Wednesday, March 9, 2011

Mad about you.

(Charlie, 20 months)

There's a look we've all caught a loved one giving us before. It's a look that's not necessarily intended for us to see, but we consider ourselves fortunate if we do. It's that look that gives you a quick glimpse inside their psyche, where for just a couple of seconds you can see yourself through their eyes. I'm talking about that look that shows you just how much you are loved...the one where you can actually feel how proud of you they are...that look that instantly inflates your ego and makes you feel so completely loved, admired, and appreciated...I get that same look from Charlie about 100 times a day, except she lets it linger and it's completely obvious that she intends for me to see it. Charlie will just gaze directly into my eyes for minutes at a time, almost daring me to look away first, and I can just feel how much she loves me. I swear I can almost hear her professing her unwavering love, admiration, and appreciation for me through her eyes, and it is seriously the best feeling in the world! It's pretty much all I'll ever need to keep on keeping on through the rough spots. I don't ever want to live without that feeling, it's one of my favorite parts of being her mother.

Well, On Tuesday at 3 am we headed to Children's Hospital because Charlie's new g-j tube was plugged. No matter what Matt and I tried, it wasn't budging and we couldn't get any food to her. At the hospital they used a special drug to unplug it and then kept Charlie there overnight to monitor her. Matt and I were lucky enough to both be able to stay in an empty isolation room that they brought two cots into for was actually the best set up we've seen in all of our days spent at the hospital...and just feet away from sleeping Charlie. Everything got worked out and we headed home at 8:30 am that morning.
Despite that blip, Charlie has been really healthy lately, and is getting stronger and stronger everyday. She is now turning her head in both directions...this is new and IMPROVED! This isn't the usual course for SMA and as much as I'd like to know why she is progressing rather than regressing, as is the usual course of the disease, I don't really care as long as she's healthy...let's just keep calling it a beautiful miracle. In my heart I know Charlie will be with us for some time to come...I just feel it.

Charlie has been doing so well and I should be feeling content and relaxed, but instead I've been feeling a little rough emotionally. I've just been overwhelmed with my responsibilities as a mother and a caregiver of a high needs child and its been manifesting itself as major anxiety, panic, and nightmares. I've been worrying about a whole bunch of things I shouldn't be worrying about...yet I am. Fires, earthquakes, car accidents...I'm very clumsy, what if I trip while carrying Charlie from room to room and her head goes flying? You name it, I worry about it. There just isn't any room for error, and that scares the sh*t out of me!! I think I'm just struggling to find my confidence in my ability to always properly take care of Charlie, especially when Matt and I will be living separately in the near future and it'll be more of an individual effort on each of our parts to keep Charlie healthy and safe. Just feeling pretty freaked out I guess. I do realize though, that change is always scary, and it'll all figure itself out in time. Yup, trying to stay strong and positive here.

In just over 3 months we'll be celebrating
Charlie's 2nd birthday. Unreal.
Her nurse keeps telling me to start the planning
now, cause it's gonna be a BIG one.
And she's right, it will be!
Get ready to party hard Char!


  1. Head turning?! WHAAAAT? Such wonderful news.
    I am so excited to celebrate the big 2 with you, Charlie! xo

  2. This brings tears to my eyes!! Such great news and you know what, Cherie; you are an awesome mom, don't ever doubt yourself!! You can do it!! Xox

  3. It warms my heart to hear that Charlie is making such amazing progress. Great job Cherie, you must be proud! You are an excellent Mother and I look forward to your blog posts.

  4. I love how you describe the way she looks at you.
    Words escape me.
    I echo everyone are doing an amazing job, an important job!!!
    Almost THAT is something to get down and party over!!!

    Love and Light

  5. so exciting with the head turning and almost two! beautiful pic :) and prose about her love looks. woo hoo for motherhood rewards

  6. A beautiful posting Cherie! Some people might not be able to say they know how you feel but I do. I know exactly what you mean about stressing about things that we shouldn't but like you said, there isn't any room for error. People think I get a little overly protective with Gemma but they don't understand the seriousness of a simple mistake. After hearing about the Japan earthquake it has caused me to realize how scary things would be during a natural disaster, my daughter relies on electricity to survive (ventilator, humidifier, suction machine). There are so many things to worry about with a special needs child. You are doing an amazing job and Charlie is an amazing, special little girl that is prospering because of your love and care. Take everything a day at a time, that helps me not get so overwhelmed. xo - Amanda