Saturday, April 24, 2010


(Charlie at 9 months)

Well, Charlie's first birthday party planning has officially begun. Because we were initially told that she would most likely not make it to her first birthday, it's a pretty big deal to us! My best friend Anna and her boyfriend Jon live in a gorgeous building with a huge grassy rooftop deck with BBQ's and they generously offered to host the party there, which we took them up on...we want it to be the kids party of the year! We are really looking forward to seeing Charlie's face as she watches all of the kids go bananas! We also plan on accepting donations, rather than gifts, that will go to Canuck Place.

As of May 1st Matt's job position changes. He will only be working 3 evenings a week rather than the 50- 60 hours he has been working. We are very excited about this. We discussed it and we just feel like if we can afford to do it, we should. It will give us the opportunity to spend as much time as possible with Charlie and share in her care. We feel very fortunate that we are able to do this. We are looking forward to making some amazing memories with Charlie this summer. When we were at Canuck Place they were looking into getting her into the Baby Beluga swimming program, so we're just waiting to hear back about that. It would be great if both of us could join her for her classes, she absolutely loves water because she can move her arms and legs easier.

I have been having good and bad days lately. It's strange, sometimes I feel like I'm just being dramatic about everything that's going on, and then other times I realize that I'm not being dramatic enough. When we were at Canuck Place I went downstairs for dinner and Matt went to get Charlie from the nurses ward, when he walked in Charlie was in the arms of a nurse sitting in the family room with all the other children/clients who were very obviously sick...Matt said that it really hit him then about just how serious Charlie's condition really is. And when he told me what he saw, it hit me hard as well. Charlie's death constantly looms over us. When we discuss the future we find ourselves saying things like, "after Charlie" or "when Charlie, you know" or "if Charlie is still around." I still cringe when I hear someone who doesn't know what our situation is says, "You just wait till she's running around." It's not their fault, it's just the way I choose to hear things and process them, and it really depends on the day and my mood. Sometimes future talk doesn't faze me at all, other days it literally stops me in my tracks and leaves me devastated. I often just wish I had a timeline...but then again, i don't want a timeline at thoughts and feelings are just so twisted and complex sometimes. It's like if someone could tell you when you were going to die, would you want to know so that you could try to do everything you could to die with no regrets, or would you not want to know so that the the looming fear of your impending death wouldn't steal the time you did have left? It's a tough one, and we struggle with it everyday. But she's worth it.


  1. When I was a kid I remember we used to have talks about what we would do if we knew we only had so long to live. I guess we are now living that reality. I am glad we know of Shira's condition. Like anything you make the best of it and do your absolute best. For me it's about knowing I did everything in my power to deliver the highest quality of life possible to Shira and keep her as healthy as possible while she is here. In fact it's no different than what we do for our regular son Sammy!

  2. enjoy your party planning and spending more time as a family. your sharing is so honest and lovely. God bless!

  3. You should bring your boys Michelle!

  4. Each day with Charlie is a gift & although it's inevitable to think of the future and what it holds, try not to let that take away the joy you have in Charlie now.

    Yesterday is gone, tomorrow isn't here. There is only today.

    Enjoy Charlie today. Love Charlie today. Hug each other today. Embrace life today.

    Tomorrow is only a thought.

    Love & lots of Hugs,


  5. Sheryl Davis-KahnMay 19, 2010 at 3:03 PM

    Hi Cherie, Matt and Charlie. I think of you all often and am thankful for your regular posts and updates. I am amazed at your courage, resilience and tremendous, enduring love for Charlie and one another. Sending you all healing love, Sheryl Davis-Kahn.