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.


  1. You are so right on. I'm a mum to a healthy toddler and I still have my mama bear instincts about him and all of the things that keep him healthy and safe. I can only imagine the amplitude of my roar if he had an increased risk of getting sick.

  2. Cherie I would stop trying to consider every Tom, Dick & Harry in the world from now on. I understand your feelings but I think you have enough on your plate with Charlie's condition to deal with, so please try to stop worrying about what other people may or may not think.

    When you are in a restaurant I would tell the server up front you have a child with extreme special needs, explain what those needs are and ask to be seated in the most private area there is. Then, do whatever it is you need to do to care for Charlie.

    When people make comments such as they bet Charlie is running about all over the place when she's at home, please do yourself a favour and be up front with them.

    Most people are good people, they don't mean to say things that make you feel sad or uncomfortable. Just tell them that you wish they were right but that Charlie has an incurable condition. Sure, they may feel badly that they said the wrong thing, but so what? They'll get over it & perhaps learn a valuable lesson about things not always being what they appear to be & to perhaps not make comments to strangers they don't know.

    As far as sanitizing your hands after shaking hands etc. just tell people before hand that you either a) can't shake their hands & tell them why, or b) tell them you'll have to use sanitizer. Also remind all your friends that you don't mean to appear to be nagging them about sanitizing & hand washing, tell them it's become second nature to you & that you don't even realize you're doing it anymore. They'll understand & if they don't, too bad.

    No matter how had you try, you're not perfect. You won't get every germ, it's impossible but you are doing a great job!

    Sorry if I've been long winded but please try to not be concerned so much about others thoughts & feelings. It causes you unnecessary stress & you don't need that.

    Hugs to you!!


  3. We have a preemie with serious lung disease and we're busting out of the NICU next week, suction machine in tow. You're right, it IS loud. I'm not looking forward to using it. And I hate the germophobe I've become since my daughter was born. I can totally relate to this post. But you should be loud and proud about whatever your little angel needs!

  4. Hi there,
    I just wanted to let you know how much I enjoy reading your blog. Your honesty, insight and excellent writing skills. I keep coming back for more.

  5. I hate how strangers think they can touch babies how ever they want. I dont go up and touch people on their faces, but if you are a baby its fair game. People need to have some sensitivity and stop touching people(babies) they dont know.

  6. Thanks for the feedback ladies! I'm proud to say I get louder and more annoying with each passing day!:)
    And baby Nayana, you're so gorgeous! Congrats on busting out of the NICU!

  7. Wow you have a lot on your plate don't you. Our son Trace looks like a normal five year old, he has CP and Asperger's. I felt like you did, in fact sometimes still do and even resorted to not leaving the house for fear he'd have an episode or melt down and make someone else uncomfortable because his shirt didn't feel right or someone looked at him the wrong way.

    I have learned and am learning like you, to be strong, his voice, his protector and his biggest fan. I try not to give a crap what others think or even say and to keep him healthy means washing, cleaning, living in a safe place.

    It's not always easy but the fact you realize that you feel this way is one step closer to you being where you want to be.

    Congrats on your Vancouver mom nomination. I'm a fellow nominee dropping in to say hello. Glad I did!

    Hugs to you all :)

  8. We've been talking about your lovely blog over here :


  9. Hi Cherie. I am now glued to your blog posts. Congratulations on your Vancouver mom blogger nomination-truly incredible and inspiring. Loved hearing that Charlie is talking. She is absolutely beautiful- a definite blend between you and Matt. Sheryl.

  10. oh yes..the dreaded gtube alarm!! i always hated that constant high pitched beeping!!! very annoying for sure! not to mention having to go through the flushing process.. i guess i can say to an extent what its like to have a bunch of eyes on you at any given time. ( i work/and live with children and adults with various abilities. part of me hates the attention (i dont like to be center of attention) however it has also taught me to BE comfortable... and live and let live. i often find myself explaining, or standing up for my guys n gals often kids will gawk and stare wich doesn't bother me as they are simply curious i use this time to educate as much as i can so that they grow up understanding and respecting that everyone is different. i always think hopefully their shushing parents are in earshot and learn a thing or two themselves ;)
    just focus on your lil darlin and if you have the time to enlighten, i highly recommend it!
    keep doing what your doing with Charlie, her positiveness and sunshine-ing face, always in every pic leads me to believe...that she has one increadible mama!

  11. Your daughter, Charlie, is a beautiful girl. I love the pics you post of her. *sweetness*

    I was looking forward to meeting you at the Mom Bloggers Gala but unfortunately, will be a my daughter's Dance Competition in Whistler.

    I've added myself to your Google Friend Connect and to my RSS feed so I can read you regularly.

    I love the design of your blog. Happy Mother's Day!

  12. I can't imagine how frustrating it must be to have to be so concerned about colds. I swear from fall to spring everyone in Vancouver has one =( The little boy I watch has a cold about 75% of the time =(

    I'm finally getting around to checking out and following all of the Top 30 Vancouver Mom Bloggers! I hope I'll see you at the event tomorrow!

    Monika @ Aias Dot Ca

  13. "I'm proud to say I get louder and more annoying with each passing day!:)"

    LOL! Good for you Cherie, you go girl and don't worry for one moment about it. ☺

    I agree with the poster who said babies are fair game for cheek pinchers. It's about time people got the message 'hands off' babies! I don't know where common courtesy has gone, at least ask first!

    I'm proud of you Cherie!