3.21 World Down Syndrome Day

I don't frequent this little hobby of mine much....my fingers have better things to do most days than click a keyboard.  Sometimes I'm drawn to a screen to work my heart out on some therapeutic level, but today...I can't miss 3.21.  Today I use this screen as a

way to slap you aside the head and stand alert, not just today but for decades.  If not for the world, then at least for Carter because you fell in love three years ago, which means you get to know 3.21.

3.21 is World Down Syndrome Day.  3 copies of chromosome 21.  I remember our geneticist showing me three copies on paper, I remember praising God for 3 copies of 21 instead of 18.  I had no idea what a stinking chromosome was and thought it incredulous that just an extra one could change an entire future...mine and his.  That was at a time where I couldn't even spell it right, Down syndrome.  I would spell it as Down's Syndrome, or say Downs, etc...didn't have a clue, but my mind held a lot of silent fears that took YEARS to work through.  This year was the first time I could bring myself to a function where a ton of adults with Down syndrome would be...I couldn't see them easily before this year.  Their similarities played into my fears like a well tuned orchestra, so I'd stay at the functions that held mostly toddlers (that took me a good year before I declared it fun).  Down syndrome is a label I fit comfortably with now.  It doesn't terrorize me anymore, there are aspects of it that scare the living daylights out of me i.e. the 50% higher chance of luekemia, the dementia, the early deaths, the things researchers are working like mad to find a cure for.  But the daily stares in every store we attend, they roll off my back now, the massive unknowns about his future, OUR future those are a thing in the past, now we plan, now we pray, now we look at our Carter and just live.

But today, what is Down syndrome to you?
~perhaps when you think of Ds, you envision Carter because you've met him here on a screen.  Perhaps you've fallen in love with his triumphs and you've memorized his pictures and you occasionally check in to see how his life is doing.

~perhaps when you think of Ds, you immediately go to the little yellow bus, you know the one.  You are pulling your eyes away from that group of young adults out on their "shopping day" at Target.  You want to stare, yet you don't want to.  Extremely awkward.

~perhaps when you think of Ds you breathe a sigh of relief because you managed to have your children and they are all healthy and God is so good.

~perhaps when you think of Ds you whisper, "I could never do that"

~perhaps when you think of Ds you think about chubby fingers dipping chicken nuggets into ketchup, or watching the boys slide down the slide together, or the times we've told the kiddos to share and play together...because we are living life together and you see Carter as Carter and somehow you've allowed us to live normal with you and you've said hello to Ds, you have gotten to know it, you inquire, and your family has accepted and simply lives around us.

~perhaps when you think of Ds you recall that childhood neighbor down the street that was tagging along in the distant and now allows you to be able to tell me "I had a neighbor once with Ds."

~perhaps when you think of Ds you are heaving sobs as you stare at an ultra sounds screen and are introduced to what are called soft markers and a little amnio leaves your world spinning out of control.

~perhaps when you think of spending your entire life holding that hand of someone who has Ds, perhaps you choose to join the other 90% of people who abort, who terminate, who miss out.

~perhaps when you think of Ds you are staring into the almond slanted eyes who stare back at you and call you mama.  Perhaps you manage the guilt of quiet fears and the moments where your heart will explode when the tiniest of tinies have been conquered.

~perhaps when you think of Ds the bagger at the grocery store comes to mind.  And you're a bit more patient with him because he tries a bit harder than the rest.

~perhaps when you think of Ds you are reminded of that one person you saw last week with Ds and you want to let me know of all the amazing thing that person has been able to do as an adult...

We all have our perceptions of Down syndrome.  When I was younger I was the one who never ever wanted to be touched by a disability.  Seeing those groups of people on those daily field trips gave me the creeps and I was certain I wasn't cut out to ever work with special needs.  Infact, I only took one special ed class in college.  Not. For. Me.  Now today, I tuck those special needs into bed each night, those needs have wrapped their fingers around my heart so tightly that I honestly believe my heart might just stop beating because it loves too much.

Down syndrome doesn't scare me.  I have far great diagnosis in my family that keeps me up at night suffocating me, but Down syndrome? Nope.  What do I want you to know on this 3.21?

Whatever category you fall into, know that Down syndrome isn't a sentence handed down, don't feel sorry for us.  I want you to know that people with Down syndrome live full lives, go to college, get married, some drive, hold jobs, and are happy, very very happy.  Down syndrome doesn't bother them, it doesn't bother their families.  It is hard, but isn't parenting hard for all of us?

What can you do on this 3.21? You are the mommy of that little boy who will sit by Carter the first day of kindergarten, open his eyes to different and his heart to acceptance, maybe you are the parent of that junior higher who stares and doesn't know what to do about that awkward red head and has the choice to ruin his day or make him soar..raise him to inquire and to understand that God looks at the heart.  Maybe you're Carter's employer, soften your heart, find ways to include, to employ.  Perhaps you are the church, walk along side us...hold hands and teach Jesus well, make Ds part of your community.  Maybe your son will be the one who drives mine to the prom with his girl, thank him for not seeing a diagnosis.  Maybe you're on that school board and what you decide really does matter, think it thru and consider all the people affected by your vote.  Maybe you're the t-ball coach who has never had a kid with a disability on your team and you're wondering why this family isn't over at the special olympics league.  Slow down, ask questions, perhaps be patient and maybe learn a bit from some needs, allow the team to learn and grow through the season.  And maybe, just maybe, it's your child who will become Carter's very best friend, it is your child I've prayed for since day one and to you I say thank you.

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