Wednesday, September 1, 2010

That's what friends are for.

(Charlie, 14 months old)


















On Monday my friend Christie and her daughter Dani came over for a little visit. Christie and I have been friends since we were 12 years old and were pregnant with our girls at the same time so we have an extra special connection with one another and each others daughters. When we were pregnant we would often discuss our adjoining futures...our kids were gonna go to the same school, be best friends, have sleepovers, we were going to swap free childcare...so when Charlie was diagnosed, both of our dreams were shattered, Christie was almost as devastated as Matt and I were...as sad as that was to see, it felt good to know and see that someone was as attached to baby Charlie almost as much as Matt and I were. I felt loved and understood. Christie has been super supportive of everything that we have been going through since Charlie's diagnosis...she is always the first one at the hospital to support us, as well as the first one I call when I'm feeling really upset about it all. I read a quote on one of the grief websites I frequent that said, "You will be surprised at who will be there for you, and you will also be surprised at who will not." And, I can totally agree with that statement. I am surprised at who is not there for Matt and I, but luckily, I'm mostly pleasantly surprised by who is...and Christie has definitely surprised me in wonderful ways. Thanks Chris!

Christie had a very difficult delivery with Dani, and because of that, Dani now suffers from chronic bronchiolitis. Whenever she gets what is considered a minor cold to most children, it quickly turns to bronchiolitis, thereby sending Christie and Dani off to Children's hospital yet again. Because of this Christie has always been VERY careful about monitoring Dani's health and letting me know if it is unsafe for me to come around with Charlie. This past Monday was the first time the girls had been indoors together since mid May. But yesterday morning Christie texted and called me so upset because Dani had woken up with a cold that neither of us saw coming. While she was feeling bad for me, I was feeling bad for her...and terrified for Charlie. You see, if Charlie was normal I'd seriously let her share ice cream cones with other kids, but she's not, so every sneeze, every cough, every clearing of the throat I hear, sends shivers down my spine. So, we quickly stripped our bed, did all the laundry, bathed Charlie, used a saline solution to clean out her nose, cleaned the house, and now we're waiting...but, so far, we're good. Hopefully Charlie is OK, and if she is, I'll actually be glad we had this scare...it showed us that we were getting a bit too lax with Charlie's care and that we need to reevaluate our precautionary measures, both for us, and our friends.

After we hung out at my place for a bit, Christie and I headed to Urban Fare for coffee. When we were sitting down talking, Dani in her highchair, Charlie in her stroller, I looked over and saw a young couple laughing at Charlie...I looked at Charlie who was just staring at the fan overhead, and then back at the couple, the guy looked at me smiling and laughing and said, " She looked all distressed there, she was just breathing all heavy, and looking all over the place." Did I mention he was LAUGHING?! I smiled uncomfortably and just turned my head in Christie's direction and she quietly said, "ummm awkward." "Yup." I said a little shocked. Who laughs at a baby who's "distressed and breathing heavy" but, at the same time, I know they didn't mean anything by it. Christie and I just thought, "Wow, we could have just ruined their day by saying....." But, we didn't. And that's the thing, uncomfortable situations like these arise often, and I always find myself trying to protect the other persons feelings, when what I really want to do half the time is just explain what's going on with Charlie and get it out of the way...but, at the same time I derive secret pleasure from Charlie still appearing 'passable' to most folks. Often people just think it's Charlie's quirky character that makes her stand out or exhibit certain behaviors...like the woman on the elevator the other day who said, "look at her just giving me the peripherals", not knowing that Charlie can't actually turn her head to look at her and has to stretch her cheeks flat and make that little thinkers face while looking out of the corner of her eye to get a good look at you. But, we just smile and nod, because 30 seconds on an elevator just isn't the time or place.

The Adventure Challenge is in 10 days! There are now four of us ladies on team "Charlie's Angels" With over 8500$ in donations and more on its way! We are in first place as a team and I am in first place as an individual...and the competitive part of me is so proud of that! I will be sure to post the details soon after the race, and knowing me, probably a little video too. Time for bed, I've got heavy training in the morning.

12 comments:

  1. Cherie, you're awesome!!! xoxo Caro

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  2. love your descriptions of everyday. you're too gracious but right about those 30 seconds

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  3. Hi Cherie,
    I learned of your blog from a friend who is a friend of someone you met in the park (maybe Caroline?). I have read many of your postings and although I haven't met you, I felt as though I should post a comment to let you know that I find your blog really touching. The honesty and emotion you write with is so powerful. Charlie sounds like such an amazing, sunny, wonderful little girl. Your story is so sad, I am so so sorry. I have a 5 month old son myself, and I can't even begin to imagine your sorrow. Yet you find such beautiful happy moments to share even in the depths of despair. It really does remind us not to take the small things for granted, or to sweat the little stuff. To stop waiting for the future and to live in the moment. Your story is truly inspiring. Thank you so much for sharing it.
    Martina

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  4. Cherie - I found your blog from the Vancouver Sun online today - I look forward to catching up to your story and encouraging you. YOU ARE so BRAVE! I liked the story about the other people laughing at your girl and the feelings around that - I have a son injured at birth with cerebral palsy - and so much of what you say I remember feeling the same way when we was young and his physical differences weren't completely obvious.

    I often was told by others "oh, he must be tired" - when it was really his low muscle tone in his neck that made him appear that way. Your writing brings back some bittersweet memories for me. My boy is almost 12 now!

    I look forward to cheering you onwards from one mom who understands pain to another xoxo

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  5. Hi, I found your blog through V Sun article. Your daughter is beautiful.

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  6. Charlie is sweet, special and beatiful! You are all a very special family!
    I keep you in my heart,
    Mirela

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  7. What a beautiful daughter you have. She is just gorgeous. I saw the link from the Vancouver Sun to your blog. Get ready for the entire lower mainland to fall in love with her as well!! I won't forget Charlie's story. You are in my thoughts.

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  8. Way to go team Cox! Cherie, you are an amazing, selfless woman to be trying to raise awareness in the midst of all you are dealing with. SO proud of you buddy. And for the rest of you learning about these guys through the media...I wish you could see Charlie's goofy smile and giggle as you read through this blog. The pictures are beautiful, but they don't begin to touch just how wonderful and unique this little girl is. I have never seen a happier baby!
    Love Chris

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  9. Happened upon your story this morning thru the Van. Sun article; your blog will likely fill quickly with additional love, support & prayers from many people in the community. Sharing your journey takes courage and an open heart as the parents of this incredibly sweet girl ~ thank you for your sharing. On behalf of myself and my family, we will send lots of strong, warm energy your way!

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  10. Thank you for sharing your story and your beautiful Charlie with us.

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  11. I just wanted to say thank you for sharing your story. You are doing a very important thing by sharing your story so that people going through similar things can see that they are not alone in some of their feelings. I can't seem to stop reading your story! Both you are your beautiful daughter are an inspiration. Good luck at the Adventure Challenge and I am happy to say I was able to make a donation to support you and I hope more people will as well!

    Thinking of you and your angel Charlie!

    Kendall

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  12. Thanks everyone! Your comments never go unnoticed, and always mean a lot to me!

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