WDSD 2017

Today is the 12th anniversary of World Down Syndrome Day (WDSD).  It is a day to celebrate the lives of those born with a third copy of their 21st chromosome, which is why it falls on this day (3/21).

More importantly, it is a day to commemorate the achievements–big and small–of those born with Down syndrome. A day to share that our loved ones with Down syndrome are people with goals and expectations who can greatly contribute to the rest of the world; that their lives are incredibly meaningful and valuable.

March 21 is more than likely an ordinary day for most people, but for those of us living in the Down syndrome community it has been described as a day of celebration.  A celebration of life, love, potential, hope, inclusion and acceptance.  Today we encourage unlimited possibilities in the futures of our children.  We are more proud than ever to share how Down syndrome has touched our lives.  We stand together to remind everyone that we are a strong community based on a sense of togetherness that is moving mountains.

People may honor World Down Syndrome Day in different ways.  Some people wear brightly colored or mismatching socks, while others wear blue and yellow. Some perform random acts of kindness, share videos, photos or blog posts. Some may not acknowledge or celebrate the day any differently.  All of which is just fine.

As for us?  We will be taking blue and yellow treats to my daughter’s annual IEP meeting which happens to fall on WDSD this year.  On a day where inclusion and acceptance takes the global stage, we will be attending an IEP meeting expecting the same for our daughter (thankfully, we are in a place where that happens). How’s that for irony?

Please know what this day may mean to many people out there like me.  Most of us long for the same opportunities for loved ones who carry an extra chromosome–equal opportunities and the chance to show what they are capable of.  A life without boundaries where they are encouraged to dream big and flourish; one where a chromosome does not solely define a being.

Do you know someone carrying an extra chromosome?  Maybe you are a parent, sibling, cousin, teacher or a friend.  If you could tell the world something about the person you know with Down Syndrome, what would it be?

I would say this:  Tessa is a remarkable person.  She is not more or less because she has Down syndrome.  Tessa is genuine, smart and funny; and she has unknowingly taught me a great deal about kindness and compassion.  

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To learn more about World Down Syndrome Day, please visit https://worlddownsyndromeday.org/

You can also make a $21 pledge at Ruby’s Rainbow to help support higher education of young adults with Down syndrome by visiting https://321pledge.org/

Happy World Down Syndrome Day!  

*This post is a collective post of past writings about World Down Syndrome Day on this blog. 

The Big K

On Thursday, Tessa will have her first day of kindergarten.  That’s right.  The big K.  I would be lying if I said I was not feeling a bit unsettled about it all right now. Thankfully, I am very distracted with other projects and deadlines so I am not completely focused on the fact that my firstborn is heading to school full-time for the next however many years. As excited as I am for her, I am equally as nervous. Even though she has been in school for two years, there is still a knot in the pit in my stomach as we gear up for this transition.  I have a hard time explaining it.  Like a twinge of heartache mixed with immeasurable joy.

She is so excited, and she talks about starting kindergarten in her new school all the time.  One of my jobs as her mom is to fortify her excitement and reassure her that this next adventure will be grand; while fighting back mama tears and worry.  Standard parent stuff, right?

I know, I know…I have to suck it up, set aside my sentimental baggage and just be there for her.  There is nothing I can do to change the fact that she is growing up. And thank goodness for that; otherwise I may have kept her little forever.  This is the first step toward her forever.  From Thursday on, her life as a kid changes and my life as her parent does too.  This is one of the things–not so long ago–that we hoped for, prayed for and dreamed about.  The first day of kindergarten.  I remember a time when we worried she might not see this day. Here we are, just days away, and I marvel at how it will go.  Now my hopes and dreams for her at school have shifted to her finding her niche, making new friends and progressing her education. And, more importantly, to continue to carry and sprinkle her infectious joy around like pixie dust to those she meets along the way.  

My girlfriend has a daughter two weeks younger than Tessa who also has Down syndrome. So she gets it…all of it. The age, the attitude(s), the diagnosis, the need for wine nights, and the roller-coaster ride we often find ourselves on together. She also knows why this new phase tugs extra on the heart.  This is the picture I text her today.  Just sending my girl off to kindy like…

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How long will it take me to leave her classroom after I drop her off that first morning?  I imagine longer than necessary.  You know, just in case she changes her mind about this whole school thing. I will also more than likely arrive entirely too early for pickup as well.  I take my role as “that mom” seriously.

Is everyone this beat up over that first big day or is it just me?  I kid.  I really will be fine.  Even if it takes three bags of dark chocolate Ghirardelli squares to make it through.  While the veteran moms are out celebrating and high-fiving each other after their kids are off to school (which I envy by the way), I will be eating my feelings in the corner booth of a little breakfast diner.  The rest of you kindy first-timer moms are welcome to join me.

Here we go…