5 Reasons I Smile

The ultimate goal of this blog is to spread awareness and show how beautiful life can be. We have four amazing daughters. Our youngest was born with Down syndrome. If just one person stops here and leaves with a different, better perspective about Down syndrome, then it is worth it. Regardless, I have 5 Reasons to Smile!



Friday, March 21, 2014

3-21 Something extra

Today is World Down Syndrome Day...and it wasn't something I really thought about until I saw several of my friends on Facebook updating their status and changing their profile picture.  That prompted me to change my profile picture to a photo of Kamryn and I.  I know every year on March 21st, it is World Down Syndrome Day. I have known this for 5 years, but it slipped my mind.

I did not forget, but today is also Friday (which is exciting because we get to skip the homework routine right after school) and I literally just got back from an incredible 4 day trip to Boston with Diondray (getting in at 1:00 am this morning).  Therefore, after I got out of bed, excited to see my girls for the first time since Sunday, in the midst of all the hugs, getting ready for school and talking about my trip with them...World Down Syndrome Day did not come up, get mentioned or talked about.

March 21st
3/21
Three, twenty-first chromosomes
3-21
Trisomy 21
An extra chromosome, 3, 21st chromosomes

For some reason thinking about World Down Syndrome Day took me back to when Kamryn was 4 days old.  Diondray and I were in our pediatrician's office, who since Jaden was born has been all my girls pediatrician.  Doctor B does not always display the best bed-side manners, can be extremely opinionated and has rubbed me the wrong way on several occasions. However, with that being said, she is a great Doctor. She was holding Kamryn and reaffirming what we already knew, Kamryn had Down syndrome.  She knew that the diagnosis was a huge blow to me and that I was broken and she said, (with her hand resting on my shoulder),  "Andrea, you can do this.  I know you are great parents and will be great parents for Kamryn. I know your family can handle this.  I know that you will become a great advocate for Kamryn.  I know that you are going to be fine and Kamryn is going to be fine. You will be better than fine."
Did I mention that I didn't really get along with her, but I believed she was a GREAT doctor, so I tolerated her?  I can remember my inner temperature rising and I was getting angry as she continued to say thoughtful, encouraging words to me (and Diondray).   Are you kidding I thought!!!! The last thing I wanted to hear was that I would be a GREAT advocate.  I did not want to be an advocate. Not for this.

That was a little more than 5 and 1/2 years ago.
She was right. (And for the record, even though she is still very opinionated and we don't always agree, I have a very special place in my heart for Dr. B because of that moment in her office).  At times I feel guilty because I'm not really advocating or doing anything great to generate awareness or make the world better for people with Down syndrome or for people with disabilities in general.

Which brought me right here today.  To my blog.

Kamryn has Down syndrome.  Most of the time it's not something we think about, talk about, worry about or are concerned about.  Not because it's something we ignore, but because it's something weaved into our lives and it doesn't stand out or feel different for us.
It's Friday, it's March 21st and after school I will tell my girls that it is World Down Syndrome Day....
and we may do a little something extra because of that!

Life is fine. Life is beautiful. Life is what you make it.

2 comments:

  1. Beautiful post, but I LOVE that last line. It's perfect :-)

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  2. Life is indeed what you make it. Hugs to Kamryn & the whole Wiley fam from the Pikes.

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