Hospital Visit

On Wednesday Mike and I had an appointment with the genetic counsellor. It was an opportunity for questions and answers and we had our blood drawn to ensure that we are both SMA I carriers. The chances that we're not is less than 5%. The girls will have the opportunity to make their own choices regarding testing when they are adults. Let's all hope that there is a cure for SMA before my girls are of child bearing age.

We also walked up to the PICU to drop off some toys. I had thought that it might be difficult but it wasn't. Navigating the halls and elevators brought back memories but Mike and I can do that without even paying attention. I don't know how many times we made our way through that labyrinth. We saw a few familiar faces and stayed for a short visit. That part was easy because I wasn't in a state of panic as to how Georgie was doing. The fact that the meter had already run out was trivial. : ) Thank you again to Dr. Mhanni and all of the staff at Children's. We are forever grateful for the care that you provided and the compassion that you showed to a couple of visiting parents. We think of you all of the time. Congratulations Ben and sorry we missed you Lindsay.

To the person who suggested that the birds I saw were Nuthatches, I agree that those are the closest looking birds but I have yet to see one that I would say is the same bird. In fact, last night I spent way to much time online trying to figure out what they are. In the end, my friend and I had a huge laugh over the idea that I have either discovered a new species of bird or am indeed crazy! I have decided that I will keep searching and keep my camera close to the back door.

Lorraine, of course I remember who you are. I will never forget Jenna and her sparkly red shoes. Last summer we met at the swings and I had the opportunity to meet Ethan. I am sure that we will see more of each other again now that the weather is finally warming up.

For those of you still interested in reading the article here is the link. Yes, I know that the blog address in the article is wrong. I have contacted the reporter to let him know but he has yet to get back to us.

Love to you all,

Kristen

Those Crazy Birds - Or is it Me?..

For those of you that think that I have gone completely crazy over the birds, I have some more fuel for your fire. : ) On Sunday after posting, I took my melancholy self out into the backyard, away from the girls. When I first sat down on the deck there was nothing happening. Within about 30 seconds a chickadee landed at my feet. I'm serious, I could have reached down and touched it. It stared at me for a minute and then flew off. As it left two other birds started swooping into the yard. I sat there watching them wondering what they were doing. I still have no idea. They landed on the fence and sat there watching me. These were birds that I have never seen before. They had powder blue heads, white chests and brownish, grey wings. If you can tell me that would be great. Anyway, they sat there for a while and then my friend the robin joined them. Nobody seemed interested in the birdfeeder. Rather, they all just wanted to stare at me. It was around this point that I started to giggle to myself. I have drawn my own conclusions about the birds and I'll let you draw your own too!

Today was Calla's dance recital at the concert hall. Poor little peanut wasn't feeling great but she still did a fantastic job. They had the crowd on their side when "Who Let the Dogs Out?" started playing. It was so cute! Maya is too young to dance in the recital but I can assure you that she danced and danced and danced. I think that she may be a hip hopper. : ) Congrats to all of the great dancers! We'll miss you Miss Lisa.

Love to you all,

Kristen

PS I placed the solar lily lights in the garden today. They look beautiful now that the sun has set. Thank you Auntie, Uncle, Nicki and Josh.

Readings from Georgia's funeral

Here are the long promised readings from Georgia's funeral. Sorry it took me so long to post them!

Kristen's eulogy for Georgia

Mike's reading "flight of the little star"

Krista's reading (message & poem)

- Mike

The Lance

A reporter from the Lance (our neighborhood paper) came by today. He came to learn more about Georgie, SMA and our blog. The story should be in this week. We are hoping that it will raise more awareness about SMA and get more people to sign the petition, such an easy thing to do. Before doing the interview one wise person advised us to decide ahead of time what we wanted our message to be so we didn't say anything we didn't really mean. Thanks, that was quite helpful. The story will be available online as well for all of you out of towners. (edit: here it is)

The sun is shining today and I am trying really hard to let it lift my spirits and yet I feel myself sinking. The last few days I have been reliving every moment from March 16th until April 21st. I can't really explain why. On Friday I ran into one of the respiratory therapists at Children's. She recognized me right away and gave me a hug. She is a lovely person and I was genuinely happy to see her but of course she brought back many memories of the hospital. Later that day, I read about Gwendolyn having some scary moments and I could feel that same fear that I lived for 36 days. Again, today I found myself talking to a complete stranger about Georgia and SMA.

Don't get me wrong. I will talk about Georgia until I can talk no more. I will continue to put one foot in front of the other until my body quits working. I can actually feel Georgia with me all the time now. She continues to urge me forward and yet I am still sinking back into that hole. All part of the process, I know. I am going to Lacoste's in a while to pick out some more flowers for the garden. That will help. I will also go looking for that treadmill within 24 hours otherwise the darkness will envelop me.

Love to you all,

Kristen

PS There were two bright yellow finches in the garden today. We were all excited! Georgie is trying hard to help me out of that hole.