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 me...it 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 thought...so 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 hit...man that affected me... a montage of the past couple of weeks events flooded my brain. "With a little perseverance you can get things done...so 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.