Thursday, June 28, 2012

The Absence of Down Syndrome

Down syndrome is.  It. just. is.  It's tangible, unchangeable, real.  It is our reality and the reality of our children and loved ones, and no matter how much we may rue some of the aspects of Down syndrome, we celebrate and embrace so many others. 

I've read, both on the Down syndrome Babycenter message boards and on other people's blogs in the last few weeks, people questioning whenWhen will they be "okay" with Down syndrome?  When will it stop being the first thing they see when they look at their children?  When will their children be "normal" and more like their typically-developing peers? 

I reiterate...Down syndrome is.  At first, in the beginning, I think I can safely say, pretty much all of us live and breathe it.  It's what we see when we look at our new children.  It's the first thing we think of in the morning, the fear of the future creating a large, iron ball like a huge fist in our stomachs, the last thing we think of at night, set to punctuate our dreams with uneasiness.  And the time in between?  Sadness.  I spent many a bottle feeding crying in my rocking chair, baby blissfully unaware.

I thought I saw Down syndrome everywhere.  It was present in the person whose back and shoulders I saw turning a corner, in the new babies I saw being pushed in strollers by their mothers, in the background extras on a television show.  Who knows, maybe I did!  But, more likely, I probably didn't

With time...TIME...the reality took more of a back seat.  Oh, Down syndrome was still there, but did I see it everywhere? 

No. 

My brain, once again, became crowded with everyday banality, the trivialities of this, that and the other thing that come up to occupy the space.  The day in and day out of being a mother, of working a full-time job, of being me. 

6 years into this adventure Down syndrome still is.  It. just. is.  I'm involved in my local DSA, I read blogs, am friends on Facebook with countless others whose lives have been touched by it...

But when I look at my daughter, I no longer see it

I see a precocious 6-year old girl, one that has a brilliant sense of humor, is smart, sweet, stubborn, silly, and has a smile that can light up the world.  Do I sugar-coat our lives on my blog?  Eh, that depends.  Because I don't. see. it.  My blog usually details some of the ho-hum, regular, every day things that we do.  These things do not center themselves around Down syndrome.  Am I shouting about how proud I am that she's hit a particular milestone?  Am I frustrated on occasion about something she can't do, or about a challenge we've had with something that is as a result of one of the aspects of Down syndrome?  Sure.  Because Down syndrome is still there.  My photos and stories are of my little girl enjoying her life, learning new things, having new experiences.  If that means that I'm sugar coating stuff, ignoring Down syndrome, so be it.  Why should I show the dust bunnies under the bed, the unkempt hair, the burnt toast?  That's not what it's about. 

And so, in the absence of Down syndrome from the surface of our day-to-day existence, while it still lives there, we move on.  We live our lives.  We do what we have to do to keep things running at the necessary pace.  We do what we want to do to enjoy ourselves and be productive.  We wake up, we go about our days, we go to sleep, we start it all over again.  We do not, any longer, live and breathe Down syndrome.

It's there because it is.  We are who we are because we can be.    

22 comments:

Anna Theurer said...

Excellent and well said, Becca!

Rochelle said...

and that is the way it should be! That is why I love your blog. Our lives don't focus on ds because truly I don't see it in the girls unless someone reminds me.

Yo Mamma Mamma! said...

Great post.

Lisa said...

perfectly said!

TUC said...

How can you not ignore it most of the time? It is only 1/47th of her makeup, so if you talk about it 1 in every 47 posts, then you are being more than fair to that extra chromosome :-)

ChaCHA online said...

Fantastic article, Becca! This is how it should be with any disability-- it is a part of a person, but it is not all they are about. Regular life happens to everyone, and it is the celebration of regular life that brings us together more than the disabilities that we blog about.

krlr said...

I've been mulling this over for a while - not just the grand "what does it all MEAN?" but what I do & don't put out there. About time I try to corral those thoughts - thanks for the push!

teal915 said...

I'm certainly no where near where I was when Kamdyn was born. But a lot of things still remind me of Down syndrome. It is completely natural and normal in my life now, but I still feel the "differences". I don't know if that's because I have other children and something to compare, or if it will diminish over time. When I was on my way to take Kamdyn for blood work today, with a knot in my stomach, it was there. Things like that have a negative feeling to them, but I mostly have fond feelings toward Down syndrome, because even though there are challenges, I feel like the blessings are so much more. And it is just a part of us.

Becca said...

I'm definitely not saying that it's *gone* but that it is no longer all-consuming. I don't see it when I look at my daughter, but that doesn't mean that I don't see her challenges and differences. She's certainly not just like her typical peers, and that *does* make me sad, but it's more the individual parts of her that I see, the challenges in bits and pieces, rather than Down syndrome as a whole. When I post photos of her on my blog, I'm not *trying* to make it look like we have an ordinary life. We *do* have an ordinary life. And I don't think that can be construed as denial. I think that's just our reality. I won't say that the differences get less, that the challenges dissipate, but that I accept them so much more as a part of her than I did in the beginning. :-)

my family said...

great post becca!
Totally agree... it is there but not life consuming

not long ago I was switching doctors and the receptionist was asking a thousand questions the last ? was meds he is on (this is long after I have told her just about W's life history mind you) I told her thyroid med and she was surprised b/c he is so young. Oh, I said, that is fairly common with people with Ds. She was shocked. OOps I forgot to mention W was born with Down syndrome, haha. I just dont think of that as a "medical thing" ya' know?

Kacey Bode said...

Perfectly stated!!! Every so often I have a Down syndrome day...where it is a forerunner in my thoughts, but those days are fewer and fewer. Like you when I look at my Ella I just SEE Ella!!!! Now Graves Disease I have some freaking issues with, lol. But...I guess just like with Ds it will become less and less of an issue.

Jenny said...

Absolutely beautiful...I love your blog because you do talk about Ds sometimes, you share joys or struggles...But mostly you show your amazing daughter Sammi, just living her life :)

LOVED this post!

Magikelly said...

I am sure you have been told this before but have you ever considered writing a book? Your writing style is so engaging and real and I think it would help so many people out there who aren't lucky enough to subscribe to your blog.

Cindy said...

Excellent post, as usual! I had forgotten about seeing Ds everywhere! I remember now, thinking SO many babies and young children might have 'it'.

And you're right, eventually you just stop noticing. They're just... kids.

Becky said...

Could not agree with you more...life just becomes your normal...and you forget really that Down syndrome is there. It surfaces every so often to remind you of certain things but then fades away... Replaced by the smiles and love of a wonderful child you enjoy every single day! Some people do think you are in denial...trying to maybe hide it...but what they do not get is to you and your family it is really not a big deal any more. No more pity needed here...life is our perfect, not theirs. :) great post...

Stephanie said...

Great post!!!!

And so so true!!!!!!

Ds goes from being all consuming at first to just... Ds.

I forget Em even has it at times. I remember we went apple picking last year and the man driving the hay ride looked down at Em and started talking to her and was so kind. He looked at me and said he had a family member with Ds. After he left I asked my kids... Can you really tell by looking at her??? They just laughed at me!

Meaning , she is just Emmie to us. A trouble making delightful ball of wonder.

Elizabeth said...

Amen Becca! There have been so many times when people will ask me if Abby has Ds and I am
Always surprised - not because they ask, but because they could see it without me telling them. Because I don't see it - I assume others don't. I also don't spend a lot of time writing about Ds, because my blog is about Abby, and that is just a part of her - it isn't HER. Excentlly put thoughts. Thank you for summing things up so perfectly!

The Holt's said...

Beautiful!

wendy said...

Beautiful post.

Leah said...

Really lovely post, Becca. And very well said.

Pallavi said...

so well written Becca..

Karrie said...

Great post, Becca!

A few weeks ago I was looking at Madi and was noticing her flat bridge on her nose, the almond eyes......and all of a sudden I thought, "wow! I have a child with down syndrome". What I once thought the "picture" of someone with Ds was, it is NOT my reality today! I sometimes forget that Madi has Ds.......she's just Madi! My beautiful child!!

I agree with someone elses comment.......you should write a book! :)