March 21, 2017

World Down Syndrome Day 2017

 Trisomy 21, or Down Syndrome, occurs when an individual has 3 copies of the 21st chromosome. Therefore on 3/21 we celebrate everything that encompasses for individuals who walk this journey.  I was reflecting about where we have been the last four years and how its changed us and grown us and what its taught us about ourselves, our family and our world.  And I asked myself what does this really mean today?

Its a logistical nightmare.  It's an entire day each week dedicated to visiting therapists.  It means leaving my family one week every month so I can take Addison out of state to receive therapy so specialized he can't get them near home.  It means giving up who I am in order to become what he needs.  I used to define myself in lots of ways, including being a writer and a runner.  I used to enjoy reading a good book on a rainy day and journaling.  Photography and scrapbooking were favorite past times.  And let's not forget cooking and gardening.  But now I am just Addison's mom.  There is no time to be more.  Because as Addison's mama yesterday was two hours on the phone to clear up insurance issues.  And a trip for x-rays.  And three phone calls to his doctor.  And an hour in the lab to have seven vials of blood drawn.  

But it was also the pride of seeing his bravery through tests even though I could feel by the tension in his little body how very frightened he was.  It is the determination I see that brought him from unable to sit up to to running so fast I get winded trying to catch him.  And barely being able to carry him now that he weighs so much when a year ago we fought tooth and nail to keep him from starving.  It is in the giggles that never end from a boy who at once was too weak to find his voice to cry.  It means after four years of fighting through dysphagia driving by McDonald's and hearing him shout, "Hamburger!" And the delight of swerving across traffic to get my son, you know the one who couldn't swallow 1 ML, a happy meal and milkshake for dinner.  It is the joy of reading David and Goliath for the thousandth time this week and knowing he was deaf but now he hears and delights in the word of God.  It is the big squishy hug when he wakes up in a few minutes and the bossy voice that will point to the floor and sign for me to, "SIT DOWN HERE AND PLAY CARS.  NOW!"  
What does it mean?  This down syndrome thing?  It is daily knowing where he has been, the seizures, the brain injury, the deafness, the cyanosis, the dysphagia which make Addison's journey so amazing.  Because if you don't know where he has come from the wonder of all those ordinary things he does hold no wonder.  And that wonder, my friends, is what defines my world.  

Because there was a time when Addison's diagnosis and the list of all it may or may not bring to his life was so overwhelming.  The constant tests and therapies.  The constant warnings from doctors about what is to come.  Those things haven't gone away but they have become part of the rhythm of life now and we try to keep them in the background so what shines through is the amazing-ness of who our guy is.  
And I pray this is what the world sees, too.  When people look at Addison I want them to be amazed by his beautiful blue eyes that sparkle with excitement.  Excitement so big at times he shakes from head to toe.  Let the world see his enormous smile which causes even the biggest and toughest of strangers to stop in their tracks, smile back and even at times scoop our boy up in their arms because they can't go on without a hug.  Those hugs.  Let everyone understand how people sometimes have to drop in for a visit just because Addison's hugs give some kind of magic that frays all the rough edges from your day, melts the anger and anxiety, and makes you realize what life is really all about.  

Today I pray people will hear him shouting those words he fought years to get out.  Words that say, "Here I am!"  "Look at me!"  "I am wonderful just the way I am."  "Oh and by the way I think you are, too.  I don't care what kind of person you are.  What kind of day you've had.  I don't even care if you are the person who will put a needle in me.  I want to give you a part of myself to brighten your day.  And if you will take time to get down on my level you will be amazed at how much love I have.  This love I give so unconditionally and abundantly your heart will be filled until it explodes.  And you will love others all the more."
credit: susan schmidt
This love that we not only receiving from him but as we daily give it to Addison has changed the genetics of how we live and love as individuals and as a family.  A love and an understanding that has changed how we view the world, friends, strangers and even our great God.  A love that has redefined what matters and what doesn't.  A love that says get up.  Smile.  Go live every minute abundantly. Because you can.


  1. What a good looking boy! You have really struggled to get this far and it was worth it!

  2. What a beautifully written, deep and introspective your posts!!