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.|