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.

Friday, December 31, 2010

Reflection

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

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

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

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

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

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

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

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

Love to you all,

Kristen

Tuesday, December 28, 2010

Palliative Care

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

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

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

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

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

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

Love to you all,

Kristen

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

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

Sunday, December 26, 2010

Christmas




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

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

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

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

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

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

Love to you all,

Kristen

Wednesday, December 22, 2010

7 months

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

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

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


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



Reading stories with daddy.


Maya in the church pageant.


Calla all ready for her school concert.


Aria chewing on her drumstick!


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


Ready to go see Santa. Check out those ears!

Love to you all,

Kristen

Saturday, December 18, 2010

Grief

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

Meet my Friend Grief

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

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

Thanks Emma and Kendra!

Love to you all,

Kristen

Thursday, December 16, 2010

Christmas Busyness

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

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

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

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

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

Love to you all,

Kristen

Tuesday, December 7, 2010

Numbers

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

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

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

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

Love to you all,

Kristen

Wednesday, December 1, 2010

One Step at a Time

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

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

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

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


One more big step!

Love to you all,

Kristen

Tuesday, November 30, 2010

New Video

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

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

Love to you all,

Kristen

Saturday, November 27, 2010

A New Day Has Come

November 27th, 2009

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

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

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

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

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

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

Where it was dark now there's light
Where there was pain now there's joy
Where there was weakness, I found my strength
A new day has come

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

Love to you all,

Kristen






Monday, November 22, 2010

6 months

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


We smile when she smiles, we laugh when she laughs and we rejoice when she cries ever so loudly.
Love to you all,
Kristen

Wednesday, November 17, 2010

Dark Days

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

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

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

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

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

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

Love to you all,

Kristen


Thursday, November 11, 2010

Whispers

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

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

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

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

Love to you all,

Kristen

Friday, November 5, 2010

Holiday Shopping

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

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

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

Love to you all,

Kristen

Tuesday, November 2, 2010

Halloween

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

Here are my little peacock and butterfly just getting out of the van.
Calla and Maya's friends had the exact same costumes which made it extra fun and oh so cute!
We had to make an impromptu stop on the way home because Aria was screaming to be fed. Mike took the girls into Old Navy while I sat in the van with Aria. Calla and Maya thought that it would be fun to pose with the mannequins. Many of the shoppers thought that it was fun too! : )


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


Just before Calla and Maya went trick or treating I managed to snap a few shots of all three girls.
All in all it was a fun weekend. We were all busy but the absence is always felt. I am glad that October is over and that it ended on such a positive note. Oh yeah! My mom's hair raiser is now over $5000 thanks to some generous friends. : )
Love to you all,
Kristen




Sunday, October 31, 2010

Betty's Hair Raiser

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


Here are my mom and our amazing friend and hair dresser Carmen about to get started.
The mohawk actually looked really good on my mom and probably woudn't have attracted a lot of attention so...

Let's throw a little purple in there!

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



A little cuddle with the grandbabies afterwards!


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




Sunday, October 24, 2010

A Nutty Story!

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

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

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

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

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

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

So that's my story.

Love to you all,

Kristen

Sunday, October 17, 2010

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




Friday, October 15, 2010

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































Wednesday, October 6, 2010

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


Tuesday, October 5, 2010

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


Monday, October 4, 2010

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

Saturday, October 2, 2010

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


Friday, October 1, 2010

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


Tuesday, September 28, 2010

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

Tuesday, September 21, 2010

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



Thursday, September 16, 2010

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

Wednesday, September 15, 2010

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

Sunday, September 12, 2010

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

Wednesday, September 8, 2010

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


Wednesday, September 1, 2010

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


Tuesday, August 31, 2010

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

Wednesday, August 25, 2010

3 months

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

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

Lying down with Calla.


Cuddling with Maya.


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


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


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



Wednesday, August 18, 2010

Volunteers Please!

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

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

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

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

Love to you all,

Kristen






Friday, August 13, 2010

The Promise

To Georgia,

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

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

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

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

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

Love to you all,

Kristen

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

Wednesday, August 11, 2010

No Regrets

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

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

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

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

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

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

Love to you all,

Kristen


Tuesday, August 3, 2010

Raising Awareness

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

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

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

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

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

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

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

Cure SMA

Six Years Old

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

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

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

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

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

Love to you all,

Kristen

Sunday, July 25, 2010

The Weight of Aria

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

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

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

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

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

Love to you all,

Kristen