Snow Days!

Well, it seems like everybody has had a pretty good taste of winter this year. The East coast has been pummeled and even the southern states have had their share of snow. We got dumped on again this past Friday morning. It takes a lot to shut down our city and so far there have been no snow days this year. There was one day where school buses weren't running because it was -45 but other than that Winnipegers are just expected to keep going.

We have been staying pretty busy around here. Last week Calla lost her second tooth. I actually haven't taken a picture of her yet because it happened right before bed and I keep forgetting. The tooth fairy came to visit yet again. I don't know if Calla is more excited by the money or the note that she left. : )

Maya, Aria and I were busy running to and from school and gymnastics as well as a couple of playdates. Friday we made it to dance but I shoveled the driveway on the way out and then again on the way back. Mike then shoveled it again when he got home. It was crazy! All the snow makes it fun for Mike and the girls to go snowshoeing. They all really like it and I am hoping to give it a try before the snow melts. The way that it just keeps coming I'm pretty sure that I have a couple more months...an early spring would be nice though.

Here are a couple of pictures. They are taken on our front street.




Love to you all,

Kristen

Blind

Two years ago, as the end of January approached I was excited. Georgia was almost that magical age of four months where she'd be able to jump around in her jolly jumper and play in her exersaucer. Granted, I had already noticed that she was quite weak but I kept hoping that as February 6th arrived, the exact date that she'd be four months I could place her in that exersaucer and she would play happily.

The memory of Georgia in that exersaucer will haunt me forever. At some point, I did place her in it and of course, she flopped over like a rag doll. The alarm bells were ringing like sirens at that point and I started to panic. When I think about this time it's still hard for me not to feel angry. How could I have been so blind? How did I not see that a hideous disease was ravaging my child's body? Was I stupid?

Oh sure, I can still come up with a dozen excuses. I was busy with three kids under the age of five. Georgia had had a string of bad colds and wasn't feeling well. There was no history of anything in our family. Every child develops differently etc. The truth is however that I was totally and completely blind.

Now, I did love Georgia fiercely. I loved her from the moment that I knew I was carrying her. I felt like she was my gift, my third and most precious child. My lucky number 3. She would complete our family. She was born at home. She was perfect and beautiful. She slept like a champ! In fact, when she was only a couple weeks old I remember telling a stranger that I had never been so impatient to see my baby smile. I just wanted her to feel how much we all loved her. I wanted her to be happy.

Even though she was calm, I held Georgia more than the others. I just always wanted to have her close to me. All of my decisions regarding Georgia's care were out of love (Thank you Devon for reminding me of this). I took her to the hospital out of love and I brought her home because I loved her. I sang to her, rocked her, changed her and in the end held her because I loved her. I needed her to know even in her last moments here on earth that she was loved.

The more that I reflect, the more that I learn about myself and the more I accept. For whatever reason I wasn't meant to see SMA until I did. Even when I look back at pictures I don't see SMA. I only see Georgia. When I look at other children with the same condition I still don't see SMA. I don't see the masks and the equipment. I see only beauty and perfection.

I have come to a new understanding about myself and my life with Georgia. Of course I was blind. I was blinded by love! A love so strong and pure that SMA and even death cannot touch.

Love to you all,

Kristen

8 Months

Yes, it's hard to believe but yesterday marked 8 months that we have had Aria here with us. As mentioned in my previous post, she is now babbling. I really can't express how the sound of her babbling has brought so much joy into our house. It is such a happy sound and we all love hearing it!

Aria still prefers eating her 'orange' food and despite my best efforts the greens aren't going down! She has recently started eating baby rice crackers and I think that we'll probably try a few more finger foods in the next month.

If I leave the room Aria will often come looking for me. When I run her bath at night she will often crawl into the bathroom with a big smile on her face. She loves her bathtime. : ) She can also go from lying down to sitting up on her own. Truthfully, I don't remember Calla and Maya doing that at all.

Aria also loves to be part of the action. If the girls are playing something then she wants to be a part of it, especially when daddy is involved. She LOVES the monster game the best! Yesterday, I took her upstairs to nurse her and she heard Mike say something in his monster voice to the girls. She immediately sat up wide eyed and tried to throw herself out of my lap. She would have crawled straight out the door had I not taken her. As it was she was kicking her feet and waving her arms in excitement. I can't believe how much my baby wants to be kid!!



We continue to enjoy every moment that we have with our little one and are so grateful for her presence.

Love to you all,

Kristen

Winter Blahs!

Well, on Tuesday morning we woke up to temperatures in the -forties! This isn't really unusual for Winnipeg but it still sucks! Today we woke up to the same but yesterday I walked Calla to school in the morning because it was a balmy -36! LOL Calla is unaffected by the cold. In fact, she has a hard time understanding why she isn't allowed to play outside. Maya on the other hand, seems to be having a rough time. There has been lots of whining and crying on her part the last couple of weeks.

We had been considering a winter holiday and haven't ruled it out just yet but we aren't sure that this is the best year. Aria is now quite mobile and she isn't going to understand that she has to be still for a 5-6 hour flight. Also, she still isn't really sleeping very well and I don't want to make things worse. If the weather keeps up however, I'm not going to worry about it.

With the cold and Aria not sleeping I am still feeling quite tired. A wise person recently told me that it really is okay for me to feel tired and that I should just give myself some time. I am trying to do just that. I have actually upped my running but am giving myself permission to not get everything done every day. I mean really, as long as we're all fed, clothed and happy I think that we'll survive! : )

On a positive note Aria has started babbling. She is almost 8 months so it's rather late developmentally. I actually thought that she was just going to be one of those kids that didn't babble. I'm so glad that she is because I think that it's the cutest thing. I mean really, if you can't wake up to morning sunshine and the birds singing, a baby babbling is truly awesome!!

Love to you all,

Kristen

Walk On

Every once in a while somebody will send me a message thanking me for sharing my grief so publicly. They'll often send me notes expressing how nice it is for someone to say what so many of us are feeling and thinking but don't usually share. This got me to thinking about why that is. Why is it so shameful to openly grieve in our society? Why are so many of us uncomfortable not just with the idea of death but with the idea of publicly demonstrating how much it hurts when we lose someone we love? Don't get me wrong, I am not any better with it.

I'm sure that many of you that have read this blog from day one feel like I have expressed my feelings openly but the truth is that my posts are often edited for audience purposes. Meaning, that I'll often write exactly how I am feeling, then realize that it's too raw and start tweaking it so that it doesn't sound as harsh. I haven't done this in a long time but in the beginning I did it a lot.

Most people won't see me cry when talking about Georgia. This isn't because it doesn't happen but because even I am uncomfortable crying in front of others...even though my child died. I have actually stood stoically by as some of my friends have cried. That could just be a personality thing but I think that our society plays a part in it too.

I am no better than anyone else when it comes to comforting someone that is hurting. I often struggle for words and am afraid that I'll say the wrong thing. I do know however, that often the best thing to do is just to be quiet and listen. Yes. Shutting up is often the best approach!! : )

For those of you that wonder I still struggle every day. Deep breaths, running, writing, praying, singing, playing etc. All of these things help but some days can be really long, especially at this time of year. Tonight on the treadmill as I was running and waiting for that high I played a song that is guaranteed to bring it. The lyrics to Walk On often move me even when I feel stuck. I never have enough breath to sing the words (that and I can't sing AT ALL) but I will try to say them aloud as I run. The power of song is amazing! So for all of you still hurting, find a song that moves you, that lifts you up, that makes you feel something, ANYTHING and walk on.

And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Walk on, walk on
What you got they can’t steal it
No they can’t even feel it
Walk on, walk on...
Stay safe tonight

............

And I know it aches
And your heart it breaks
And you can only take so much
Walk on, walk on

U2 - All That You Can't Leave Behind

Love to you all,

Kristen

Tired

I haven't been feeling much like writing lately. Mostly because I am just tired. Not tired of writing or anything like that. Just plain physically exhausted, doggone tired. Aria spent the first four months of her life sleeping like a champ but the last few months she has started waking more and more often. There have been nights in the last few weeks where we have been up ten times or more. I don't really want to complain or look for sympathy here. I know how blessed I am to have a beautiful happy baby and I know that it is EASY to wake up and tend to a healthy one.

When Georgie was sick I lived on very little sleep. I knew that her time here was limited and so I spent every second I could with her. When I did sleep I was constantly aware of the hum of the oxygen, the beeps of the bipap and kangaroo pump etc. If she made the tiniest little peep I would jump up and make sure that she was okay. I was in a constant state of adrenaline. Sleep was an escape when it actually happened. The worst part however, was that upon waking I always realized that my life was actually the nightmare and there was no escaping it.

Mike and I will both admit that Aria is totally spoiled with love. The girls and us cannot get enough of her. She almost never cries because there is always somebody there ready to see to her needs including at night. Waking up with Aria however, has started to wear on me. I wake up exhausted and have very little energy. The cold weather doesn't help much either. I have had had thrush so many times that I have lost count - always when I am super tired. I hardly ever feel like running because if I do have the time I just want to lie down.

Back in September as we started spending less time outside Aria started fighting her naps. She seemed to always be awake. I could lay her down awake and she would play, fuss, cry in her bed for over an hour. Sometimes she would fall asleep for 5-20 minutes and then she would be up and ready to play. There was nothing I could do to get her back to sleep, including leaving her alone. Sometimes she would fall asleep in the car or while I was nursing her but that never lasted longer than 40 minutes. Eventually, this lead to more nighttime waking.

Now Aria is my fourth child and I have read many books on how to get babies to sleep. Calla didn't sleep at all for the the first 6 months of her life. Poor little thing was always crying. Remember Shannon? Eventually, I managed to start getting her to sleep and she remains a great sleeper to this day. Maya went through a phase of wakefulness but we survived that too. Aria is just different. They're all different!

The last few nights with Aria have been better and I am hoping that we are on the upswing. I can handle getting up once or twice a night but any more than that leaves me feeling less than adequate. We have just started getting back into a regular routine with Calla and Maya so hopefully I can help Aria to find one that works for everyone. She remains a happy and active baby. I can't believe how much she has grown and how much she can do. So again, I don't really want to complain or look for sympathy. I am just tired...

Love to you all,

Kristen

PS As I am writing this Aria is pulling on my netbook cord with all her might! : )

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

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)

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

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