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!

Tuesday, January 10, 2012

Never Surrender.

The past couple of weeks have been a liiiiitle crazy...or I should say, this past couple of weeks I'VE been a liiiiiitle crazy. Matt and I spent some of the holidays together with Charlie and I found myself getting pretty emotional and sentimental. Let's just say Matt had to deal with a pathetic Cherie for a few days there...sorry about that Matt! I think it was an accumulation of several things going on at the time that set me off...the anniversary of Charlie's diagnosis, feeling overwhelmed with making sure all of Charlie's needs are met as single parents, and of course, my BRUTAL pms. Again, forgive me Matt.;)

Speaking of crazy and overwhelmed, I've been feeling pretty guilty lately that after all of Charlie's needs are met...stretches, getting her dressed (this is a difficult feat with a limp body that provides zero resistance) toothbrush/suction, gtube flushes, setting up her feeds, bipap, bathing (which is downright frightening now because she's so big and slippery) her appointments, and getting her in and out of her stroller, and in and out of the van and the whole strap down procedure, I'm tired and too exhausted to have 'fun' with Charlie. And MY BACK HURTS! Lifting 30 pounds up and down and around all day is taking its toll. I usually end up spending my days singing to Charlie. I got her a Barbie stereo for Christmas so I pulled out all of my old CD's (does anyone else miss CD"S? I miss having a CD stand to peruse and cover art with lyrics to read/sing along with!). Anyway, Charlie is really into Edie Brickell right now...all I have to do is press play on that CD and she smiles at the first hint of it. I sing this song 'Circle' to her over and over, and she hums along. And I think to myself, "If she dies someday, I'll never be able to hear this song again without hyperventilating and passing out." I think that about a lot of things. A lovely lady named Lindsay, whom I've never met sent me a necklace with mine and Charlie's names engraved on it about 1 1/2 years ago. I almost never take it off. Charlie likes it when I bend over her and slowly drop the pendant in her tiny open hand. Its not easy for her to grasp objects, so she gets all proud when she gently wraps her fingers around it and I pull away from her. Then I make hulk sounds and pretend I have to tug hard to break free of her strong grasp. We do this over and over. And while we're playing I can't help but think about 'later' and how this necklace will always have that memory attached to it. And I wonder If it will kill me to wear it when/if she's gone.

There are good days and there are bad days...Charlie and I were going to get our haircut the other day, I got her ready, lifted her into her stroller, brought her out to the van, got her in, strapped her down and drove to Yaletown, hurriedly suctioning her at every red light along the way. When I got there I had to park nose in to one of the spots so that I could pull the ramp out to get Charlie out. I unstrapped Charlie, pulled the ramp out, pulled the stroller out, closed the van up and dropped 6$ into the meter. A man who worked at one of the restaurants came running out saying, "hey, you can't park like that, you'll get a ticket." I snapped back, "My daughter is HANDICAPPED, how do I get her out then?!" He said, "Hey, I'm just trying to warn you." in a 'don't shoot the messenger' sort of way. I thanked him (under my breath) and thought, "fu*k it, try me parking Nazis...there are no signs saying I can't park this way, and I'll fight the ticket if I get one!". I walked a couple of blocks in the pouring rain, got into the salon, where I found out there was a mistake with my appointment and I couldn't get in. I was livid. I couldn't hide my anger. I said, "You don't know how hard it was to get her out of the house today." with a frustrated and defeated look on my face. But, it was an honest mistake and there was nothing we could do about it. So, I turned around, walked back to the van, pulled the ramp out, put Charlie in, strapped her down, and got in the truck. I could literally feel the rage rising up in was about mid chest at this point, and rising FAST...soon my head would explode! Not at anyone in particular, but just at everything. Why does it have to feel so hard sometimes? I'm fu#king tired I tired. I started the van, and gave Charlie a suction before we headed out. It was then that I thought, "How in the hell will I get out of this spot?!" That's when I realized the 'no parking nose in rule' made sense. That same man from the restaurant came outside and asked me if I needed help backing up and he kindly directed me out. Charlie and I were on our way back home. I turned the radio on and Corey Hart's 'Never Surrender" juuuust started. Really?! Really?! And then guess what happened? I CRIED! THE WHOLE WAY HOME! To Corey Hart's profound and moving song, 'Never Surrender'. Yes I did. And I pictured the video the entire time...Corey running away from home in the pouring rain (I was also in the rain!) cold and popping up the collar on his leather jacket. And, when that sax solo that affected me... a montage of the past couple of weeks events flooded my brain. "With a little perseverance you can get things if you're lost and on your own, you can never surrender...". It was obvious that Corey understood me. I got home, calmed down, and started fresh...all thanks to Mr. Hart. I'm sure its not the first time he's saved the day.