Saturday, 16 March 2013

Getting Off Of My Virtual SoapBox

Over the past few weeks I have been feeling extremely low.

Inadequate. Overwhelmed. Sad.

I have been struggling with daily run-of-the-mill challenges that all of us as parents face.  Sophie is challenging me like no child of mine has and I am feeling like I am failing her as her mom.  She has been dealing with a bladder infection brought on by not listening to her body and by holding her pee for just wayyyy to long.  This has caused me to be extremely frustrated and I admittedly have not been handling her accidents well AT ALL. Thus she has had a huge regression and down right refusal to go pee, or poop on the potty.  Olivia worries about things that not many little girls her age do.  Her current worry is dealing with anxiety over falling asleep.  Every night she worries that she won't fall asleep before Mickey and I do. Her brain is working a mile a minute constantly.  She is highly sensitive to her thoughts and her surroundings.  It can be very exhausting and frustrating to parent her at times.  Both these amazing little girls are pushing me to the very limits of what I feel I can handle as a parent.

Lately I have been reading tons of blogs and tons of articles relating to disability and mostly relating to Down Syndrome.  I want to learn, I want to read other parents and family's perspectives.  My Facebook wall has changed from ordinary, everyday stuff to everything to do with Down Syndrome, whether it be an article I find interesting or cute inspirational pictures. I knew that I was doing this and my reasoning was that I was trying to show the world (basically just those who are my Facebook friends, soooo not really the world...) that Down Syndrome is no big deal.

However, somewhere along the way I have become unbalanced.  Stella having Down Syndrome is NOT my main focus in life.  Sure it's a big part of my life but so is diapers and a three and a half year old who keeps shitting on the carpet.

Yet if someone read my facebook page they may think otherwise.  It's kind of like talking about religion, sports or any thing else.  If you talk about it in excess, people tend to STOP listening and just get turned off.  You know, the inward roll of the eyes, the annoyed "She's at it AGAIN. Jeeze we get it already Anna!"

I have been reading and researching too much. I have been reading too many posts about mothers who choose to terminate due to Down Syndrome.  I have been reading too many posts from those who are having to deal with hurtful comments from strangers and friends alike.  I have been reading too many posts about the challenges some families are facing when it comes to getting a fair and inclusive education for their child.

Don't get me wrong, these facebook groups that I am a part of are filled with happy moments, wonderful experiences and beautiful pictures that parents share.  However, I have seemed to start to focus on all the events that COULD happen to us as a family, and that COULD happen to Stella.

I have been on edge waiting for the other "shoe to drop".

Waiting for someone to say something hurtful about Stella (so I can punch them in the face with my powerful words of wisdom).

Waiting for someone to call her a mean name.

Waiting for someone to look upon us with pity.

I know, crazy lady right??

Not one of these things has happened to us yet.

I have been focusing too much on one chromosome. I have been trying too hard instead of just "being."

So starting now, right this very second,  I will stop asking Sophie every 5 minutes if she has to pee or poop.  Even if I know, beyond a shadow of a doubt, that my little stinker clearly, CLEARLY has to go to the bathroom.  I will NOT yell at her to go, I will not insist she goes. I will allow her to listen to her body, even if that means I have to clean up more shit off the carpet.

I will continue to give Olivia coping skills to deal with her anxiety, and perhaps even look into some counselling, because I have run out of ideas.

So for now, my soapbox has been neatly tucked away. I will still share information or pictures relating to Down Syndrome that I find interesting or inspiring but I will stop trying to "sell" Down Syndrome, to try and convince people that Down Syndrome is no big deal. I know that Stella is so much more then her extra chromosome and just sharing our life either on Facebook or via my blog is proof enough that Down Syndrome is not the end of the world, but the beginning of a whole new one.

No matter what, my McG Girls are my life.


  1. Great post Anna!! I too had to find my balance. I went overboard in the beginning with everything Down syndrome related. I wanted EVERYONE I knew to know as much as I did about Ds...I blogged the shit out of it, shared every news article, joined every group...And then it just got to be too much. I didn't want my every thought to revolve around it. So I left all the groups I was in on FB, stopped all blog hops and theme posting, and just got back to writing about our family. Every now and then Ds is on my mind and I will write on it...But I've had enough with the all consuming thoughts about it! Three years later I finally realize that I don't have to teach everyone every damn thing, and Russell doesn't have anything to prove to anyone about what life with Ds is like. People can take us for what we are. That's it.

    Loved that you shared your thoughts on this :)

    1. Yes, that is why I am toning it down. I don't visit the Facebook groups much anymore and although will still post some stuff, I will be a little more selective. Today I had to wait a long time in the doctors office and when I have had to do this before I have found myself on edge a lot with all the attention Stella gets. You know, just waiting for someone to say something stupid. Well now that I am off my high horse I just enjoyed Stella and just saw her being her cute self. Probably how mostly other people see her......

      I am glad I shared my thoughts too! And thanks for the support!

  2. Well said, Anna! There was a big snafu on my FB wall about 3 months ago. As you know, I write my blog about Ellie which means I write a lot about Down syndrome and these posts feed directly onto my FB wall. I post a lot on my wall about Ds--inspiring photos, articles, and then the "my Ellie signed xyz!!!!". My husband's friend called me out--told me that I am too obsessed with Down syndrome and that I am missing out on my daughter. That I need to move on and enjoy her. I still feel, to this day, that he was wrong and yet, I could see why he drew those conclusions. I have been trying to get off my soap box because honestly, I am preaching to the choir here.

    So, what I am saying is, I love your post. I think that you are very honest and wise and have reminded me that I need to chill out. btw, I feel horrible for Olivia. Anxiety sucks :( If we lived closer, I would be sending you my carpet cleaner for Sophie's accidents.

    btw, sent you a FB message. It may appear that I am stalking you. I promise that I am not!

    1. Please STALK AWAY! Lol! I did not get your message on Facebook! Perhaps I need to check my "other" folder? Apparently that is where some messages go. I still plan on posting things on my facebook wall about DS, but I am going to tone it down a bit, more for me personally then anything else. I feel like I have been focusing too much on DS. Thank you for your kindness about my other two McG girls. Yes, I have been reading a bit about anxiety in children and it is quite common. I am going to buy some books and see if I can't get some good advice on how to help her. As for Sophie, she is getting better! No shitting on the floor today! Yay! lol! I wish we lived closer cause I would LOVE to meet you and Ellie! I think we would get along smashingly! Kindred Spirits, that is how I feel.

  3. It took a little while to get past the Down syndrome obsession. It's still present in our lives, but definitely not front and center. My blog has gone through so many phases, from the "here's-what-I-did-today" posts, to the Down syndrome posts, to the "I'm-just-gonna-post-pretty-pictures" posts, to the happy balance I feel like I have now. I post about whatever the heck I feel like posting about. :-) But, like I said, it took a little while to get there! I avoid those big groups on Facebook, too. I find too much drama lurking there. And, considering the vast majority of my FB "friends" are parents of children with Ds, I don't feel like I'm spamming my wall when I *do* post Ds-related stuff, and feel like I'm actually educating the ones who do not have a connection to Ds. So far none of those have unfriended me yet. :-) Win/win, I say! Btw, are we FB friends yet?

    1. I don't think we are facebook friends yet. I still plan on posting stuff about DS on my wall, just not as much as I have. As for being Facebook friends, let me know if you wanna be friends! lol

  4. I find it difficult sometimes to have a balance. Last year, I remember one of the moms from Babycenter gave up Down syndrome for Lent, and I thought that was such a good idea - she just took the time off from visiting all the forums, reading all the blogs, stressing and worrying and focusing on Ds in particular. I didn't ever do that, but I do mostly avoid the big facebook groups. Although sometimes I get consumed with wanting people to like me - mostly the Ds people that I don't really know on facebook.