Riding the Coaster

I haven't written much lately. It's not that I haven't wanted to...it just hasn't happened. The reasons for such have become complex and convoluted. I wanted to write a couple of weeks ago and tell everyone how we escaped down to Grand Forks for my birthday (Maya's idea of course). It's amazing how just getting away for a couple of days can relax and rejuvenate someone. I spent the day swimming with the girls and shopping. We went out for supper of course, and I had deep fried cheesecake for dessert. Imagine the calories!!! : ) It was a great day and I didn't cry once. Even the girls noticed that mommy was happy on her birthday this year.

Upon returning home however, Aria developed a chest cold that she is still getting over. There were a few days where Mike and I were both holding our breath praying that we wouldn't have to take her in. We fully understand that she is a healthy baby and does not have SMA but chest colds in babies can turn nasty quickly and we didn't want to have her in hospital.

Thankfully, her cold has gotten much better but she now has a minor ear infection which isn't making anything easier. I keep crossing my fingers that she will wake up better tomorrow. Last night she and I slept for a five hour stretch leaving us both a little more energetic.

I have kept up with my running. The motto continues to be 'Just One Mile' but many days I'll run 2-3 miles. The running seems to be keeping me from sinking but I find myself still struggling. March and April aren't easy months around here. Yesterday, as many of you know I went to register Maya for soccer at the community club. I was feeling really excited for her and was happy that there was no line up. Just as I was leaving I saw some of the parents arriving for the Parent and Twos class. I used to take Maya and Georgia there when Calla was in school. As I stood there I realized that I would have been there again with Georgie and Aria this time (Maya is now in school). It was sudden but not surprising how fast and hard 'the truck' hit. I left feeling completely deflated and sad. Thankfully, it was a busy day and I didn't have a lot of time to feel sorry for myself.

In fact, we spent part of the evening at Calla's school where our perfect little student showed us all of the things that she is working on. Calla remains excited about school and hates to miss a day. She loves her friends and her teacher. Sometimes I refer to her as 'my rock'. Right now, she is just so well adjusted and stable. She truly is an amazing little being. : )

And so the roller coaster continues...

Love to you all,

Kristen

9 Months

Yesterday our little Aria turned nine months old and she is definitely starting to show us what she can do. She now pulls herself up onto just about everything...tables, chairs, window sills, legs etc. In fact, yesterday she somehow pulled herself up against the wall! Today she moved from the window sill to her ball track. If you hold her by the hands she'll start walking and sometimes she'll even try to stand on her own. We are in such big trouble!!!

We took Aria swimming for the first time this past weekend. Maya was absolutely delighted by the number of bathing suits that Aria has. Five - that's right the baby has 5 bathing suits and just went swimming for the first time. LOL In all fairness, 3 of them are hand-me-downs and the other two were gifts. They're all super cute so we have to use all of them! : ) Aria loved the pool. She loved splashing in the water, floating around and watching all of the kids.

Aria continues to babble whenever she's happy. She'll often try to say 'hi' when she sees someone and will wave 'bye bye' when she's in the right mood. She has also started to play strange with people that she doesn't see very often. The best part about this stage is how excited she gets when she sees people that she recognizes. Daddy gets a very enthusiastic welcome when he comes home from work every day.





Love to you all,

Kristen

Just One Mile

So the last couple of weeks have seemed very long to me. Aria cut a couple more teeth which meant that she was up numerous times during the night for several nights in a row. Maya ended up with some kind of flu and we were housebound for a while as well. This almost felt like a blessing because who really wants to be bundling up 3 kids and trudging outside in the freezing cold anyway? But being housebound as many of you know gets old really fast.

The first couple of days that Maya was recovering she spent almost all of her waking moments crying or whining. It was not fun!! I was exhausted from not sleeping, not exercising because I was exhausted and everything started feeling like it was too much. I realized that I didn't really feel like doing anything at all. I was lethargic and grumpy. I didn't feel like getting together with people, going outside, doing the housework etc. I didn't even feel like reading or watching t.v. And then it struck me. That ugly word that nobody likes to think about or say out loud. I was feeling depressed!

I just wanted to curl up and go back to bed. I didn't have the energy for anything. The worst thing about being depressed is that you know that you should just get up and be grateful but you're not physically able to do it. Then you feel guilty on top of everything else which just compounds the problem.

I'm not really sure how I ended up in that state except to say that it crept up on me. I have never loved the winter especially in Winnipeg. The long dark nights and short cold days are draining even at the best of times. Throw in a lack of sleep, a sick kid, some postpartum hormones and it's not hard to start sinking. The one good thing is that since losing Georgia I am hyper aware of my feelings. Having lost a child I know that I will be more prone to depression for the rest of my life. Therefore I pay attention. 'Fake it til you make it' served me really well once but this time it wasn't working and I knew that I just had to force myself to do something...anything.

That's when I decided that I should just run one mile. I tend to run in fits and spurts. I haven't been running as much since the weather got cold for several reasons/excuses. Now, running one mile is actually easy. In fact, most runners would tell you that one mile is nothing. But that is the point. I couldn't convince myself to get up and run because normally I run a lot further than one mile and it can be time consuming. Feeling depressed means that the idea of 'time consuming' or 'hard work' makes it even harder to want to do it. I recognize that, so I told myself that I should just run one mile... just one mile. It would only take about ten minutes and then I could just go back to doing whatever it was that I was doing - nothing.

So I dragged my sorry butt downstairs and hopped on the treadmill. The only expectation I had was to run one mile. I ran my one mile and then gave myself permission to quit. I walked back upstairs and realized that I was in fact feeling better. So the next day while Aria and Maya were entertained for about 10 minutes I ran one mile again and then went back to them. Again, I was feeling pretty good. I did that again the next day and have realized that if I run just one mile I start to feel better. : )

Now one mile to a lot of people is nothing. Just one mile to me however, means more energy for my family and friends. It means clean laundry and homemade snacks. Just one mile means going out and laughing along the way. It means being able to give back to those that have given so much to us. Just one mile is my sanity. It allows me to continue being truly grateful for the amazing life that I have been given. Just one mile to me is EVERYTHING.

Love to you all,

Kristen

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