Thursday, November 24, 2011

A Christmas Story.

(Mama and Char, 29 months, at Canuck Place)

Again I've let too much time go between full posts. And again it's like the dam that usually slowly processes and releases information into the little reservoir where all things Charlie are stored, has collapsed and is full force spewing out my thoughts and emotions faster than I can even compute them. But I'll try...(this post was done over several days)

As I sit here home alone, drinking my peppermint tea with honey and waiting for my laundry to dry so I can fold it and go to bed, I'm feeling ripped off and lucky, all at the same time. Charlie is in Canuck Place right now. She's been there since Wednesday and comes home Sunday. We had booked a week stay there when I was scheduled for surgery, which I luckily didn't have to get, but we decided to put Charlie in for 4 days anyway because she has a lot of fun there. And, since we have officially entered hibernation season, we'll take any 'safe' excitement we can get! Anyway, as usual all of the staff have made us feel at home and Charlie is having a blast, but I can't help but focus on the kids that don't have much time left. Last night a boy who is obviously very, very, ill smiled at Charlie when he was being pushed by her in his wheelchair. Something my angel was doing caught another angels eye and made him happy for a minute. And, despite everything else that was going on with him, he could STILL smile and appreciate a moment. How do these kids do it?! After the boy was wheeled away I forced my bottom lip out in an attempt to blow upwards and into my eyes to dry up the tears that were beginning to form. I honestly feel that ever since Charlie was diagnosed I walk around surrounded by 'moments' and 'life lessons', trying to find meaning in everything and every moment with Charlie, and it's a mixed blessing. On one hand I feel fortunate that I can really appreciate and take in a moment, but on the other hand, sometimes I really don't want to think and ignorance is bliss...but my brain never shuts down! I'm sure even Sylvia Browne wishes she could turn off the paranormal matter how many times it got her on the Montel Williams show!

After I left Canuck Place, no amount of eye blowing was gonna stop the flood. I cried on my drive to work, got it together for a bit, and then again when I got into work. My co-worker was smart enough to know it wasn't a good idea to hug me or I probably wouldn't be able to reign in the tears again, which I fortunately did pretty quickly, and I kept it together for the remainder of my shift. But, when I got off work I called Matt from the car to tell him how scared I was feeling and how I just know that I won't be able to handle Charlie dying and how I felt so sad about all the other little kids who were sick. We talked and he told me how the boy that smiled at Charlie was really sick and had made a wish to have Christmas early (I'm assuming because it doesn't look like he'll make it until Christmas this year) What Matt told me next blew my mind...he told me that they were bringing in snow machines, Santa and his elves, loads of his family, presents, and Christmas dinner...just doing their best to make the perfect December 25th happen for the boy. And I broke down again. It's situations like these that double the size of your heart while simultaneously breaking it in half. So beautiful and so sad all at the same time. Sure enough when I went into Canuck Place the next day, It was snowing. And, when I left several hours later, the men responsible for the snow were still at it. It was so cold outside yet these men braved the elements to make sure the boy had his white Christmas. Just. so. amazing.

I have so much more to say, but I'll say it in another post. Right now, I just want to be thankful for what I DO have.
Bless you little boy. Thank you for the moment.

Tuesday, November 22, 2011

Happy 29 month birthday Charlie!!

(Charlie and mama cuddles)

Happy 29 month birthday to my beautiful Charlie. I love, love, love you...never leave me sweet pea! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Monday, November 14, 2011

F*ck you SMA!

(Charlie, the bravest girl I know, 28 months)

Charlie just got new splints for her hands. It was suggested that we put them on her overnight. But, she's a thumbsucker and she'd never have it. So, we put them on her during the day instead. And, of course, it's just one more thing my angel puts up with and excepts. Problem is, I can't. I took this picture after I prepared Charlie for bed the other night. I stared at her with tears in my eyes, RAGING inside my head. This is how she sleeps EVERY night...splints (hand ones during the day), breathing machine, suction machine, feed pump, and a leg skirt to avoid her legs flopping open froggy style which can cause hip problems. Look closely. She is STILL smiling through it all. I look at this picture and I think to myself, why?! F*ck you SMA!

Friday, November 4, 2011

Happy (belated) Halloween!

I love, I mean err ummm, Charlie loves to play dress up. Here are just a few of her Halloween looks this year...

My little hunny bunny

My little Peg Bundy

My little barbie girl

My little senor-ita