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, weird...it 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's...so 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 plugged...in 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.