Sunday, April 24, 2011

Mine. All mine.

(Charlie, 22 months old, with her baby)

The other day I had a discussion with my friends about my incessant, irritating need to either keep reminding them to wash their hands, or asking them over and over again, "did you wash your hands?" or "who's glass is this one?" or "are you sick? why are you coughing?" My friends know to avoid me if they are sick, they never risk it, and they always wash their hands until they bleed when they are in my company, but I still can't stop myself from constantly nattering my obsessive compulsive thoughts out loud to them...for some reason I just have to say it out loud, over and over and over again before I can relax a bit. I can't even stand myself sometimes, so I can understand how it might get on their nerves or get a little old to them, but thankfully they are understanding and bite their tongues and put up with me.

When Charlie was diagnosed we were told to be extremely careful with her and to do our best to avoid colds because it would be a cold turned pneumonia, or that caused a mucus plug, that would ultimately be her end. The pressure to keep Charlie healthy felt like we were constantly playing an intense game of Operation that Charlie's life depended on, trying not to touch the sides with those tweezers, while trying to retrieve that skinny little leg bone...just a brutal amount of pressure to not screw up! I mean, Even the healthiest people get sick at least a couple of times every year...we were left to wonder, "how the hell do we avoid the unavoidable?!" We became INSANE with our tactics to avoid sickness..and our anxiety was through the roof because of it. I'd lay in bed at night and suddenly remember how I forgot to sanitize my hands after touching the menu at the restaurant that day and be frozen with fear, wondering if I'd just opened the door to the beginning of the end. I'd hold my breath for the next 4 days, thinking every sneeze or scratch in my throat was that menu's fault.

Matt and I were also having a hard time finding our voice when it came to strangers touching Charlie. The day Charlie was first diagnosed, after we got out of the hospital, we went and met our family at a restaurant (I know, was a mistake, we just cried and cried at the table, until we realized we needed to go home and be left alone to rifle through the terrible news we'd just been given) but, before we lost control of our emotions, a server came running over and literally plucked Charlie from my arms and bounced her on her hip...all I could see was the word GERMS! in florescent green escape her mouth and find its way into Charlie's. But did we say anything? No. And we beat ourselves up for it afterwards. Situations like this happened many times before we decided we didn't care who's feelings we hurt or how uncomfortable we made a moment anymore...making nice and being polite wasn't worth the possible
consequences. We have learned that we can't control what others do but we can do our best to control our own environment, and if that means sanitizing our hands right after we shake hands with you, before you even walk away, so be it. Our anxiety has since dissipated because we have become more confident in our approach to protect Charlie.

Now that we're finally confident in making situations awkward, we've been working on using Charlie's machines in public without feeling like we're ruining someones lunch. Whenever we leave the house now it's almost guaranteed that Charlie will be hooked up to her feeding tube and need a suction or two while we're out. It's only been in the last couple of weeks that we've pulled out the suction machine in public...and it's LOUD, it pretty much sounds like we brought our blender with us and are mixing up margarita' there is no sneaky deaky suctioning going on in public. It's not the sound so much that makes me uncomfortable...I just feel like I might be ruining someones dining experience if they hear the sound, look over, and then see me suctioning saliva out of my child's mouth. I know I shouldn't care, but at this point, I still do. As for Charlie's feeding tube, yesterday we were at a restaurant and its alarm was going off telling me it was order to get it going again, I had to unhook it from Char's belly and run some milk through it onto my napkin and plate...again, I just feel like I'm drawing unwanted attention to us and possibly ruining somebody's dining experience. I KNOW, I shouldn't care, but I do. It bugs me that I do...I'm not embarrassed, I'm just uncomfortable with the unwanted attention and people who don't know Charlie's situation and are left to assume or judge. But, I feel that I owe it to Charlie to be loud and proud of everything she is and feel like I'm letting her down when I don't speak up for her.

On Friday I took Charlie for a walk to the Aquarium. On our travels I stopped at the Gap, Safeway, and Caper's. Charlie was looking pretty cute that day in her fur coat and sparkly shades so she was attracting a lot of attention everywhere we went. I was told three times that day that she was just "so calm" as well as, "I bet she's just all over the place when she's not sleepy." I just smiled and nodded. The woman repeated herself again, "I bet she's just all over the place when she's not sleepy...right?" I then muttered, "nah, not really, she's sick." And, it got quiet and uncomfortable and that was that. It's not the questions that bug me, (again!) it's me not wanting to make people feel uncomfortable with the truth of the situation. I love that Charlie looks just like any other beautiful almost two year old, and I know that's why the regular run of the mill, from one mother to another, questions...but, sometimes I wish it was just all out in the open so there was no weirdness, and we could all just move along now, and instead focus more on the little miracle I get the pleasure of calling mine...all mine.

Friday, April 22, 2011

Wednesday, April 20, 2011

Happy 22 month birthday Charlie!

(Charlie, almost 22 months old, enjoying tub time)

In two days Charlie turns 22 months old...and, in two months, two years old! I love her, I love her, I love her SO much! I hate this situation we're in but I love that because of it I NEVER take anything Charlie does for granted...everything she does is AMAZING and nothing short of a miracle! Charlie is now saying ball, bubbles, more, mama, dada, who's there, uh-oh, and bye! And now because she's been tasting foods, every time we're out a restaurant she'll hum mmmmmm the entire time we're eating, over and over, not so subtly hinting for a taste. We don't really like to feed her in public because it promotes salivation and she can choke if she's not laying down, so we look like big meanies eating in front of our famished kid that's begging for a bite. But, we don't mind how it looks, we actually love it, and smile with pride, we never ever thought we'd see this day, so she can mmmmmm all she wants! We never thought she'd really talk either, and to be honest, as much as I know that SMA does not affect the brain, It's easy to forget that and think that she doesn't understand what we're talking about or what's going on because she can't really physically reply to us or point at what she wants. When Charlie does something new for the first time, my heart feels like it's going to explode and spew confetti out of my chest...I just want to throw my arms up in the air, scream HALLELUJAH and do a rain dance or something. This kid is sooooo (for lack of a better word) fu#*ing amazing!!!

Sooooo, I found an apartment and I move in ten days. It's bittersweet. Matt and I have both been uptight and I know its because we're worried about not waking up with Charlie every single day. Just thinking about it now breaks my heart, bad. Even if it sounds lame and co-dependant, she's my best friend and pretty much the only person I wanna spend all of my time with. We need each other. But, I know Matt loves her just as much as I do and we're gonna work out a plan that works best for all of us. We're only going to live minutes away from each other so distance won't be an issue. It'll all work itself out, we're just afraid of the unknown.

I recently did the Sun Run and a run for prostate cancer and have plans for another 10k as well as the Canuck Place Adventure Challenge again this year. Since training for the Adventure Challenge last year I've become completely smitten with fitness and group fitness activities. I'm in a running group with a couple of girlfriends, and I go to Canuck Place every Thursday for Crossfit with other parents in similar situations, although we never really discuss our kids, it's just our time to work on ourselves, and I really like and appreciate that. Exercise makes me feel so good in such a stressful time, If I miss a day I feel like I'm melting and worry that I could slip into a funk...I'm addicted to the endorphins. When Charlie was diagnosed something snapped in slogan became: "We Don't Have Anything If We Don't Have Our Health"...and it's true. Who cares how much money you have or how big your house is if you're sick? What good will it do you? That and I need to be fit to properly take care of Charlie...she's about 24 lbs now and cannot support herself at all so just transferring her or putting her in the stroller or tub requires strength, never mind when I wanna pick her up to dance with me! Charlie comes running with me too and she LOVES it! I think she feels like she's running...she sings along to my ipod the entire time and grins from ear to ear, her big front teeth's so awesome that we can have that together. I'd really like to work something out where she could come bike riding with me too, but I'm not sure how that would look because I have to be able to keep an eye on her at all times, but I'm working on it.

Life is changing, and it's scary and stressful. BUT, Charlie's happy, growing and thriving, and that really helps keep things in perspective. We're so lucky to have her.
Happy Birthday Charlie Barley!! I love you to the moon and back!

Tuesday, April 19, 2011

Thank You!!

(Charlie 21 months, showing of her pretty toes)

This past Thursday we held a fundraiser at Republic (a bar downtown that Matt works for) with the proceeds going towards a van and its special alterations, such as a lift, for Charlie. We had sent an open Facebook invite out 4 weeks in advance and the outpouring of compassion and support was overwhelming! At the urging of people who could not attend, Matt set up a paypal account and the donations just kept coming in! People we have never met "feeling moved" to contribute. We were already half way to our goal before the fundraiser even started! Matt's employers were amazing enough to give us all of the proceeds from the front door that evening, which was enough to make our goal and purchase the van! We want to thank everyone who donated and/or came out to support us/Charlie that evening, including the Donnelly Group, Matt's employers, who provided the space, the staff, had thank-you cards made for us, and supplied free drinks with everyones cover charge, with 100% of the proceeds going to us. We have been humbled by everyones generosity and selflessness.
Thank You!!