They are a constant reminder of what I am no longer able to do.

While on holidays however I picked up a new book. It was actually on the couch at Mike's dad's house when I walked in. I had heard lots about it but it didn't sound interesting to me in the least. While I love love stories vampires aren't really my thing and why would I want to read something originally intended for teenagers anyway? So I read the first chapter... and then I read the second. I was surprised that it had piqued my interest. I decided to buy the book (the original was on its way back to Vancouver). I started reading it every night as I waited for the girls to fall asleep while we were away. All of a sudden I found myself thinking about the story at different times of the day and looking forward to 'bedtime'.

By the time that we were driving home I decided that I had better pick up the next book before I finished the first. This lead to a near panic attack as I ran down the aisles of Superstore in Medicine Hat on a Sunday night hoping that they had it. : ) I nearly broke out in a sweat when I had the third book in my hands but couldn't find the second. Eventually, I found it and nearly skipped back to Mike and the girls. After that I was hooked!

Why am I telling you all of this? Because I finally found an escape again. I am sure that psychologists would have a field day with a grieving mother finding escape in the ideas of immortality but I don't care. In the last two weeks I have found a way to totally and completely relax. When I am immersed in the world of Bella Swan and Edward Cullen I can shut out the rest of the world, at least for a little while. For those precious few minutes, sometimes hours the grief is gone.

I am sure that I could list several reasons as to why I love the story but here are just a couple. If you're a psychologist have fun!
Edward Cullen has become something that he never chose to become and certainly never wanted to become. Despite his circumstances he chooses to live a life that is full of love, compassion and empathy. This is a conscious choice on his part and something that he struggles with throughout the story. He and his family are loyal each other and will do whatever it takes to protect each other.
The heroine, Bella is portrayed as somewhat lost and often confused but again bases all of her decisions on selfless love. She refuses to be afraid even in the most dire circumstances. I like these ideas and in the end I loved the story.

The Twilight series was my first escape. I don't think that I'll have another one for quite a while. I don't even plan on picking up a book for at least a month! I am optimistic however that when the time is right I will find an escape yet again. Something that will allow me to feel refreshed and re-energized.

Love to you all,

Kristen

PS The movie sucks compared to the books!!

Monday, August 31, 2009

Block Party




Meet Mark.



Mark had the brilliant idea to organize a block party this year. He actually had the idea last year but we are all too late to jump on it. This year he and some of the other neighbors got organized early enough and we all had a blast on Saturday evening. There was music, a bouncer, face paint, sidewalk chalk and lots of food and drink. Our street isn't a very big one - only ten houses on each side. Even so I still couldn't have told you the name of half of the families on the street before Saturday. I think this has something to do with all of the time we spend indoors during our long winters!

At the block party they had a 50/50 draw and gave half of their earnings to Mike and me for SMA. Thank you to all of our generous neighbors. We will be putting it towards our goal of $5000 for Unite for the Cure. The 50/50 draw along with some generous family members are allowing me to donate $1200 in the next couple of days! Thank you so much. I also want to say thank you to Renelle for hosting a dinner party and asking her guests to donate to our cause as if they were going to a restaurant. Great idea Renelle, you're always so creative and generous.

Here are a couple pics from the block party. Enjoy!







Love to you all,

Kristen

Thursday, August 27, 2009

Reminder

Just wanted to remind everyone that one week tonight is the volunteer meeting at my house. It will be at 7:00. Please come with a paper, a pen and your ideas. If you don't have my address please contact me.

Love to you all,

Kristen

Wednesday, August 26, 2009

Worry

It has been brought to my attention that some of you may be worried about me being in over my head. Some of you are concerned that I may let this whole fundraising thing consume me. My only response to this is, of course I'm in over my head. I've been in over my head since March 16th. Of course I am consumed. Georgia was my baby and she is dead. She was not one of my grandparents or even one of my parents. You won't hear me singing "The Circle of Life" anytime soon. I helped to create her and felt her grow and move within me. She came forth from my body and left it in my arms! Of course I am consumed!

I am not consumed to the point however that I am letting fundraising take over other important parts of my life. My girls are well cared for and happy. Today I played "My Little Ponies" with them and took them swimming with friends. I also had dinner with my family and went to the gym. I am super busy at the moment but my family remains my priority, all of its members.

I am not staying busy to avoid the pain of losing Georgia. The pain remains. I carry it with me every second of every day. I talk about her daily and think about her constantly. Of course I smile and laugh because life remains joyful even with the pain. I will never be the same person that I was before Georgie. I believe myself to be a better person now even though the smiles and laughter don't come quite as easily.

A few months before Georgie became ill I was reading one of Eckhart Tolle's books and one of the things that stuck with me was that he says that worrying is an absolute waste of time. It serves no purpose whatsoever. No purpose because it changes nothing. I found this idea very liberating. I believe that it is only action that can change things. And so I have chosen to take action even if that means I am in over my head. Even if that means others worry about me. Please stop.

Love to you all,

Kristen

Tuesday, August 25, 2009

Home!

We arrived home last night around 6:30 and guess what had finally showed up.

That's right! The stargazers have finally decided to make an appearance. While my garden was way too mucky to really spend any time in it, I also spotted some cucumbers as big as they are at the grocery store! I think that I may actually have a real garden!



In the 26 hours that I have been home I have managed to do a few things besides laundry and unpacking. I contacted one place and they have offered to donate the bouncer and a cotton candy machine. I'll let you all know once it has all been confirmed. Thank you Jaime! I have also contacted a t-shirt place that wants to help me. I have been thinking that I will have t-shirts made up that say "Georgia's Journey of Hope" and have her foot prints transferred onto them. I am considering selling them for $15.00 for kids and $20.00 for adults. That would mean that approximately $7-$11 from each t-shirt would be donated to Unite for a Cure. At this point I am just wondering if anyone would actually be interested. I'm not asking you to commit to buying anything, only trying to estimate how many to order. If you are interested please let me know.

Today the girls and I spent the afternoon and evening soaking up the sunshine. Before signing off I thought that I would share some pictures from our holiday. Thanks again to our family and friends who put us up, had us for meals or just hung out with us. We had a blast! And Carol, the girls have been carrying their Cabbage Patch Dolls everywhere!


























Love to you all,



Kristen

Saturday, August 22, 2009

Here We Go!

Alright, it seems to be all set up. Have you done any thinking? Have you come up with any creative ideas? As mentioned in the previous post I have signed up to help raise $5000 to help fund the trials down in California. Yes, a cure really is that close! Are you in? Do you want to help? If you would like to make a donation please go to www.uniteforthecure.com and click on "donate". You can use your credit card or send in a cheque. If you are donating because I am asking you to then I ask that you include Georgia's name. For all of my non-American readers I don't think that we'll be qualifying for tax receipts but think about what you are doing. Better yet, think about who you are helping!

Georgie died four months ago today. That's 122 days. She has placed me on a path that I never imagined exploring and yet I continue to do so even when I have no idea where I'm going. She has brought out the best in me and shown me that I am capable of all kinds of things. When I first heard about the Unite For the Cure I couldn't sleep. I wasn't sure that I would be able to raise the $5000 but I knew that I had to try. I refuse to be haunted by the memory of my baby. I refuse to tell the Strong's that I won't try because I'm not sure that I can do it. If somebody had said that to me when Georgie was still breathing I think that I would have 'clocked' them. So once again I am asking you to join me. Fight with me! We couldn't save Georgie but we can save so many others!

At the moment I am coming up with some ideas of useful and or edible things to sell to raise some of the money. Please share any ideas that you may have.

Love to you all,

Kristen

Wednesday, August 19, 2009

Something Bigger

Have you ever felt like you wanted to be a part of something that is bigger than yourself? Have you ever felt like you could be doing more but you're not sure what? Well, the Strong's have put out a challenge asking us all to do more and I have accepted. In a nutshell, the very promising stem cell trials down in California are lacking funding. The Strong's are asking 20 families affected by SMA to raise $5000 each raising a total of $100 000. This money will help to bridge the funding gap to come up with $500 000. Let me make this clear. Mike and I don't have $5000 just lying around to hand over. In fact, when I first read the post on www.gwendolynstrong.com I felt uncomfortable. I feel a little bit like I am being pushed outside of my comfort zone and taking on a challenge that I'm not sure how to complete.

Georgia's Journey of Hope on October 3rd has commited itself to donating all proceeds to FSMAC. I promise you that this will be a very affordable and family friendly event. Mike and I are eating the cost of the fundraiser so every penny you spend that day will be donated directly to FSMAC. You'll get food, fun, fellowship and a chance to win great prizes. That sounds good right! Now I'm asking you to push past your comfort zone.

As I have stated Mike and I do not have $5000 just lying around. Truthfully, we could probably come up with the money but I am hoping that you will want to help us. I am asking you to think outside the box and be creative. Would you consider donating you coffee money to the cause? What about some of your lunch money? Would you consider selling some of your children's clothing or toys and donate the money to help save a child from the same fate as our Georgie? What about asking some of your coworkers for a toonie towards a cure?

Now many of you are uncomfortable. I don't blame you. Asking people for money is hard. Giving away money without getting a tax receipt is hard for some people too. To all of you I say this...How uncomfortable do you think it feels to hear a doctor pronounce a death sentence on your child? How uncomfortable do you think it is to watch as their muscles slowly weaken to the point that they are paralyzed and need help breathing? How uncomfortable do you think it is to hold your baby in your arms as they take their last breath? How uncomfortable do you think it is to watch a pretty little pink casket get lowered into the earth?

Now, how uncomfortable do think it is to look into your dying daughter's eyes and know that $500 000 is all that stands between life and death. What would you do? If you're still at a loss then look into Georgie's eyes. I have no doubt that she will inspire you.

I am asking you to join us. I don't want you giving money that you can't afford or are giving in annoyance. I want you to become part of something bigger, to do something more.

I am still working on the details with Victoria Strong. More information to follow. Please just think about it.

Love to you all,

Kristen

PS The mountains are beautiful!

Friday, August 14, 2009

Packing

We arrived in Black Diamond just outside of Calgary late this afternoon. The girls are great travellers but the DVD player really does help!! Thanks Kelly. Barbie and the Diamond Castle and 12 Dancing Princesses have never been such a relief. We have spent the evening catching up with Mike's family, Trish, Bob and Joan. Tomorrow we're off to stay with Bruce and Emma for a couple of days before heading up to the mountains.

Packing for this trip ended up being way too easy physically and way too hard mentally. The girls now being 5 and 3 don't require much beyond changes of clothes and a few toys. Last summer when I was thinking about doing this trip I was imagining all of the gear that would be required. That is one of the reasons that we ended up buying the van. Now the van is kind of like a thorn in my side. It really isn't needed and stands as a reminder to what we don't have.

My youngest child now resides in a place that doesn't require strollers, car seats, and diapers. She no longer needs bottles, formula and a playpen. We didn't have to do any extra stops to "feed the baby" or "change a diaper". Instead our 13 hour ride was quiet for the most part besides the "How much longer?" I'd love to say that it felt great but it didn't. The tears fell as we left the city. Our family trip is definitely missing someone.

Missing you Georgie,

Love to you all,

Kristen

Wednesday, August 12, 2009

The Norwex Party

Thank you to all that came out to the Norwex party last night. At last count my mom's commission was over $300.00 which will all be donated to FSMAC. The orders are still rolling in however so if you wish to place and order please contact her. She is donating all of her commission until the end of summer. Because I hosted the party I also got quite a bit of free stuff and most of it will be thrown into the prizes for the raffles at Georgia's Journey of Hope.

On to other news. My friend Tanya Lynn is hosting a Trash the Dress event. Tanya is a very talented photographer, the same one that I mentioned in my last post. She and a friend are arranging the event. Anyone interested would meet to get their hair and make up done and then put on their old wedding dresses. The photographers will be snapping pictures in The Exchange District as well as Bird's Hill on the beach. If I can find my gown and fit into it Tanya count me in! Tanya and her friend Carrie are donating all of the proceeds to FSMAC in Georgia's name. Come on! Doesn't this sound like fun? Please visit http://tanyalynnphotography.blogspot.com for more information.

We're off to Calgary in the morning but I will continue posting and checking emails. Before leaving I wanted to share some pics of the girls having fun over the last couple of weeks.


Love to you all,

Kristen