SMA Awareness

I have been meaning to sit down and write for over two weeks now but just haven't managed to do it. August is SMA awareness month and I feel like I should have a lot to say but have been struggling. It's been 2 years and almost 4 months since we lost Georgia. Most of the time I feel at peace and know that I should be counting my blessings. I know that I am so lucky to have three beautiful and healthy girls here with me and I know that most people can tell that we as a family are doing well.

That doesn't change the fact however, that my beautiful blue -eyed daughter lies in a fluffy pink casket below the earth's surface over by the fountain. It doesn't change the fact that there is a continual void in our family and that Calla and Maya don't miss their sister. Every time I hear a little girl being called Georgia or Lily I turn my head and stare. How is it that they got to keep theirs?

The truth is that I am at peace with the loss of Georgia but I can't stand knowing that there are so many children out there struggling for every breath that they take. I hate knowing that there are so many parents living in a constant state of anxiety wondering what's next and will there be a tomorrow? Phrases like., "We know that Gwendolyn is deteriorating." "Lucy can no longer bring her hands up to her face." And, "Today we had to say good- bye..." make me want to help and yet at the same time feel so helpless. I know that these families know pain like no others. I know that they struggle with almost everything that they do. That is why raising awareness about SMA is so important.

Aria is almost 15 months old. She runs around now. She dances and screams at the top of her lungs. She has mastered climbing onto the coffee table and the back of the couch. She even likes to climb into the rocking chair and rock it standing up. She laughs at me when I say, "Danger!" I marvel at her physical ability and her zest for life. Georgia too had a zest for life, and so do so many of these kids. Right now we can only dare to dream that one day they too will be climbing a coffee table or dancing around.

I will be running my first 10k this weekend in honor of all of these SMA kiddos and families. Georgia's Journey of Hope will take place on Sunday October 2nd, at Glenwood Community Centre. I am now starting the call for volunteers.

Oh yes, I know that I am lucky but I am also dedicated to helping raise awareness about SMA. Will you?

Love to you all,

Kristen

Because I Can

After Georgia died my life seemed to be a nightmare and like any normal human being I felt the urge to run away. Running away of course, really wasn't an option. While I wanted to run from the pain, anger and hurt, I didn't want to run away from my family. So, I did the next best thing. I jumped onto a treadmill and somewhere along the way I started to feel better.

I have never been to see a therapist, nor have I ever taken antidepressents. I am one of the lucky few that found a different drug of choice - running. Running has never been easy for me. Those of you that have followed my story the last couple of years know how true this is. I have only ever really run a couple miles at a time. Often it's just enough time to clear my head and fill me with positive energy for the next couple of days. Being pregnant for a fourth time, breast feeding and getting up several times a night left me with little more energy.

In my cyber world, I have met people who have done all kinds of amazing things. Bill Strong is about to run his first marathon, just having completed his first half marathon. This on top of working full time and caring for a three year old with SMA. Then there's Stephen Taylor. He just ran 100 miles AGAIN! There's also Magda. Magda came up with the slogan - "We run for those who can't" The slogan that Stephen Taylor, Magda and one hundred others wore back in March as they ran the New Bedford half marathon. They are already planning to do it again next year.

Magda has also launched a challenge to to make this the best July ever by coming up with three big goals - a fitness, a nutrition and a spiritual goal. There is a group of us online that have all signed up and people regularly post about what they're up to. Now my fitness goal had nothing to do with running (it was core strength) but last week as I read an article I came up with another one. The article was posted by somebody else in the group and the message that stuck with me was that most of us will spend more energy thinking about the things that we'd like to be able to do instead of actually making them happen. Hmmmm...

So, I signed up to run a 10k in August. I know, I know it's not a marathon or even a half marathon but it's going to leave me empowered!! I have asked and received permission to wear the slogan, "We run for those who can't" and am going to have a few t'shirts made up with GJH's logo. I am hoping that a few others will want to join me or want a t shirt even if they are just running for fun. But, I have learned something else this month.

For the first time in over two years I am O.K. I am no longer afraid to stand on my own two feet. Even if I am the only person who ever wears one of those shirts and gets out there to run I will be just fine. I will always be in good company as I know that my reasons for running are good. I run not just in memory of Georgia but in memory of so many others. I also run for those little people still fighting.

Two years ago I wanted to run away from a nightmare but I now realize that you can never run away from a nightmare. The only way to ever feel better is to wake up. I am finally doing just that. I have set a goal and I will run simply because I can.

If you'd like to join me please let me know. You won't believe how good it feels to run for others. : )

Love to you all,

Kristen

This is Our Maya

5 years ago today, at just after 6 a.m. Mike and I welcomed our second daughter into the world. My labor had gone so smoothly that Mike was encouraged to 'glove up' and 'catch her'. I remember how her hair was a dark auburn color and when I later placed her in the basinette she kept turning right up onto her side to stare at me. : )

At 5 Maya can of course write her name and recognizes most of her letters. She loves to play dress up and will often change her clothes several times a day. She notices if I wear different shoes, earrings, necklace etc. Too bad for her, her mommy is kind of boring and could wear the same things every day! She loves to have her nails painted and her hair curled. If I allowed it she'd be wearing make up every day. She is truly my little girl.

This past spring Maya took up soccer for the first time. She loves to play goalie and will chase after the ball but isn't a very aggressive player. At a few of the games she has stopped to chat with some of her friends on opposite teams. "What are you doing here?" One time she spent most of her shift trying to get her friend's attention to point out that they had matching shin guards and socks! LOL This is our Maya.

Maya is a very sweet little girl with a big heart. She often senses people's emotions before most adults. If somebody falls down on the soccer field she often stands there waiting for them to get up - even while the play is still going on. Maya is an amazing big sister. She watches over Aria like a true Mother Hen. She is my second set of eyes and I don't know what I would do without her. Maya is also a great little sister to Calla, always waiting for her to come home and play.

Maya had lots of friends and I think that it's because she is so kind hearted and excited about life. Yes, she still suffers from anxiety, sometimes at the most awkward moments, but her spirit continues to be bright and shiny. This is our Maya!

Ready for the party!

She wanted the enchanted castle cake. Sorry that it's sideways!


The Prairie Fairy came to her party this year. That's why she is wearing her fairy wings and skirt.

Here we are just hanging out after our dinner at Boston Pizza. Maya's choice, of course!!

Love to you all,

Kristen

Almost 5

In two sleeps Maya will be turning 5. I decided to seize the opportunity and ask her a few questions about herself. Thanks Tammy for the great idea!! Here's what she had to say.

How old are you Maya? 4

Soon you'll be? 5

What's your favorite color? purple

Are you excited to start kindergarten? Yes!

What to do you think you'll do there? Mmmm..Make trees.

What's your favorite thing to wear? A Dress. (I definitely thought she'd say a bathing suit!)

Who are some of your friends? Addy, Mia, Kai, Maggie, Bella, Macy, Ruby, Hannah, Eva...

What your favorite meal? Kraft Dinner

What's your favorite snack? Lollipops

What's your favorte restaurant? Boston Pizza

What's your favorite drink? Apple Juice

What's your favorite book? Sadie the Ballerina and My Little Pony

What's your favorite toy? Barbies

What's your favorite game to play? Old Maid

What's your favorite board game? Chicky Boom

What do you want to do when you grow up? Be a Pet Veterinarian

What's your favorite animal? Bunny!!... Koala, monkey, puppy kitty

Are you afraid of anything? NO!

Not even the dark? Mmmmm...

What's your favorite sport? Soccer

What's your favorite place to visit? Grand Forks!!!

What the best part of Grand Forks? The WATER SLIDES!

Who's your favorite person? Calla.

What's your favorite t.v. show? Wild Kratts and The Peter Pan show

What's your favorite movie? Honey, I Shrunk the Kids.

What's your favorite thing to do in summer? play in the pool, sprinkler, slip n slide and go to the beach.

Is there anything that you want to learn how to do? Yes. Swim.

So...Maya apparently loves the water and wants to learn to swim but refuses to do lessons. Sigh. Hopefully, year 5 will be the year to learn!

Love to you all,

Kristen

My Dad

Top 10 Things That I Have Received From My Dad

10. The need for sunscreen because of my pale skin.

9. The ability to sleep in the middle of the day! : )

8. My temper - a long fuse but then we blow!

7. The ability to 'just walk away.'

6. My love of travelling.

5. My love of languages.

4. My ability to cook!! Oops! That one definitely belongs to MOM. : )

3. The ability to put family first - that one belongs to both of them.

2. The belief that it will be better in the morning - after a good night sleep.

1. My sense of humour!

Love ya Dad! Happy Father's Day!

Kristen

Dancing Queens

It's been almost a couple of weeks, but on the 24th Calla and Maya both danced in their year end recital. Maya was a monkey and Calla danced to the music of Kung Fu Panda. Both of their routines were super cute and it's so fun to watch how much they have learned. Calla is practically a veteran dancing at the concert hall but this was only Maya's second time. Mike and I both had tears in our eyes when we talked about Maya's performance later that night.

We both think that it takes a lot of courage to get up in front of hundreds of people and perform and we're never sure how Maya will react. This year however, Maya was a performer! We caught another glimpse of that toddler we had so long ago. She was confident. She was smiling. She was having a blast! There was no sign of our shy and anxious little girl.

After the show when we went back to congratulate the girls Maya immediately cast her eyes down and started to whine. She can't handle compliments. Calla received her congrats with a big smile and several thank yous. I wish that we had recorded the performances but it remains ingrained forever in my mind. Maya continues to give us glimpses of who she will become and we continue to hope that she will thrive alongside her sisters. She loves to dance and it seems to bring out the best in both of our girls. For that we are grateful. : )


There was also a very pleasant and humbling surprise. Two of the hip hop classes taught by Miss Carmelle raised money through their 'Just Believe' t-shirts in memory of Georgia. Our family recieved a cheque for FSMAC for $215.00 and we had no idea that it was happening! Wow!! If you'd like more information about the Just Believe World organization please click here. According to their website 'just believe is optimism. just believe is hope. just believe is ambition. just believe is change. just believe is love...' We are so thankful to all of the dancers and teachers involved.

Love to you all,

Kristen

One!

Aria Evangeline...a song bearing good news. Your name is so appropriate and yet it was the hardest to choose. We wanted you to understand how wanted you were, how loved you were and always would be. We wanted your name to represent who you are to us and so, it is Aria Evangeline. Did you know that I wanted your middle name to be Joy? I just knew that you would bring us so much of that. I also wanted your middle name to be Hope. The moment that I found out I was carrying you, that is what you meant to me. You are all of these things to us and we feel so blessed to have you in our lives.

We celebrated your first birthday with a big party yesterday and a smaller one today. So many people came to join us! In lieu of gifts we requested donations to Children's Hospital. I knew that you wouldn't mind. Of course, you still received a few presents. A lot of people just can't resist, not that I blame them.

Here you are digging something out from one of your birthday bags.


Here you are with your Winnie the Pooh birthday cake. I didn't know what to pick for you because you don't have any favorite toys. Next year you'll be able to tell me! You certainly don't look very impressed in this picture.

You weren't really sure about the cake. You really liked smooshing it between your fingers but didn't want to eat it. Oh well. You sure looked cute!!

Now you are sleeping up in your bed. I can't wait to see what another year brings.

Love to you all,

Kristen

Ready

Tomorrow we will be celebrating Aria's first birthday. It's actually on Sunday but we decided to start the partying one day early. I have been getting organized all week as we are expecting quite a few people. We were hoping to be barbecuing in the backyard but the forecast is calling for rain. Nobody around here seems surprised. It's kind of become the expectation for May long weekend. It was cloudy and raining last year when I went into labor too. Hard to believe it's been a year.

Aria is on the verge of walking. She can stand up and keep her balance almost anywhere and will take a step or two. She realizes that she gets around faster by crawling so that is still her preferred mode of transportation. When she is outside however she bear walks. I don't think that she likes the feeling of the grass and the concrete on her knees! Can't say that I blame her.

Aria has a few words including, mum, dada, hi, bye and bread. Yes, 'bread'. She is her father's daughter after all. : )

So I am ready to celebrate my daughter's first birthday. It was a day that I never thought I'd celebrate again. I had hoped Georgia would make it until her first birthday but that of course, didn't happen. I truly believe that Georgie had a hand in sending Aria here to us. She is so much like Georgia and yet so different. While I grieve all of the missed milestones with Georgia, I am so excited to mark this one with Aria.

We will release some balloons for Georgie but I have no doubt that she will be here celebrating with us. I am ready!!

Love to you all,

Kristen

Lucky Daughter

I have an amazing mom. She is generous beyond words, ready to drop whatever she is doing to go out and help another individual. She canvasses for diabetes and cancer. She volunteers through her church and other organizations. She loves to feed people. She has us over for dinner twice a week. I'm pretty sure that she doesn't enjoy cooking so much as she just enjoys her family. She also pops in a couple times a week just to say 'hi', drop something off or give me a 'break.' She bakes the most delicious cinnamon buns ever! She gives the best hugs ever! She is compassionate and warm always wanting to help.

My mom has more energy than most people I have ever met. Several years ago she thought that she would take up running and within a couple of months she ran a half marathon. Keep in mind that she was already at least 50 by then. : ) She still runs for fun but she also swims, does zumba and weights. She was taking yoga but gave that up this session because she was a little bit busy. LOL

When I was little my mom stayed home to raise us and took in some of the neighborhood kids to help make ends meet. Living on one income means having to make sacrifices. When I look back, I had no idea that we didn't have a lot of money. Our house was full of joy and love and sibling rivalry. : ) We had home cooked meals almost all of the time and always sat down at the table as a family.

When my brother and I were both in school full time my mom went back to school herself and earned a college degree. I can't imagine how exhausting that must have been. She was still cooking all of those meals and baking those cinnamon buns. I also don't think that I'd have the courage to go back to school at this stage in my life but I admire my mother for showing me that it can be done.

I'm pretty sure that the most important thing that my mom has taught me besides making my family a priority is to just be myself. I am so lucky to have such a good mother. These lyrics often remind me of my mom.

......
I've got a good mother,
and her voice is what keeps me here.

Feet on ground,
Heart in hand,
Facing forward,
Be yourself. Jan Arden

Happy Mother's Day Mom! You're the best!!

Love Kristen

Lucky Mom

I know that I am lucky despite the fact that I have lost a child. I try to count my blessings every day and continually remind myself what is important. I am far from perfect and sometimes get caught up in the little things. Sometimes I feel overwhelmed and frustrated. I sigh when Maya asks for another band aid, Calla still isn't ready or Aria is up yet again.

What I find amazing however, is that these little beings really do appreciate every thing I do. How do I know this? Well, they aren't always saying thank you, or putting their toys away. No. They don't remember to bring their dishes to the counter or throw their clothes in the hamper. No. They certainly don't eat the meals I prepare every day without complaining. No. Half the time they don't even remember to flush! : ) How do I know?

Well, it's the way their faces light up when they see me after only being apart for an hour. It's the way that they reach for my hand when they are unsure or bury their face in my shoulder. It's the way that they blow me kisses and say good night at least ten times. It's the way that they look to me for reassurance and guidance. It's the way they repeat what I say to others (not always in the most flattering way). They will ask me if I am happy, angry or sad. They will hug me and throw themselves at me sometimes when I least expect it. They love me just as much as I love them.

Calla came home on Friday instructing me not to look in her bag. She had a surprise for Mother's Day. Later on after she had removed the surprise I went through her stuff. I found a paper entitled 'Six Thing I love about You!' I asked her if it was part of her surprise. "Nope", she said. "You can read it now!" I tried to take a picture of it to post but the glare from the camera kept washing it out so I am retyping it here. [edit: I've scanned it so you can look at the message in Calla's printing below... -Mike]

Six Thing I Love about You!

I Love the way You cook. I Love wen you cook pasta. I Love how you bake me short bread cookies. I Love You. I love how you hug me and kiss me every day. I love that you are my mom because I Love you and you are the best mom in the world!
Love Calla

See... Three beautiful girls here on earth and one in Heaven watching over all of us. I am a lucky mom to be so loved.

Love to you all,

Kristen