Voting

Well, tonight, thank God it's them instead of you.

Since losing Georgie I have grown to hate the above lyric. It is of course a famous line from the song, 'Do They Know It's Christmas?' by BandAid. Despite the fact that Bono is actually the person who sings that particular line I can't even get myself to like it a little bit.

When Georgia died I was acutely aware that the people around me and those that had just heard about us were counting their blessings. That's great. In fact, I was still doing the same thing. While I did have moments of "why me?", I remembered Randy Pausch's question of "why not me?" I am no more special than anyone else and while it pains me to say it my children are no more special than anyone else's... except to me and the people that love them. Not once did I ever or would I ever wish SMA or the loss of a child on someone else.

When I received the phone call not so long ago from the genetic counsellor telling us that this baby girl did not have SMA I was relieved to say the least. In fact, in many ways I was ecstatic. After hanging up however I started to wonder if I was her last call of the day. Had she delivered bad news to another family just before calling me? While I was totally grateful for the good news that I had received I felt sick at the idea that somebody else could be receiving the most awful news a parent could ever get. You won't catch me thanking God that it's somebody else because I don't want it to be anybody else.

That's why it's so important to me that the Gwendolyn Strong Foundation wins 1 million dollars. Curing SMA means that it won't ever have to be anybody else. You see despite losing Georgia I can still imagine a world where Gwendolyn Strong one day walks down the aisle on the arm of her father. I can imagine a world where Daikin has enough lung capacity to become an Olympic Athlete or a World Class Diver. I can imagine Nicholas growing to be bigger and stronger than his mother, one day picking her up and thanking her for not giving up. What would these children tell us? What could they teach us? We'll never know unless we choose to hope and believe in the possibility of another reality. I can imagine it. Can you?

Join us in voting for the Gwendolyn Strong Foundation to win 1 million dollars. Here are some of the ways that you can help.

1. VOTE: go to http://VoteForSMA.com
2. Email friends the voting link
3. Post the voting link to your Facebook status all week long
4. Blog about GSF and the $1M miracle to cure SMA
5. Twitter the voting link
BE ANNOYING (we mean persistent:) ALL WEEK LONG!

If any of you are still actually wondering why this is so important please take the time to watch this video the Strongs have put together. Actually, I encourage all of you to click on the above link and look into the eyes of so many little ones like Gwendolyn and even our Georgia and remind yourselves to be grateful.

Voting begins tonight at midnight.

Love to you all,

Kristen

Facebook

Well, this morning I did something that I have been considering for a long time. I finally set myself up with a Facebook account. I've had lots of reasons/excuses not to do it until today but now there is something more important than my excuses. The Gwendolyn Strong Foundation has a chance to win 1 million dollars and they are pledging to have that money sent to the research that Dr. Keirstead is doing on SMA. 1 million dollars is a lot of money and they have a real chance at winning. They have already won 25 thousand dollars and are now in the finals. Here is some of what they have posted recently:

"We are extremely humbled that the Gwendolyn Strong Foundation (GSF) was voted by its supporters in December 2009 as one of the top 100 nonprofits out of more than 500,000 organizations in the first round of the $5M Chase Community Giving campaign on Facebook. That accomplishment would have never been possible without the passionate dedication of each and every one of us collectively working hard to get the word out about the importance of the campaign and tirelessly asking our family, friends, neighbors, and colleagues to vote for GSF. To each and every one of you and them, thank you. Together, we made it happen!

For our first round accomplishment we received a $25,000 grant from JP Morgan Chase. We promised 100% of that to Dr. Hans Keirstead's promising stem cell program at the University of California, Irvine and we proudly sent a $25,000 check directly to Dr. Keirstead's lab within days of learning we won."

On Friday the voting will begin and I will post more information on how all of you can help us. I will also be sending out emails to remind you about our cause and hoping that all of you Facebookers will vote to make it happen. I am hoping that you will forward on my email as well as post the information on your Facebook pages. Two minutes could make all the difference. Stay tuned!

On another note, if I don't seem to be doing things right on Facebook please be patient. The truth is I have no idea what I'm doing yet and don't even have a picture posted. I promise to get it all sorted... that or Mike, my very computer savvy husband will! : )

Love to you all,

Kristen

PS Bill and Victoria, hope you don't mind me quoting you guys!

Anxiety

I had thought that I would have been working by now. So far despite being a registered substitute teacher I have yet to put in a day. My reason for staying home however is amazingly important. Back at the end of September, maybe the beginning of October, our Maya started to act extremely anxious. She had started coming to our bed in the middle of the night right after Georgia died but then she started to wake up and throw tantrums around 1:00 and 2:00 in the morning. There was often very little that we could do to calm her down. Once she was up she could be up for a couple of hours. This made things quite difficult and tiring around here.

She also started to cry when I dropped her off at school and even stopped falling asleep until late the night before school. She also started complaining of stomach aches all of the time. One day I finally asked her if it felt like butterflies in her tummy and she replied in the affirmative. My once happy and self confident little girl had changed. She was now suffering from anxiety. I had been preparing myself for this since my days in the PICU but it still didn't stop my heart from breaking.

You see almost 10 months ago Maya's life changed in a profound way. One day her mother and sister were with her 24 hours a day and the next they had disappeared. She was told that we were in the hospital but she was two years old. All that she would understand was that we had left her.

The morning that I walked into the hospital with Georgia I had a feeling that my life was changing forever. There was never any question that I would be the one to stay with her, even as I recited bedtime stories to Calla and Maya over the phone before hanging up and crying. Calla had some understanding because when she had been taken into the hospital with asthma in the past I always stayed with her. I could explain to her that I would stay with whichever of my children needed me most. Maya was just too young to understand this.

I remember one night rocking Georgia knowing that there would be consequences to my actions. I swore right then and there that I would spend the rest of my life making it up to Calla and Maya but first I had to make things right with Georgia.

Eventually, Georgia and I made it home but Georgia died a short time later and Maya was left with a wreck for a mother. As time has moved forward I no longer consider myself a wreck and I remember that night rocking Georgia to sleep and my promise to my girls. So now I must be the rock. Working isn't an option right now because Maya needs to know that I am here for her always. She wakes up and I'm here. She eats three meals a day with me. I take her to school, gymnastics, swimming and dance. I kiss her good night every night. We make muffins and do crafts together. She is my shadow and I will be hers until she is ready to say otherwise.

Recently I read the book 'My Sister's Keeper' by Jodi Picoult. Yes, the one that they made into a movie. What fascinated me most about the story was not the relationship between the sisters but the relationship between the mother and her two healthy children. I sympathized with the kids and at times I hated the mother even though I understood why she made some of the decisions that she did.

One day as an adult Maya will probably sit down with a therapist and discuss all of the ways her mother ruined her life. All that I'll be able to tell her is that I did my best in an impossible situation. I loved and continue to love her just as much as I love Calla and Georgia but I wanted them all to live. I pray that Maya will never need me in the same way that Georgia did even though I understand that she needs me just as much.

On a positive note Mike and I have started to see that 'spark' again. We actually see it in both of our girls. Calla has started to become a little more animated and excited about life and Maya... let's just say that she's sleeping through the night in her own bed. : ) We'll take whatever we can get!

Love to you all,

Kristen