Thursday, April 1, 2010

New shoes.

(Charlie, 9 1/2 months)

It's 11:30 pm and I've been ambivalent for the last hour about whether or not I should write a new blog post. One part of me says " YES, do it, get it out!" And one part of me says "NO, don't do it, don't open that can of worms before bed!" But I've caved because, even though it often stings to type out and rehash my day and my feelings, I get it out of me and get rid of that electric sensation I'd otherwise have trapped inside of me, coursing through my veins.

Heavy situation or not, I've never liked the night (funny, since I worked at a nightclub for years). I don't really know why, but I think it's because often it just feels like one more day in my life that slipped away from me when I wasn't paying attention. I get a creepy feeling in the pit of my stomach when I see news anchor, Lloyd Robertson come on the late news; anybody who knows me knows that I cover my ears, close my eyes, and change the channel ASAP if I catch a glimpse of Lloyd's overly powdered and rouged wrinkled face or hear his monotone robot voice. Aack! I feel sick and sad just thinking about it.

Matt just got Charlie down to sleep and now he's in his office working on music...he's been feeling really inspired and spends almost all of his free time doing it, it's one of the few things that makes him happy lately. Since we first met, Matt and I both learned that neither of us functions well under stress, I usually react to stress by giving up and going to bed and Matt has a temper and snaps at the little things when he's stressed. The good thing is that we are both aware of our faults and we are really working on them because snapping and sleeping just aren't options for us in this situation. And considering the fact that we really haven't even began to see the depth of Charlie's SMA yet, if we go snapping, sleeping or giving up now, what the hell happens when we're REALLY needing to pull strength out of ourselves. So, we are working on getting as mentally and physically fit as possible to fight off the evil we will be introduced to down the road, which we may be on our way to meeting next Friday when Charlie gets her g-tube surgery.

Charlie was fitted for some splints this past Wednesday. I had a choice of colour and picked hot pink for her. Does it make me insensitive or heartless if I say she looks cute in her splints? Only because they are hot pink and she wears them with a huge smile. Not much fazes that little angel. She seems to be in pretty good health lately, but there is a definite decline in what little head control she had can tell she's becoming more and more paralyzed. Sometimes I look at her and I can see it in her eyes and it makes me feel claustrophobic for her. It's so painful to watch. So unbelievably painful. And i can't do anything about it.

It's this time of night when my brain races and files away the days memos and my anxiety sets in...the fear of the future, questioning my strength and sanity, worrying about Matt and wondering how he's really doing. Are we in denial right now? Do we really get what's going on? Are we using our imovies, pictures, music, and blogs as escapes? But, luckily before I have a chance to answer all of these questions, i fall asleep and wake up next to the most beautiful red headed princess who has the biggest smile on her face and is so happy to see me, and I forget what I was even worried about in the first place.


  1. Cohen saw this photo as I was reading and started shouting "Charlie! Charlie! Dance!" He thinks she is dancing with her fancy new shoes! Just keep seeing the beautiful moments and they will help to carry you through.

  2. Cherie, there will be days that maybe you can't pull the strength out of yourselves. God, I have those days and I need my Mom's help more often then not - just to make adult decisions! On those gray days, please lean on your network of friends and family who want nothing more than to be there for you guys.

  3. Every girl likes a new pair of shoes-good choice on the colour Mom!! <3

  4. WOW!! I envy your strength. you are an inspiration to me as a mother and a strong miraculas woman. I found myself teary eyed and speechless while reading your private intimate thoughts, and have tried to imagine my own reactions if faced with this news about my own daughter. I can't, I honestly can not. I asspire to have your dedication, patience, and strength with my own daughter. Charlie is blessed to have such amazing parents. Thank-you for sharing your story, I wish your family all the best. xooox