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

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

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

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

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

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

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

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

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

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