Monday, March 21, 2016

Closer to Home

Dear Jules,
So often in life, it's the grand gestures that command attention.  I'm all about symbolism and grand gestures, so today, on 3/21, Down Syndrome Awareness Day, I went all out.  Got my nails painted--a lot of people at the nail salon asked me "why I liked blue and yellow so much," and I got to explain why I chose these colors on this special day.  "So," they asked me, "when are you going to do it again?"
"Next year," I said, "on March 21."
"Why March 21?"
"Because Down Syndrome is Trisomy 21, which means that people are born with an extra copy of the 21st chromosome--therefore, they have 3 copies of the 21st chromosome.  March 21st is 3/21, which is why it is DS Awareness Day."
It's amazing how many people don't know that...and how many people are too embarrassed to ask.

Honestly, I did not know anything about Down Syndrome before you were born, and I welcome the questions.  I welcome the opportunity to teach anyone about why you might do things a bit differently than others, and why I wouldn't have you any other way.

Those of you who follow this blog or my life know that I just ran a marathon to support LuMind RDS.  I took lots of pictures, raised $1780 for LuMind, including sales from Bravelets, and had a great time.  We even made the symbolic gesture of running across the finish line with you.
But today, I want to talk about the little things: the things closer to home.  You all know about my advocacy, but do you know that Ben practices letters with Julia every morning?  Even on their drive in, he has her practice her words by saying "Hello, mailbox.  Hello, water.  Hello, tree," etc.  And she repeats all of the words after him, even taking the initiative to say "hello" herself.
That's just one example of a little thing, closer to home, that is nonetheless as helpful (if not more helpful) in helping Julia live the fullest life possible.

The truth is that I hope to God that we will find treatments for Alzheimer's so that Jules doesn't have to deal with early onset, as 60% of those with Down Syndrome do.  I hope that we can find drugs that make it easier for her to learn, to remember (not, I must emphasize, to "cure" DS).  And these are all of the things I ran my marathon for.

But when Julia was one, not walking yet, we found that the solutions closer to home- the treadmill training I've written about in this blog, and especially the Charles Webb Center, were the things that helped you achieve your goal of walking.  I've written about the Webb Center before as well -- please read that post if you haven't.  The point is that they got you walking, they worked on your confidence, they worked with you day in and day out.  These people are rarely in the newspaper and, even when we do the Avondale 5K to raise money for them, they don't receive the credit they deserve.  But what they are doing is no less significant than pioneering a new drug or coming up with new studies.  They are working on everyday skills, helping people live their best lives...right here, right now.

And for this reason, I'd like to give a shout out today to the Disabilities Foundation of Charleston County.   Their mission statement makes me tear up, because it's exactly what I want for my daughter, and for all people (with our without disabilities):


The health, safety and well-being of each person
Dignity and respect for each person
Individual and family participation, choice, control and responsibility
Relationships with family, friends and community connections
Personal growth and accomplishments
Full community inclusion and participation

Dignity, respect, choice, connections, and inclusion are all things near and dear to my heart.  They not only run the Webb Center, but they also work to provide housing, jobs...and they have a bakery that employs people with special needs!

Again, it's not a grand gesture, but providing someone with employment, a place to live, a place in the community...these things are priceless.  So today, on World Down Syndrome Day 2016, I celebrate everyone that has helped Julia (and continues to help her) become the person she is, the person she is meant to be.

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