Aria

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

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

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

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

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

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

Love to you all,

Kristen

We're Back

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

Calla's first day of school.

Maya's first day of school.

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

Reading on the counch.

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

Love to you all,

Kristen

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

Almost 2

Dearest Georgie,

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

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

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

Love Mommy

Georgia's Journey of Hope 2010

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

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

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

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

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

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

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

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

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

End SMA!

Love to you all,

Kristen

Our Logo

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