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

Victory at the gym

Many of you know that I continue to go to the gym and run. Getting out isn't always easy but I have promised myself that I will do it at least 3 times a week. I run because running has a certain rhythm to it that is comforting. It clears my head and I can literally feel the negativity that loves to creep over me disappear. According to some of the reading I have done exercise is great for staving off depression. I continue to have a love hate relationship with running. I love what it does for my mind and my body but I hate the actual running. Over the last couple of months at the gym I have noticed that there are different types of runners.

The first and most relaxed kind are the readers. These are the individuals that get on the treadmills or more often the elliptical trainers with a magazine or book and then casually move their legs. They are often dressed to impress and carry a certain "I don't have a care in the world" about them. They are usually young!

Then there are the speed walkers. These individuals mean business. With their arms and legs pumping they climb hills and mountains usually while watching the t.v. The look on their faces says "I dare you to get in my way!"

There are also the jumpers. These are the people that seem to bounce on the treadmill. They always seem happy despite the fact that they are working out. I love to watch these people. I wish that I had as much energy as they do.

I have no name for the most graceful of all the runners. They are usually quite tall and wear an ipod, rarely do they watch t.v. They take giant fluid strides as they move along. They almost appear to be moving in slow motion despite the fact that they are normally moving at least 6 miles per hour. They make running look amazingly easy as they barely seem out of breath even though the sweat is running down their faces and necks.

I don't really fall into any of these categories. I do not read, or watch t.v. I am not graceful or bouncy. In fact, I pretty much fight for every step that I take and it often takes me over a mile to find my rhythm despite being on a machine. Today as my lungs started to throb before I had reached the half mile mark(humidity) I did something I have never done on the treadmill before. I prayed for well being and strength. Within a minute the throbbing stopped and the cramp that I had disappeared too. For the first time I ran and I ran and I ran. I had finally found my rhythm. Not graceful, not bouncy but my own style and in the end I ran over 3 miles. That was my goal for the end of summer. Victory!

Love to you all,

Kristen

Step One

Today I put down a deposit and secured a venue and date for the fundraiser we are planning for Georgia's birthday. It will be the afternoon of October 3rd so write it down in your calendars. It will be at the Notre Dame Rec Centre in Saint Boniface so that should be relatively central for everybody. We are planning to have a bouncer and face painting for the kids as well as food and drinks and raffle prizes. I will be recruiting an army of volunteers at the beginning of September so if you are interested in helping please stay tuned. If anyone can help out with prizes that would be very much appreciated! All proceeds from Georgia's fundraiser will go to FSMAC.

I am also joining the Island Lakes garage sale this year. For those of you that don't know what this is, it is a community wide garage sale that attracts hundreds of people. All proceeds from our driveway will be donated to the Children's Hospital. If you have anything that you would like to throw in for a great cause please contact me. The garage sale normally takes place the Saturday after the long weekend.

For those of you who are still wondering about Vegas here is the abbreviated version. We arrived late on Sunday night but managed to walk down the strip and take in some of the sights including the last fountain show at the Bellagio. The next day we got up late, had breakfast, went to the museum, went to the outlet mall, went to see the Allstars show at the Stratosphere, had dinner and then went down to Freemont street (Old Vegas). The next day becomes a blur but I do know that we walked through Ceasar's, hung out by our pool and went to see Mystere. The next day, also a blur but more walking, time at the pool and "O". The last day after we checked out and had no pool we went to the Titanic Exhibit and got to see real artifacts from the ship, including "the big piece" which is a huge piece of the ship. We spent our last evening watching the sun set from the top of the Stratosphere 108 stories up, the tallest building west of the Mississippi. Mike put $1.00 into a machine and I didn't even do that. Call us boring, we don't care. Gambling just isn't our thing.

This is the last that you will hear me talk about Vegas. It is a surreal and fun place. Mike and I enjoyed just having time together in a world that seems very far from reality. As much as we needed time away our reality is still a much better place than Vegas could ever be.

Love to you all,

Kristen

The Brave Little Soul

Many of you have called or emailed asking for more details about Vegas and I am happy to share them but tonight on the eve of the 3 month marker of Georgia's passing I thought that I would share a story instead. If you've read it before, please read it again. It's a good one. Thanks for sending it Em!

For Lisa, Laurie, Victoria, Lorraine, Candace, Jessica, Jolene, and anybody else facing staggering challenges especially with their children.

The Brave Little Soul By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed."

Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased

Thanks Georgie for reminding us all how to love and become better people! We miss you so much but strive each and every day to open our hearts and to love without fear.

Love to you all,

Kristen