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