Friday, January 20, 2012

What else do you do?

(Mama & Charlie 2.5, getting ready for bed)

For the past 6 weeks I have been working 2 jobs. One at a dance/fitness studio (which I've been at the past 7 months) and one at a restaurant. After a little soul searching I decided to quit the dance/fitness studio job. I love my employers and the members, but I just think it is time for me to focus more on Charlie and on what REALLY makes me tick. My plan for the next couple of months is to smother Charlie with love until It forces her to actually say, "OK mom, give me my space already!" I also plan on completing some fitness courses I've signed up for and training for the BMO full marathon which is this May. Im looking into the Gwendolyn Strong Foundation ( so that I can raise funds for SMA in the process. I've actually found a big group of people who want to be a part of the team as well! So yeah, that's my short term plan.

When I was working at the restaurant a few weeks back I bumped into somebody I used to know. We chatted a bit and I told him about Charlie..."Yeah, she's sick....well, they initially gave her 3 months to's been difficult, but she's amazing..." that sort of thing. After I mentioned that I was only working there a couple of days a week he asked, "What else do you do?" Ummm, pardon me? What else do I do?! What else do I do?! I forced a smile and mentioned the dance studio. But what I REALLY wanted to say was, "Ummm, I inject medication/food into my daughter through a tube in her stomach, I suction saliva out of her mouth every 5 minutes so that she doesn't aspirate or choke on it, I lift 30 pounds of dead weight all day long, I exercise her muscles so they don't stiffen and lose their mobility, I take my daughter to specialist appointments where they marvel at how far she's come for such a dark diagnosis, I wake up repeatedly throughout the night to check that her bipap (breathing machine) is attached properly and to turn her because she can't turn herself to avoid getting bedsores, I hibernate in the house with her so she can avoid getting a cold because it could kill her, I run and workout to relieve stress naturally...." I mean, sometimes I think Charlie's stuffed animals should come to life every morning and give her and I (and Matt) a standing ovation just for getting out of bed! And somebody has the audacity to ask me, "What else do you do?" Now, I realize he didn't mean it that way, but really, why is there so much pressure on mothers to do more?! When I was 13 I had a job at a hair salon where I washed old ladies hair. Did you know that when you get old your head gets covered in soft spots similar to a newborn babies fontanelle? I didn't. EVERY time I washed Elenore or Silvia's hair I'd worry my fingers would puncture a soft spot and I'd touch their brains (super stressful at 13!). Being a mother is 100 times more stressful than worrying about puncturing an old ladies soft spot! When will people REALLY get that there is no job harder than being a parent! Healthy OR sick!

In a way though, I am used to this life, It's all I know. So, just like many of my closest girlfriends, I am hard on myself and think I should be doing more, more, more. That's also why the "What else do you do?" comment affected me. Because despite everything, I long to be more than just my daughters nurse. Is it societal pressure? Is it personal pressure? I don't really know, but I think it's a little of both. I get jealous of other peoples education. I don't feel done academically. I want more. But, I just can't immerse myself in school right now because I never know what's around the corner for Charlie. I would hate to either a.) start school and put most of my focus/energy on that, and miss out on Charlie and something bad happens and I never forgive myself. Or b.) start school, Charlie gets a cold and is hospitalized for a month (or worse!), and I fall behind and can't finish my course/program. I feel like I don't really have a choice in the matter, and that makes me feel stifled and suffocated. Whenever we are at Children's hospital Charlie's main respiroligist always reminds me that SMA families lives are always at the mercy of this ugly disease and lives are put on hold because of it. I agree. BUT, at the same time, there is NO other option for me and Matt! We love Charlie, and we wouldn't want life any other way if it meant without her! Looks like we'll just have to get creative then.

Charlie turn 31 months in 2 days. She is still nothing short of amazing to me. And getting more and more so everyday. We love you Char. Happy Birthday big girl!


  1. i am happy to see you are going to raise money for gsf. while you can't attend school for fear of not being able to complete it, training for a marathon and doing some fitness classes will help you find some time for yourself. being a parent is hard and stressful and for you it's that times a thousand. you are doing a fantastic job. keep reminding yourself that.

  2. Cherie, I love your thoughts here on motherhood in general...the feeling of not being enough
    I realize that your situation is exceptional...very exceptional and I honour that
    I think there is a societal pressure to be more...more more more
    there certainly is NOT the pressure of "You are enough"
    Maybe him saying that to you gives you an opportunity to look at those feelings and really address them and then kick their ass out of your reality!!! Because honey, you are more than enough, you are a ROCKSTAR!!!
    And by you doing that, you give permission to all those moms around you to do the same.
    School is so all consuming, it would take some much from you and Charlie....but I think you already know that.
    I love how you started this post and your plan to just smother Charlie with you love till she says enough!!! Every mother should be doing this....I love that you are gathering the courage to give yourself permission to do that.
    What an inspiration you are.
    Keep smiling mamma

    Love and Light

  3. Cherie, I think you are AMAZING!! You continue on under circumstances that would completely immobilize many of us. I agree that society seems to think young women should be jugglers extraordinaire, and you know what?? You do and you ARE! You do what most people can't even conceive of, so don't ever, EVER sell yourself short!

    You are the most amazing woman, and I both respect and admire you. Charlie couldn't have a better advocate, a better caregiver or a better mother!☺

    Hugs to you all!

    Linda xoxoxox

  4. Cherie,
    you are the most amazing Mom! Please dont ever think you are not doing enough. You do more than any Mom I have ever known, myself included. Two jobs, on top of the 24/7 care of Charlie, plus the marathons & stuff you do to raise money & awareness... These things are HUGE! Give yourself a pat on the back! You are doing great, Charlie is doing great & you both glow with happiness.
    Big hugs.
    Janelle xoxox