Packing

We arrived in Black Diamond just outside of Calgary late this afternoon. The girls are great travellers but the DVD player really does help!! Thanks Kelly. Barbie and the Diamond Castle and 12 Dancing Princesses have never been such a relief. We have spent the evening catching up with Mike's family, Trish, Bob and Joan. Tomorrow we're off to stay with Bruce and Emma for a couple of days before heading up to the mountains.

Packing for this trip ended up being way too easy physically and way too hard mentally. The girls now being 5 and 3 don't require much beyond changes of clothes and a few toys. Last summer when I was thinking about doing this trip I was imagining all of the gear that would be required. That is one of the reasons that we ended up buying the van. Now the van is kind of like a thorn in my side. It really isn't needed and stands as a reminder to what we don't have.

My youngest child now resides in a place that doesn't require strollers, car seats, and diapers. She no longer needs bottles, formula and a playpen. We didn't have to do any extra stops to "feed the baby" or "change a diaper". Instead our 13 hour ride was quiet for the most part besides the "How much longer?" I'd love to say that it felt great but it didn't. The tears fell as we left the city. Our family trip is definitely missing someone.

Missing you Georgie,

Love to you all,

Kristen

The Norwex Party

Thank you to all that came out to the Norwex party last night. At last count my mom's commission was over $300.00 which will all be donated to FSMAC. The orders are still rolling in however so if you wish to place and order please contact her. She is donating all of her commission until the end of summer. Because I hosted the party I also got quite a bit of free stuff and most of it will be thrown into the prizes for the raffles at Georgia's Journey of Hope.

On to other news. My friend Tanya Lynn is hosting a Trash the Dress event. Tanya is a very talented photographer, the same one that I mentioned in my last post. She and a friend are arranging the event. Anyone interested would meet to get their hair and make up done and then put on their old wedding dresses. The photographers will be snapping pictures in The Exchange District as well as Bird's Hill on the beach. If I can find my gown and fit into it Tanya count me in! Tanya and her friend Carrie are donating all of the proceeds to FSMAC in Georgia's name. Come on! Doesn't this sound like fun? Please visit http://tanyalynnphotography.blogspot.com for more information.

We're off to Calgary in the morning but I will continue posting and checking emails. Before leaving I wanted to share some pics of the girls having fun over the last couple of weeks.

Love to you all,

Kristen

Why?

Well, the sun has finally decided to shine down. Yay!! The girls and I were out at the local wading pool this afternoon and were swimming at a friends' pool yesterday. We have plans to be out swimming yet again tomorrow before packing up the big blue van and heading out to Calgary. We are looking forward to spending time with family and friends and spending some time as a family up in the mountains.

My quiet moments have been filled with thoughts of October 3rd. I just want to say thank you to all of you that have already contacted me asking how to help. Right now, the push is on for prizes. We have the letters finished and some of them have now been sent out. If you would like a copy of the letter for your company please contact me and I will do my best to get it out to you as soon as possible. Thank you to Tanya. Tanya is a photographer and she has come up with a fabulous idea for a prize. Let's just say that it has something to do with lilies. September 3rd will be the date to assemble all of the volunteers. Please come prepared to sign up on a committee and to share any ideas that you may have.

With Bill and Victoria Strong's permission I have copied and pasted some of their last post to remind all of you why Georgia's Journey of Hope is important.

"The SMA program is currently at a critical and exciting juncture. All of the pre-clinical efficacy studies, including the pivotal animal safety studies, have been completed, demonstrating that the cells work and that the motor neuron replacement should be a safe strategy in the treatment of diseases, such as SMA, characterized by motor neuron loss. Dr. Keirstead and his team are now preparing for a pre-IND meeting with the FDA in Q3-2009 with a targeted Phase I clinical trial in humans to begin in early 2010. Phase I will initially focus on babies with SMA Type I, Gwendolyn's Type, with other Types planned for later phases of the study.

Families of SMA and others have invested over $1.5 Million in the program over the past 5 years. While California Stem Cell will be responsible for most of the funding through the clinical trial process, the program needs an additional ~$500,000 as a bridge to that phase for staffing and studies to support the requirements leading into that critical Phase I clinical trial in early 2010. This research is unbelievably promising and could truly change the future for SMA and countless other diseases.

If you or anyone you know is interested in helping see this promising research make it swiftly to and through clinical trial or if you know any foundations that focus on this type of groundbreaking medical research please contact," the Strongs http://www.gwendolynstrong.com/

Please note that we have stated that Georgia's Journey of Hope will be a fundraiser for FSMAC which means that it will more than likely stay in Canada but it doesn't matter where the cure is found. Let's just help them find it!! FSMAC uses 95% of it's donations towards research.

Love to you all,

Kristen

A Moment

Today was yet one more rainy day among the many that we have had this summer. I don't think that we have reached the normal high for over a month. We were supposed to go to the always loved Tinkertown but because of the rain our friends invited us to go bowling. I immediately said that we would join them before realizing where we were going. We ended up at the same place that we were on March 15th. The reason that I remember this is that it is the last place that I took Georgia besides the hospital and then home. It had been Calla's birthday that weekend and we had met a few of her friends at the bowling lanes. I remember the kids having a blast but it had been a very stressful day for me because I was watching my baby get sicker by the hour.

After I had agreed to go bowling over the phone I considered calling to ask if we could change the location but changed my mind. In the end, we were late so I didn't even have time to think as we arrived at the bowling alley. We ran in, greeted our friends and immediately walked up to the desk to get shoes for the girls. As I was putting on Maya's shoes I was startled to hear "Buffalo Soldier" by Bob Marley playing. I stopped and looked around for a minute thinking, "This is just too weird." Not more than a couple minutes into the last place I had ever taken Georgie and the song that she took her last breath to was playing. This time however, it wasn't the soft lullabye version. Instead, my angel had sent me the very happy dance version and I found myself smiling, grateful for happy memories and grateful to be surrounded by such amazing friends having fun.

Love to you all,

Kristen

Receiving

Yesterday, while I was talking with our insurance agent he asked about the fundraiser in October. He immediately asked me if he could have a copy of the letter we are sending to companies because he said that he would personally go around to several businesses and get me some prizes. I was surprised by his generosity(not sure why) and surprised by my first thought to say 'no thank you'. Those words did not come out of my mouth, I can assure you. Instead I said something about how great that would be.

Before Georgia became ill my immediate reaction to anyone offering help of any kind would have been no thank you. I am an independent and stubborn person who hates the idea of burdening anyone. When Georgia was sick however, and I was in the PICU I realized very quickly that I was not going to be able to do everything that needed to be done by myself. I needed help with Calla and Maya. I needed help with meals and the house. I needed all kinds of things and people stepped up without me ever asking. It was and continues to be a very humbling experience.

Later on in the day yesterday I was surprised yet again when one of the moms from school gave me a gift. It is called "Angel of Miracles" and it is an angel holding a little yellow bird. I could tell that she had struggled with the idea of giving it to me. She even told me that she wasn't sure how I would feel about it especially because we don't know each other very well. Well Tracy, I love it! Thank you so much.

As I carried my angel home I realized something that I have been slowly learning along this journey. We all must learn to be gracious receivers. This is especially hard for mothers because we think that we have to be able to do it all. Many of us are afraid that by asking for help we are asking for judgement. This is simply not true, especially when we surround ourselves by kind and caring people. I don't pretend to be able to do it all. I don't pretend that every day is super fantastic. My life is one of ups and downs and when I am down I am learning to ask for the help I need to get up. The other thing that I am learning is that by asking and accepting help I am now more able to help others and...that feels really good!

While I don't feel especially down right now I am now asking for help. I will need many volunteers to help me make Georgia's Journey of Hope a success. If you are interested in volunteering please come to my house on Thursday, September 3rd around 7:00. If you can't make it and would still like to help please let me know. Not sure that you would like to volunteer but would still like to help? Mark October 3rd down on your calendars, tell others about the event and plan on coming.

One more thing... On Tuesday my mom and I are hosting a Norwex party. If you are interested in cleaning without chemicals, want to order something to replenish your supply or sit around eat snacks and see the garden come for around 7:00. Children are welcome of course. All of my mom's commission will be donated to FSMAC. Once again if you are reading this, you are invited.

Love to you all,

Kristen

PS Thank you so much for your comment Vanessa. Writing a book has been brought up many times but at the moment my reasons are still selfish (healing). Perhaps one day when I have more to give I may change my mind. Thanks for being so honest in a public forum. You have no idea who may now pick up that book and find healing because you found the courage to say something out loud.

The Club

A few months ago I found out that I was about to be initiated into a club. I wanted absolutely nothing to do with this club and yet found that I was destined to become a member. The initiation is brutal and cruel, so much so that it can often break an individual. Once you have joined you are a member for life. The current members of this club consider it to be too large as it is and really don't want any new members. Despite this fact they open their arms and their hearts to all those that make it past the initiation.

I am now a member of Mothers Of Terminally Ill Children and Those That Have Lost Them. We have endured heartache that we wouldn't wish on our worst enemies. We have endured stares and whispers behind our backs. We have endured awkward glances and pauses even from friends and family that we have known for years. Some of us have stayed awake many nights wondering if our child would live to see the sunrise. Some of us have seen our small children endure such painful tests that most adults couldn't handle them. Some of us have had to make decisions that may haunt us for the rest of our lives. We have fought alongside our children even when we have been told all hope is lost. And yet despite its many crushing traits the club does have some attributes.

I have had the priveledge or meeting some of the most amazing and compassionate people in the medical field. Looking out from inside the clubhouse walls I have seen others make small and big changes in their lives after watching the initiation. I have been surrounded by people wanting to support and help me but.... my club still sucks!

For those of you looking in wondering how the members of the club are doing know this: We are a group that is stronger than many people imagine. Despite losing children many of us still believe in hope and miracles. We are capable of rising up and becoming a force for others because we don't want any more members! Many of us fight for our children and many of us fight for the children of others. Don't just sit there and feel bad for us.

Fight with us!

Love to you all,

Kristen

PS Happy Birthday Mom!

Georgia's Journey of Hope

Today as I was getting ready for the day I decided that the name for the fundraiser would be Georgia's Journey of Hope. I really loved all of the suggestions and have spent quite a bit of time pondering all of the possibilities. I had wanted to include the word Cure and SMA but I happen to be an optimistic person. I know that last sentence doesn't make sense but keep reading. : )

Georgia came into our lives and graced us with her presence for a short time. She taught Mike and I more about living in 6 months than all of the years leading up to her birth. We were forced to learn about the devastating disease called SMA but we also learned about a lot of other childhood diseases and have met many people fighting every day for their children. This year the fundraiser will be for Families of Spinal Muscular Atrophy and it will continue to be every year until there is a cure. Now, because I am an optimistic person I believe that in 5-10 years SMA will be cured but my journey as Georgia's mother will be far from over.

Georgia's Journey of Hope will then become a fundraiser for Pediatric Palliative Care here in the city of Winnipeg. I am hoping by then that there will be a Children's Hospice and all of the money can be directed to it. I know that I am getting ahead of myself so I will stop there. Just know that I have thought alot about this.

This afternoon as I started to ask myself if I was sure about the name I came to the blog and read about a little boy here in Winnipeg who earned his wings on Wednesday. Noah wasn't yet 4 and had a condition called 12q deletion. You can read his story at noahgrantjohn.blogspot.com Reading Noah's story has cemented the name in my mind.

Before signing off tonight I want to say thank you to Bill and Victoria Strong. They have come up with a video to get people to sign the SMA petition. The video is beautiful and powerful, pretty much like everything the Strongs do. If you watch carefully you'll see our little angel. Thanks so much for including her guys. I encourage everyone to take a few minutes and watch. It will remind you why so many of us continue to hope and to fight. http://www.youtube.com/watch?v=DncMkpqn_xo When you have wiped away your tears if you haven't already signed the petition then hopefully you will. We ask that you post the video on your blogs, facebook pages etc or just forward it through email.

Love to you all,

Kristen

Blooming

Yesterday, the girls and I took off for the States with my mom to meet some friends. We all just hung out, shopping and swimming. It was a nice time especially considering all the rain. Is it ever going to stop and warm up?

Despite the cool weather and rain I was pleasantly surprised to find over a dozen tomatos growing on one of my plants and several flowers on the others. The other tomato plants were all grown from seed and spent several days in the our bedroom with Georgie soaking up the warmth from the windows back in April. I'm very excited to see them thriving. The garden has slowly come to life. Within the first week of filling it in with soil it looked like there was a whole lawn growing in there. It was of course, WEEDS!! I have spent hours if not days at this point pulling them all out and it finally looks like all of that time is paying off. The hydrangeas are finally blooming and the forget-me-nots are blooming again. The stargazers are teasing me at the moment as they are just taking their sweet little time opening up. While everything is very late this year the garden is finally looking as beautiful as I imagined that it could be. As for the birds and StanleyBugsJack, they are all still here although the bunny is avoiding the garden! : ) Thank goodness for the blood meal.

I will make a decision on a name for the fundraiser by the end of the weekend. If anybody has any more suggestions please feel free to let me know.

Love to you all,

Kristen

PS Happy Birthday Baby Brother!

Step 2 - Maybe it Should Have Been Step 1

We are on the hunt for a name for the fundraiser. If you have any ideas please send them in. It must include the name Georgia and or SMA.

Love to you all,

Kristen

Fake It Til You Make It

In my early twenties I had a dance instructor whose favorite saying was, "Fake it til you make it!" Her motto was that if we all just kept on moving our bodies eventually we'd be actually dancing. It was a hip hop class for anybody wondering.

Since then I have had this saying run through my head hundreds of times but never as much as the last couple of months. On the day that Mike had to go back to work I realized that I would be facing my days alone. There wouldn't be any tag teaming of the girls anymore. I would have to put my game face on even if I wasn't even close to being ready to play. "Fake it til you make it!" That's what popped into my head. I mean seriously - if I choose to stay at home to raise my girls then I really have to do it right. If I'm not going to enjoy them and nourish their minds and spirits then what is the point? If I am going to be depressed and negative then they would be better off with somebody else all day.

So everyday I got up and tried to smile. Everyday I got up and showered and put make up on - even mascara. I even went back to flipping my hair out every day because when I look at pictures of myself at my happiest my hair is often flipped out. Everyday I tried to act somewhat excited even when I felt like going to bed. Everyday I tried to curb the anger and impatience that sometimes came out. Every day I tried to find something joyful even when I felt like life sucked!

Fake til you make it right?! Well very slowly that is what is starting to happen. I don't get up with a smile everyday but I can guarantee you that I do smile for some of the day and end up laughing for some of it too. I don't flip my hair out everyday but I promise all of you that I still shower!! : ) I don't yell at my girls anymore nor do I really lose patience with them like I did for a while.

My greatest obstacle is getting excited. Besides going to Vegas, there is nothing that I have been excited about for a very long time. Even while we were in Vegas it was hard to get excited. I often feel kind of flat. So what do I do? I try my darndest to muster up enthusiasm and look happy. Eventually, it will be genuine.

Love to you all,

Kristen