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

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

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

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

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

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

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

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

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

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