Friday, June 26, 2009

2 years with Violette, 2 years with Down syndrome

Today was a day of celebration. Miss Violette turned 2 years old today.

I can't believe it. The day she was born seems like it was just yesterday. It is a day and a time that is etched in my mind, and always will be. When my good friend, my OB, Megan said the words "She is beautiful, she is perfect and I'm quite sure she has Down syndrome" I felt as if all the air and light was sucked out of the room. This strange thing - this scary thing - this unknown thing - had suddenly come into our lives. Down syndrome. Nothing would ever be the same.

Here are a few of the crazy things that fear and ignorance led me to think:

  • We would never go on vacation

  • We wouldn't be able to eat out

  • She wouldn't wear Lilly Pulitzer

  • She would be a burden

  • I'd have to "teach" her everything

  • We'd be in dreadful therapy all the time

  • She'd have major health issues

  • We'd love her in spite of the fact that she has Down syndrome

  • She'd be "different" from the rest of us

  • She wouldn't communicate with us for a long time

  • Life as we knew it would change

It is so hard to explain to anyone who doesn't have a child with Down syndrome (or a sibling or a grandchild) that for me, I was LUCKY to be The One in the 1 in 16 odds I was given that she would have DS. She is, in a word, extraordinary.

I was so wrong about the things I had feared:

  • We've gone on several vacations, including to Walt Disney World

  • We eat out all the time - she loves it and is very well behaved (most of the time!)

  • She wears Lilly Pulitzer when her mommy dresses her in it, and looks adorable!

  • She is a joy

  • She has taught me everything

  • Therapy is fun for her and I have loved meeting with and learning from her therapists

  • She's had only very minor health issues

  • We love her including the fact that she has Down syndrome

  • She's so much like the rest of us, and she so fits in with us

  • She has been communicating with sign language since before she turned a year old, and she signs over 70 words now, very clearly

Life as we knew it would change. I was right about this one. Every new little person in your life changes you. But I never would have suspected 2 years ago right now, that the change would have been wrapped up in all of the joy and humor this little person has brought into my life.

As a family, we've learned a new language. We all know many signs, and love having a cool secret language that we know. The girls know what "Down sind-wome" is, as Lilianne would say. The words which were so very difficult to choke out for me at first now roll off all of us as easily as we say Vivianne is left handed and Lilianne has curls. It is just a characteristic. It isn't a person. It doesn't define her. It is a trait.

I've changed - I am on the Board of Directors for our Local Down syndrome organization I know as much about the subject of Down syndrome as anyone really needs to know. I am a strong supporter of women online who receive a prenatal diagnosis that their child has DS. I know what a difficult time that time is, and what it is like once you get past it. I've also benefited from meeting many people with DS, including a woman who works at 5/3 Bank, who has been an e-mail pen pal to me. I've asked her a million and one questions about what it means to have Down syndrome as an adult in Cincinnati. This wonderful young woman's articulate, kind (amazingly quick) e-mail responses have told me that everything I had dreamed about for Miss V the day before she was born are indeed still possible.

Steve and I both now look at other children and people with disabilities. I see them now much more clearly, and I see how many of them are so cherished by the people who love them.

Tonight, a very sweet two year old had a birthday party. She wore a little hat. She blew out candles on her cake. She fed herself pizza. She went crazy over her presents. She thanked everyone who gave her a present. And she laughed. She laughed a lot. Just like any other two year old.

Thanks for reading this far. We'd love it if you would join Team Violette at this year's Buddy Walk The Buddy Walk isn't like many of the walks you may participate in. We aren't trying to find a "cure" for Down syndrome. Instead, the point of the Walk is to raise awareness for what DS is, and what it isn't, support families like ours (and they are amazing at support!) and celebrate extraordinary lives.

Happy Birthday Violette!


DownTownDan said...

Very nice blog. What a beautiful little girl! Thanks for sharing.

lbgriffin said...

What incredible, inspiring words from an incredible, inspiring woman with an incredible, inspiring daughter. It is such a gift to see you treasuring EVERYTHING about your life, just as I knew you would!

Ria said...

Very inspirational thoughts. Thanks for sharing. Your little girl is beautiful! I have a soon to be 21-month old son who has DS.
my blog: Bill and Ria

Anonymous said...

You made me tear up. And, thank you. As someone who has not had DS touch her life I'm happy to hear that it is not defining. I would have thought all the things you thought before Violette came into your life and am happy, through you, to know I would have been wrong.

ajrench said...

You made me tear up. And, thank you. As someone who has not had DS touch her life I'm happy to hear that it is not defining. I would have thought all the things you thought before Violette came into your life and am happy, through you, to know I would have been wrong.

Jennie said...

Missy - That was a marvelous tribute to a darling little girl!

one_plustwins said...

Happy birthday Violette!!! We are doing the same thing here today with the twins!! Great blog!

Heather said...

You truly inspire me!

Anonymous said...

I am Mom to a son (26 weeks pregnant), Isaiah who has been diagnosed with a 1 in 5 chance of having DS. I saw your comment on Thank you for sharing. Your words are very encouraging and you truly are supportive. Congratulations and Happy 2nd Birthday Violette! :-)

Csunshinegirl said...

This is SO beautiful. I think I feel the same way. It is funny how the unknown becomes known it isn't so scary and then becomes a beautiful thing!

Anonymous said...

Violette is beautiful. We just found out that my sister is having a baby with Down Syndrome, and the first thing I did was look for support groups so I can learn and help as much as possible. I know it's not politically correct, but we are a little scared and don't know what to expect. Your blog is tremendously helpful and reassuring.

Cole said...

I've been going back through your blog to make a list of links I need to spend some more time reading and when I read this I chuckled- I just bought Abby her first Lilly Pulitzer. Now reading this I realize the problem is I don't have my own!

ds.mama said...

Beautiful post. Amazing what our children teach us, isn't it?

Caity said...

it's funny, I thought all of the same things when my son was born 8 months ago and the doctor told us he had DS. Amazing how they "teach" us more then we could ever teach them.