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 (http://thegsf.org/home/) 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 live...it'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!