Our Logo

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

Love to you all,

Kristen

Once Upon a Time

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

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

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

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

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

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

Join The Journey

End SMA

Love to you all,

Kristen

Crunch Time!

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

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

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

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

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

Love to you all,

Kristen

Coulda, Shoulda, Woulda

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

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

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

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

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

Love to you all,

Kristen

This is SMA

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

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

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

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

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

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

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

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

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

Love to you all,

Kristen

It's a Blog Party!

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

Here are a few facts:

SMA Statistics

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

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

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

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

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

Winston Churchill

Love to you all,

Kristen

The Garage Sale

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

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

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

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

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

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

Love to you all,

Kristen

Catching Up

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

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

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

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

Love to you all,

Kristen

The Truck

When a parent receives a terminal diagnosis for their child, you may as well hit them with a truck...literally. All of the air seems to leave your body and you are left disoriented and hurting. The diagnosis is just that however, a word, a prediction of what will probably happen. A parent will most likely take some deep breaths shake off the disorientation and keep moving. Their child needs them and so they step up to the plate.

When your child takes their last breath however the truck hits you again. This time it slams you right in the chest leaving you struggling to breathe and wondering why you would even want to. Your body seems to ache all over and you have a hard time deciphering what is real. Everything seems surreal, as if you are truly walking in a nightmare. You just want to wake up and live happily ever after.

Peeling yourself off of the pavement is no easy task. Oh sure, you can read books about it, talk to experts and even take meds. It still isn't easy. It can take weeks, months even years. There is no timeline. It took me a long time to peel myself up off the pavement, to become a mother and wife again. As the weeks went on, I found myself seeing clearly. Breathing didn't hurt so badly and I knew all of the reasons that I wanted to keep it up.

I have accepted the loss of my daughter. I have learned to smile when I talk about her instead of crying my eyes out. I have found ways to keep her memory alive. I consider myself a better person since losing her but... I still get hit.

You see. Once you have lost a child, you can peel yourself off the pavement but you can't get off the road. The truck just keeps coming. As time goes by, you can start to expect it at certain times and prepare yourself. But there are still days, moments where the air is suddenly sucked right out of your body and your heart aches terribly.

I choose not to avoid the truck. I let it hit me. Sometimes I even welcome it, help it along. It reminds me that I am alive - that I am only a human. While I put on a smile and explore the world with my three surviving daughters, I am forever a mother that has lost a child.

Love to you all,

Kristen

Betty's Hair Raiser

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

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

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

Love to you all,

Kristen