Monday, May 17, 2010


(Charlie 10 3/4 months, sleeping on auntie Christie and uncle Ed's wedding boat cruise)

A couple of weeks ago I was at my friend Christie's house preparing it for her wedding shower/stag when she mentioned in passing that she didn't get much sleep the night before and had to get up early for her daughters swim lesson as well. My heart fluttered and my cheeks got hot when I heard this because we are very close and I wasn't even aware that Dani was in swim lessons...I felt sad for Christie that she felt like she couldn't brag or beam with pride about her babies firsts to me. I felt sad for myself that I would never be able to counter brag about Charlie in similar comparable stories are all the 'special needs' versions now. I brought my feelings up to Christie a few days later and told her that I feel really weird that she may feel really weird about telling me about what's new and exciting with Dani. I said that I really wanted her to feel like she could be herself and brag and talk about her freely, but as I was saying it I couldn't help but feel like, no she couldn't, cause it would make me uncomfortable and sad and jealous, and then I'd boil with rage because I don't/won't have that, and then I'd loath myself for not accepting my lot in life, and not embracing it with grace and beauty. And I told her that part too. I am so hot and cold on the whole subject of 'baby disclosure'. Christie said, "I didn't not tell you on purpose, but I gotta be honest, you're probably not gonna be the first person I call when she walks." And then she explained that everyone has qualities that they have to offer in friendships and often we have different boundaries with different friends, and this was ours. It stung a bit to know that I'm probably that girl to a lot of my mom friends now, but at the same time, it doesn't have to be that way forever. And I agree with Christie, and I appreciate her honestly, and I'm glad that she allows me to be honest too.

While we're on the subject of swimming, Canuck Place found a program for Charlie called Baby Beluga and she started classes last Monday. We were really looking forward to this because Charlie loves the water, so we got up early, got organized and headed to the pool on 62nd and Cambie. It didn't go exactly as planned. We were caught a little off guard when we noticed that most of the children had down syndrome. I guess it just reminded us that Charlie is 'different' but at the same time SMA and down syndrome are almost completely opposite ailments (for lack of a better word)... maybe we just felt like all of the 'different' children were lumped together, and if that was the case, then where were the 'normal' kids? They played a game where they passed a ball around between the kids and of course, Charlie couldn't do that. Also because Charlie can't cough up/out water, I was just so anxious the entire time about someone splashing her or Matt losing his grip on her, and her ingesting water and choking. The pool was also in a solarium type room and because Charlie can only be on her back, she was upset the entire time that the sun was in her face. So, we've decided to stick to her SMA tub for now.

Sometimes I'll just be taking a walk with Charlie, or jogging around Science World on a sunny day with Matt, or enjoying a pint of Wheat Ale on a Yaletown patio, and I'll think, "I love my life or look at where I live...I'm so lucky. And then something will click in my head and I'll think, "How dare you Cherie, your daughter is dying!" And I'll remember that I'm not supposed to love my life or be happy and I'll feel guilty for momentarily forgetting to be miserable. I've told Matt before that I think grief is based on guilt. I think that if someone is dying or has died, grief is 1/2 missing that person and half learning to allow yourself to move forward and eventually feel complete happiness while still remembering that person fondly...and i think it takes time to get to that place guilt free.

We were at the doctors the other day when a woman yelled from across the room, "What's wrong with your daughter?" Hmmm. Not quite the way to ask someone a sensitive question like that. I quietly tried to explain what the issue was and Matt hurried us out. I don't mind discussing what's going on with Charlie, most of the time. And sometimes, I don't feel like talking about it at all. But sometimes I'll be in a social situation and I won't feel like talking about it and then all of a sudden, I'll find myself looking around the room at people laughing, and people talking, asking other people things like, " OMG, where did you get that shirt?!" or complaining about waiting on hold with Telus for a half hour, and my mind will race and I'll be thinking, "What the hell is wrong with you people?! Don't you realize that my daughter is dying, how can you all be so shallow?!" I don't envy my friends and family. At all. They can't know what to do in this situation, I'm pretty schizophrenic when it comes to my feelings. Ask me, don't ask me, come here, go away, I'm happy, I'm sad. So, again, thank you to my friends, for being my friends. I need you and I love you, even if it doesn't always appear that way. Much love!


  1. ...always good to read you.. always raw :)

  2. I really admire your honesty Cherie. I don't know how I'd have reacted to that woman at the Drs. office. My first reaction would have been to say "She's dying! Anything else you want to know?" You handled it much better than I would have.

    Stay strong & don't let the few ignoramuses in this world get you down.

    Such a cute picture of Charlie, she is precious beyond words.