Tuesday, October 18, 2016

Down Syndrome Awareness month Q&A

So, over on instagram  we're doing some fun and different stuff for the month of October - which happens to be Down Syndrome Awareness month!

One of the things we're doing is a Q&A.  I asked for questions and now I'm answering them!  Today's answer got too long for Instagram - and rather than cut it down I decided to just go ahead and blog my full answer.

Here goes.

Q: "What is the biggest misconception about Down syndrome, in your opinion?"

What first comes to mind is the idea that all people with Down syndrome require a lot of extra support.  When Zoey was denied the right to attend enrichment classes it hit me hard!  These people knew only that she has Down syndrome, they didn't ask any questions, they simply said "we aren't equipped for Down syndrome"!  So for us, not being "equipped" is like saying: we can't keep a close eye on your daughter, help her here and there with fine motor skills, be patient when she wants to observe rather than join in, or take the time to listen closely to distinguish what she's saying to us.  I don't know about you, but when I think of places that provide classes for children I feel like those are all things that should be a given!  Any child could require the same "extra" help as mine, but because of a diagnosis my child was denied - and that needs to stop!
I think the biggest misconception is the idea that people with Down syndrome are somehow incapable (in any way, shape, or form).  People with Down syndrome are accomplishing BIG things!  But ya know what, it's not even about that.  It's about assuming competence and giving people a chance to show you who they are (not what they can or can't do)!
Finally ... I fear that there is a misconception that people with Down syndrome must accomplish big things to be seen as equals in this fast paced society we live in.  Those of us parenting children with Down syndrome are doing so at a pretty incredible time!  We are seeing people with Down syndrome accomplish great things, it's exciting and it absolutely gives us a lot of hope!  but, after how far we've progressed in the last fifty or so years, I'd hate to see the scales begin to tip a different direction - to a new level of "comparison".  I've actually had people write to me regarding this and it breaks my heart!   Our kids are amazing guys, AMAZING!   ... it's not about reading or doing math equations, it's not about knowing all the dance moves or hitting a home run, it's not about awards or fame - they're amazing because they are exactly who they were meant to be!

Friday, January 1, 2016

Happy New Year!


It's 2016, officially.

I've decided to have a theme song this year, it's a song I've been singing for months.  The more I heard it & sang it, the more I found my own meaning within it.

I came to realize that Zoey is my "fight song".

Many people don't understand and I get it.  I have four children. Three beautiful and amazing humans came into my life before Zoey.  Three little heart throbs called me mama and depended on me before Zoey did.  Annicka, Jericho, & Liam are very much loved.  I treasure each of my children, please don't ever doubt that.  That said, life is different with Zoey.

If life is an ocean, Zoey is my "small boat ... making big waves".  Because of this little girl, my life -our lives- are forever changed.  She set "into motion" a life none of us could have ever dreamed.  She is that "single word" that can "make a heart open".  I've seen this happen.  People who have only just met Zoey have been overcome with emotion, in tears ... not tears of sadness or of pity, but tears of love because there's just that something about her that goes straight to your heart.

She's just a little girl, but she is my "one match" allowing me, us, to "make an explosion".

Explosions of love and adoration - toward her, toward others, and also from her.  She adores us in ways that can't be explained.  She can be a stinker and she's not afraid to be sassy to us, but if we tell her she's hurt our feelings you can bet you're gonna see her face fall, get an I'm so sorry, and receive a big hug!  Explosions of pride.  We are proud to have Zoey and proud to raise awareness of Down Syndrome.  Explosions of thought.  A million thoughts a day run through my mind.  Sometimes I write here on this blog, sometimes I take photos or make videos, sometimes I wonder what more could I do in the down syndrome community - so many thoughts.  Explosions of fear and then calm.  Explosions of worry and then peace.  Explosions of happiness, laughter, learning, growing, progress, milestones, skills, appointments, development, friends, and the purest joy I've ever known.

Over the years, there have been many "things I didn't say" and those things are absolutely "wrecking balls inside my brain".  I'm ready to "scream them loud".  As for the things I've been saying for all these years, feeling so unheard, well I'm going to keep saying those things ... "can you hear my voice this time?"!

Zoey is my fight song.

She makes me constantly want to be better.  To "take back my life" and not let it be full of things that aren't important.  To "prove I'm alright" by showing everyone that she is such a blessing.  Not once has she ever been a burden.  "My power's turned on" because of her and for her.  I can't just let others tell me how things should be for her, I am her mother and I have to know that I have the power to say no.  I have the power to stand up for what is right.  Always.  "I'll be strong" because she needs me to be and because I am teaching her to be.  I have to make the choice to stand strong for what I believe, even when "nobody else believes".  Some people think I'm a pushover, I've even come to believe this ... others think they've seen all the fight I have, but "I've still got a lot of fight left in me".

So here's to you, 2016.  A new year.  New goals.  New hopes.  New dreams.

It shall be a year of strength.  A year of new thinking.  A year of standing up and standing strong.  The year of my fight song. 

*lyrics quoted from "Fight Song", by Rachel Platten.*