New Year's

We ended up having our neighbors over for dinner last night. The girls had a blast playing with their friends, eating pizza and helping to design the giant cookie that Calla made. We woke up this morning to frigid temperatures, -26 degrees celcius and with the wind chill it was down in the minus forties! We plan on spending our day indoors today. Sigh... At least we spent quite a bit of time outside last week. The girls are currently 'helping' Mike put together a closet organizer upstairs! : ) The girls just love tobogganing so as soon as it warms up we'll be back outside. Walking up and down the hills is also good exercise for the mommy with a growing belly.

As promised here is the picture of the cookie Calla wanted to make for New Year's.



Happy New Year!

Love to you all,

Kristen

Christmas Pictures

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

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

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

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

Here are a few pictures from the last week.



Oh, the excitement!


The girls admiring their dollhouse from Santa.


Mike helping the kids to release the balloons for Georgia.


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

Love to you all,

Kristen

Merry Christmas to All...

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

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

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

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

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

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

Merry Christmas!

Love to you all,

Kristen

Wish Upon a Star

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

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

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

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

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

Love to you all,

Kristen

The Bump

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

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

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

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

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

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

Love to you all,

Kristen


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

Songs

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

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

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

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

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

Love to you all,

Kristen

Holiday Spirit

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

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

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

Love to you all,

Kristen

Baby Steps

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

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

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

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

Love to you all,

Kristen

7 months

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

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

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

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

Love to you all,

Kristen

SMA Today

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

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

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

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

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

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

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

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

Love to you all,

Kristen